Work related question

How did your employer react to your fibro? Have you been able to carry on working, have you changed jobs to fit with your changed health or have you stopped working?

*I had to stop working. I am a licensed Nail Technician and I have nerve damage in my right arm...so I can't use it like I used to.

*Well I'm still managing my degree but I guess I'll find out how work goes from August when I'm on my placement year, really scared I'm not going to be able to cope :-(

*I used to be a typist/secretary and I had to give it up because I cant type like I used to for as long as I used to and I find it hard to get to work in the morning on time. I was always getting into trouble for being late so I gave it up. I have retrained to be a balloon decorator and trying to keep my new fledgling business going.

*Gone from head of department (teacher) to being a cover teacher. am just off work way too much to be any use to the kids

*I've been unemployed for nearly a year and having a very hard time finding a new job.

*I've realized that most of what I know how to do is getting more difficult and most employers would not accept the things I can't do.

*I had to stop working, I managed a shop everything became to much. I also have 3 prolapsed disc and chronic back pain . But still cannot get DLA. soft hugs to everyone. And thank you Fibroduck I received my wee duckie today he is so cute , I will be taking everywhere with me and also to all hospital and Doctors appointments.

*I Have changed jobs a few times.Been in current job two years,but have been off work for the last two months don't know yet if I will be returning.I only work three hours a day

*I am the same work proved too much and at the moment not looking Pray the summer whether will be kind to us gentle hugs to all and Fibro duck get well soon we miss you x x

*My boss is so lovely knowing I have Fibromylagia and ME and now I am cutting down my hours because I am having a cochlear implant operation in 3 weeks.

*No longer working, worked for NHS for 5 years. Couldn't cope any more. Was off sick for a while and then finished on ill health grounds.

*My boss was useless,so were my colleagues,I was forced to resign in the end after a lot of bullying to do so,not a nice experience,(that was 5yrs ago),not been fit to work since. I would have had to give up my job eventually, but I felt the way my situation was handles was terrible.

*I have COPD as well as Fibromyalgia, and after five and a half years at my last employment, I became unable to maintain their performance targets - I was sacked!

*My bosses call it my fibre optic illness lol. They takes mick out of me but it all in jest they keep me going in a way . They're always there for me on by bad days. I changed my job role through FM from team leader in busy restaurant to receptionist in the adjoining hotel. Would like to think I could go on working there for long time to come x

*I am at home with my two little boys at the minute but when they are older, I will need to re-train as I won't be able to carry out the jobs I previously worked in - Nursing Auxiliary and Beauty Therapist - as both involve standing for long periods and a lot of manual work.

*Sorry to hear of how some of you were treated. I haven't worked in very long time. Besides Fibro, I have 5 bulging discs in neck and 5 in back with one bone on bone, diabetes, HPB, I can't even get in the floor to play with my 2 yr old grandson.

That's what hurts the most and the fact that I can't remember my 22 yr old daughter in her baby bed...if it were not for pictures and videos I wouldn't remember. I so hate that, but, I keep going through the pain, I won't give up.

*They were only worried that they would be out of pocket and were glad to see the back of me when I had to stop work because of Fibro!

*I haven't worked in a long time, thought it was worsening arthritis, had 4 lots of surgery for that. But now I know it's also Fibro, and has been for years.

Retired/disabled for some years now, lucky I got DLA for life, if not since my husbands death I'm not sure how I would have survived but think I would have had to try to find work which I could cope with. Fortunately I also have pension from my husband, so don't need to claim incapacity etc. so not constantly nagged from DSS to work.

*My employer is trying to get me early retirement on health grounds. Not sure what will happen if the application is denied, I keep phoning and asking but all I get are promises that the boss will call me back - but he doesn't. At the moment I am on three month sick leave.

*My boss didn't believe me at first ( was working in a pub ) then he cut my hours every week making it impossible to carry on as the atmosphere was awful, so I left and am now too poorly to work. I get DLA but it doesn't go far.

*My employer likes to try and push me to far since I was diagnosed.I tell her when I can't do something but she gets angry.I know when something is too much but my boss thinks because I am young I should be able to do whatever she asks.

I get pushed sometimes beyond my limits because she is too lazy to do her job and find someone else to do my tasks.I won't quit working even though I know she would love that.I do the best I can because my clients count on me to be there for them.

*It is dreadful how some people have been treated. I am in the process of leaving work on ill-health grounds, though it is taking them an age to get around to it - did say I could just resign, but somehow that didn't feel right to me, also they wouldn't owe me any money! But they have been good really, especially my line manager. Thing is, Fibro isn't my primary diagnosis and I have had lots of surgery so things may have been different if it had been?

*I am very lucky! Have been working full-time at a School for Special needs children for the last 4 years. Last year January finally diagnosed after lots of time off. My managers have been brilliant and have done everything they could to help me, but at last visit to Occupational Health it was decided I'd better reduce my hours to part-time instead of reaching for an impossible goal. So since last week Monday I am now officially a part-timer, And even 14 hours a week is hard at the moment.

Now if you don't mind I have a question for you all:
Because FM caused me to work less, where can I apply for financial help please???
I have applied for Permitted Work and Disability Living Allowance, but am still waiting to hear from them. Hope you can help, cause it's a Jungle out there ;o)

*I had to quit my dream career that I started just 2 years before I was diagnosed. I ended up going into business with my husband instead. Though I work harder than I did, I have way more flexibility. For instance, I can sleep in longer after sleepless nights, take a day off if I am in worse pain than normal. I can also work from home in my pyjamas.

I don't know how I could manage if I had to work for someone else. Most people don't believe there is anything wrong with me because I LOOK fine. Sometimes I wish my hair was falling out so people could have some indication that I really am not fine!

*I still work virtually full time. It's hard sometimes but I try not to take time off. Feel like I'm giving in to the FM if I do that. I work with some fab people and we are great friends. They are very understanding.

*I stopped work totally a year ago, Id retrained and loved my job too, but it was just not fair me being off more than I was ever there. I resigned because I felt bad for those carrying my weight. Employer was great though, have often been offered hours back there.

*I'm just about to go down to a 3 day week, working helps keep my marbles, lol

*After demoting myself, dropping my hours and then being signed off for 8 months after a mini breakdown and a severe increase in my daily symptoms that left me unable to walk wothout crutches and pretty much confined to the house, my contract was terminated on capability grounds in December 2008, my GP refuses to sign me as fit for work as he
thinks I am not going to get much better than I am now.

Work were not at all supportive until I brought the DDA into play and then they couldn't help quick enough!!! didn't help though.

*I work 4 days a week, 3 from home and 1 in the office, 30 minutes train ride away, it's still hard but I am so lucky to be able to work pretty flexibly. I doubt I'd get another job if I was ever made redundant though. What can you do when you don't know what tomorrow is going to bring?

*I was a self employed gardener when I was diagnosed. needless to say I not only lost my job, but lost my business too. I haven't had any employment since as I have more bad days than good and don't see the point in even applying for a job as I feel I won't be able to put in the hours, even if it was part time :(

*Only work 4 hours, 4 days a week and can just barely tolerate that cause sometimes go over 4 hour mark and I am really hurting have to use cane to get into car.

*Unfortunately my career as a midwife was topped short after Fibro took a hold! Not much use for a midwife who can't hold a baby without risk of dropping. NHS didn't want to know me:(

*Unfortunately I had to stop working - I was a student nurse - and there was no way I could do that, but it took 8 years to get a diagnosis.

*My employer is quite good I work flexible hours so can go in later or leave earlier if i need to can also most times ring in on the day or ask the day before for a day of they have raised my sick levels from 8 days to 27.

I had to leave my previous job because of my FM and had to change my type of work totally to allow me to work, I don't know what I'd do without flexi hours definitely couldn't do a normal 9-5 job.

*Question, if you was working 16 hours you would be able to claim working tax credit as you are doing 14 hours this wouldn't be enough hours depending on your wage you may be able to claim job seekers allowance but if you earn more than they would pay this option would be out have a look on www.directgov.co.uk or pm me and I will look into it for you when I'm at work blessings.


*I've worked in various jobs over the years but all proved too much. Voluntary work where in control is best for me and doing creative writing at my own pace.

*I am a welder, work mostly in ship repair, a very hard job, for anyone. I am one of very few women in the field. I fight through it on my own mostly. Don't tell a lot of people, just drop my shield to hide the tears on bad days. Most of my bosses and co workers don't fully understand how great my struggle is or the amount of pain I endure, cause I look healthy.

It's to hard to explain so mostly I don't bother. This years lead hand for the winter rush was very understanding, but I don't accept special treatment, My motto is if I can't do the job, I shouldn't be here. Come spring time I usually take some time to recover. Even though its very tough and I suffer quite a bit, it feels good when I make it through and still do my job very well. Like I tell the guys..suck it up buttercup!

*I actually got fired because of missing so much work. So now I am on disability *thank God*


*Kept having to change my own schedule (was working part time) I broke my wrist while moving and was told (not fired) that if I was able to keep a regular schedule to let them know. (we were moving an hour away and my hubby was still working there so I would have had consistent rides) never went back. several years later after applying for disability I became classified as disabled.

*I'd worked in the NHS since 1988 worked as a nurse and midwife. I have multiple problems one of them being FM, I'm on Fentanyl and Tramadol and been told by the pain specialist not to expect to ever return to work. The NHS sacked me 18months ago after long term sick, but the real punch in the face is the fact I'm not ill enough to receive my NHS pension as they believe I'm able to go back to nursing. my wonderful partner gave up work 8 months ago to care for me and my kids. We now have not only health worries but money worries too.

