Has anyone ever been told that FM will only last 2 to 5 years? My GP told me this today!

[gailyg73]

[sadoldred]

No only by Atos Gailyg73 they have told me in the past that in 12months I`ll be fit to go back to work! Yet in a medical report only 3months ago they have put its highly unlikely that I will be able to go back to work! At the Pain Clinic the Doc told me to get used to it as this is how my life is going to be for the rest of my life!! Change your Doctor as he dosnt seem to understand Fibro at all!

[gailyg73]

My doctor wanted a review of the pain medication I've been taking for about 2 1/2 years now, Tramadol 8 a day, paracetamol 8 per day and Amitriptyline 40mg at night. When I went in she wanted a full account of all the pain I get regularly ( a list that is getting longer by the day ! ) She said shes not happy about me taking strong pain killers long term and that I should think about coming off them !!! I said its easier said than done without them I dont think I would be able to walk at all and its not very far at the moment. She said dont worry that I wont have fibro for very long anyway !!! It would be fantastic if thats true

[sadoldred]

Have you seen a OT? Or the Doc at the pain clinic? If so then bring this matter up with them, am sure they wont be to pleased about what your GP has said

[hugosmum70]

GPs can be so stupid at times. they know a little about a lot of conditions..hence the name GENERAL practitioner. often a doc will know more about one condition that he specialises in though.but few know much about FM at the moment im told.

[gailyg73]

I dont think there is much support in my area ( which is Wigan ) when I was diagnosed I was signed off my rheumatologist she said look on the internet for info and see your GP for pain relief !!! Great eh ???

[Maladjusted in reply to gailyg73]

If you live in Wigan, you can ask to be referred to the Pain clinic at Bolton 1. You wait a while for treatment but they do at least understand Fibro there, and (when they get around to it) will refer you to various departments for help and pain management

[gailyg73 in reply to Maladjusted]

Thanks Malasjusted, my GP wants to see me again in a couple of months with a view to coming off my tablets, I will mention the pain clinic as I dont think I could cope without. How long does it take for a referal ?

[Maladjusted in reply to gailyg73]

I was referred 25 June, and had first appointment 7th August, so not too bad, however I am still witing for my 2nd appointment and referrals, might have to phone them up and nag

Good luck

[gailyg73 in reply to Maladjusted]

thats not too bad, yeah ring them you know what they say " squeakiest wheel gets oiled first ! "

[Maladjusted in reply to gailyg73]

Got appointment 1st Nov, they gave me some excuses about doctor being on holiday etc, and that the letter was read to be sent. Also got questionnaire for referral to pain clinic now - things moving at last. If I were you I'd ask for your doctor to refer you to clinic there - straight through train from Wigan Wallgate to Bolton

[Hidden]

No never... And in a word.. Rubbish... I wish.. as that would mean I am fighting fit, dancing the night away Pain Free... !!! Yippee..!!!

Back to Med School for him I feel in order to update and re-educate.. oh makes me mad sometimes.. lol..

Search Fibro on the web... chronic illness for life, no cures so far... there are many specialist mainly in the USA but also the London pain clinic who are researching and doing studies for Fibro and related chronic pain conditions and neuro etc... Next time tell your GP to do his research as NO Information is much better coming from him than dribble... Sorry one of those days... hugs xxx

[gailyg73]

Thanks everyone for your replys xxx

[irenegee]

I wish that was true I would have been pain free, not depressed and able to work over 5 years ago............. then I woke up.

there is no cure (as yet) you just need to find ways to manage it. what works for one may not help another

[electricjaws]

well if it only last betwween 3-5 years why do i still have it 13 years on?!! i think as g.ps have little or no knowledge of it ,they should get thereselves more educated before they make such sweeping statements

[Extremelygrumpy]

Pahhhh some doctors I have had fibro 22 years.....now that means the last 17 years of my life were only a dream..... No I,m getting mixed up with an old Dallas episode....

VG x

[Hidden in reply to Extremelygrumpy]

Laughing again... oh yes I remember Dallas first time round.. and am watching it the second time round.. highlight of my week.. giggle... love your sense of humour.. Mmm VG.. stands for Verygrumpy and VeryGOOD... x

[gailyg73 in reply to Extremelygrumpy]

wow 22 years! how have you not gone insane? Its only been 2 years since my diagnosis and somedays I feel like Im cracking up

[julieevh]

Your doctor is woefully ignorant. Fibro is for life sadly - it is all about managing the pain and other symptoms as effectively as we possibly can. Even the NHS website says there is no cure for Fibro ... so where on Earth does he get his ideas from?

nhs.uk/Conditions/Fibromyal...

Julie xx

[ellie172825]

8 years for me, and a Rheumatologist said to me, although you have all this pain, one consolation is it will not damage your joints, something to be grateful for, I guess !!!!

[ladysian in reply to ellie172825]

your rhumatologist is only half right - it will damage your joints and bones eventually but it takes a long time and muscle problems and pain itself will cripple you long before any bone problems would.

i hope your lucky and it doesn't ever come to that for you

[Pat2012]

well i'm on my 7th year of having fibro.....For myself it has worsened over time.

[goldwing]

I have had fibro for 17 years and had to give up work about 8yrs ago it has got worse again over the past 4 years and really struggle with crutches for walking and I am in lot of pain and get very tired, I have spondylosis in lower back and other things. I know someone who was wheelchair bound for several years with it. One gp from my practice told me once that fibro is not a long term disabling problem!!!!!!!!! I did not see that gp again and now see one who does understand about fms, trouble is Iv heard he may be retiring from my practice, don't know what I'll do then.

