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Fibromyalgia

galah

Hi all,

anyone out there suffering from that - and how did you deal with it? Was it difficult to get a diagnosis, were you taken seriously? How long did it take to actually get a diagnosis, how much of a runaround was it? (I've seen so many specialists, GPs, physios, Rheumatologists, etcetc, and it's expensive and frustrating...)

My doctor has mentioned that I *could* have it (not sure yet, since tests don't really show anything, and I haven't done the trigger points test yet), but I'm waiting for some more exclusion tests by other doctors...I've read up on signs and symptoms, and it fits to the T - but it seems that doctors are very reluctant to actually diagnose it properly, rather dismissing all the symptoms as separate issues (for example, I have three herniated disks, chronic tendonitis, probably Carpal Tunnel Syndrome and a whole lot of other things wrong with me, and no isolated treatment has worked..;-)), and not looking at it as one whole illness causing all these smaller problems...

PM me if you want - I'm just curious to see how others are doing!

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snorlax

pretty good entry from wikipedia on it http://en.wikipedia.org/wiki/Fibromyalgia go to the diagnosis section.

littlebug

Hi Galah,
you've really been through the mill lately.
My dad was diagnosed with Fibromyalgia about 7 or 8 years ago after years of pain and seeing many different theumatologists.
3 years ago he gave up smoking and started going to the gym every day for half an hour and it has made an amazing difference. He's 67 and you should see him... muslces a man a third his age would be proud of! He says he hardly has any muscle/ joint pain now except after a night on the beer!
I do suspect i will eventually end up with a similar diagnosis but I've been feeling good lately so I think I'll stay away from doctors while I can.
I have a good book here about Fm and you're welcome to borrow it for a while if you like. I could stick it the post or drop it in somewhere in Galway next time I'm in.

P

Trinity

Hey

I am 31 and suffered with arthritis like pain in my wrists and knees for years. It was only when my back started to ache and i had an almost permanent cramp in my foot! that i went for tests.

I was full sure it was arthritis but they ran tests and there had been no degeneration of my joints. They asked hundreds of questions about my lifestyle, work, stress etc and came up with the diagnosis of fybromyalgia.

To be honest when they first told me i was too embarrassed to tell my family. From what i read it was more of a lets give this a name as we cannot find anything else wrong with her. I felt it was all in my head.

But the doctors reassured me that it was indeed very real but no real harm done longterm, i.e. there is no damage or deterioration of the joints etc.

They prescribed me pills to help me sleep and also to relax my joints whilst i slept. They said that the body doesnt really sleep properly, the muscles dont relax enough to recover and regenerate.

I never took them, not even one and when i went back for my check up the doctor said he was actually delighted i was managing without them.

The treatment i got was hydrotherapy and physio therapy for my back and they told me exercising was a huge benefit. I tried to rid my self of some of the stress and burdens from my life and i found this helped. Single mum living alone with my son, i was always tired but it was a different tiredness i just knew it!

I rarely suffer now tbh, my wrists still ache some days so much so i cannot even life the kettle but its rare now whereas before it was constant. And it does improve once youi look after yourself, in fact when filling in forms asking for illnesses i always forget that i have it!

Best of luck with it!

baz265

Hi, i am 26 years of age and have had fibromyalgia since i was 14. It is not fun let me assure you of that. Back years ago it was impossible to get any doctor to listen to you about it but fortunately they have realised that it is something.
I would be interested if you can remember getting any really bad viruses or shocks in the last few years and how long your pains have been going on and where is worst.

I will give one bit of advice that a lot of people will not agree with but if you are diagnosed with it and they tell you to go for physio and the rest dont bother wasting your money. You will get a days relief and then back to the same crap again for 60 euro. My parents have spent well over 500,000 in the last 12 years and i have not improved one bit, fi anything i have gotten worse and problems just keep arising.