*My female Manager has been really good and has tried her best to understand. Her son and mother keep poor health, so she understands the hardship that poor health brings. She always gives me a hug when she visits my workplace (as she works on another Site in Cheshire) and always has time for a chat to me. She is helping me look into finishing on ill-health and is giving me all the support she can.

*My Fibro is a direct result of a work related injury. I stopped working because of the hip injury but have yet to go back (2 1/2 years later) because of both the hip and the Fibro. Just talking today with my therapist about the very real possibility that I won't be able to return to teaching. :( VERY frustrating as that's all I've wanted to do with my life.

*I have carried on working and its been OK,I work for 34.5 hours a week split into three long days of 11.5 hours, I don't work two days in a row and attended a pain management programme to sort out pacing and other ways of coping, its been OK,I've been off sick with flares a few times over the last few years but I seem to be managing this really well.
I put it down to my meds, I have a really good GP who has been very supportive and keen to keep me mobile,l keeping active helps as well, I went thought a spell when I wasn't active at all.

I spent lots of time in bed or lying on the settee and my symptoms got much worse I got fed up in the end and made the decision to exercise when I can,now I do gentle exercise ( walking) my symptoms have calmed down a lot, I still have background pain but not enough most of the time to stop me from working, my employers have been really good so far and I do try my hardest to keep myself fit so I can work ,it works for me most of the time , I only have me to pay the bills and mortgage so I have to work , I have no choice.

*I forgot to say I'm a nursing auxiliary, reading all your replies makes me worry, how on earth do you get by being unable to work,it must be a nightmare trying to survive on incapacity benefits

*My employer doesn't know. I do supply for the LEA and just never told them. I work as I can and as much as I can manage

how did your family react to your diagnosis? has their reaction changed to you over time?

*My family thought I was lazy some of them still do and don't understand as I don't look ill.

*My mother still thinks I'm able to do the same things that I used to do but obviously I cant, she doesn't really believe I have the condition, not even now 3yrs after it all started!! Does anyone have advice on how I can cope with the chronic pain I have please?

*My hubbies brilliant, but the kid's seem to understand sometimes, like you say they only see the outside not the pain within.

*Mine are the same, they think I enjoy being like this, not being able to do the things I used to enjoy never mind the things I have to do.

*As they can't really see it they had a hard time accepting, fortunately my Dad was with me when I got my diagnosis and read some leaflets but mum doesn't really understand and thinks I just have a few aches and pains. I am lucky to have a very understanding bunch of friends, some are sufferers themselves and help me by listening and understand in a way only someone who has this can. I am so sick of people thinking its all make believe or that I am lazy or lying.

*I am fortunate because my mum has Fibro as well so everyone in my family understood what FM is and how it can affect my life. Also because my mum has it I was diagnosed much quicker than a lot of people are it only took about 10 months. And I was able to get my FM under control in about 2 months after being diagnosed, since I knew so much about it from my mum.

*I broke up with my partner as he thought I was lazy and if I didn't sleep all the time I would be OK, also they don't understand how you can be OK one day but not the next is what I hear, my kids try to understand but I don't think they do,how can you be so ill when you look OK is what most people think, I wish I didn't have to live like this, I cant even take care of my own house these days, and with not being active the weight piles on which doesn't help.

*My family was just happy that we finally know what was wrong with me. Then my mom and dad started look up very thing that they could so they would know what I had and how to help where they could. so of my family was not as supportive and just did not get it. tell they started show stuff abut Fibro on television, then they final woke up and quiet think that is was all in my head.

*I have a very supportive family and friends. I have meet a lot of great people on Facebook and other sites that have Fibro and understand.

*I agree, some believe it's just a load of crap. That Dr.'s diagnose you with Fibro when they don't know what is wrong with you. Only you, and other sufferer's of FM truly understand.

*Exactly ! mind you I get fed up with myself . Does anybody else ?

*If you find an answer for your question, will you please let me know. Without the pain I could do a hell of a lot more.

*My hubby was a fiance at the time and through all the changes he is still with me and even married me. He does a LOT of things around the house and takes great care of me when I'm having a bad day. Even when I'm not having a bad day as he knows if I do certain things, that I will hurt later.

*My parents fought so hard to get me diagnosed with whatever it was I had and my doctor was just as great. When I was diagnosed my parents and my doctor then researched into more and my mum still does to this day! She has got me an appointment with a specialist at guys hospital as the doctors here just say that I'm on enough pills to knock out an elephant and that they cant do anything else for me!

*My husband's upset simply because there's no cure, he wants me to get better. He's been really frustrated trying to deal with my symptoms. Overall, everyone's been really understanding. I think it helps that I prepared a lot of them for it. I told them about the problems I was having, and told most of them that I thought FMS was the cause.

*Most of them had already gotten a brief explanation of the condition, so all I had to do was tell them that the doctor confirmed my suspicion. Now, there are just a few people here and there I have to explain to and haven't had many problems. I'm so thankful. My mom has FM and my dad has chronic pain, so I think that also helps.

*My husband and children have been more supportive than I could ever ask for. The grand kids are wonderful. The oldest were 4 and 6 when I was diagnosed. They understand that MiMi can't always do things I want to because my muscles don't work right and I get tired easily. Last summer I had to use a cane for a while and they always made sure that it was handy if I needed to do a lot of walking.

My MIL doesn't understand it but says that she can look at my face and tell that something is wrong. When I get down, she tells me I'm doing the best I can and to keep my chin up. That's much more than I ever expected from her.

*Yes I feel like everyone thinks I am just lazy. And sometimes it gets to me and I think "maybe I should just suck it up and try harder". But I feel the pain they don't. My husband says "I understand" but I don't think he does because he gets angry when I can't do things. Or when I just have to rest.

I have been a stay at home wife and mom since 2004. And I get a lot of "you just need to get out and get a job and you will feel better". But some days just getting up, showering and taking care of my daughter and the house is overwhelming. Thank you all for being here and sharing your experiences. It makes me feel not so alone.

*My fiancée is the best, he has been by my side since my diagnosis almost 4yrs ago!! the rest of my family haven't got a clue what I go through on a daily basis, they don't understand & don't think they can because I still have all my arm & legs & look normal... Aaarrrgggghhhh

*I feel the majority of my family don't believe anything is wrong. the only time I see them is when I'm well, which isn't too often. I get most support from my eldest niece. she's great, don't know what I'd do without her.

*I certainly will my friend. I use Transtech Patches at the moment but they barely touch the surface(its morphine delivered through the skin on a sort of sticking plaster!) They help a little and when its bad I can have liquid Morphine but not keen on having that! I do know that some pain clinics are trialling a drug called Pregabbalin (I think thats how you spell it!)

Anyway they are having quite a lot of success in the treatment of FM so you could ask to try that. Its unsuitable for me which is why I'd like to know if there is anything else out there that might help. Can I add you to my friend list Lynn, it would be excellent to have someone in the same boat as me to talk to?

*My partner is fantastic as is my son, I would be lost without them thanks guys.

*Don't feel like writing about my family for everyone to see but I would like to share that since I've began taking Guaifinizin and going to trigger point therapy, went to few sessions ans have been doing it myself since.

my life as really changed. I still can never know how ill feel tomorrow but I can say that slowly but surly I'm gaining some control over my life (after over 10 years 3 of which I've spent mostly in bed.

*My hubby and good friends are really helpful but my dad regularly refers to me as lazy

*My family blanked me and they still do even though I now use a wheelchair. They don't care.

*Yes I have a hubby exactly like yours and I'm like you, do too much and I can be laid up for days! I'm going to struggle tomorrow as I did a little pruning today and by the time I stopped I was shaking from the strain.

*My family refuses to educate themselves on FB.I had it for 11 years now.There are days that I can barely move,walk,anything.They think I'm lazy and just don't want to go places.They don't understand that sometimes I am in too much pain to travel.I can't just sleep anywhere due to the pain.It has to be a pillow-top bed and 6 pillows propping up my arms and between my legs lying on my side.

They really don't care.I get made fun of because I moan too much..I do happen to have the best husband in the world,he gets it,he cares,he doesn't make fun of me and he knows I'm sick not lazy.I have stopped talking to my family about my FB. I am considering not talking to them at all any more.They make me feel horrible about myself..I don't need their help for that I do a good enough job of that myself.I have no support from my family at all.

*I found a good way to explain it to people. It's called the spoons theory. If you Google that you should get to a story that might help.

*Sometimes you get a better response if you liken it to similar conditions that most people understand like arthritis. I think back to the time when I was on holiday with my parents-in-law who are in their 70s and I couldn't keep up with them! Young on the outside and old on the inside.

*I have to say my hubby, children & family were very supportive & still are :) as I'm not the only one in my family that has this, so we support each other & do what we can to help each other through our tough times.

*My mum works as a physiotherapist for a chronic fatigue clinic, so she's great, totally supportive and has really helped me cope. My dad was pretty hard to deal with and pretty much just thought I was putting it on or depressed for a long time (with Fibro ,who wouldn't be at first??) the rest of my family don't know much about it but don't really need to

We see them occasionally but I only go if I'm feeling pretty good. someone mentioned pregabalin. Its already being used where I am and although its hard to get, it will be pushing for it, its totally changed my life. had Fibro for 4 years and was barely able to function until I started on it:)

*Yes, I get fed up with myself because I feel so useless, impatient, depressed, sad, you name it, my list could fill a page!

*Yes definitely. My Husband and Daughter didn't really understand until they watched me go downhill so rapidly since Christmas. They have accepted it better than me really!

*I know exactly what you mean I get fed up with myself I feel useless and even sometimes question whether it's cos I'm being lazy, although I know it isn't even though I was diagnosed over a year ago I'm still finding it hard when my brain tells me I can still do thing's but my pain and tiredness say different.

