Question from a member: Does anyone know anything about LDN (Low dose naltrexone) Has anyone used it for Fibro?

*I have been on it for 3 1/2 weeks. So far no improvement, but I still have high hopes.

*here is info on the ms society website and whilst it's not Fibro specific obviously, it will probably be able to help.
MS Research

*more recent update: More Recent update

*My daughter-in-law's mother works at a pharmacy. She said they had been getting a lot of requests (it is compounded) and feedback from patients saying they had gotten good results from it.

*When I go to my doctor this week, I'm going to talk to her about it.

*I was going to ask my rheumy about it, but never did. you have to make sure you are off all of your opioid drugs before you can take it, since its a drug designed to help people get off of heroin. I have an article somewhere on it, ill find it for you.

*It was patients with Fibro with the positive feedback! The doctor has to write a script, it is compounded.

*ME/CFS BLOG

*What LDN has been used for

*Who is lucky enough to get opioid drugs? Where you guys from? UK?

*I've been on it for two or three years. You have to go to a compounding chemist that makes it up from the pure stuff and doesn't just crush revia tablets.
The revia tablets apparently are slow release and you need it to hit all in one go so that you get your stage four sleep. Before I started taking it I was waking up in the morning not able to move I was so stiff and sore.

It took a while to adjust and the adjusting period wasn't nice (nightmares, feeling worse, bad sleep etc), but I hardly ever feel that bad in the mornings now. I tried to go off it recently at my doctors suggestion because he didn't think it was working any more ( I knew it was but it's so expensive I thought it was worth a try) and I felt so bad even after a few days that I went back on it as soon as I was able to.

Within a few days I felt better. It's not a cure-all but it certainly helped me get moving in the mornings a lot better. I really think it is worth giving it a go. Aside from the initial getting used to period I don't think I suffer from any side effects from it. 4.5 milligrams (gradually getting to that dose helps) seems to be the optimum dose.

I'm in Australia and it costs me over a dollar a day to be on it and as much as I struggle financially I am willing to pay the costs for the benefits I get from LDN. They do have a website you can check out. It is most useful apparently for people with Crohns and MS, but it does help a range of illnesses.

*I started @ 4.5 mg one week ago, and my response is wonderful. I've had more energy in the last week than I've had in years. I noticed a change by day 3.

*www.LDNscience.org is a new website. I brought the report of research from Stanford to my doctor and asked for a Rx. It can take a while to get the dose adjusted.There's a lot of discussion about LDN on Patients Like Me. Search LDN

*I'm really pleased you asked this question, this is my mission for this week to find out more about this drug. Certainly causing a bit of a stir!! xx

*Problem is, it causes bad insomnia.

*You take it when your tired, as your head hits the pillow. It increases endorphin production in 2-3 hours. I take Melatonin, Valerian and Benadryl an hour before bedtime. I plan to stop the Benadryl in another week and see how I do.

*Does anyone have a good solution to sleeping through the night? I have tried many things, still wake up every 2-3 hours. I'm exhausted! Dr just shrugs it off, calls it insomnia, but hasn't given me anything for it. Don't need anything to make me gain wt, I can do that on my own thanks. I'm already on morphine, cymbalta & clorazapate. I NEED A GOOD NIGHTS SLEEP!!

*Get you some xanax and trazodone. You will sleep with it, if you don't something's wrong.

*My DR. has given me elavil, it has helped a lot with my insomnia and also helps with migraines too!

*I take 100 mg of Trazadone at night, I have xanax but don't need it with the Trazadone

*Been on LDN for 3 weeks now with zero change unfortunately. I am really at my wits end. I had a sleep test to and the doc was really insightful - said I am not sleeping well because of pain. WOW. REALLY? I could have told you that??

Then he sent me back to my rheumy. Rheumy said well that's the nature of FM and you don't really want anything
stronger than lyrica do you? So his answer was to increase my zoloft (which also had zero effect). I am up all night, then I sleep all day. What kind of life is that.

Sorry to be a debby downer, but I am beyond frustrated.

*Trazadone.

*I was put on lyrica 6 months before my Dr acknowledged and documented the word Fibromyalgia in my medical records. He put me on lyrica for diabetic neuropathology. I have since had 3 dosage increases to the maximum. 450mg per day its worked great for me for a while. It is said it is believed Fibro is the result of over active nerves. I completely agree with that statement.

when my nerves are on edge I have more pain n tenderness. I have since been put on muscle relaxers n klonopin I'm feeling less tension in my muscles and my nerves are calmed down. for sleep on I'm on ambien when needed.

if you take it every night it loses its effect. I alternate the ambien klonopin and muscle relaxants at night for sleep. last night I slept 8 hours for the first night in over a year. I'm from USA

*I used to be up all night and wouldn't be able to sleep more than a few hours, which turned me into a zombie! The gabapentin helped with the restful sleep but not the insomnia.

I decided to wake up at 7 every single day, no matter how much sleep I'd had or how exhausted I was. It has really helped me get to sleep at a more normal hour. It's worth a shot for you insomniacs. Takes a while and you feel dreadful in the meantime but I am sleeping 100 times better than before! x

*I think I feel bad enough, I work 4 hours a day 4-8:30 PM so I cat nap during the day. I would rather sleep in snatches then put up with ONE MORE THING!. Not screaming Just frustrated. Morning is the worst possible time for me to do ANYTHING. Need wooded hiker pole to get out of lounge chair which is also my bed, No strength to push foot rest down, much less get up without tipping over onto something. No more testing any thing for me. I am at my limit! I am from North Carolina. USA

What hobbies are you still able to enjoy?

*I still go to watch footie :)

*Reading, writing, photography.

*Dress making,knitting

*Reading, keeps me sane xx

*I can still enjoy most of them. On my good days! I have learned over the years to listen to my own body. If it says " no bike riding today". I listen!

*Making candles, baking, taking photographs

*Bit of light gardening

*Writing, singing and baking

*My dogs and taking my children plus dogs away in my camper van.

*Art class, piano and crochet when I am able :o)

*Wood model trains, kites

*Watching football, although it reminds me that I can't play any more.

*Tarot, running my websites, Open Uni study

*Open Uni study and a little photography, plus I volunteer tutor for the NHS for people with long term conditions, which I really wouldn't have had the opportunity to do if it wasn't for FM

*Photography and photo editing but cant get out and about as much as I would like.

*Painting and drawing.

*Walking, reading (when I can hold the book, its an awkward position to hold my hand in for extended periods), cooking, kite flying, picnicking (I can incorporate all my favourites into that.) watching films and cuddling.

*When better, I'm still able to enjoy photography and cinema. Photography is more demanding overall; watching films is easier for me, especially when noise sensitivity and brain fog have eased some. xx

*Photography as Long as I don't have to crouch down lol

*Reading, watching my daughter do everything, watching films when I can stay awake long enough & it isn't too loud also I have been trying to do some gardening I cant do a lot so I pick out what I want to plant & my husband does it for me.

*Well I can still do my degree and learn languages (when I can concentrate!) I read (when I have the concentration and can hold the book,) nothing else really lol

*Playing with my laptop.

*Reading occasionally when I can hold a book and not fall asleep. no more swimming or cycling as it hurts too much. I do lebed exercises though,

*camping reading and very little cross stitch.

*Well cant parachute any more or bungy jump but I do still enjoy the odd wind up xx

*I do low impact aerobic exercise when I feel OK, take the dog for short walks, study for my correspondence course, eat & drink & be merry!

*With large gauge needles. I make squares and sew them into cubes! :) Mines called 'Tarquin' and the one I made my friend is called Bob.

*I crochet all the time. It helps keep my mind off of pain so much!

*I'm trying to teach myself to speak Greek but only on days when I can concentrate. My partner is Greek and it would be lovely to know what he is saying. I don't like being kept out of the loop! He usually speaks Greek when he is romantic or talking to our granddaughter but also when he doesn't want me to know something! I still need lots of practice!

*Reading, swimming, and walking my dog!! :) Simple pleasures.

*A new hobby since I'm unable to do what I used too. Playing games on Facebook.

*Reading and on good days going to the cinema or out for lunch, don't even get to walk my dogs any more.

*For those with trouble reading because of holding books, many disability supply companies offer book holders. They are a great help.

*Reading, writing, doing an OU course (when I can concentrate), crosswords, su-doku, and drinking tea with friends :)

*Drawing and reading x

*Card making, scrap booking, cake decorating and love reading sometimes struggle to hold hardbacks and really large paperbacks.

*Scrapbooking, reading.

*Reading a good book and going to garage sales.

*Paper-crafting on a budget, makes you inventive. Books, sometimes reading, sometimes listening. Movies, thank heaven for Lovefilm as I can no longer go 2 cinema.

*I read but don't retain it all, computer, many things I wish i could do but can't afford it. My hobbies are expensive.

*Used to make dollhouses , do DIY and many other hobbies but can't always play with drills now, so started card making keeps me busy and is relaxing.

*Reading keeps me sane. Watching football is sociable and the most exercise I can do is palates but I remain hopeful that I will ski again!

*I customise walking sticks and crutches.

*Reading, computer, genealogy, sewing and quilting, that's about it.

*Photography, going to the zoo.

*Reading, knitting and watching movies at home.

*ZERO.

*Knitting, crocheting, reading,computer now that I have friends on FaceBook

*A lot of crochet when my hands aren't stiff!

Citizens Advice press release

Seriously ill and disabled people pushed into seeking work without any help or support
Read the report here

Here's the replies this report generated on our fans page:

*I was found fit for work after my medical assessment for ESA.....I am currently waiting for a tribunal date. Makes me laugh as I have since been awarded higher rate mobility and lower rate care DLA, system is bonkers!!

*I'm actually stunned I made it through my ESA assessment without a problem. I was a bit confused about what it was, you see. I thought it was an assessment where they chose what sort of work you could do. I was so bitter about not working I was dead excited about it and rabbited on at my assessor "So, what sort of work can I do?" He looked quite stunned and after assessing me decided it wasn't in my best interest to go back to work after all.

*I have to work part time because I can't physically manage to do full time hours with my Fibromyalgia and Joint Hypermobility. I get NO financial help at all. The system is failing us.

*Joint Hypermobility? Is that a trait of FM or something separate?

*It's awful I'm so thankful I can still do part time and survive by making cuts at home. Am dreading the day I can't work any more.

*I get lowest rate DLA so don't have to work yet, but get this, I don't get it for any fibro symptoms I get it because I have peripheral neuropathy in my hands and there for cant chop/prepare foods alone.
The fact I cant tell if water is hot or cold,that I fall over,that I can't lift or carry or that I can't walk more than a few yards without stopping are not even considered! Makes me so cross as I know I would pass their examinations to go to work if that's the case.