I have been to so many doctors and the last one was in blackrock clinic who is a specialist in fibromyalgia and i was put on anti depressents which in turn have now screwed up my liver which i have just had about 12 blood tests in 5 months and still nothing. The pain does not bother me anymore as i am so used to it at this stage.
I am a lively person and i play american football, now granted it takes me 3 days to recover fromm it every week but i feel if i beat myself up more with fitness and pain it might actually go away.

Sorry for rambling but it really does piss me off a lot. Doctors havent a clue and things will keep on popping up just when u feel better and back for more tests and no conclusions.

If you need any help on who to go see and see if they can make a difference for you give me a shout. From what i have learned everybody reacts differently to each other so maybe some stuff i have tried may help you.

LegacyUser

baz265 wrote: »

I will give one bit of advice that a lot of people will not agree with but if you are diagnosed with it and they tell you to go for physio and the rest dont bother wasting your money. You will get a days relief and then back to the same crap again for 60 euro. My parents have spent well over 500,000 in the last 12 years and i have not improved one bit, fi anything i have gotten worse and problems just keep arising.

I have been to so many doctors and the last one was in blackrock clinic who is a specialist in fibromyalgia and i was put on anti depressents which in turn have now screwed up my liver which i have just had about 12 blood tests in 5 months and still nothing. The pain does not bother me anymore as i am so used to it at this stage.
I am a lively person and i play american football, now granted it takes me 3 days to recover fromm it every week but i feel if i beat myself up more with fitness and pain it might actually go away.

Sorry for rambling but it really does piss me off a lot. Doctors havent a clue and things will keep on popping up just when u feel better and back for more tests and no conclusions.

If you need any help on who to go see and see if they can make a difference for you give me a shout. From what i have learned everybody reacts differently to each other so maybe some stuff i have tried may help you.

I agree – dont bother with physio. I had endless sessions and it did me no good. That was years ago but I don’t suffer too much now apart from some pain in my joints when i am tired and often after a night out. I have bouts of bad sleep – waking up feeling like i haven’t had any sleep.
I took medication for years before realising that they were anti-depressants. I know i was naive but i was fairly young when given them and just kept taking them.
My advice to anyone with FM is just look after yourself – do everything in moderation and try and do as many relaxing activities as possible. If you have a bad bout of pain maybe try something that will take your mind off it.

kangaroo

I'm another person who had a lot of physio appointments for Fibromyalgia-type symptoms - over 100 appointments (lost count) virtually all private [I went to a physio in college but wasn't impressed as there was "no gadgets" involved (ultrasound, interferential, laser, etc)].

The problem for me with going to the physios was they convinced me exercise was the answer. I wasn't diagnosed for the first five years of my illness but I had mainly muscle and tendon problems for the first four years, and was probably treated like a Fibro patient. Unfortunately it turned out I had M.E. and my health went down hill with the exercise and I've been left severely affected for over a decade (after being mildly affected - and I think I would have remained mildly affected if I hadn't kept pushing myself to exercise).

I'm sure physios do have their place; but they should be a bit more cautious about suggesting exercising will cure everything.

dlofnep

Hi - I haven't been diagnosed formally, but I had awful fibromyalgic muscle pains in my legs for 2 years - which was attributed to gluten intolerance. I'd advise you to get an allergy test done. Alot of people with fibro notice that their pain gets much worse with foods like bread..

I saw a rheumatologist, I have to go back to see him whenever they call me. They were testing me for coeliac as I advised them that gluten flared the pain up.

arthistory

Hi, i was just wondering could anyone give me some advice about fibromyalgia treatment and are there any support groups in ireland? Thanks in advance

star-pants

Theres two threads http://www.boards.ie/vbulletin/showthread.php?t=2055453021 and http://www.boards.ie/vbulletin/showthread.php?t=2055086436 that talk about fibro, there might be some useful stuff in there.

How long have you had it/when were you diagnosed?