*My biggest problem has been my brother, we were really close before I was ill because I was the one always running around after him, that stopped and he didn't like it, it culminated in a huge row a few months ago and we haven't spoken since.

*Yea, and now I am treated like a crazy person. Fibromyaliga has taken my life away from me. They don't understand it. And could care less. That is my extended family, they think GOD almighty is going to Heal ME LOL!

*It was odd for us as my family didn't see me at my worst. We had moved away 3 months before, the move had given me my first major flare. Since that happened almost 4 years ago both my family and my in-laws have tried to be supportive. Sometimes they get it wrong, and can be a bit trying, but I know they mean well.

*They all were like "hmm so you weren't just doing it for attention," and no it hasn't really changed, they still think I am "over reacting"...sigh...

*I also did some pruning today, and then sewing, ugh, so my hands are pretty painful tonight.

*My husband was great at first but seemed to get tired of my being sick and tired. Completely checked out, spending as much time out of the house as possible, leaving our daughter to fend for herself much of the time. I'm doing much better now, thanks to detoxing and the marriage is over.

*Mum suffers with FM too, kids are young and found, still find it very difficult. Are coping with changes slowly but surely though

*As soon as I was given my diagnosis my sister in law and brother went from regular contact to almost no contact...my husband says I'm probably paranoid but my brother has never been good round illnesses and it is a bit of a coincidence!

They are emigrating in the summer so goodness only knows when i will see them or my nieces and nephew again, at least my mum is honest and says she tries to understand, although she has ME and I do wonder how she doesn't understand but there you go I guess!

*My family don't really understand it even though I've given them information. My dad sees I struggle and does what he can to help me when I'm at his house, has even given me my mum's old walking stick, but I don't think he really understands why I find it so hard to get around. My sister I'm not sure understands either.

I don't see the rest of them but I can guarantee you if they were to give me an opinion they'd just say I was just being lazy, what's wrong with me is no more than what a normal person would endure.

I'm sick of everyone thinking I'm just lazy. Fibro has taken away my ability to work, and being a workaholic, I feel totally utterly useless.

*Most forget that since I look OK I am OK

*Not surprised at all, it is just part of my 'hypochondria' to most of them just another thing for me to complain about. Only my girls 20/19/17 truly understand as they live with me 24/7 and see how I struggle each and every day. Even though I have handed them leaflets and articles, they still do not comprehend.

*My husband has been very supportive, although he gets angry that my GP is so unhelpful. My parents read the leaflets I gave them, but, I suspect they think I'm making it up as an excuse to stay in bed!!

*My immediate family felt relief as did I, but it came too late to save my marriage and my career.

How far can you trace back the symptoms of your illness? And how long did it take you to get diagnosed?

*Mine started about 4/5 years ago and was diagnosed about 8 months ago with HMS then again 4 months ago with Fibro!!!. Make any sense?!

*Looking back I have suffered since a teenager with bits of it then was diagnosed with something else but have now been told that was probably Fibromyalgia as well so if you count from that would be 14 years if take it from when a lot more symptoms kicked in would of been 2 years

*Could take mine back till I was 18, was always palmed off with things like pmt, being overweight etc. Having been in a bad car accident was always told its because you had a car accident! then was diagnosed when was 37,luckily had got a job working with someone who had it and pushed me to go to doc as she recognised my symptoms.

*I can trace back the symptoms of Fibro to 1993-94 when I was in the last 2 years at secondary school and was always getting hurt in games (PE) by spraining my ankle a lot or my knees would give way a lot too but I wasn't diagnosed till 2004 after having an x-ray done on my right foot and the DR picked it up then that I had both fibro/ hyper mobility syndrome

*Mine started when I was between 29 and 32. I was so tired all the time and achy.For years I was told by various people and DR it was all in my head, I was just lazy, I was depressed, I was trying to get attention and so on and so on. Finally in the late 90's a Dr told me I had Fibro and further down the road two kinds of arthritis and a thyroid
condition. She finally had me feeling better and at least able to cope. Then she retired and the DR I have now says it's all my weight, took me off my thyroid meds, refuses any kind of pain meds etc and basically said there is nothing wrong with me except high blood pressure.It is very frustrating and I've gone from an active life to watching it go by out my window. Trying to find a dr now that my insurance will cover.

*Most of my 32 years, I was finally diagnosed at 13. Some say not possible, but I've lived with the pain all my life, I think I know.

*I had growing pains as a child but they went away as I got into my later teens. Then the pain started for real when I was married the first time to an abuser. I think that is what triggered it all. That was in the mid to late 1970s. Got divorced in 1980 and have been gradually getting worse year after year.

*I was 11 when I first had pain. I was an insomniac as a child so never slept much but wasn't tired like I am now. Nothing found on all sorts of tests at 11 years but later when in late teens a consultant told me I was fat and lazy even though he apparently wrote Fibro on my notes! Was actually told in early 20's when I went back again. But no treatment of any kind till I was in early 30's. I'm now 36.

*Teenager definitely, was diagnosed with various things like Anaemia, depression, thyroid issues etc. I got to the point where I got sick of my own complaining and just decided that it was all in my head and was embarrassed to complain any more. I was diagnosed two years ago at 43.

*July 2003 after birth of last kiddy, kept putting it down to post natal depression knew it wasn't as had that after my first born Then in 2006 got pneumonia defiantly c.f.s. from then got both dx in 2007. Didn't do to bad compared to many out there!

*Mine go back to at least 15 years. Started with low back pain, then upper back and neck pain. Last yr it moved to my legs. I was just diagnosed this year in February.Been to 14 doc's and none of the other ones had a clue.

*I Have lacked in energy compared to my siblings since I was about 11, don't think I can remember what it felt like to be normal but my full on symptoms 13 years since having my son, got diagnosis last November!

*Teenager. but worse after each birth (3 kids, one miscarriage) Diagnosed with Hashimoto's disease, so think thyroid and Fibro go hand in hand - hard to know what came first like the chicken and egg!

*Symptoms around 5 years old diagnosed at 16

*Started 15yrs ago, left leg got weak and I fell, then came the redness across my cheeks, then muscle burning, 4yrs later came the pain etc.

*My Fibro kicked in 11 years ago after a period of major stress and was very lucky (from the sound of it) to be diagnosed within 6 months after a friend with Fibro recognised the symptoms ad suggested I go private to see a Rheumatologist. It was originally put down as depression. I gradually got worse over a period of time before having to stop work. Another Rheumatologist daignosed CFS only recently. And I have regular contact with a great occupational health specialist at Derby hospital who has been of immense help to me.

*Finally got diagnosed this afternoon after suffering since 2003 but only being taken seriously by a doctor in February 2009. I really cant begin to tell you the relief that I feel at this very moment. I thought I was going to burst into tears in the consultants room. I have spent the last 7 years worrying that I was going crazy, had a sinister disease, was imagining the symptoms etc. Although I know that Fibromyalgia is a serious illness I can at least deal with it, try and find suitable medication for the pain and not be accused of being lazy or "washed out." I was going to get a photo of him with my Fibroduck but I was a little overcome.

That's the way I felt when I was told it was Fibro after so many years of being told I was lazy and should loose weight etc! You can learn to live with it hun - you have been so far so be proud of yourself. Diagnoses is a good thing if you can find out more and learn what suits you best in terms of pain management etc.

*Isn't it funny - most info I have read says it affects most people from 30's on - but how many above say teens or younger like me?

*As teenager was tired, was told lack of Iron. I was diagnosed after the birth of my last daughter in 1987, she is 22 now, she use to think it was her fault. I had been the doc so many times it was ridiculous. Internal medicine/infectious disease doc. he had no telling how many files on me. Would try me on every medicine and I would have some
type of reaction. Went to rheumatologist and he actually sat down and talked with me.

He diagnosed me. I am one that doesn't give into it and I never will. Just sometimes my body tells me you need to rest a bit. I use to go to support group meetings but, didn't learn anything that I didn't already research myself. Have had docs that say it will never go away, it will only get worse and I just said and I am suppose to pay for this visit. I have a great rheumatologist that understands and believes in Fibro, almost 23 yrs now, It helps to know that someone else knows the pain and understands how you push yourself everyday.

There are people so much worse than me but, I have to tell myself doesn't make me any different. It helps to have people here that put their stories. Sometimes, you keep doing things so therefore, your family doesn't see your pain.

*I've probably had it 5-6 years without knowing but was diagnosed just over a year ago, after to-ing and fro-ing to the doctor with aches and pains that just could not be diagnosed , the exhaustion was an easy one it was just chronic pain all over my body 24vhours a day , also the on going depression with feeling totally fatigued first thing
morning and so many other symptoms,

*it was a relief to finally have a diagnosis and be believed, when I looked on the internet and discovered the many sites out there it filled me with hope that (a) I wasn't going mad (b ) I wasn't on my own and very importantly (C) there was hope and others to talk to about it, I would be lost with out you guys . To all other sufferers I send gentle hugs.

*I've had symptoms of anxiety and irritable bladder all my life, panic attacks, headaches, terrible periods since puberty, pleurisy in mid 30s, aches and pains for years, fatigue for last 10 years, diagnosed in January aged 50 (at my instigation!) after seeing link on tendinitis otherwise may never have realized. I was very relieved with the diagnosis.

*As a child I was told I had growing pains that was over 40 years ago all the pain hedaches only found out what is was 3 years ago for years I was beginning to except the doc explanation it was all in my head. the only difference now is I know it is not all in my head just cant do nothing for the pain.

*When I was 12 I got glandular fever. I got it again at 16 and 18 but my mum said I was always a child who was tired. When I was 15 my back problems started and over the years I've had sore knees and muscles. I had a baby in 2000 and she slept 12 hours a night yet I was permanently exhausted. In 2009 I finally got a diagnosis after a really bad flare up when I couldn't get out of bed. At least I now know what's wrong and can work round it.