*It's something separate. I've had HMS for years but the FM is more recent.

*"Joint hypermobility, can be a co-morbid disorder with FM, but it is also a stand alone illness like a lot of the multiple problems we suffer.

It is an autoimmune condition where the connective tissue gets weakened in error by your own immune system and the joints become loose and 'hypermobile' from the weak connective tissues.

Like a lot of things it can be mild right up to debilitating in range.

I have it to a moderate degree and most of my major joints crack and 'pop' all the time. You'll often get Costochondritis with it as that affects the ribs and breast bone etc, and caused intense pain that really closely mimics cardiac pain. Costochondritis is often termed as 'Non cardiac Chest Pain, which is a little vague and can give 'others' or 'Joe public' the distinct impression that nothing is causing I which is patently false where Costo' is concerned.Costo' is a much more precise and helpful and settling diagnosis.

I have costo' pain throughout every day, and was treated with scary powerful meds for 6 months for severe angina until a battery of tests and 7 visits to A & E ruled out cardiac problems then they stopped the meds. Costo' is scary first of all and then just downright excruciating ever-after.

I find this one of the worst parts of my fibro, and a painful ribcage and pain in all the costochondral joints is so restrictive, you just don;t realise how much the 'fixed' parts of your upper body move in all and even simple everyday activities.

Joint hypermobility can get progressively worse over time, and if severe enough, surgery can be an option, if say you are continually dislocating a shoulder or knee or ankle etc.

So yet another lovely potential problem for us all to worry about, if you don't have it or to deal with if you do have it like me. I'll pop a joint and be in agony with a very sore joint that I canuse any more than gingerly at best. I have become aware of a slow progression in the severity of mine and saw a musculoskeletal consultant privately to get some gentle strengthening exercise tips. They haven't helped much, but then again they may have slowed it and had I not done them I'd be worse now? Fibro only knows.

As always there is little chance of being certain with so many unknowns and very few medical professionals with a genuine interest, at least not on the NHS anyway.

Don't forget we are all different of course so there is no assurance you will get this, nor if you do of how bad or manageable it will be. Know your own body and push for treatments until you exhaust everything available on the NHS for free, before heading down 'other avenues' many are lucky in the sense that they can cope with prescribed drugs and can move on as best as able.

Good luck if you are showing signs, in finding a treatment that works for you".


*I get lowest level of DLA and want to cry about it, we have so little money, I can't even afford to buy things like the pads for my tens machine, but hey - although they accept I can't work cos I didn't go back to work when my sons were tiny. I can't claim any benefits except for the meagre DLA.

Thank God I have thyroid problems which means I get my prescriptions paid for. Without that I would be finished off for good!

*What about Americans, where do we go??

*I think it's shocking how we have to PROVE how ill and disabled we are to claim a benefit and not get pushed towards job seekers allowance.

I have already endured my ESA medical assessment and now have the verbal medical assessment to look forward to. I will then be told by THEM if I am fit for work or not.

I'm still fighting to get DLA, so am struggling to live and support my two children. What can you do??

*"I have Fibro and osteoarthritis and I also suffer from panic attacks and depression. I have been registered disabled for 21 years and have been in receipt of D.L.A for 20 years. I get full rate mobility and care premium, in may last year my partner of 30 years met someone on the internet and walked out on me. Because my circumstances had changed as I was now single,I had to put in a claim for ESA.

I was sent for a medical assessment and I failed to get any points at all and the doctor who did my assessment lied over and over again. I am now waiting for my tribunal to be heard and I am getting £71 a week ESA.

The stress of all this has made me so ill, I cant eat, or sleep and I am very depressed. Why are they allowed to treat people like this? And why are we called liars and even worse the medical teams that have treated me for 21 years are being called liars too. It is absolutely disgusting and unfair!! gentle hugs everyone" x x x

*"I feel so sorry for you. I have fibro, degenerative disk, scoliosis, and more. I am forced to work to pay our bills, no point going to ask for disability in America cause I had a friend who had a leg missing but was told she could still work.

No wonder when I get home I do not want to see anybody. I do not want any company. I have lived in the same place for ten years and had 3 visitors beside the guys that fix broken stuff for the complex".

*It's good that such a respected organisation is making a stand. Oxfam (which also provides claims advice, strangely enough) have produced a similar report with similar examples.

*"Had my review for incapacity last week as they hadn't seen me for around 3 years. Had to go to a job centre in Eccles (I live near Salford Quays) and they won't refund taxi fares, only bus fares.

The advisor I saw didn't seem to be interested in my condition,all she wanted to know was what job I thought I could do,and had no idea about Fibro or what it took for me to just get to the appointment in the first place"!

*I did the same thing 2 weeks ago for the second time. This time I took in books and anything else I could get my hands on to show them that I have a" real problem."
Just waiting to hear back they said I qualify, just waiting on the confirmation letter.
Don't give up! its hard I know, trying to get people to understand or believe us. xx

*Hi, I went for my review a few weeks back I live in Hemel Hempstead, they wanted me to travel to london on the train, I refused and got my GP to write a letter they sent a taxi for me to go and come back

Appeal against them not refunding your fare my letter said I could claim for taxi fares as well I'm glad I didn't pay as my fare would of been around a hundred pounds. I was told, good luck with the outcome, the advisor I saw didn't even ask me any questions he just typed what was on my form on the the pc.

Question from a member: Cannabis?

I'd be interested to know if anyone else uses Cannabis to help them cope? I'm curious, have any other members have had success with this 'controversial' medicine?

*my mum and I've tried it once but I didn't like the feel so soon put a stop to that ive known a cancer suffer use it to in his last stages bless him.

*It would be interesting to find out if it works !!!

*Some MS sufferers use it

*I have considered it but a)it is illegal and b)side effects

*I tried it. found it helpful but wasn't comfortable doing it illegally and not cheap either.

*I have used it and it does help the pain and my muscles seem to relax more than they do with muscle relaxant prescriptions. My local "herbalist" keeps me supplied.

*Never heard of it.

*I agree, it helps the pain and muscles. Wish I had an herbalist! I would certainly make use of that option.

*The other day I could barely move with the deep aching pain in my lower back and hips, went to the local 'herbalist' legal medically in CO and went from non functional to functional. Mother natures medicine I say, safer the the pharmaceuticals in my opinion.

*As you know I smoke a joint every night to help get me off to sleep, it also helps dull the pain and makes me more comfortable. Another thing it does for me is change the exhausted feeling in me; how to explain?? it still makes me tired and sleepy but without the sick feeling exhaustion you get.

*Its a pity it is illegal in UK but available if you want to break the law. I do not smoke and do not want to start but I have 'eaten' flapjacks loaded with it and I couldn't believe the goodnight sleep I got and in the morning I was not as stiff or sore but felt fine, got a lot more done. I do not use it now it has changed to a B category. I do not want to get others into trouble.

*Can't even stand the smell of it, wish there was something else.

*I used to, and it does help with both sleeping and relaxes your muscles. It also helps with the nausea from the medications.

*I haven't tried it since it is illegal but heard it does help. if it became legal for medical purposes I may be willing to try it.

*Hate the stuff.

*My friend has tried it and says it does help, but I haven't so cannot comment myself.

*A discussion on the subject with my GP revealed that not only can it help with pain, but also nausea, which I suffer with quite badly. Wouldn't it be nice if MPs stopped treating us like children and deciding what was good for us and allowed it to become medically available for those in need? Personally I'd rather take one medication instead of several, but since it's illegal...

*I lived in California when I got Fibro and first thing the doc asked if I wanted to be a Medicated cannabis user, it helped with everything, helped me get out of bed play with kids and feel normal but it was too expensive.

*I have tried cannabis, and I found that it really does take your aches and pains away or at least to a lower level of pain. I also slept like a baby that night, best night sleep I had, had in a very long time. It made me giggle a lot too. However I didn't like the side affects of feeling paranoid. But in my opinion, I did find it helpful and I would do it again.

*In a tea, as a sleep aid

*Helps a lot and you can get it as oil if you hate smoking.

*helps a lot especially with getting sleep as I don't sleep.

*If that's how you cope you with the pain fair enough even though I don't agree.

*Its me again its my hubby who's got Fibro and he's got bipolar so how do you think he copes with the pain and his mental health its very difficult.

*Like with many medications/drugs, what it does for one it may not do for another. It is definitely an individual thing. Also, sometimes it makes me feel one way and other times it makes me feel different. Definitely not a constant affect.

*If it was legal - I would for the really REALLY bad days.

*I've tried it and it defiantly helped the pain, helped me to sleep for a few hours too, downsides were the cost, the taste of smoking it was horrible. Tried making cookies but needed about 4 to get any effect and who can eat 4 cookies in one go, not me plus of course I got terrible case of the munchies and would eat everything in sight, so good and bad:)

*No because it's illegal plus I have bi-polar so not a good idea.

*It may help, I haven't tried it but don't forget the side effects, paranioa,memory loss ( which we all have already ) plus the awful smell! I'll stick with my meds thanks. But hey if it works for you go for it.

*I'm impressed that you can't manage 4 cookies in one go - I could eat a tray full!

*I've considered trying pot in food cos I hate smoking but, like others, I'm worried about the effect on my mental health.

*Montel Williams has spoken out on this issue many times - he would like it legalised for medicinal use. He uses it to ease his MS symptoms.

*I find it very helpful. takes the edge off my pain and keeps me mobile. much better than the legalised heroine the doc's want me to take. also a wee toke isn't addictive, unlike legal meds.

*There is a legal form or cannabis, it comes in a spray form and is called SATIVEX. generally prescribed for people with MS and cancer, although I've heard of one lucky FM sufferer who managed to get it prescribed through the GP. I asked my GP but he wouldn't prescribe it even though my pain specialist recommended it.

*In small amounts it can help tremendously by relaxing the nerves and muscles. But too much and it makes me feel worse. Nancy, be VERY careful about SATIVEX. Maryland is cracking down and making Sativia (which is the same thing) illegal as there is no regulation.

If you happen to live where cannabis is legal through a dispensary, there are many, many options to take it other than smoking it. Peanut butter, candy bars, cookies, drinks, etc. They also make what's called a vaporizer that produces no actual smoke, just vapor - no smell, no harshness. Again, its a very personal thing. Just like some remedies help some Fibro sufferers and others that make no difference at all.

*I did try Cesamet,marijuana pills,they hurt my stomach badly! I have tried smoking small amounts. It does take the edge off and works if you only have 3 to 4 puffs. It helps with pain, sleep and appetite but is still illegal and if you have to buy it,it can be costly but lasts a long time if you grind it in a coffee grinder and use a pipe!