[gailyg73 in reply to goldwing]

Hope youll be able to find another doctor who understands goldwing

[Prickly]

I have a supportive doctor and indeed medical centre and I was told that fibro was for life but may be less severe at times but will never go I think that your doctor needs some information and training in this and also to be more sensitive !

[Yvonne64]

I was told with fibro you can have times without any symptoms but it will come back. I've had it for about 4 years and have still got it so I think the doctor needs to heck his information or study more about fibro

[gailyg73]

I think you are all right about my doctor I thought she understood what I was going through but when she said that I just sighed new doctor me thinks

[Midori]

In my opinion, Your doctor is talking out of her backside.

[Hidden]

I remember being told at the beginning when I knew very little about Fibromyalgia in those days (over four years ago now), that my Fibromyalgia was incurable, I would have it for life and it scared me half to death! I felt like my life was over and that was it! I remember asking if it would kill me as I didn't have a clue at that point and when I was told no, from that point on I made my mind up to fight it for the sake of my hubby and children etc.

I agree with the comments above, I am afraid your GP is in cloud cuckoo land! You will have times when you are better than others, but saying it will only last a set period of time is incorrect. No-one knows whether you will display symptoms for life or have a sort of "remission" phase or whether you will fluctuate with ups and downs the entire time. It's so variable that even the so-called experts cannot predict how you or any of us will be next week let alone in 2 - 5 years, it's crazy to imply that they do know and incredibly misleading especially to people who have only started on the Fibro route.

[Celticmoon]

What an absolutely appalling thing to say! I too agree with all the comments made here and would add that I've had this condition for at least 8 years now (probably longer but confused with other stuff).

Comments like this just serve to make you feel inadequate, as if you are "failing" to get better when you "should!" I often wonder if people who make such sweeping statements ever have to recall their words with shame and embarrassment when this awful condition affects either them or someone they love. Making such badly informed and totally thoughtless statements like this is worse than ignorant, it's damaging to the extreme.

Change your GP if you can... xx

[Hidden]

I think a lot of medics make statements as if they are facts and provide answers at times when there aren't any because it's uncomfortable for them to realise that they don't know when we the public expect them to know.

If they don't know many patients feel angry, but if they think they know they risk being wrong. It's a no win situation for them as well as for patients.

Life would be so much better for us all if we accepted that actually no one knows for certain much of the time. Of course sometimes there is certainty, like when someone is close to death, but so often there isn't. My husband has chronic kidney failure and was told he would need dialysis within 12 months so had a fistulla fitted in readiness but 8 years later he was still managing to work 3 days a week at 70 years of age without dialysis. Now he's on dialysis they say his life expectancy is around 5 years. We just say he will die when he does and that is all anyone knows.

Medics probably usually mean well but some are clumsy and thoughtless while others are downright rude! I think they lose touch with what took them into medicine in the first place, perhaps they weren't really suited to the work. I've had several experiences with medics who have been really quite abusive in attitude although others have been superb. I guess in medicine you get the same mixed cross-section of people as in any other profession.

I agree, if your GP is crap I would try to change to another one if you can. Unfortunately even if we all vote with our feet the crap ones will continue to get paid! And don't forget they're being paid out of public money...

Suexx

[DEstiletto]

I started with the symptoms, coming up to 19 years ago...when I was also perimenopausal! I wasnt diagnosed with fibro till 1998...some time after, my GP said he thought it was a combination of fibro and ME. In 2009 I slipped a lower disc, which didnt help! I'd had a really bad virus in 1987...7 years before the symptoms started.(After being ill with various symptoms for a week, I had a seizure and was hospitalised after losing my memory for 48 hours, during which time, I mainly slept) I now think ME can develop over a number of years and I'm also of the opinion that changing hormones must be a contributory trigger factor for both Fibro and ME. My GP always said that there was no time limit for how long I would have these illnesses. In 2007, I had a couple of months remission and the same again in 2010...both between August and October...both times coinciding with positive things in my life. I'm 65 now and feeling better is limited to days, rather than weeks! I would say the chronic fatigue symptoms are worse and my flexibility has deteriorated, although this may in part be due to ageing. I think the triggers affect the brain structures and chemistry...my brain wave patterns arent completely normal. Therefore I believe that it may be possible to reverse the process...sadly it may be a long time before such therapy is available on the NHS in the UK.

[blue-eyes]

My Rheumatologist diagnosed me with Fibromyalgia last year but couldn't tell me how long it would last - apart from it being a lifelong chronic condition. As it was triggered by a car accident in January 2011, I have now seen 3 specialists for the insurance reports. The first one said I would be fully recovered within 6 months, the 2nd one said that with regular exercise and diet, I would probably be fully recovered by Xmas (last year!). The 3rd specialist (who has written a report on his study of Fibro, has said that it's a condition that cannot be given a full prognosis because it could get better or it may get worse. There is no way of knowing how each individual will react to the condition. 3 Specialist Rheumatologists, experts in their chosen field, and still they can't agree. What hope does a GP have? What hope do we have?

[ladysian]

your gp is an idiot!! i've suffered with it since birth and i'm 34 and now in a wheelchair it's gotten so bad, i suggest you tell your dr to go back to school and refer you to a rhumatologist when your there get the rhumatologist to write a letter to your gp putting him right, and trust me if you ever need to claim DLA, ESA, or the new PIP this being in your medical file will help your case when you go to appeal (yes i said when not if but i'm a realist)

good luck with everything

[bubbles4325]

Im coming up to 20 yrs of symptoms I have been aware of. My Physio thinks I have had it since I was in my single years. Im now 42. Some days are worse than others.

I have not got better, I have just adapted.