*In a way it is all in our heads. We just don't imagine it is all :)

*14 years ago took 12 months to diagnose

*In 2000 I flipped my jeep and started having things come up would go to get a pill for this and that. I also have Arthrogryposis, well during the year I went for my yearly check up and that doctor starting putting all together and asked if anyone ever told me about Fibro. Our gp at the time didn't believe in it but he would give the meds they said I needed. Today I have a pretty good medical team that works with me.

*17 years was diagnosed 8 years ago !! finally.

*I was in a car accident in 2004 and that is when it all started

*Had the symptoms about 17 years ago, was diagnosed 12 years ago.

*Started 12 years ago. I was diagnosed with breast cancer, had a lumpectomy and it developed while I was having chemotherapy and radiotherapy. I was only diagnosed 2 years ago.

*I have had CFS for about 20 years but only diagnosed about 5 years ago.

*Started with back pain the day after my 18th birthday...took 1 and half years to get diagnosed, April 2009.

*My symptoms go back around 25 Yeats but sought help 4 yrs ago when pain became to irritating. Was diagnosed on first visit.

*I think mine started slowly about 5 years ago with aches and pains awful pregnancy's and periods. Constant backache and same as everyone lots of trips to the DR'S and lots of fob off's slowly got worse during my last pregnancy 2008 and by the time I had her I was in a wheel chair unable to walk due to the pain. It has gradually got worse since
then was diagnosed very quickly by march 2009 but am still really struggling.

The rhuemy I saw was awful and just wrote me off and said learn to live with it. Have a second opinion appointment next week in terms of care and a plan to help cope with the pain,depression etc, and looking forward to being a more hands on mum instead of the kids looking after me and helping me.

*For about 15 years before diagnosis I would randomly show signs of FMS - unexplained joint or muscle pain, bouts of unshakable fatigue or insomnia, IBS, headaches/migraines, but no way would I have thought they could be connected.
My first major flare up hit in 2000, but I have a distinct recollection before that of feeling like I'd forgotten how to do the most basic of things because everything - walking, eating, brushing my teeth, sleeping, talking - had suddenly started to feel 'weird'.

I couldn't identify the sensation - it was sort of like trying to do things with your non-dominant hand, but wasn't limited just to hands. I couldn't get comfortable and everything felt like I was doing it wrong or had never done it before. I've never lost that feeling since. Then I had my first 'proper' flare up covering nearly every symptom connected to Fibromyalgia and it took 2 years and a new doctor to even get a referral to a rheumatologist.

*Fibro about 18 years ago was diagnosed 4 years later was told i had m.e.,glandular fever twice then sum time down that long road was told I had chronic Fibro and years ago was told I had bad winter pains by my doctor!

*If I don't count the myriad stomach problems as a child, due to a stressful childhood or a bad post-partum depression in my early 20s, I'd say my first symptoms began in about 1996.

I went through a number of tests for stomach and intestinal issues...all they ever found was GERD. They wrote it off as "Irritable Bowel Syndrome" and I was stuck there until 2005 when I found a really good doctor who actually *listened* and eventually gave me the diagnosis.

*I can trace mine back to the age of 8 I'm 46 in two weeks and got worse 21 years ago after having my children but was diagnosed 10 years ago after seeing a specialist. Kept being told I was unfit and to exercise more when I found the stairs and walking increasingly difficult!

*I go back to puberty. Diagnosis took about 5 years once I realised what I had, and then had to convince the GP. BUT didn't do me any good. Diagnosis and nothing since.

*For me I think I have been having symptoms for about 40 years beginning with joint and muscle pain and IBS. Got diagnosed approx 3 years ago. I am grateful I have a supportive GP.

*Insomnia and constant viruses as a child, always felt ill. Not diagnosed until I hit 40 though, most people have a mid life crisis around that age, I had a diagnosis instead :)

*About 10 years ago. Diagnosis 2 years ago. Good medical team here in East Sussex. But been told by GP nothing more they can do for me but treat the symptoms.

*At the age of 3 in 1959 my mum was told I have growing pains. I'm only 4'11" now. I was diagnosed with fiberitus at 14

*I can track mine to when I was 15 years old. When I had a c section at 24 the symptoms seemed to gradually get worse and worse. I got diagnosed by accident, which is fortunate. However, I spend years of my life not feeling good and having doctors(and myself) not believing the severity of it.

*20 years diagnosed 4yr ago, still trying to 'pace' myself the stubborn b***ch I am!

*When I was 12. That's when I remember things starting to the point it was detrimental to my daily living, such as being able to participate in PE. I used to be the fittest kid in my class, could even do hurdles with relative ease, then one day I just couldn't, and the pain started and I got worse and worse. Kept getting passed off as lazy. Finally got my diagnosis last April, aged 25.

*Really felt it about 9 months ago after a viral illness that knocked me for six. Have had other symptoms for a few years though. A great GP meant that I was diagnosed after only 4 months, but I know I am the exception.

*Why is it taking so lon it seems fairly common for the symptoms to be missed over and over again and not tied together, how much training do GP'S have on the condition??

I’ve been referred to a pain management course, what can I expect?

*so have I but still waiting for an appt after 5 months

*I've only been to a pain clinic at the hospital, I had about an hour with a pain consultant who explained to me in layman's terms what Fibro was, where it came from (as much as docs know right now anyway) and all of that business. Then I got a short physical examination, prodding my pain points and that was it. So as for this pain management thing tons of Fibro folk have been put on, I know nothing of it.

*I have my appointment in a couple of weeks, I am told the idea is to find out what you can and cant do and try to show you other ways to do things to make it easier for yourself, as to whether this is true watch this space, I will let you know when I get back, when is your appointment ?

*Oh and I was told I needed a shrink too, the psychology approach paid off way better than pills, which I agree with. This was all June last year and I'm still waiting.

*Guy I saw was really nice went through medical history and then my options and even too me off meds that made me put on weight, was examined so was painful but no more than usual prodding and poking.

*I done one of them last year. We had a physiotherapist and a physiologist running it. I really enjoyed the course, but admit I was very overwhelmed on the first session as I we discussed our day to day problems. It was only then I realised I wasn't alone. They gave loads of help on pacing and exercise. Well worth the weekly trip out if you can make it.

*I'm on a 8wk pain management course at the minute been to 5 up to now, as its been stated it is how to manage your pain and ways of limiting yourself to what you can and cant do.how to get others to understand what you are going through,it is very interesting and you get to know others who know what you are going through.

*I'm still waiting for my appointment to come through, also been referred to cog behaviour specialist. Again still waiting for that appointment. seems all we do is wait!

*I was denied a pain management course and CBT is non existent on the NHS in Wales!

*Well my experience was, first appointment doc says I'll see you in 3 months and see how you are. Second appointment Three months later doc says well there's nothing we can do, didn't try anything or even suggest anything.

*In the US (at least with my PM doc) we started with low dosage pain meds, physical therapy and exercise. We have tried many different approaches and medications. Now I'm on meds for sleep, Savella and several pain meds.

*I got "we can only really teach you an attitude and how to pace yourself. Your already doing both so there's nothing we can do for you, bye." On the other hand my dad went and they did a lot of group psychological stuff, taught him how to pace himself and gave him some exercises to do. Also taught him some relaxation techniques. He found it really helpful and is a totally different person to prior the treatment (wasn't treated for FM though)

*I was also turned down for a pain management course, however they did offer a place on there FM course instead. Pretty much the same thing just based more around FM. Helped in some ways, not in others, I think if you have access to the internet and love to surf, you could learn most of it on the web. Quick chat with a physiotherapist and then the course leader and that was that, I took the course Last sept/oct, 2 days a week for 6 weeks, went on a downward slide towards the end of the course and had a big old flare up. Would I go on one again? Nah

*I've only ever really had the pacing/exercise/diet stuff from doctors. In other words, all the stuff I could have worked out by myself. Oh, and Lodine, but that has it's limits.

*They did nothing for me. They won't even prescribe anything that will kill the pain. No heavy duty stuff.

*I went on one at a pain management clinic for 3 weeks residential course, and I have to admit it was great the 3 weeks I was there as I had no one else to look after except myself, but boy did reality hit hard when you get home and back into the real world. Whilst I was there they taught us how to meditate, we done exercises every morning and basically talked about our condition and medication. Not sure if this is going to help at all, so sending you gentle hugs.

*The only experience with a pain management doc was more with the office and paperwork. I had to sign a paper that said that this doc was the only doc I could get any pain scripts from and list all pharmacies I deal with. other than having a rude office staff, running at least 2 hours behind (the day of my 1st appointment) I didn't stay for the appointment because of the paper that said he was the only one that could give me pain meds.

*My Rhunny told me that "A pain management doctor would be a good idea" when I asked her about going to one. That was in January of this year. I only knew of one and he was close to home so I wanted to go to him. Well here it is almost April and I am still trying to get in. My rheuma's office finally faxed my records the end of February. So
the pain management doctor needs stuff from my PCP's office. My PCP also suggested I see a psychiatrist. I had an appointment on March 10th but I cancelled it and rescheduled it for April 6th. I just feel like going to a psychiatrist is admitting it is "ALL in my head". Am I depressed OH YES!!! But we live with pain on a daily basis. And all kinds of other strange symptoms our friends and family just don't understand. So between the pain and frustration is it any wonder we are depressed???

From what I have read what they do ranges from medication to meditation, acupuncture, massage, water therapy. Hopefully I will get in soon too. Until then gentle hugs and prayers of good wishes, whichever you believe in.