The cost is the biggest thing! Also one very important thing to remember, there are many kinds of marijuana, some make you sleep,some work well on pain and others have bad side effects. Doing research on this will tell you which one to use, sorry can't remember what kind it is that just works on pain!

Question from a member: I'm interested to know how fellow fibro sufferers deal with insomnia?

*I have suffered this for a while lately and have ended up being on the computer till 3 or 4 in the morning I'm going to DR'S to as for some amitriptyline some others have commented that this helps them get off, Boy I hope so I'm so tired. Hope this helps you.

*Amytriptaline low dose (10-30mg).

*Not yet diagnosed with Fibromyalgia, having the test in 2 weeks. Meantime my doc. has prescribed Amytriptaline for me. I start taking it tonight, so here's hoping I get a good night's sleep.

*I also use Amytriptaline.

*Walking, that is the only thing that helps me get a good night sleep. On days I feel up to it walking until I can't stand it any more. I sleep like a baby from the fresh air and exercise! Nothing pill wise works I have taken: melation, elavil, sonata, lunesta, ambien, ambien cr, vistaryl, benadryl, halcion, temazapam. I may fall asleep but can never stay asleep. The walking is what helps, but that is only a few days a month I can get out to do that. I am waiting on summer when I can swim all day! I always sleep well in the summer!

*I take 5-HTP for the insomnia, Klonopin for restless legs and periodic limb movement disorder, and Zanaflex for the muscle spasms in my back, so I can sleep for a while without back pain.

*Take the amytriptaline an hour or so before you plan to go to bed and don't do anything which may keep your mind too active - should get you sleepy.


*amtriptaline will take a while to start working, don't expect to sleep well straight away, but keep at it, it does help.

*Amitriptaline didn't work at all went up to highest dose possible and no effect what so ever :(

*Good question and one I've been experimenting with for some time but I have 2/3 versions that normally help.
1. I eat grapes about 1hr to 30mins before going to bed plus I also drink a glass of water or squash. I dunno why it works cos its an odd combo but it does! not all the time but it does work!

2. An old remedy, warm milky malted rink like horlicks or something similar, not chocolate though as that, I find, has the opposite effect.
3. I use a massage oil, usually lavender but one that you like is best, warm it in your hands first and then massage your temples, forehead, back or the neck and pulse points and while you're doing that try to relax your body either by meditation or soothing music. They all have varying degrees of success at different times but I find something along these lines normally work for me. I hope that helps x

*Either a sleeping tablet - but Dr only allows me 5 a month( so keep them for times when I must be awake the next morning) so mainly up and on laptop or if able doing bits around house - amytriptaline does nothing for me. Just pulled my 9th all nighter in a row with hardly any sleep during day at moment, just a no sleep period but no energy either so in bed a lot except when hubby goes to bed then I must get up or lie awake in the dark - although some nights so exhausted I do that till he gets up.

*My insomnia is usually caused by being in pain, sometimes a pain meds help. Also simple things like to check if you are too warm in bed and lower the lights in the lounge (and on your PC if you do that in the evening) for a while before you go to bed.

*If it goes on for a few days I have to increase my dose of Nortriptyline (like Amitriptyline but more gentle).

If that doesn't help then it's time to see Doctor for a small amount of Diazepam to get my body back into correct sleep/wake cycle. I have heard Melatonine mentioned recently for sleep but I'm not sure if you can get that in the UK - I haven't looked, yet!
Hope that helps :o)

*I too suffer from insomnia along with dreadful bouts of fatigue - at the moment I am going through the fatigue stage, and can sleep up to 18 hours a day,which means I can barely manage to do the basics like make something to eat or dress as I just do not have the energy. Bizarrely I function much better on 3-4 hours sleep a night as I seem to have much more energy to do things and can also manage not to sleep during the day. I am odd!

*I use Trazadone to go to sleep. Its actually an antidepressant that makes you sleepy and works great for me. I have a ritual of taking one hour before planning to go to bed to relax, no TV, nothing stimulating. And start a slow meditation beginning with my feet. My feet are relaxing, so relaxed and move my way up. Usually, by the time I get up to my stomach, I am on my way to la-la-land.

*I use trazadone, which is similar to amitriptaline, does any other Fibro sufferers use this?

*I find reading a book helps my eyes get sleepy. Long, hot bath & milky drinks good too.

*lunesta or flexeril does it for me.

*I just pulled an all nighter and then took a half of vicodine, I don't think I'm qualified to answer this. I've never dealt well with the insomnia. I'll stay up for hours on end reading books, or playing puzzle games.

*I have the same problem I can be on the computer till 3-4am some nights if I'm not that tired, but I have started to come off the laptop about midnight and then turn the telly off too and just read a book for a while till my whole body feels relaxed inside, then I can finally just drop off to sleep when I'm that relaxed, I don't take any tablets to help me to sleep at night.

*I never sleep before 2am and that's if I'm lucky. I watch the TV and cross stitch until about 1am and then read a book and relax for an hour before trying to go to sleep. I used to take some sleeping tablets but didn't like the feeling of being really dopey the next day (well even more dopey than I usually feel!) Don't take anything now.

*I can usually get to sleep after a while (unless its a bad night!) I find it's just a mixture of can't get to sleep, can't stay asleep, wake up in pain, DREAM all night every night and not feeling like I've slept, help?

*Snoreeze nose strips for snoring husband helps me sleep too!!!

*I have the problem of dreaming and not feeling like I have slept, the dreams are always of something stressful?

*I use amitriptyline, low dose 10mg, gets me off to sleep, still wake up if kids call me but go straight back off again, not like I used to be, lie there awake all night, told to take it 12 hours before I want to wake, so take it at 6.30, by 10 ready to sleep and wide awake in morning, great!

* meditation, not medication.

*I use Zimovane between 3.75mg / 7mg. I try to only take 1 (3.75) if I can as I go wondering around the house sometimes in the night on two.

*My dreams just seem to use my energy instead of sleep restoring me! I'm fed up of dreaming, they don't even make sense most of the time! I tell my boyfriend and then realise how weird I sound!

*I try not to loose any sleep over it!!

*Rescue remedy night time spray works well for me x

* Hi, I did use amitriptyline got up to 75 mg in the end still did not sleep, suffered more with the side effects, they did work in the beginning just not any more.

*I play farmville and countrylife :-)

*not sleeping. Dreams,restless legs, etc, we are a sorry lot!! When will it all end? I haven't had a good nights sleep in years! I'm still on Amitriptyline,75-100 mg,and its getting as bad as in the beginning!. I'm quite confused now as to what to do next?? hugs to everyone!

*I use Trazadone, Baclofen, Lyrica and Sinemet CR for the restless right before I go to bed, but it's all a gamble, some nights there's just nothing that's going knock me out short of a frying pan!

*Every night I cannot sleep. I have tried Ambien, Ambien CR, Lunesta, Soma, Amrix, Amitriptyline, Trazodone, Doxepin, Rozerem, Valerian root, and some other kind of natual sleep aid that I cannot remember the name of. They all seem to stop working after a few days.

*I've been having troubles sleeping the last few days, it's been making my long days at work even longer. I'm so emotional from being so tired. I used to be on nortriptyline but it made me too tired during the day.
Now I'm on 300mg a day of Gabapentin. It was working but now it's not. I don't know if it's just from being so stressed due to me moving this weekend and currently looking for a new job.

*Best thing ever Cherry Active! I used to sleep 2 hours a night after taking this natural cherry juice no additives no preservatives I slept 7-8 hours a night and it counts as your one a day fruit intake. Mail me for more details. X

*DRUGS.

*I also use antihistamines, the drowsy ones, they send you right to sleep, but I only use if desperate as they often leave me with a medication 'hangover.'

*would like something but amitriptyline gave me horrid nightmares and sent me to a very dark place. any other ideas?

*I go to bed when im the right sort of tired, too many times I have tried to stay up late to combat it, cat nap,going to bed at set times etc. Now if I'm tired at 7 I go to bed, often I will sleep for 5/6 hours. You need to learn to read your body signals eventually you can tell when the right tiredness for sleeping happens.
I have amytriptaline too but it does little for me. I has help my neuropathy a bit though. That said I only manage a proper nights sleep maybe once a week. But that's better than none!

*Sleep mmm sounds good. I can't remember ever waking up feeling like I have slept well. I seem to spend all night dreaming really vividly and detailed. I'm exhausted. Followed by Restless legs, and aches. However it doesn't seem to stop me from sleeping a good 12 hours, but it feels like minutes. Then I flip to not being able to sleep until 4 am for days, and then flip back. I'm all over the place!

*Don't drink caffeine and eat (even a piece of chocolate as it has caffeine in it) a few hours before bed. Don't do anything strenuous or watch an exciting TV show or film before bed.

If you cannot sleep, get up and get a change of scenery. Try some warm milk or a bath with essential oils such as lavender. Put lavender oil on your pillow. Dim the lights and try some relaxations exercises such breathing in for a count of 7 and out for 11. Apparently, deep breathing for 5 breaths stimulates the body's natural relaxation response.

*Never touched any caffeine any time. Nice relaxing bath before bed. No going on computer, or doing crosswords after 9 O'clock. Reading a book. Meditation. A snack, a drink and painkillers by the bed in case I woke up. If all else failed, just got up and learned Greek.

*I had side effects to amitriptaline. Changed to dolsepin but still have trouble sleeping. I suffer with real bad pains in my legs, any solutions anyone?

*A turkey and salad sandwich. turkey contains a hormone that makes you sleepy and lettuce contains laundnum. also meditation and a calm, quiet bed time routine.
good luck x

*amytriptolin 100mg per night and very rarely 7.5mg zopiclone, but that's only used if I'm desperate for sleep other than that if I cant sleep I get up until sleep starts to appear and a nice warm drink helps to sometimes.

*Several years ago, I was given amytriptylin (Elavil) and it had absolutely NO positive affect, even at the highest dosage. My new doctor has prescribed Clonapin (2 tabs in the evening and 1 in the a.m.) for my restless legs. That, along with Lyrica and Cymbalta seem to work most of the time. Personally, although I do not know you, I am very sorry that you have had to join this group. Whatever the outcome, keep in touch and let us know how you're progressing and what's working for you.

*Amitriptyline didn't work for me, just gave me horrendous acid reflux which kept me awake anyway! Itake Clonazepam for the restless legs but am usually on laptop until 2/3am or I will lie in bed and listen to an e-book.

*I recommend an amazing book by Ann Faraday called 'The Dream Game,' in it she analyses the picture language of the dreaming mind, demonstrating how dreams put us in touch with deeply buried feelings, by sending messages from the unconscious. She also points the way to personal interpretation encouraging us to examine our dreams and thus grow through self discovery.
I have been working with my dreams for some years now and am constantly inspired by what I throw up from that place.