*I believe it depends on the clinic. The first one I went to was unhelpful sand insisted I came off my meds in order to go ahead with the alternative treatments. I have eventually got referred to a different clinic and they have been very understanding, I have had a referral for acupuncture (nhs) counselling and hydrotherapy They also offered me a ketamin infusion for the pain which according to my GP is "lucky," hope that helps

*The one I went to was very good,they do a short exercise session,gave coping strategies, pacing yourself talks,they had a session with close family and friends to help them understand the condition and what they could do to help you. Self help, physiotherapy etc. over at 2.5 hour session. It helped me a lot I made friends too.

*I cant help, I am still waiting for my pain management appointment 2 years later!

*Hi, the one I went to was and is fantastic. They put me on their pain management course which was one day a week for 8 weeks. During the sessions we had help, talks, coping strategies including the above mentioned pacing. All given by a psychologist, pain nurse who did relaxation techniques and a physiotherapist. I now know how to get in and out of a chair properly without hurting myself further, how to sort stuff in my home around to help myself, which little exercises I can do to strengthen muscles and how far to go, very important lol and various relaxation methods.
I still see the pain consultant who didn't take me off my meds but suggested changes such as tramadol to slow release tramadol etc. Meds are so much better now. Also have a TENS machine and instructions on how to use it on the points that are used in acupuncture and how it helps. I found and still find the pain clinic essential to me and very helpful. However, I do believe it's different all round the country.
Good luck!

*If you are in Southampton. bugger all! I went, had a talk about the importance of taking your mind of pain blah blah blah, did try some counselling there for a bit, but basically FMS is something my lot didn't agree to being physical really. I really do hope you have a better experience, but do expect to be patronized again!

What has fibroduck brought to your life?

*Laughter.

*Much needed laughter mixed in with the non-hilarity of the life most of us live now. Conserving energies so we can enjoy snippets of our former lives.

*A type of tangible connection with others that have Fibromyalgia and a sense of community.

*That I'm not the only one suffering from this horrible condition

*Friends that I can talk to that understand how I feel. It has been my rock for morale support.

*New friends that understand my complex condition and stubborn attitude to life.

*New friends I can talk too

*Laughter

*I'm not going mad!! That FM is very real! I'm not the only one!

*I'm like you, I feel like I'm the only one too sometimes.

*A tiny, squeaking duck.

*Surprised at the amount of us that have Fibromyalgia!

*A new little brother for the triplets!

*I don't think I have met anyone other than on lime with FM,was beginning to feel I was going mad !! Oh n i also have a small squeaky duck and as of today keyring and badge!

*Learning from others

*Fun and friendship, at last people who understand!

*New friends and a love for the good times.

*The knowledge of knowing there are others worse off than me and great to read my symptoms are not just "in my head" but the same for most FM sufferers.

*I'm very new to Fibroduck but I'm excited to be part of a vibrant community of people who know how I feel!

*I live in Buckinghamshire England but also spend time in Louisiana and don't have any Fun, and laughter!!

*Fun!

*Has helped on my road to acceptance of my "illness". Also to see that I am not alone with this. I am new but fibroduck has made me smile again with and without tears! Thanks to you all!!!

*A very cheeky duck who must stop messing about with polar bears and cream eggs!

*A smile

*Understanding,friendship,fun and information.

*A smile and a laugh

*Laughter, fun, you!, friends and more people than usual looking at me like I'm insane!

*Smiles

We're very good at worrying about all the things we're no longer able to do BUT when you look back over your life so far, what are you proud of?

*Having my children

*I'm proud that over the years I've helped educate 100's of children

*Having been able to look after my two children (now aged 18 & 20 and one of which is disabled), to the best of my ability.

*Starting my degree with the OU

*Choosing to live

*Teaching, travelling and acting with ME/CFS and FM for 25 years. Must've been crazy!

*I am pleased that my son is a fine human being and is raising his children in much the same way as he was raised, to be kind, to be respectful, to consider others, to be responsible, to know that there are consequences and/or rewards for behaviour, and to love the Lord.

*I am proud that I am still managing my degree and aiming for a first, FM will not beat me!

*Despite my Fibro I lost 3 stone in weight last year and completed my PhD.

*I'm proud of my two boys.

*First is my children, we laugh all the time! Both have tourette syndrome. So just imagine my house?! Mum has headaches daily, and can't stand repetitive sounds and both kids can't help it, my marriage is the best on earth!

*30 years of marriage on Monday and two wonderful sons! Otherwise I have no personal successes! That makes me sad too.

*such lovely stories, its nice to read things like this & remind yourself that there are more good people in this world than bad :)

*so true, my daughters, now 22 and 27, my son in law and my grandson Luke, which will be 2-1/2 next month.

*My 3 kids.

*Proud of my family and doing my masters at uni

*Having my children, all 6 of them! And making it into the police force when I was younger.

*Beating or should I say, fighting my terminal leukaemia & raising lots of money for research. Also, being a listening ear for others newly diagnosed.

*my children

*Raising my Son and Daughter to be well rounded and confident adults with a great future ahead of them. And despite Fibro, I'm back at college changing my career direction to something I can physically manage and still have a future in.

*My 2 fantastic children who are both disabled and have turned into lovely well adjusted adults. After been brought up just by myself and help from family.

*Now I'm proud that I am still able to write and get myself published, just wish I had the energy to churn more of it out.

*It's quite sad that the questions asking about negative side of our illness get lots or responses, whereas when we're invited to pat ourselves on the back, we're reluctant to do so.

*Everyone's got to have something they are proud of :)

*I'm proud of all the opportunities life has offered me, and proud of myself for having the confidence to go out there and do it! Most of all I'm proud of being a mother!

*Like others on here I am most proudest of my 28 yr son but also that I spent all my working life nursing/healing others.

*I am proud of having my son at 39 with all the symptoms I had and not knowing that I had Fibromyalgia and still successfully teaching Kindergarten!

*So proud of my 4 lovely children now aged 31,29,23 and 10 the older two having lovely fiancée's, to see them settled and happy makes it all worth while!

*I am proud of my daughter, and my Dad who has given me the spirit and strength to deal with whatever life throws at me

*Writing and getting published. And singing when I can.

Would you take a magic pill?

Say a doctor came up to you and said, I have this magic pill, It has the power to erase all your symptoms overnight, but the side affect is a much shortened life span. would you take the pill or carry on as you are?

*Carry on as I am.

*I would take the pill. Quality of life and all that.

*Take the pill. Sometimes the pain is so bad that it would be worth it.

*How much shortened?

*I would take the pill, because then the life I had would be filled with life and not just me sitting watching TV and playing computer games all day long. I could pack 4 lifetimes into what time I had left!

*TAKE! MY LIFE IS NO LIFE NOW!

*Absolutely take the pill without hesitation

*I would carry on as well. I want to see my kids grow up, married, grandchildren! I'd rather grow old sick.

*Take the pill at last least then have some quality of life

*Me too, why throw away years you can have with your family.

*IF IT WAS PROVEN TO BE TRUE I WOULD TAKE THE PILL, QUALITY WINS.

*I'd go for the pill as well, without a seconds doubt. I'd rather only live ten years and have fun than live another fifty like this.

*Go for the pill

*I think it would depend on how much life was shortened.

*If I'd only live till I was 65, but I'd have the next 30+ years pain free without fatigue and brain fog. I'd take the pill.

*The pill, for sure! who wants a longer life if this is what you have to look forward to everyday?

*Take the pill too, quality not quantity please!

*Carry on as I am its all part of my life's rich pattern

*I would rather have more years with my family+friends than be pain free + shorter life.
life is precious even with pain

*I also have multiple sclerosis and the treatments were making me a vegetable, lying in bed all the time. I stopped everything against Doctors advice, but I'm back to my old self. I risk more relapses being off the meds. but at least I feel human again. in pain, but human.

*The pill would win every time.

*It would be a tough one as I would want to see how my children's lives went & be there for them. BUT I think that having a happy Mum, who could do things with them & have fun & create real, solid, SPECIAL memories would be better. so, assuming I could just see them through to reach adulthood, I would take the pill.

*Take the pill - recover the real ME

*Depends how much pain I was in, rather have a short life and be happy and not a long life and be miserable with pain

*Depends on how much shorter...

*I couldn't hurt my son by shortening my life. We lost his dad when Nathan was only 20 and I cant hurt him like that again.

*Definitely take the pill at least could live some of my life pain free and therefore enjoy and make the most of the time left even if it is less than without the pill .

*Definitely not take the pill, and have more time to spend with my family and future grandchildren and hopefully great grandchildren, my parents died too young to know my children, and I wouldn't want that for my grandchildren, or my kids even.

*I'd ask more questions.

*Take the pill so I can have quality time with my children, id rather that than have quantity living with this disability.

*I would stay as I am. Although the idea of having all of my symptoms magically disappear is incredibly appealing, I also can't imagine intentionally shortening my lifespan. I have three children ages 16, 7, and 5 and could not bring myself to leave them too soon intentionally. I want to see them grow, graduate, get married, have babies of their own. My life now may not be the one I would have chosen for myself, but it's the one I've been given and I wouldn't want to miss anything. Besides, who knows what's in store? Life is a journey, and filled with lessons to learn, and who knows what I have left to do yet.

*Carry on even though I know days like today I would think maybe I should have taken it to get quality time with grandchildren, but I know they would rather have me here like this even though they are only young.

*Definitely take the pill! I could have a better life which is preferable to a longer pointless one!

*wow. That is a really tough question. There are days I say to myself, I'm only 38 I have the rest of my life to wake up every single day feeling like this, so from that aspect heck yes I'd take it, but then my family, I just don't know. I would have to know how much shorter my life would be I suppose. What a thought to ponder though.
Take the pill! Live life to the fullest.

*I would carry on without it, mainly cause I don't know how long I have left and what I have left is precious to me, I want to spend as much time with my kids and family.