*Sleep is often difficult to find for me, terrible night sweats too..am just about managing without medication, tried lots of alternative therapies, pain management course too. Practising meditation every day and gentle Gi Gong, at 'bedtime' its lavender spray, strong valerian tea, breathing exercises and classical Indian music.

*I used to sometimes take Zimovane but mainly before I was on Paroxetine. Now I take half a 5mg Valium but only sometimes. If I've taken medication for headache eg paracetamol that also helps.

* A couple of black Russians, melatonin and sex lol, yes even when you are exhausted and aching, best therapy yet.

*Went on disability. Take muscle relaxants and anti-anxiety. Have only 3 out of 7 days of good sound sleep. Never nap even if I want too. Sleep Dr. told me that.

*Amitriptyline gave me terrors, Zopiclone didn't work last time so I take nothing which I'd rather. I've just come through a sleep all the time phase and am back to major disruption with no pattern at all.
I relax with calming music and read before settling down and follow all the recommended sleep hygiene rules but it's just how it is. I don't worry or get frustrated with it because it only makes me feel worse.
I usually avoid using the computer or do anything that stimulates my brain, just lie and relax but recently I'm so uncomfortable and in pain tossing and turning so I'm trying to find ways to manage that?

*I'm really at my wits end with the insomnia at the moment, Amitriptyline didn't work, zopiclone have stopped working, Tonight I took 5mg of vallium and got four hours sleep, last night I got zero sleep and tired isn't the word.

I'm praying the insomnia passes in to the 'sleep for England' phase soon!
Long given up on Syndol and such likes.

*No one has mentioned beds. the best thing for fibro sufferers is to get the best bed they can afford. Ontario disability gives either futons or orthopaedic beds which are very painful so I use 3 mattress pads which prevents bowel cramps in the night and helps with sleeping longer.

*I had a memory foam mattress that was a god send!

*I always have a really good massage from my husband when I get into bed. It helps numb any neck or back pain enough to relax me.

*I 'sleep' but don't at the same time. I wake up every hour or so and dream a lot. I try mediation and hot decaf tea. A boring book- stuff like that. Ear plugs to keep the snoring from my bf quiet helps too! Lol

The funniest thing Fibro fog has ever made you do is?

*I would tell you but I'm in the fog at the moment.

*Losing my chihuahua, in my lap.

*poured coffee into the sugar bowl instead of my cup

*LOL. I am counting heads of my dogs all day long, to make sure I have not misplaced one or left them outside.

*Not being able to find my glasses and they are on top of my head or wondering where my contacts were and they were in my eyes the whole time

*Couldn't find the Y on the keyboard when typing thank you. That's just today's.

*oh dear, too many to mention. I pulled up my trousers the other day without pulling my knickers up 1st and couldn't figure out what the hell was wrong!

*I frequently get lost and go the totally opposite way to where I'm supposed to be going when I cant remember the way despite the fact I have been there hundreds of times.
xx

*putting milk in the kettle and putting it in the fridge

*forgetting what day it is

*I put the coffee pot in the fridge

*Holding my car keys in my hand and not knowing where to put them to get the car started. A stressful moment. 19 years ago before I knew what fibromyalgia was.

*Leaving my bathtub water on for over an hour and a half and my neighbours calling me asking me why there was water coming out of our house, running down the road. It was a hot mess!!

*Made three wrong turns on my way home from work.

*putting salt and pepper in my coffee instead of in my cup of soup ooops

*Can't find keys until for some odd reason you go in the freezer?? still not worked that one out??

*Forgetting what I have left the house for, not to mention nearly forgetting my name.

*Not remembering if I took a bath last night or the night before. And putting something in fridge that didn't belong there. And what I had for the meal before in the same day.

*Getting up and going in to a room with a specific purpose to do something in that room, get there forget, go sit back down, remember, get up go again, forget. I have done this upwards of 10 times until I finally get it right. We really do have to have a sense of humour to make it through the day.

*I Can't remember

*Driving to my Mum's, a 10 minute drive along a straight road - and I got lost! Stopped at a light and couldn't figure out where I was.

*Scary to associate with so many of these. Teaching for years gave me lots of scope..I called bad days my "shit down and get your rabbits out " days because words sometimes just didn't come out right!

*Heading to the West part of town and ending up in the far East! If at first you don't succeed, try try again!

*I have loads but to name a few......poured glass of milk then went to put glass milk back up in cupboard where the glasses go. Running a bath and totally forgetting it's running until it's too late. Feel as if I'm going insane.

*I forgot my address once. And I also forgot my girlfriend's surname. That was embarrassing.

*We were woken by an awful noise one night outside. My other half got up for a look out the window. I sleepily said what was it, other half replied that it was cat's fighting....

Out comes the classic line I've never managed to live down yet..... must be the spare cats then zzzzzzzz

*Left church with out my son or my jacket and went back for the jacket luckily my son found before I left again

*I too have poured something to drink and put the glass back in the cupboard. UPSIDE down like they go then I have the drink to clean up.

*I prefer to call it "fibro fog". I'm a sucker for alliteration.

*Having a conversation with someone and in mid sentence totally forget what I was saying! sat there with daft look on my face and its gone cant remember it also putting kettle in fridge.

*Forgetting what side of the road to drive on !!

*The best without fail was being dropped off round the back of the post office in town to collect a parcel, after being at the hospital all day.

All I had to do was turn left and left again, which I did fine going to the post office. Upon leaving, I somehow took a wrong turn and got very lost and phoned my other half in a panic going, 'I can't find you, I'm lost'

New to the area I had no idea how to describe where I was, this led to a very long game of 'Can you see such and such?' ...

*I like when we mess up saying like I told my 6yr not to chew with food in his mouth and not to kick a dead horse in the mouth, I'm reading these my boyfriend thinks I'm crazy and I'm laughing so hard I'm crying lol I've done so many of these

*Was not so funny, but I stuck my finger in hot cooking oil to see if it was getting hot?

*I'm guilty of lots, forgetting days, names, what I went into a shop to buy, mind's gone blank now, & crying with laughter too!

*feeding washer dog food lmao x

*ummm heard the puppy barking couldnt figure out why, until I followed his barks and discovered he got shut in the refrigerator when I had shut door after pouring me a drink 5 minutes before!

*I've done that! but with caramel everyone know when sugar boils its hotter than oil lost half me finger lucky it wasn't me tongue.

*when I sew patchwork pieces together it is not unknown for me to pick it up and trim off the main part rather than the raw edges, therefore being left with a little scrap of fabric neatly sewn together and trimmed! duh! What's more I know that if I do it more than twice in an hour it is best to walk away and leave the sewing for the time being.

*calling some someone every one else's name in the family and then finely saying there's if I remember it.

*I have burned myself while cooking countless times, usually through putting my finger into something hot, like boiling water.

*Not long ago I did it with the tongue. I was cooking soup and it was boiling. I seasoned it got a huge spoon dipped it in and straight to the mouth I went could not taste a thing for months.

*NOW you understand why I count my dogs regularly all day!

*This is too hilarious, maybe we need to write a book on all the crazy things we can get ourselves into with our fog.

*Defo! xx

*I was badly fogged before Christmas 2 years ago and had to make a bus journey, returning after it was dark. Fibrofog + darkness + holiday lights = brief panic when I had no clue where I was, what bus I'd gotten on and where I was meant to get off. (Answers: Around the corner from my house, the right one, the next stop.)

I'm only 22 with all the silly things I've done you would never see the end off the book cos I would always putting something new in it

*Gosh, I would have to say losing my keys, while they were in my hand!

*I have forgotten how to make chocolate milk...with Hershey's Syrup & milk, considering that my 4 kids have a glass EVERY morning with breakfast and have for the last 5 years!

*I am 51 and have fibro and fog all my life. I could fill up a book, LOL So I know what you are saying!

*Its sad to say, I have fog all the time I have to ask what day it is, what the date is. I don't remember where I was going to stop or going to pick up at the store. I have even thought my contacts were in and weren't or visa versa and its not alzheimers or being elderly because I am still young! I hate fog!!

*put my toque in the fridge unpacking groceries

*ut fresh catnip in the low-heat oven, then turned off the oven for it to finish drying. Later, turned on the oven to cook supper-you guessed it, burned the 'nip. The cats were not happy-no 'nip, and a screaming smoke alarm.

*I have done the eye glasses on and not being able to find it. Telling my son to get a pot holder for something in the oven and then turning around and grabbing on to the pan with my bare hand. Go to the store and not get the item you went there for but buying $50 worth of "stuff" thank you all for reminding me that it is OK to laugh about this stuff. fog can get scary.

*I have done the not finding the eyeglasses when they were on my face the whole time thing, spelling something and even with dictionary it still looks wrong, getting into the shower with my clothes still on, and too many to mention!

*Asking my son why the bed was in the bat with him.. That was today.

*forgot my eldest sons name!

*I forget...

*I use to be having conversations with friends and midway forget what I was talking about, totally gone. I use to try to hide the fact that it happened, then I said oh well, It just went out the window sorry. Don't do that as much but, from time to time it happens.

*Haha.. Had to chuckle at these over the years I too have probably done all of the above . Am always reaching in the oven with my bare hands. Stopping mid conversation with someone n looking puzzled cos you can't remember what you was talking about.

I've always called them my blonde moments telling people wait till the OAP moments kick in too (it's just so frustrating sometimes that it's a good job we can laugh at ourselves.)

*But one of my classics ... Walking back to he car park n forget where the car is.

*Getting outta the car at petrol station and looking n feeling frustrated n stupid cis can't for the life of me remember how to fill the car with petrol. Then my son in disbelief telling me to just put the nozzle in the tank and pull the trigger on the handle. Before sinking down the seat n hiding. Hahaha but heyyy I'm me :)

*There have been so many.I recall trying to get out of my car with my seat belt still on and some guy came over and told me after watching me for nearly 5 minutes, 'bless' him. Standing in the petrol station with pump in the correct place and just wondering why it was taking so long to fill the car, then someone pointed out that I had not pulled the lever up on the nozzle to let the petrol flow doh!!

Trying to pay money in over the counter at my local pet food store thinking I was in the bank...shame!! and the most recent going into the local spar shop and asking for Hens, the girls thought I wanted a chicken, no I said, eggs then No!! after a while I found what I was looking for pointed to them as I could not get the right word out....have you guest it yet I wanted batteries!