*The pain is worth it for more time with my family

*I think it would have to be the pill. I was diagnosed with terminal chronic myeloed leukaemia & although in remission still have it & it could mutate to acute any day so from that point of view it would at least guarantee a certain period of life without all the different conditions I have. Then again would depend on how long was offered - contrary I know!

*Not take a pill, there could be a cure or a lot more help coming our way sooner than we think, and if you have already given in and taken the pill. What then? I have a disabled son who will never live independently and worry about the "what ifs" enough as it is, so would never consider shortening my life. He has no quality of life so it would be selfish of me to want to cheat! but everyone has their own reasons for yea's and nae's.

*Carry on. I have a lot of living left to do with my kids.

*At 20 yrs old I would take the pill. I'd take any pill I possibly cud! Plus if it could stop me taking the 20 odd tablets I take a day now I'm game!!

*Take the pill and enjoy the life pain free

*Carry on. If you let Fibromyalgia shorten your life span it's taking something from you and winning.

*Tried to answer. Can't. Tough question. Sometimes little things happen that brighten a bad time. Other times every day is tough.

*Give me the pill, gimme the pill, gimme the pill! I've already cheated death twice and have lived 19 years more than death's first try, and 5 years since it's second - I figure I'm already living on bonus time.

*This is a tough one! If I took the pill I would miss my family, but would I want them to see me get worst?????

*Take the pill. I am single without children, and it is really hard trying to take care of an apt. and myself. Maybe with the pill I could have a life.

*Pill definitely, pain and all, I never would want to shorten my life..I feel blessed

*Carry on. I want to be here to watch my Grandchildren grow up, they are still babies.

*Carry on as i am

*Take the pill

*Oh yea I would take the pill in a heartbeat, I could care less if I ever see my family again. I don't get along with my brother,my nephew and niece don't give a hoot about me, and my dad is hard to get along with also. So I am ready to go as I am. So yes I would for sure take the pill.

*For me, it would depend on whether the pill got rid of ALL my symptoms (including the CFS/CFIDS, MCS, IBS, messed up sleep cycle, weight gain and migraines) which tag along with the Fibromyalgia. I'm 55 and childless, so length of life is not that much of an issue - I'd go for quality years. But if it only got rid of pain and stiffness, I wouldn't take it.

*How much shorter?

*Nope, no pill for me.

*Wow. That's a loaded question. I think I'd say no and just carry on. My quality of life isn't so bad that I'd be willing to cut my lifespan down. Graduate school, here I come!

*A really tough one but I'd have to go for the pill, as I have no life and so much illness It's so unfair on my husband, family and friends. I know we must take everyday as a blessing and try to make the most of it, but as you all know with this disease it's so hard. Gentle hugs to everyone and here's to a better future for us all x
carry on definitely.

*Carry on...as sucky as my quality of life is now...I want to live to see my Grandchildren.

*nope would not !

*My kids are 31, 29, 23 and 10 want to see Grandchildren could be around the corner but on crappy days like today, pill would be an extremely close second. Gentle hugs to all here and around the world dealing with this illness that so many folk don't even know about!

*I would take the pill of course, but NOT if the side effect was a much shorter life span...... Being there for my little boy means the world to me

*Take the pill. If their smart enough to come up with the pill, they likely will be smart enough to figure out how to restore life span.

*I would rather stay as I am. Yes this Fibro is crap but the good times with my children and grandchildren etc. far out weighs the bad with the Fibro. Life is precious and too short as it is so no I wouldn't take the pill.

*It would depend on a lot of other information, but I know I have said before that I almost wish I could just amputate my legs sometimes so they wouldn't hurt any more. I would love to not have this illness. Then again, any pills we take for this may be shortening our lives, and not really even making all the symptoms go away.

*No-I want to live as long as possible.

*I'd take the pill. A long life of pain has no quality of life for me.

*Have to think about that one hugs

*Its a tough one, I guess it would have to depend on how much shorter your life span would be. I'd want to see my daughter grow up see my grand kids but at the same time I wouldn't want to be a burden on my partner and family.

*I would take the pill!

*Now I have my son, it would be life with him, but the offer would be very tempting.

*Carry on

*Take the pill.

*I love life! No pill for me!

*To be honest Im not sure what I would do and I would have to talk to my daddy and my girlfriend.

*Definitely not take the pill, the pain sucks but my family mean much more.

*No NO No NO!! I love living and will not let FM take it away from me, I have a lot to live with an perhaps can be an example of what is possible despite having such a limiting illness fact you are much longer dead than alive and its permanent.

*I would definitely NOT take it - from this disease/syndrome, I have learned more about myself and other people than I ever would have. It also gives me an opportunity to help those in pain. A friend and I (that I met through Fibro) began a support group and now have gone non profit - to educate others on fibro and being their own health advocates.

*Without fibro and its MANY problems, I would have never had this chance :)

*Not take the pill!!! my 2 boys are only 13 n 6 n I'm 32! I have my good days and have my bad ones but to shorten my life span noway!!! no matter how much pain I am in I couldn't imagine the pain my boys would be in to lose their mum at a young age.

*Take the pill I could be knocked over by a bus tomorrow. Imagine even one normal day!

*Stay as I am! I love my life and family too much. So I'm in pain 24/7, it doesn't mean I can't have a life. And like others, I wouldn't have learnt so much about who I really am without Fibro.

*I would want to carry on. I want to be here to see my grandchildren as they grow into adulthood. I want to see them become teenagers, young adults, marry, and having their own children. My mom is 83 and has 17 grandchildren and 171/2 great grandchildren. I want to have a life like hers. I also want to be here for my children as my mum is for all of her seven children.

*Carry on. My kids are only 15, 9 and 7. Couldn't do that to them. It is a very good question though.

*I don't think I would take the pill I lost my mum last year and I don't want my kids feeling the pain I went through so no but only for my kids.

What hints and tips would you give to someone looking to find a new GP in a new area?

*Word of mouth You need other peoples views on the practice they are in, maybe even chat to the receptionists ?

*I phoned the PCT in the area they will tell you all the doctors that are taking on new patients

*I'd ask how long wait for appointment and what the emergency pro is and last but not least do they have a Dr that understands Fibro

*Pct-primary care trust.

*Someone that actually listens and doesn't make you feel like you're crazy. They need to have a lot of knowledge about Fibro and be willing to learn more to help you.
As someone else has said, by word of mouth.

*Gp Receptionists, pop in and ask to speak with the practice managers, look for a big practice that offers a god variety of services, local chemists also tend to know of good GP's

*Some cool advice here, any more tips we can offer? my brains gone to mush now!

*I haven't been to a GP for years. I have taken the 'holistic' approach, diet, exercise, acupuncture, chiropractic and massage. I sort of have a beef with 'western medicine' so I guess that is why I don't have a GP.

*My doctor is really good but the other one there thinks Fibro is a myth and can be treated with paracetamol and the receptionists treat you like a druggie 3 times I've had to go and beg for my meds when my doctor is off so I would ask friend and neighbours.

*After recently searching for a new GP, I can tell you the best thing to do is ask for one of the practice's doctor's to call you. Ask them their views regarding your type of CP. I've actually had doctors tell me straight out that they will not treat Fibro.

*Check out the "good doctor list" on www.co-cure.com

*I think that is a tricky one, I guess I would leave it to instinct and if you get no satisfaction then move on to another GP.

*Ask at the local FM or ME support group.

*I am currently going through this same thing. Even word of mouth, you will always find some people that don't like the recommended doctor. So what I have done is call the prospective doctor and set up a consult. I told the secretary that I didn't want to waste the doctor's time to find out that he or she couldn't help us (hubby and me) or to find out we didn't like them. All the ones I have called have understood and agree with me. All doctors can set up and bill a consult and once you meet if one or the other, you or them, doesn't hit it off or you find out that particular doctor can't help your health needs, that's the end of it. Doing it this way, you will be sure to find the doctor for you and your health needs.

*Ask the receptionist

*I will need to find a new GP when I move to Devon in July but there is only one practice where I am going so I am worried how I will get treated.

*I need to find a new GP mine sucks !

*I would urge anyone with a bad GP to move to a new one asap, your health can only suffer if you have a GP who isn't interested.

*Lots of good tips on here to help those looking,

*Our Gp new nothing of FM when we met him almost two years ago, I was his first FM patient, We agreed to learn together, with the added bonus of a lady working in the chemist attached to our GP, she also has FM, so between us we've taught him heaps and he now everyone for miles who has FM goes to see him. He's probably cursing us!

*sometimes having a GP who is willing to learn is every bit as valuable to you. It's your health so don't accept poor service

*Everyone I have seen in the past 9 years has sucked, I have given up.

*Talk to FM people and see if there's anyone they know in the new area who has a recommendation. Also check with the new insurance company to see who is "in network" and see what names are in both lists.

*Don't be afraid to stop going to a doctor you feel uncomfortable with. Take control of your care - don't leave it up to the doctors to know it all ... you know what is going on with your body better than anyone.

*Find someone who listens and believes your pain is real and works with you to try different combinations of meds to help you feel the best that you can--even though you'll always feel fatigued and pain.

*Easier said than done I believe!

*After what my pain doc said to me I think things are going to get worse with GP's, he told me that they have to have us in treated and out within 7 minutes so they have not got time for a complex illness like ours.

What alternative & complementary therapies have you tried and how did they work for you?

*As a sufferer and therapist, its all down to the individual, but my personal opinion is: Reiki,spiritual healing,reflexology,homoeopathy,acupuncture.

*I love Gabaphintin. I have no idea how to spell it but I do that and I drink sleepy time tea before I go to bed.

*My girlfriend finds that a warm jacuzzi helps loads with her aches and pains, that and lots of cuddles.