Love them all in my little village they have got so used to me and my funny little fibro fog ways. But I think the best one of all is when (just picture the scene) I was having a real bad day it was raining really hard, I had to use one of my crutches that morning as well as trying to hold an umbrella and a bag of shopping. I was heading back to my car and this really sweet older guy (70's) came over to me, he was also walking with a stick and bent over, he took hold of my shopping bag and umbrella linked arms and walked (well more hobbled) me back to my car. 'Bless' that sweet little man.

To have seen it and the looks from passers by well we must have looked like some comedy act.....:0) Gentle hugs everyone.

*I forgot how to spell my name when signing off an email...actually quite scary!

*All sound so familiar, but our house is interesting as my hubby has short term memory loss and I have fibro fog. We both to try and keep separate calendars and one can usually find what the other lost......LOL

*I have put the iron in the fridge,milk in the dryer lol it does make you feel like your going nuts but it is funny at times but also frustrating.

*When I was poorly my brain fog led me to do some classic things. My all time favourite was when I filled the car with petrol, paid for the petrol and then walked home, leaving the car at the petrol station. Doh! Seems unreal now that I'm well and don't get brain fog no more.

*So many - but one I've done a few times is making a coffee, putting the mug in the fridge & walking into the living room with the bottle of milk. Cue some very odd looks from hubby!

But my favourite of all time was buying some daffodils, then putting them in the fridge thinking they were spring onions!

*I know when it's time to hand over the car keys is when I turn left and end up on the right hand side of the road!

*Does that mean my mum had brain fog when she left me in my pram outside the newsagents when I was a newborn, because she'd forgotten she had a baby?!

*Open the bathroom window, shouted at builders next door "Its 8am on a Sunday morning you have woken me up,what the hell" It was TUESDAY .

I'm sure when we go to court soon they will bring this up.

*I have this wonderful Knack of replacing words in a sentence that relate kinda to what I'm saying or even worse to what I'm thinking, it gets like tourettes with random words jumping out! I then get really cross trying to find the right word, my daughter by this time is usually in hysterics and has already figured out what I mean !!

*Laughing out Loud ..... : )

*When I am typing a post and words just disappear from my brain. I might sit here 10 minutes waiting for the word to reappear, this also happens when speaking to others, with my husband I just say "oh you know" even though he has no idea, but he is used to it.

*just the other day I went to make a cup of tea. I put a tea bag in my mug, poured in the water (without boiling it first) put in another tea bag thinking it was sugar then put my mug in the fridge, after which I went to sit down to enjoy the cup of cold, disgusting tea that was in the fridge!

I often forget my name, especially when I have to sign something. I forget my house number when asked where I live and I often forget what I'm trying to say half way through saying it, got to laugh though, as frustrating as it is!

*There are so many, but the most recent one was walking around the supermarket with the shopping list IN MY HAND and walking out having only bought HALF of the stuff on the list. I loaded the first lot into the car then went back in and did the other half of the shop, went through the same till and was greeted with a peculiar look from the checkout operator! I'm forever losing my keys, which have been found in my husband's coat pocket?? in the tumble drier, and in the kitchen bin!!

*I can relate, I forgot how to do my job momentarily, so many times, I ask a co worker how to do something, they look at you like your crazy cause you've been doing the same thing for tears.that is YEARS, oh boy.

*Volunteer to do public speaking which I normally hate to do.

*putting tea in the oven, forgetting Ileft a ring on the cooker, threw the oven glove on top of the cooker, and it set alight, the same day I had the safety officer from the local fire brigade how stupid is the thankfully I didn't have to ring them up to put the fire out

*I also forget words mid sentence , or the thread of the conversation, its so frustrating, and the amount of times I've been looking for my glasses and I have already had them on all the time.

*Just last night I put a stack of dirty dishes into the linen closet.

*Going to work in slippers! Forgetting I put pudding in microwave+getting something else out. Holding man's hand that I thought was hubby! He bit surprised and wasn't out with hubby at time!

*One of many!!!! is putting my keys in the fridge!

*I attempted to start the cash point with my keys last night :/

*I complained really loudly to the cashier that the pay at pump things never work and I'm fed up of it and even when they DO work you cant get a receipt etc. I gave her my card to pay and she said "I'm sorry madam we don't accept swalec cards here, maybe that's why pay at pump doesn't work for you?" (electricity account card) I was so ashamed !

I also had my cashpoint card taken off me in a shop cos I put the pin in wrong more than 3 times and then couldn't remember my name to prove who I was!

Also have phoned 1 of my daughters schools (actually its happened a lot) and remembered why I was ringing but forgotten who my daughter was. in my defence I do have a choice of 6 to remember.

*I don't know how many times I have had a phone call to hear "mum you`ve forgotten me haven't you" luckily they know me so they tend to write a note and text me and phone me at random intervals to remind me stuff :)

*Poured coffee on my cereal. So many other dumb stuff. One time when I was working I had shoes of the same style and wore one black and one brown pump. Had to go back home for sure. Everyone had a good laugh.

*so far this morning, having been awake since silly o clock,
poured hot water in to a mug, for some strange reason my brain told my fingers to check it was hot enough, it was, the kettle had just boiled, ouch,
stupid !

*Forgot my phone number-three times in a row. Never did get it right. And this was at the doc's office-they should be used to me by now.

*Driving without the lights on at night and only realizing it after 5 minutes . Going up a one way the wrong way (never saw the sign) needless to say I don't drive any more.

Wearing 2 different shoes to an appointment and not realising it for 2 hours.

Most embarrassing one: Putting some (unused) tampons in my in laws sugar cup while we looked after their house. Once back from the holidays my father in law offered some sugar to a priest for his coffee and could not believe what was in the sugar cup.

Consultants

Do you ever get that feeling, because we attend so many hospital appointments, that when sat in front of a consultant and asked how they can help, you can't remember what it was you were referred for in the first place?

*oh yes. it's the when what started I have problem's with.

*LOL Yes, that would be me! I usually have to call the day before my appointments to find out what time they are. I even write down times and dates in 3 different places so I would remember!

*Yep all the time.I saw my GP last week and I had to take a piece of paper with me to remind me why I was there!

*I have never had a hospital appointment relating to Fibro. Just physiotherapy. I'm still waiting for my rheumatologist appointment.

*Ha, you have to get to the hospital in the first place! I went years ago to see a rheumatologist had blood tests, because nothing ever shows in my blood, (apart from inflammation, despite the fact I take anti-inflammatory medication, but never thought about that then) I was discharged after six months, and I get little or no support from my GP surgery, just keep taking the tablets, despite being in pain 24/7. Is anyone else treated like this?

*YES

*YES ME TOO! when they say how are you? I want to scream at them. Although my GP is lovely and sympathetic too!

*It's when they say...now, what can I do for you?

*My lovely rheumatologist patted me on the hand and said "Now I know how you ladies like to worry about things like MS but I assure you there's nothing wrong so maybe now you know that it will all go away" And POOF!!! as if by magic it did! Or actually, no, that last parts not true!

*I've been laughed at by consultants

*Yes, I have to write everything down!! But then I need to remember to bring the paper!

*I write every pain and ache down in a diary to show the consultant. It keeps me calm as I have a habit of waking in the night and worrying that they wont believe me. Unfortunately when I went for my appointment on Monday I forgot to take the diary with me!

*yes sometimes they say " and what can we do for you today? and I have absolutely no idea !!!

*I quite often draw a blank while I'm there,and when I get home I think oh crap I wanted to tell him this,this and this..Brain fog!

*Mine is no help at all no backing had to fight myself for dla and he was no support and still in the hospital were good but now I'm discharged so dreading next DLA application as I no he wont back me and I have no consultant or physio to back me this time. I'm on so many tablets too what does anyone else take?

*I have walked into the hospital and forgotten which department I am supposed to be going to (as have been to most!) But for consultant and GP appts I always write a list! Just recently I have taken to typing everything down and taking that in with me for the consultant - updated meds list and new symptoms. I even have a typewritten medical history for when I have to go to A&E - much easier than trying to remember how many surgeries I have had!

*no sorry. I just get sick of Dr. after dr. appts. None of them will ever understand.

*Consultant? what's one of those? I haven't seen one since being diagnosed 10 years ago! My GP puts every thing down to Fibro and tells me to keep up the meds! I feel like I have been thrown on the scrap heap! I do feel lonely in this as I have no idea of new meds etc. My GP often rushes me so end up forgetting what I wanted him for. I hurt my coccyx after falling down stairs 3 months ago, its agony but he just said " its the fibro ". My feet hurt all the time too. I put all doc appts on my phone with reminder set.

*hell yeh, I don't even know if I really exist.

*I feel that every day! I feel like I am losing my mind! I have been wanting a duck, and have I gotten 1 yet? NOOOOOOOOOOOOOOOOOOO I keep forgetting *TEARS*
I wanted the neck wrap to help with my neck and shoulder pain, it was on sale until Sunday. I remembered it on MONDAY! I HATE FIBRO FOG! I HATE FIBRO PERIOD!

*Can someone tell me if I can still get the free duck and pay for postage, or did I miss that too? UGH!!!


*OK I guess I had my self pity 4 the day, sorry folks! I apologize to all!

*ALL THE TIME!

*I keep a notebook in my bag with appointment lists- who, when, where, what did we do?, what did they prescribe?, how do I take it? All the SSDD crap that has become part of life.

*what a great idea and yes I went through the SSD several years ago and it pays to be able to look back at dates times ect. The more info you have the better, even if they do not ask.

*Every time I say I keep forgetting things , or I forget what I am saying half way through , everyone (without FM ) say oh yes I do that . Nobody seems to understand that it is Fibro. Why wont they understand me !!! I am so fed up with this rotten FM.

*yes you can get the duckie. go to the main site which you can get to from the info page here. fibroduck.com

you are also allowed to vent and be scared. that is what we are all here for. (I actually typed hear for---after I corrected myself I realized that it really could be HEAR with our listening ears :)

*my old gp would tell me it is just another symptom of fibro. tried to send me a pain clinic when I just asked if there was something between advil/ib 800mg and demerol. just told me we don't really deal with pain.

Then one time I had to see one of the nurse practitioners. I mentioned that there are times when I had to try to figure out what body part was really hurting. my eyes were tearing from pain but I didn't know which one was hurting.

she couldn't believe that that was possible and treated me as though I had 5 heads and that I didn't know what was happening to my own body. she really ticked me off. I made sure that I NEVER saw her again. I did have to have one of my kids have to see her once or twice after that. I left that practice because I always kept being pushed off to one of the nurse practitioners.

*Correct my mind goes blank hugs.

*((((hugs))))) the duckie will be free as long as we can make him. C'mon and join in xxx

*I took a list to an appointment in December and didn't get the chance to go through it!

*Who and where am I again?!

Question from a member: Does anyone know of any support groups that cover the Doncaster, South Yorkshire area please?

*wish I did, I live in Sheffield and don't know of any! don't even know any fellow Fibro sufferers in my area.

*just found a link here on Google for you both
http://www.fibroaction.org/Pages/North-east-England.aspx

*try here also
http://www.ukfibromyalgia.com/fm-support-groups/groups-north.html

*I just found them on Facebook as well
http://www.facebook.com/topic.php?uid=5145633780&topic=10591

*ThanQ .... will take a look.. :0) xx

*There is one in the main town centre but the only one I know of. Whereabouts in S yorks are you because I am near Rotherham???

*If you go to your GP they will/should be able to give you the correct telephone numbers of the support groups in your area,Doncaster,south Yorkshire, failing that try the main library in the town centre.

*In Camberley in Surrey there's nothing here either or people my age or live near me either

*Thank God we have good old Facebook, at least we can help each other.

*There's a lovely group in Upton. Isn't that near Doncaster? If so I can put you in touch.

If your best mates came round and told you that you can have 24 hours of their time to use any way you want, what would you get them to do for you?

*Nothing, but sit down and have a nice cup of coffee and just talk, really talk!

*I agree with above

*make me smile as they always do

*I would love if someone would help me and motivate me to get my house back in order like help with dishes and cleaning the house ...not to mention after we got that done then we could sit down and watch movies for the rest of the time and just Veg!

*Just hang out and be with each other. Be silly, have fun and just enjoy each others company!

*make me laugh x

*I agree with you but add not having to get up and down for this or that, or answer phone for this or that.

*Take a walk in the woods & give me a massage!

*I would make them go to a health spar for the day as she has always been there to help me. I think she deserves to be pampered now.

*Help me clean and organize my bedroom!! Also, I don't get to spend a lot of time with my friends they all have busy lives and don't have time to visit me. I would love to just sit and talk.

*Just to be pain free and enjoy their company

*Just to be pain free and enjoying that with them

*Help me realise I'm not alone in the world, and make me see I'm going to be OK. but would need more than 24hrs to convince me at moment!

*Just hang out, chat, listen and give me hugs as needed.

*dig on the allotment ! so much to do so little time & I'm no use at all as I can`t dig so my partner has to do all the digging :(

*Since we all have fibro, we would just hang out and pamper one another.

*I think the consensus is that all we really want from our mates is some time and company. Fibro can be a really lonely condition. Having real mates round for a chat and a giggle is the best medicine for helping us to forget about our illness for a while.

*For my friends to feel free to talk to me about my fibro etc I have certainly found out my true friends through this awful time I am having.

*How true, the only "true" friends I have also have fibro, the "normals" whom I thought were friends ran years ago.

*I would really love for my garden to be done,I used to love gardening but with fibro so advanced I cant pull the simplest of weeds.

*Depends which ones, one is fab at reflexology, one makes great cakes and one just makes me laugh.

*My garden or my stairs decorated please x

*I'm lucky to have a spouse who helps around the house, even if he does get frustrated that I can't help out as much as he does. I would love to have all my friends over to just spend time with me, everyone could bring food so I wouldn't have to cook and we could all just have an amazing time!

*All the house work and play taxi driver! lol

*COOK, Clean, and hike several miles for me. Visit the animal shelter, shop and go out to eat. Haven't been able to do that in about a year due to the pain. I miss it.

*The first thing would be to sit down and talk with me. Have our favourite drink & snack. Then if there is time left, laundry, clean, & cook. But then they must stay for supper to eat and enjoy and watch a movie!

*I'd like a solid full-bore clean-out of my entire kitchen. All cabinets, both fridges, oven, microwave, all pots and pans, cups, utensils and dishes. If these best mates were still willing after all that (ha!), I have some landscape maintenance which really needs doing!

*Clean my house!!!!

*oh 24 hours then after cleaning house we could have a nice meal and watch the basketball tournaments and talk long into the night which is when I am usually awake!

*If my family /mates are reading this, please clean the house and sort out the garden! De clutter Steve if it's possible.

what online support would help you most, and have you found this anywhere?

*Help with tackling the Disability Living Allowance process! It's a nightmare!

*I have found great support and inspiration from the following groups:
Fibromyalgia--http://www.facebook.com/?ref=home#!/group.php?gid=51024203440

POP!--http://www.facebook.com/profile.php?ref=profile&id=1169391134#!/group.php?gid=233248270891

FibroMasters--http://www.facebook.com/profile.php?ref=profile&id=1169391134#!/pages/Fibromasters-Theres-No-Cure-For-Fibromyalgia-But-You-Can-Master-It/213351404789?ref=sgm

*FibroDuck (OF COURSE!)-- has helped me get out and become creative with my Fibro Awareness. It's been inspiring to see the other Duckies of the world! Plus, the more I talk about it in public to friends or strangers, the more people I realize I know who suffer with it!

*Great Question today! Can't wait to see what others have to say!

* www.ncodp.org.uk those people helped me with my benefits, they were very good and understood my problems.

*I've found facebook groups very helpful, have found fellow sufferers and can ask questions about new meds and dealing with symptoms

*I'm also struggling with DLA!

*DLA help, It's like batting my head on a brick wall!!

*A list of where we can get really good medical support for FMS from, it must be there somewhere!

*I agree DLA are a nightmare I'm sure they think we are trying to pull a fast one, they should try living with it for a week see how they get on.

*Yes - DLA and more info about research. I am an expert on Fibromyalgia as I live with it and have read loads about it. I wan to know more about what is being done re. treatment and cure.

*One for benefits help is:
http://www.facebook.com/group.php?gid=353769547720

*I asked my local DIAL group to come and help me fill in the DLA forms which was a great help. Definitely one in Leicestershire and similar in Derby, not certain about other areas.

*Here is the link:- My local group sent someone out to my house because I couldn't drive there.
http://www.dialuk.info/findadial/index.asp

*I'm struggling with DLA. I appealed original decision and have now asked for final appeal with me attending. I tried to ask DIAL for help with both but the Leeds branch is no help whatsoever! I emailed and rang and left message first time I contacted them and they couldn't help me before the deadline for 1st appeal. Then this time I emailed and they took over a week to respond and say I would have to ring them to make an appointment as they are too busy to respond to the email! Waiting for my appeal date now - unless they change the decision without a hearing - which I doubt!

*For anyone needing help and advice on benefits, I've found these guys to be a fantastic support:
http://www.facebook.com/?ref=home#!/group.php?gid=100236785459

*This is a great site with loads of easy to understand,practical advise.

*Does anyone know where you can get help for DLA in Belfast I have been turned down 3 different times, have been to CAB, they filled the form in for me again they didn't know enough about Fibro or how to explain it on the form against the questions they ask.

Many thanks if there is anyone who can help me I have had (fibro) full blast for 10 years, soft gentle hugs to everyone x

*Do you have such a thing as a welfare rights office? they should be able to help you as that is what they are paid to do. they helped me when I claimed DLA and they help every time I have to reapply.
good luck x

*The key to filling in the DLA forms is to fill them in as if it is one of your bad days. How would you cope on a really bad day? Don't think about how well you can cope on a good day. Where it asks how far you can walk be honest...can you walk at all without severe discomfort? It's not asking how far you can struggle to walk. Don't tick the boxes,but write little notes personal to you where you can't answer for definite. Make sure your personal statement at the end is as you would be on a bad day. No need to mention good days. It worked for me on my second application after someone told me how to approach it. Hope this helps x

*Each CAB is different but most of them can offer brilliant assistance with your application and can refer you to the right people to assist with appeals too. Try 'em!

*I get best on-line support from individual friends I met via on-line groups, I'm so grateful for all of them!

*In the USA, it helps to emphasize the depression aspect of disability/FM. Also, I was disgustingly honest on my forms including about not showering, etc. Both of those I think aided in my getting approved for disability.

*I have found on-line forums such as FMAUK really helpful. Lots of members who post about their health, symptoms, treatments, meds, GP and consultant experiences etc. Lots of advice and ALWAYS someone on-line to chat to, even at 3AM when the restless legs and pain are keeping you awake.

It is almost impossible in the UK to obtain DLA without form filling help from CAB or Benefits Advice services :(

*This forum and others like it have been my greatest help. Reading others real experiences helps me to cope with mine. It's nice to know I'm not crazy! Although I sincerely feel terrible for my fellow posters I feel better knowing I'm not alone.

*The forum its been invaluable to me when I have had questions or felt down. Its nice to speak to others who are experiencing the same as yourself, you feel part of a life line.

*in regards to ME just being able to share with fellow sufferers via FB is very helpful to me anyway

*I agree, but there is another side for me. I wish there were groups closer to me I could go to. I don't get out much and I would give anything to have friends to visit or get together with and talk in real life, not just on-line. Don't get me wrong, on-line is great ... but even my mental health clinition told me I need to have people around me, I need to get out more. Fibro friends would be so great in my life! Friends Fibro or not would be great to have in my life! :)

Dual Diagnosis

Many of us have 'dual diagnosis' - ie we've been told we have Fibromyalgia and something else too. If you have a dual diagnosis, what other conditions do you have in addition to Fibromyalgia?

*fibro and MS !!

*I have Ehlers Danlos Syndrome hypermobility type and also ME. That's not so much a duel diagnosis as a triple diagnosis, lol.

*I have Myalgic Encepahlopathy and also under investigation for my bladder and I'm also coeliac

*I have spinal stenosis and other joint issues, like a torn rotator cuff.

*MCS Multiple Chemical Sensitivities

*Does arthritis count? or is that considered something that just exacerbates the Fibro?

*CFS, Osteoarthritis, and IBS. I think I quit going so they could quit diagnosing me with different illnesses!

*Hi all ive got ME Fibro and I'm diabetic.

*Can someone tell me what Myalgic Encepahlopathy is?

*Fibro and Chronic Fatigue

*Fibro, CFS, IBS, Interstitial Cystitis

*Borderline personality disorder, bipola I think that's enough now xx

*Fibro and ME

*I have arthritis, sciatica and just been diagnosed with chronic migraine, but hey, it could be worse! :)

*I have Fibro, Raynauds Syndrome and Endometriosis. Triple Decker lol.

*Fibro and M.E.

*Fibro, Asperger's Syndrome, Bi-polar, and IBS

*IBS and CHRONIC Migraine. Oh and costochondritis.

*I was first diagnosed with Benign Joint Hypermobility Syndrome (there is some debate in the medical world as to whether that is the same as Ehler-Danlos type 3) and I'm still under investigation due to high inflammatory markers & slight auto-immune markers showing in my last few blood tests. Oh and had the IBS diagnosis a few years before that.