*I had started a course of massage but became too ill to continue, I hope to be able to start them again soon. Although I didn't benefit so much physically it helped me a great deal emotionally, and it was something just for me.

*I used to get acupuncture, wasn't a cure-all but it did help with the headaches and back pain.

*Heat, Heat and more Heat and Exercising doesn't hurt either lots of hot baths and get out in the sun when it is a warm sunny day the heat from the sun helps.

*I AM UNDER CARE WITH AN UPPER CERVICAL CHIROPRACTOR (DR BARRY HOBBS, WESTLAND MI USA). IT HELPS A LOT ESPECIALLY DURING A FIBRO FLARE. ONLY REAL RELIEF I GET. BLESS HIM FOR WHAT HE DOES FOR US WITH FIBROMYALGIA.

*Hands on healing - very good with right healer; Morrell Reflexology - great; aromatherapy massgae - great; crystal therapy - so, so; Indian Head Massage - great; Mindfulnes - great; relaxation music - great!

*Diet and warm baths (okay extremely HOT) have been my best 'therapy'. I have been non-medicated for five years and have done much better without out it than I ever did with it. I steer clear of sugar, caffeine, alcohol, greasy foods, processed foods as much as possible. I kept a diet journal for a long time, and found obvious patterns in what I was consuming and the extent of my FM/CFS symptoms. I can almost guarantee a 'sugar coma' after giving in to any sweet treat, and caffeine gives me the fibro flu like symptoms almost every time.

*I love my chiropractor and my masseuse

*Chiropractor - can afford it any more but definitely helped a lot. Swedish massage too. Prayer though that's not a "complimentary" therapy!

*massage really helps me

*Sunshine is another good healer for me too, I also do hot baths (with no cold water at all) because it's the only way to warm up the inside of me

*Melatonin

*Kinesiology, Bowen, Reiki, Massage (by someone who understands fibro) EFT , all given some benefit in their own ways

*I am/was a Holistic therapist, I can do Reflexology, Aromatherapy, Swedish Body Massage, Indian Head massage etc. Well I could do them until I had Fibro anyway my arms gave up! In my personal opinion any kind of massage is fab for helping with Fibro. I personally can't afford to get treatments myself, but I do find Good diet and plenty of exercise despite it hurting along with a nice sauna session is the most useful in helping with Fibromyalgia. Screw the pain just do it you wimps!

*Tried massage and couldn't walk for a week after it and tried acupuncture and it gave me migraines. I stick to hot baths and keeping warm and try to holiday in hot and dry places, Vegas preferably!

*Vegetarian, sugar free, non processed diet when I get into a down spiral helps bring me back up. slow walks in the sun, and really hot baths. I am stubborn and tend to push myself to hard with work sometimes, when I do this it is a long process getting back "up". but the diet and non exerting exercise is the only way back out of the spiral.
Actually home with heating pad and sleep today. First step in my climb back up. Over did it at work again this winter.

*GOOD QUESTION -- Back when I was seeing patients, I had MANY that were coming for hand therapy that weren't getting better and I could tell they had chronic illness and they'd go to their doctors and come back with no answers. They didn't have resources about alternatives to turn to, so I created one.

Lumigrate.com, my website, that it's about 'integrative medicine' which includes allopathy and all the other disciplines considered 'complementary'. 60% of people in the US say they want alternative/ complementary and 75% go on-line now so it made more sense to make a new business, Lumigrate, and quit my OT business where I could only help the people who could afford insurance and health care AND at most I had time for 10 people a day. In less than a year, Lumigrate has met my goal of helping more people/day than I used to.

*oh ya, and natural meditation, that's just sitting quietly by water or somewhere peaceful, letting your mind wander and smiling at the birds etc.

*I had reflexology once a week for a year and actually managed to go without any pain meds for 6 months!

*Physical therapy works for me. My therapist is amazing. We have been in the partnership of managing my body for 3 years. We observe patterns together and she is able to teach me how to correct certain issues fibro tries to bring into my life. Pain and fatigue still haunt days but along with proper diet overall I am better. Together we are able to contol the fibro "extras" and focus on the basics of fibro. The month of March continues to be my worst month of the year. Glad it is almost over. I am miserable.

*Meditation, regular Acupuncture, which in our area is available on the NHS for chronic pain sufferers, Reiki and healing, homoeopathy and OPTIMISM which seems to be something that all could do with a hefty dose of.

*Tried everything imaginable, but most help from Dr St. Amand's guaifenesin protocol.

*Adding flaxseed to my daily diet and exercise has done wonders for me. I actually feel slot better during the day now. However, fibro pokes me with aches and pains while I am sleeping to remind me that this monster is still here.

*Reflexology and cranial osteopathy has worked fantastic for me.

*Massage,hot baths and nutrition help me control symptoms of Fibromyalgia and Chronic Fatigue Syndrome. I am functioning on a completely different level.

*I had a herbal treatment from a Chinese doctor it was powder especially mixed to my needs I had to mix with a little water 3times a day. It worked brilliantly though it looked and tasted like mud! Unfortunately at £100 per six week course it became too expensive for me.

*I have had acupuncture and acupressure which did help but the cost for 10 sessions was £600 pounds ,,, also been to kinesiology which also helped,, but again keeping up the cost was impossible.

*I am on HERBALIFE and it works wonders. I get an episode about once a month, but I am full of life energy and feel great. I am able to play with my kids finally after all the time I've been spending in bed!

*I have tried acupuncture, it did nothing. I have tried Dry Needling, no help. Also have tried massage, no help. And I have also tried MyoFacial Release Therapy and it didn't do anything. I have tried pretty much everything for pain and nothing has helped.

*I tried the herb Fibromyalgia but it interacted with my asthma, helped a little. Now someone is telling me to try grapevine herb by natures sunshine. The jury's still out on that one.

*Have tried reiki(didn't really work) did relax me but that was it. Acupuncture (helped a bit) massages definitely a big help. Herbal did not do a thing.

*I have reflexology once a month. it is wonderful to be able to relax my body for an hour or so.

*Hot stone massage is a must

*Tried EFT and it works !

*AquaDetox footbaths, yoga, vitamins, minerals, herbs and staying away from gluten, dairy and sugar. Med-free and pain-free with great energy for almost a year.

*Acupuncture, disaster! More pain than before I started and when the practitioner left a needle in my back and sent me home unaware, I gave up. Not my scene I'm afraid.

*Hot bath, massage, colonic, good diet, exercise, sleeping 8 hours at night, trying to stay happy and have a little fun.

Despite having FM/ME/CFS, what makes you feel good about yourself? How do you keep your depression at bay?

*Family and friends.

*Appreciate the beauty in everything else, people, starry skies, trees, landscapes, nature etc.

*Family and knowing that yes it hurts but there are people worse off than me.

*Running my small antique business, it's my passion and keeps me busy, yet if I'm having a flare up I can take some time off.

*My spirituality,friends family and my fiancée.

*My husband & daughters keep me battling & when I start to slip they pull me through
my husband, who is an angel, without him I don't know if I could make it.

*My faith in Christ, spending time with my family and friends, and my dog, he always makes me smile.

*My 3 gorgeous nieces that understand that although sometimes I can't pick them up their love is unconditional.

*I wouldn't say much makes me feel good but I keep going for my partner and my family, a lot of the time I don't want to live this miserable life of pain and fatigue day in day out, but know there is no other option so just deal with it day by day
concentrating on the things I CAN do,not what I CAN'T, there are so many other people who are so much worse off than me. I'm a very lucky woman with a wonderful man and 3 amazing sons that keep me smiling, also lots of gentle hugs.

*My partner,my daughters,son and grandchildren give me so much joy and when i dip they make me laugh. I also enjoy sewing and knitting.

*The power of positive thinking is an amazing thing. There are times I can't keep the positive thing going and that's when my husband and son step in and help me out but usually, my dears, it's all up to me and how I choose to think.

*My inner strength makes me feel good about myself cos without it i wouldn't push myself to do things when it hurts or i'm tired.It also stops me giving in to this damn illness!

*There are several things that I do: read, watch classic films, pray, spend time with my grandchildren, send a card or make a phone call to someone who is going through a trying time.

*My kids, so thankful they are happy and healthy, my Fibro friends and my art. When someone sees my work and likes it, that gives me a great boost and helps me to de-stress. I know I'm lucky, there are so many who suffer much worse pain than me and I can walk, even though it's tiring!

*For me it's music, I think having upbeat music in the background helps me somewhat. The support of family and mates has been vital too.

please don't laugh, but my cats ♥ they have unconditionally stood by me for 6 years (can't say the same for my ex husband or certain friends) and now I am lucky to have an amazing boyfriend.

*Vast amounts of prozac and sheer stubbornness

*My wonderful family and friends,Fibromyalgia will NOT get the better of me!

*My wonderful husband, kids and sister, oh and I read lots.

*I will not become a "victim"!!!!!!

*My GSD Rex, fibro friends & friends on fb & beyond have been a gr8 support, and a bit of help from the dude upstairs. There are peeps who've got it worse than me so that also helps keep things in perspective too even when I feel like giving up!

*Listening to the birds chirping away outside my kitchen window. Watching the birds eat from the bird feeders. My dog,kittens. And sometimes being a goof.

*I never accept it when people say "You can't do this or that" being stubborn really helps.

*Wow, so many of you have supportive family and friends! That is awesome! I try to be creative when I can; I can't really expect anyone else to give me support. Music does help, but I have a strong spirit and faith.

*I have been disappointed in most people, family, docs, friends who don't understand why you don't call etc. due to pain and lack of energy. Makes me feel very alone. I try to feel a peace through nature, water, listening to the birds etc. I also enjoy music that helps take me away and makes me feel passion about something. I believe in prayer and try to keep the faith.