*ostio arthritis

*IBS,RLS,SEVERE MIGRAINES,ARTHRITUS! just some of them

*Osteoarthritis, hypothyroid, Sleep Apnea, depression & anxiety.

*I 'ONLY' have Fibro. I have not met anyone else who 'ONLY' has Fibro! Everyone seems to have some injury, arthritis or something.

*IBS, osteoarthritis, Reynaud's syndrome, generalized anxiety disorder, seasonal affective disorder, I think that's enough for now, don't you?

*arthritis, hyper mobility, hip displasia and now have tinitus, think that's it for now

*hypermobility, ibs, fibro, generalised anxiety disorder, tennis elbow, tietz's syndrome, lateral chest wall pain, irritable bladder syndrome, chronic allergic rhinitis OK ill stop now

*arthritis, lupus, mixed tissue dis-connective disorder (may have said that completely wrong) migraines with risk of stroke, severe spinal issues including disc degenerative disease and cervical degenerative disease, SVT-heart condition, mytral valve prolapse, chronic anaemia, IBS and I think that is all of them but because I forget things so easily who knows.

*Sleep Apnea, GERD, Bulging discs in neck and back, IBS, CFS, anxiety,depression..... I think that is all, that is enough!!!

*Hashimoto's disease and Sjogren's Syndrome
*I have fibro and vitaligo

*Diabetes, recto-vaginal fistula, ileostomy, large parastomal hernia, sleep apnoea, osteoarthritis, pernicious anaemia, GORD, depression, plus something else going on in background, undiagnosed as yet but I ain't right!

*Myofascial pain syndrome,major depression, restless leg, chronic fatigue and a few others such as chronic bronchitis, chronic sinus infections. GERD, high cholesterol, I didn't have any of these prior to FMS

*I have Fibro, IBS, Schuermann's Disease and Depression. Only got diagnosed with Schumann's in last 6 months! Fibro and Schumann's I inherited from my father.

*Well probably osteo arthritis, but nothing ever shows in blood tests, but I've had four arthritis related operations. Chronic sinus infections, tinnitus. Oh but the worst of all, as it's the cause of all my problems, I'm overweight!!

*I've had IBS for over 30 years, Fibro for 5 years and (borderline) Sjogren's sydrome for last 2 years.

*I have fibro, CRPS, IBS, GERD, sleep apnea, hyper-mobility, depression, hypertension, Arthrofibrosis and a host of other issues!

*HMS and CFS

*Anyone else got pcos?! Dunno what else is going on still under destruction I mean investigation!!! I'm stuffed today. I have raised flam Markers and autoimmune stuff going on, getting fed up now. Bone scans uncovered White patches hands and feet, went for soft tissue scan ultra sound. yesterday and guy said nope, no inflammation, no inflammation my arse!!!

I got spasmodic legs and a decked knee, and my lumber is crackingly painful. I love Fibroduck! Oh and OCD and vitamin stuff, and v v bad tum, lost 6 stone in about 6 -8 months.


*Fibro,IBS,chronic fatigue,migraine

*Was diagnosed w Fibro and Epstein Barr Virus at the same time.

*I have crohns disease, bile salt malabsortion, pernicious anaemia, serro negative arthritis, osteoarthritis, diabetes, asthma and a frozen shoulder, and I'm only 39!

*panic attacks,depression and in process of having tests on my knees and hands

*Fibro, gout and cfs

*I have Bi-polar disorder, Tremporal mandibular joint disorder, IBS and Trigeminal neuralgia - keep the chemist in business.

*I have fibro, arthritis+bone degeneration and I am profoundly deaf, but hey I'm still here and functioning!! I have fab husband and supportive friends and family x

*Chronic myeloed leukaemia, Chronic Fatigue Syndrome, M.E., IBS, polymyalgia, TJD, etc.

*FMS, joint hypermobility syndrome, raynaud's disease

*fm, ibs, costocondritus,irritable bladder,and something else but can't remember and other things to be investigated but don't want to get sjogens syndrome as my mum had that and died

*In addition to fibro I have Myofascial pain syndrome, Chronic Fatigue, peripheral edema, peripheral neuropathy, IBS, chronic sinus/allergy problems, the beginning of Sjogrens, depression, OA and two doctors that can't agree on RA. One says yes and the other says no.

*I have Adhesion Related Disorder, Antiphospolipid Syndrome, Fibro, Lupus, Degenerative Disk Disease and Osteoarthritis.

*I forgot my huge ventral hernia from breast bone to pubic bone, IBS and IC! Oh and mitral valve prolapse....sheesh!

*Fibro,hyperjoint mobility ibs migraine n depression

*sjogrens, raynauds, tmj, arthritis, hbp, psoriasis. allergy to sun, Ibs, probably forgot something :/ but think the list is big enough, wish I could return as "no longer needed" most of list.

*I was originally diagnosed with Psoriatic Arthritis and a torn disc in my lower back. Fibromyalgia was diagnosed around 2000 after about 3 years of having the other two conditions. I also developed Asthma after having my daughter 18 years ago.

*chronic fatigue ,pernicious anaemia, plantar fascia, IBS to name a few

*Fibro, RA, chrones disease, chronic migraines (had a stroke 9 years ago from migraine) & now due to all the meds I take, chronic pancreatitis!

*ME iBS arthritis TMJ & lymes desease.

*carpal tunnel and pernicious aneamia.

*Severe depression and just diagnosed with panic disorder. I get bad headaches that I never had before the Fibro. OH YEA and a constant bad mood. oh and depression, anxiety disorder, mirgraines, restless leg syndrome and IBS!!!! the list goes on.

*Migraines, Restless Leg, Arthritis, irritable Bladder, IBS, Defect in Neural Arches. . Depression.

*Fibro and Sjogens Syndrome, Osteoarthritis, osteoporosis, scoliosis, Hashimotos Thyroiditis, scoliosis, cysts on every organ, Heart murmur, spot on lung, IBS, tangle, something in my brain stem, Factor V Lieden, carpel and ulnar problems in both arms.

Forgot about migraines, GERD, hiatal hernia, restless leg, tinitus, also can hear my heartbeat in my ears from the tanglestia whatever.

*Fibro and Raynauds oh and hay fever which is just a pain on top of the other two! Seems I'm doing well compared with some! But only 20 I'm sure the best (or should I say rest!) is yet to come!

*I have a very low vitamin d3 does anyone else has ?

*Benign hypermobility syndrome, osteoarthritis with possible gout or RA. restless legs, IBS, tension migraine, TMJ, Scoliosis, tinnitus(which you get from over use of pain meds.)Asthma, allergic rhinitis,hiatus hernia (due to steroid asthma meds.) Anxiety and depression, stress, Irritable bladder due to prolapses, Birsistus in hips knees and elbow possible carpel tunnel, as my hands go numb and tingle when I raise them.

I am really scared of stroke, although my blood pressure is on the low side, the migraines are horrific, I would just like relief from one or two of these conditions, or a new body and now I have to have a colonoscopy. Does it never end?? Without the ultimate step that is!

*Spoon Lupus, Fibro,Sjorgrens,Arth,Hernia,IBS,Carpal Tunnel,Burisitis,Sleep Apnea,Degen. Disc, Bone Spurs on Spine and Feet,Diabetic and,Gerd, God help me!!!

*ME, CFS, osteo arthritis, hyper mobility syndrome, IBS, haitus hernia, chronic tennis elbow, tendonitis. currently undergoing kidney, galbladder and liver tests

*Anxiety, panic attacks, headaches/migraines, fatigue, irritable bladder, back pain, tendonitis, IBS and yes been told I have vit D deficiency. But the tablets made me constipated so have stopped them. Oh and terrible period pain.

*Ibs,hypertension,restless legs,insomnia,migraine,plus many more.

*Hi Fibroduck. I have diabetes, fibro, osteoarthritis and I have just been told I may have Menieres Disease as well.

*About the Vitamin D deficiency. It can have the same symptoms as Fibro, and can be cured! If you haven't had a blood test to check your vitamin D level, ask for one!

*In addition to Fibro, I have been diagnosed with Lyme, Adrenal Insufficiency, sleep apnea, restless leg syndrome, Hypothalamic/Pituitary dysfunction, Epstein Barr Virus, Immune deficiency, Low vitamin D3 and B12 levels, as well as low serotonin, cortisol, hypothyroid, migraines of unknown origin, low oestrogen/progesterone. Most of these were diagnosed by blood test, and are being treated with bioidentical hormones, supplements and nutraceuticals.

*Damaged nervous system, Chronic Myofascial Pain, Epstein Barr virus chronically active, M.E., degenerative disc disease, orthostatic intolerance, TMJ, tinnitus, mitral valve prolapse, costochondritis, migraines, excessive prostaglandins (which accounts for much of the pain)

*Hypermobility Syndrome and Endometriosis

*I was diagnosed with endometriosis 8 years ago and still suffer some of the symptoms. From what I can gather, around 45% of endo sufferers go on to develop fibromyalgia and/or CFS, as well as a larger percentage going on to develop rheumatoid arthritis, thyroid problems and lupus.

*One 'specialist' I saw said he thinks they are all under the umbrella of immune disorders and one day the medical community will figure it out! heres hoping!

*Hi all as well as the fibro I have had endometriosis for years, pcos, IBS, have a problem with my shoulder joints but cant remember name. I also have restless legs, depression, pania attacks, can't leave the house without support, severe headaches although can't get dr to agree they are not simply from my meds as I had them before I started meds. Currently awaiting a 2nd opinion on things but i don't suppose he'll be able to do much but if he comes up with anything really helpful I'll let you all know x

*FMS, PCOS, eczema, used to have gallstones and a seriously angry gallblader but now have a dodgy liver, depression and sleep problems. And I'm developing allergy after allergy.

*I also have discoid lupus.I has a back fusion a year ago.And during surgery my dura ripped leaving me with nerve damage and brutal back pain.

*I am not too sure where the Fibro ends and another disease starts to be honest. I have chronic pain, chronic fatigue, my knees and elbows are in pain 99% of the time. My knees are always cold even when it is warm out! My eyes have been drying out, I need to put drops 2 to 4 times a day, in the morning I have to place a hot towel to my eyes. IBS. rashs, my skin is ultra sensitive now. I use the patch for pain, that is surely hard on my skin (the adhesive).

*reehl fatigue syndrome, ibs, migraines,degenerative disc disease

*I forgot about Gerd, and depression and possibly ptsd according to my psychiatries!

*Arthritis, high bp.

*Bipolar..... :)
Is there some sort of pattern emerging here??

How do you explain illness to others outside your family?