*God, my grandson and my stubborn attitude that Fibro will not win. There are people worse than me. I know my family helps but, I do everything and that's my fault, so I feel sometimes they don't see my pain or acknowledge. I just keep going and going like the energizer bunny without the energy.

*My dog keeps me sane when my girlfriend is at college!

*When I was single and living on my own my dog was the only reason I had to get up in the morning!

*Keeping my mind busy. It can be little things like playing games on my computer. Solitaire is easier to play on the computer since my hands hurt too much to play with real cards.

*I'm doing an Open Uni degree to keep my brain moving.

*I really understand about your dog. Mine are one of the only reason I'm still alive. I'm the only person that can care for them, so they keep me alive.
Unfortunately I have FM,CFS and Bipola so for me the only way is Serolquel XL, it saved my life..... I have been told Bipola and Borderline Personality Disorder are common with FM has anyone else got any of these?

*Nothing!

*I try to keep as busy as possible be it reading or playing games on the net or doing find a word puzzles.

*My Dog makes me smile, she keeps me going. My husband is supportive in some ways as well, and my cats, even though the one is very demanding. My internet family and friends help by sending me cute things and chatting with me.

*The support of others near & far & the satisfaction of raising money for leukaemia research - £165,000.00 so far!

*I depend a lot on different crafts to keep me busy and keep my mind off other things like pain and depression. Usually it works fairly well. And, you know what ? Even if I am having a very bad day there is always someone else having it worse. Not that I glory in their pain but it helps put mine into a different perspective.

*I'm not depressed now, thankfully. So the way I've done that is with bioidentical hormones (hormones are off with FMS typically and estrogen for example is a building block for neurotransmitter serotonin, so instead of an SSRI, I replaced my oestrogen.

*My 2 dogs and my cat.

*My six year old son who is willing to help me every time I flare.

*My son, my partner/carer, my God-daughter and her toddler son, me mates and my fb pals. Without my support network, either me helping them or them me so that if I have a bad day, week, month, they are always there.

*Nothing, I do not feel good about myself. I can't seem to keep depression at bay.
Knowing that I'm the toughest person I know. I do a job that is hard for your average man, and I do it well as a woman with fms so I have the right to say to my co workers "suck it up buttercup" . That almost always brings a smile to my face.

*The touch of one of my cats fur, a purring cat, music (if I can bring myself to turn it on, on those days) a really fun choir practice, just knowing my family is safe and where they are supposed to be

*Keeping myself busy, and seeing my grandson's beautiful smile, as when he gives me that big smile i can't help smiling myself.

What's the ONE piece of advise you would give to someone newly diagnosed with FM/CFS/ME?

*Educate yourself.

*Hot soaks in the tub every day.

*Be very patient.

*Find a good doctor you can speak freely to and trust!

*Make sure that you have a doctor that believes "in" you, that doesn't mean it's the doctor that diagnosed you, sometimes you will find it isn't that one.

*Heat packs become your new best friend.

*Learn how to pace yourself and deal better with stress!

*Know that you might have to fight to get the treatment you need.

*Make sure you have people around who TRULY support you.

*Detox your body on a regular basis.

*Don't feel guilty at all when others think you are being a moan or nag. Also keep at your GP/Consultant for the most up to date meds, And don't be afraid to ask for help.

*you are not alone.

*Educate yourself, Google is your best friend upon diagnosis, there's a wealth of advice and support out there, grab it with both hands, it will see you through the darker times.

*Education and self-awareness are key. Become your own advocate, *know* your body so you can describe symptoms and if the first doctor doesn't do it for you, find another one!

*I agree with finding an understanding doctor. Also don't push yourself too hard on the days when you are feeling good because you will pay for it.

*Exercise and Diet are the two biggest things you can do for yourself.

*Read all the info you can, stay positive, pace yourself.

*Pray

*Listen to your body

*Realize when you ARE being a nag and what YOU can do to help yourself.

*Maybe a food or foods may affect you or your pain levels.

*Often it could a much loved or constantly eaten food that's considered "wholesome" that could be hurting you.

*KNOW your body.

*Keep a journal and be brutally honest with it. How you feel, how the pain affects you, what makes you happy ... and be nice to yourself.

*Join patients like me

*Be honest do NOT look for someone or something else to blame.

*Try different medications to you find something that really helps you. also chat plenty to others that know what you are going through and can give you help and support.

*Stay away from stress and learn how to deal with it. Stress kills me and makes me flare every time.

*Be patient while you find your "new normal".

*Be ready to find out who your real friends are and what members of your family really care! Be patient with your spouse and children, it will take time for the household to adjust!

*Be ready to hurt, the pain never totally goes away, at least for me, but some days are better than others. Finding a good doctor is important, more meds are not always the answer. And most importantly, stay POSITIVE and willing to say NO, when you can't and don't push to hard on the days you can.

*You will adjust, I'm a young mum, with special needs boys. My house is never spotless, but everyone has what they need and we love one another, never taking today for granted!

*You are not alone

*You are not mad. At times you will think you are, you are not. Normal has just shifted a bit for you.

*Stay positive,take each day as it comes,join a group who supports rather than sit and whine with self pity, don't give up!

*You shouldn't feel embarrassed or ashamed for not being able to do the things you did before so don't push yourself just to seem 'normal' to others.

*Do some gentle stretches and relaxation, also join support groups as u ll find the majority of the time its friends from the support groups who are always there for u when your family & friends are not. Pace, ask for help, learn to say NO and educate yourself, Fibromyalgia 4 dummies is a good book, keep a daily diary.

*Join a support group, no one understands except a fellow suffer.

*Find Fibro friends if you can... And Ducks

*Join Fibroduck, it makes a difference!

*Take it one day at a time....on your bad days, take it one minute at a time. Try to pace yourself, because if you over due it on a good day, most likely the next day you will be in bed!

*Learn to pace your day, the spoon theory! Read it! Also a good support group.
Listen to your body and respect it. Eat right, take your vitamin d and do light exercise! Sleep Well! Find a support group and a doc that understands and believes in the illness.

*Know that lots of people are going to say they have a cure "if you would only _______" don't buy it or into it - if it was that easy we would all have been cured and jumping up and down a long time ago.

*It takes time to get the medication right, and not always what the Doc prescribes unfortunately. Keep a diary, and try not to get too stressed, you will get to know your body, when you have good and and bad days, Good luck.

*The year I was diagnosed, I was still trying to work full time and take care of our 6 year old son. My husband travelled and we didn't have family to help. I'd fall asleep as he tried to do homework. When I finally did go on disability, it was about 15 months after being really sick. I had to rest, rest and more rest. I'd get him ready for ... See more school, and go back to bed. I'd be ready for him when he came home. It's been almost 20 years, and although I have gotten worse (just some added degeneration of the illness), I rest when I can, and if there is something coming up, I try my best to go. I rest afterwards. No two people have the same symptoms as no two people got it the same way...just remember that one. It was confusing for me. And eat well! A supportive doctor(s) are so important. If they don't, go on to the other...and it does happen.

*Be flexible..........you can guarantee every time you plan something you will flare up, be spontaneous on your good days!

*I just have to say I agree with everything EVERYONE said...Never give up
Find a good Homoeopath. One who is qualified and registered. Start your healing journey gently and slowly.

*Read every bit of info you possibly can regarding Fibromyalgia.

*Pace yourself and get all of the support you can. Laugh and have fun whenever you can and rest when you need to.

*Realise you can't be who/what you were yesterday, accept, re-group and find out all you can about the disease to educate yourself, your family and, quite likely, your doctor too.

*How ever hard it may seem, keep a positive mental attitude. The mind is a powerful weapon but above all be kind to yourself (but not soft!). Comphrey oil is also excellent...known as knitbone!

*Pace yourself. Its the one thing that worked for me~when I stopped being stubborn & listened!

*Don't pretend its not happening !

*That its OK to be scared! but you are not alone

*Fantastic Advice, and So True, but its getting family, friends and other people to understand and accept that your still you. Just at a slower pace n with a few added tweaks n adjustment to your life.

*Finding the right Balance n loads of gentle Cuddles

*Educate yourself - even the good doctors aren't going to be as interested in the subject as you are! So don't be afraid to take them new info & ask questions or make suggestions.

*Most importantly DON'T overdo those good days or try & "push through" your symptoms- it WILL make you worse in the long run, but at the same time don't allow yourself to sit & vegetate.

*Sometimes all you can manage will be fetching a drink or some painkillers one time that day by yourself, instead of asking someone else to do it- but that little bit of activity can make all the difference over time in protecting your mobility & independence.

*Forgive yourself. You did NOT choose this.

*Don't do the energy boom and bust thing like I do. Take things nice and easy even when you feel well, otherwise you;ll pay the price later!

*Put yourself first. Love and cherish yourself. Never feel guilty. Know that you will get well again.

*Listen to your body but don't let FM take over!

*Learn to listen to your body, and re-assess your life to find out what is/who is good in your life.

*I couldn't get through this without my fantastic friends and family. They are my support network. They all support me in different ways, for example one takes DD to school and picks her up when I can't, one makes me go out at least once a week, one just listens. It's all important.

*Try to find a support group

*Learn to pace yourself from the start.

*wow, now that's a question! I think my advise would be to take your time! learn your own limits and if it takes a year of learning take a year. Listen to your body, if you need to stop, force yourself to stop! you have to learn all about your body all over again, take the time to do this.

*Find a support group or a meeting place on-line. It really helps to know you are not the only one with so many bizarre symptoms!

*All of the above.

*Never let anyone make you feel guilty, if you need a break take one!
I pity them. I have no good advice for them. It is like living in hell on earth day in and day.