*I try not to most of the time, unless they ask. People don't see anything wrong, so they tend not to really believe it anyway. Hell, I have a hard enough time explaining it to family members and getting them to accept it!! If I do explain it.

*I try to give as much info as I can about Fibromyalgia, especially if they don't know much about the illness. I try my hardest to keep my personal story personal. I don't want anyone to think I am crazy or to feel sorry for me. This is a lonely, painful, misunderstood illness, that only those who have it (and some of those living with those who have it) can ever understand. The best we can hope for is awareness and acceptance.

*Wide spread pain all over the body, fatigue, depression. Now weather they be listening to you or interested is another thing, gentle hugs to everyone.

*Good question! I cannot get people to understand. They look at me and say you look fine...if only I felt the same way. I hope one day people will understand that this is real and we need their support.

*Well, I don't talk about it unless I think it's relevant..and when I do, I just tell people it is a central nervous system disorder that messes with all of the body's systems and causes extreme pain and fatigue. If that doesn't make sense, then I resort to telling people "it's like M.S., only it's not life threatening".

*It's very hard I get more upset telling others more than immediate family i.e. husband and kids close relatives well don't like to be a pest or a moaner but we will get there one day FibroDuck with all the work you do x x

*A bit like ME (which they all seem to understand) but with hot knitting needles going though my bones and joints all the time.

*I feel exactly as you do Molly. Its hard enough without trying to 'convince' people that its real. I have this really great bunch of Fibro friends on Facebook. When I am having a bad day, I unload to you all...you are the best support system I could ever ask for.

*I explain it as a "nerve disorder". Describe the constant excruciating pain and fatigue. If they ask I will go into more detail explaining how I need to limit activity and what that means. Then I go into the details of the pains and how my nerves misread signals, ending up telling my brain that a touch is a burn or that my shoulder is dislocated.

I try to describe it in a way that others can associate their pains to fully understand the intensity of my discomfort. I mention running multiple marathons a lot too.

*I sometimes explain it as a "flu" that never goes away. Most people seem to relate to that. The aches, pains, sore muscles; when even your skin and hair hurts. Ugh.

*The kids I teach seem to be able to relate to it if I say it's kind of like having arthritis in my muscles! Only way I've found of giving them an answer that doesn't require more detail. I tried the ME approach but they hadn't heard of it. However, they now think I have arthritis as well anyway. Meh!

I'm do the same as Ali say its like M.E and with bit extra to it! I've also said if you have pc then Google it, it saves time in you explaining it! then that person gets a better understanding about it x

*With great difficulty, can be explained quite easily if people are prepared to listen, otherwise it's very very difficult

*I don't! I can't even get la family to understand it!

*So hard even me partner forgets sometime that I'm ill.

*I explain it as feeling like you've got flu all the time and tell people FM is in the same family as ME and MS. They seem to understand this, but unless you have FM, nobody appreciated how you really feel because, as we all know, we look fine!!!

*Not easily, I tell them I ache from head to toe, 24/7 And I take 10 tablets in the morning and wear a painkilling patch.

*I say its like having the flue every day (those are my good days) my bad days mean I can hardly get up it hurts so much. I say its similar to arthritis but it affects the muscles around the joints (people seem to grasp that).

I also say my pain level is 10 times more sensitive than most peoples... that if they pricked their finger with a pin in a few minutes they would forget about it. But for me it would still be hurting in half an hour and it would feel like I had cut my finger. I also say that if I get stressed emotionally or do too much physically its bring on a flare up.

*I try to use the spoon theory to explain it to people. But even that does not explain the days when my pain level is over an 8. There are new TV commercials on in the US that explain that it is over stimulated nerves that send constant pain signals. Even the commercials don't do Fibro justice as they only portray the way it effects people with a mild case.

*I feel 'lucky' that I was diagnosed with PM rather than FM because at last it's treatable and recognised. I had a friend experiencing the same symptoms at the same time, but because she didn't respond to steroids, she was seen as 'hysterical' and "imagining it". She was in as much genuine pain as me, but no medication could help her. This is why I'm with you. For many months I thought I had FM. I know how that feels.
*I love it when someone you haven't seen for a while comes up to you and says 'How are you, how you doing?' I often reply, well its funny you should ask, or...do you really want the truth, and then I give 'em a quick synopsis and you soon find out how good a friend they are. I have got passed the anger stage and why me stage and now I say like it is.....and give them a link to the FM UK site!

*I gave up tellin people years ago as they don,t even listen any more!!!

*Well this is me..Please anyone feel free to print it off it you think it may help! Gentle hugs all:

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from Fibromyalgia though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. If you want to read articles about Fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too.

This is definitely going to be a process. The first step is for you to believe that there is an illness called Fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don’t want you to think I’m making this up.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for.

Sometimes I can take a lot of medication and still not feel any better. That’s just the way it goes.

There’s no cure for Firbomyalgia, it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I am better, because I suffer from chronic pain and fatigue from which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon.

I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen, because there isn’t any way for me to know. Sometimes this is a real disappointment, and I’m sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It’s not caused by inflammation like an injury; it is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, Fibromyalgics should have them for pain. Sometimes it just hurts all over.

Besides pain we have muscle stiffness, which is worse in the mornings. Sometimes when I get up out of a chair I feel like I’m 90 years old. I may ask you to pull me up. I’m creaky and I’m clumsy. I trip over things no one can see, and I bump into the person I’m walking with and I drop things and spill things because my fingers are stiff or my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination; it’s all off. I walk slowly up and down the stairs because I’m stiff and I’m afraid I might fall.

Because I feel badly most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this.

My limitations, like my pain and my other symptoms, are invisible but they are there.
Another symptom I have is problems with memory and concentration, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put them; I walk into rooms and have no idea why.

Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics – most of us are frightened that we are getting Alzheimer’s.
I mentioned my sensitivities earlier and I need to talk about them again.

It’s more like intolerance – to everything. To noise, especially certain sounds like the television, or shrill noises. To bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse, and I get exhausted.

Sometimes I just need to get away from something; I just don’t know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that’s really all right. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just best to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and feel I could sleep for fourteen hours. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. I am sorry, is there a solution to this you may wish to discuss.
All these symptoms and the chemicals in my brain can make me depressed, as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m so grateful. I can’t always admit it at the time, but I’m admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our physical intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It is very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you. I will set aside time for us to be close.

During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

*I use a stick so people generally ask what I have done to my leg. I then say it's not just my leg, I have a chronic pain disorder that affects all my muscles.

*I must admit I never raise the subject outside of immediate family and some friends. I'm useless at explaining it, but thankfully it's not often it comes up. With family and good friends I can chat with them at ease without fear of being judged.

*I say its like MS but you don't die of it just wish you did sometimes.

*I use the ME approach, more people have heard of it! Also tell them to go look it up as it takes too much energy explaining!

*Well described, although I would never go into so much detail in one go! xx

*I just start by telling people that Fibro makes my life a nightmare and then they start listening.I wrote everything from Fibro down in a little black book,so when I'm to sick to explain I just give them the book to read.In a way its kinda helping people to understand.

*That seems to have been written for someone special - I hope they realise how much effort writing that lengthy and detailed letter was. I think it is excellent and I will take your offer of using your words - though I will change some of the details which are different to mine (though not many). xxx

*It is difficult especially being single and if I am going to date ( it has held me back, my own issue with it, rejection factor etc. Most people don't want to hear about it or others already know .

*I tell them its like a really severe flue with ME and IBS. They seem to understand then and are generally sympathetic and helpful.

*Cowing An analogy one Lupus sufferer uses to illustrate what it's like to be sick http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

*I get them drunk, throw them down a flight of stairs and then the next morning I tell them "see, this is how I feel EVERYDAY!!".

*Hi all - I say the same & that it's like MS but not life threatening - because at least people relate to MS - they don't seem to want to know about Fibro - sorry if doesn't make sense bad day 2day, migraines etc.

*I don't bother any more, it is easier to let people think you are lazy!

*I don't unless pushed and then I lie about how bad it is.

*I don't try cause I know they won't get it.

*Look at a beautifully wrapped gift, then imagine it is dropped and what's inside breaks. The gift still looks beautifully wrapped on the outside, but is broken on the inside. We don't look sick on the outside but we are like that broken gift on the inside. That's an invisible illness.

*they would already know what it's about. If they think that I'm lazy and/or crazy, no matter what I say will change their mind so why waste the time?

*Here's my explanation of lack of energy etc
http://kangastu.blogspot.com/2010/02/fuck-spoon-theory-its-for-girls.html

*I tell them it feel like over exercising until all your muscles hurt and then coming down with the flu at the same time.

*No one in my family or friends care or take the time to understand, I am on my own, really hard and makes me so frustrated and angry, if it were them it would be a whole different story. so i just have learned to stay isolated.

*I have sometimes shown them the story of the 'spoon theory'

*wow, I can't believe that I am not the only one who can't be bothered trying to explain it. Sometimes it just takes more effort that it's worth. And you can tell if a person isn't getting it. So much of what you all have said is 'exactly' the way I think. I mentioned a few times (to family) that I budget my limited energy, the way a person might budget with limited funds. There is only so much, and I have to choose what I want to spend it on. And once it's gone - that's it. I'm pretty much done for the day.

*Simply pu, I find it easier to explain by asking folks if they've ever had a true Flu, and if so, that's how this feels, but it never goes away. If they're interested and want to know more I'll mention the plethora of symptoms and always make the point of what an Invisible Illness this is. Funny, if we wore a body cast for the total body misery, there wouldn't be any question as to the validity, eh?

I think your explanation is brilliant, most people don't really want to know or understand. I have a fantastic hubby that does everything he can to make thing's easier, the kid's just think I'm still mum though.

* don't, it isn't possible

*Anyone go into remission of sorts. I was a personal trainer for 6 years. Was okay for 2 had a fall and now its been 2 1/2 years of living hell. Life destroyed. NO support from family or husband but really don't care I have friends that are my support.

*I tend to have real problems with getting anyone to believe I am really ill, My hubby has been really good, taking over most of the jobs I used to do around the house etc. but that makes me feel more guilty sometimes and can get quite angry with myself when he does it wrong or doesn't do it at all.

This also makes my depression worse that so called friends no longer call or visit, I spend days before I talk to anyone other than hubby and kids, and then If I do go to talk to a friend they lose interest very quickly when they realise I haven't cured myself yet.

*Like having toothache, various levels of pain, there all the time,moving from place to place which you have no control over, wearing you down. Imagine that every hour,every day, even at night. Rattle when I move with pills.

*I say it's like arthritis but instead of it effecting your bones it affects your muscles. People seem to understand about arthritis so it's an easy way to make them understand.