LegacyUser

Well all I can say is i hope your own GP is more understaning than my own.

I'm convinced I have FM but my GP is being a complete pr1ck about it and has told me out straight he thinks I'm swinging the lead.

I have asked for referrals to all sorts of consultants with no avail.

The pain and discomfort i've experienced for the last few years are indescribable and he just won't listen.

I've tried approaching the different doctors on my own but they are loathe to see me without a referral.

If anyone can advise me the next step i should take I will listen.

Best of luck OP because i know what you're going through.

star-pants

Have you tried going to a different GP?
And see if they will refer you to a rheumatology clinic or something? (where are you based?)

arthistory

My doc has referred to rheumatologist but i'm still waiting for an appointment. There are lots of books on amazon which i'm going to get to try and get more info.

arthistory

star-pants wrote: »

Theres two threads http://www.boards.ie/vbulletin/showthread.php?t=2055453021 and http://www.boards.ie/vbulletin/showthread.php?t=2055086436 that talk about fibro, there might be some useful stuff in there.

How long have you had it/when were you diagnosed?

thanks, the threads were helpful. I wasn't actually diagnosed...i feel myself i have it as i have all the symptoms. i was referred to rheumatologist (but haven't appointment yet) because doc thought i'd arthritis. i only heard about fibromyalgia since.

star-pants

Aye I spent nearly a year and a half going back and forth to rhuematology as my GP thought the same. My mother has rhuematoid arthritis and I've had pains since I was 11 so obviously it was thought it might be that. But I never got swellings, I'd get heat and pain but no swelling. Also my bloods would never really show up much.
Finally ultrasounds on my wrists showed tendonitis in both, along with muscle inflammation.
So the head guy came in, prodded me in all the specific locations, asked a few Qs, gave me a leaflet on Fibro and discharged me.

Because it's not their dept apparently. But they should be able to rule out arthritis anyway.

url

hi
i have fibromyalgia. a book i would recommend would be what your doctor may not tell you about fibromyalgia. it really is great.
I hope you get the diagnosis you want.
all the best

Even Flow

Hi, I just started on Lyrica for fibro last night, along with Amnitryptiline.
50mg Lyrica twice a day, and 25mg Amnitryptiline once a day at night.

Took my two tablets (lyrica and Amni.) last night before bed. Woke up this morning feeling totally out of it .. but knew I had to take the morning Lyrica.
Took that, went back to bed and woke at lunchtime, and I am still out of it.
I feel drunk and unsteady on my feet.

Is anyone on these tablets. I know they have side effects, but do the side effects ease once your body gets used to them?
I have two small children so I can't obviously go back to bed every day because I'm out of it on them :rolleyes:

Thanks for any input.

star-pants

They do ease out a bit after a while, I was on both of those, separate times though not together. I had a reaction to the amytryptiline so came off it and the lyrica sent me a bit loopy and gained weight.
My mother's on lyrica still and at first she was the same as you - groggy and light headed and would have to lie down, she didn't like it at all. But it works great for her so she stuck at it and she doesn't really feel the side effects anymore. It'll take a while for your body to adjust to taking the meds. With Prozac it took me over a month to settle.

Unfortunately everyone is different so it'll settle when your body settles. But it does get easier.

Even Flow

Thanks a million,
On the upside I am currently not feeling nearly as much pain as normal. Only my ankle at the moment!
I do look like I have the DTs though the way my hand is shaking

star-pants

Well that's something! if you're in less pain.
I know it's annoying to have the side effects, but the dizziness does wear off, my mother doesn't really have them anymore and they do work wonders for the fibro in her chest.
So try and see if you can stick at it, I know it's not easy - my mother was having to run the house (and I've two younger siblings) and if I was in work obviously I couldn't help but maybe (I don't know) your husband/OH could take a few half days? even just till you get a bit more used to it? or can a mother/father / inlaw help?

byhookorbycrook

I am on amytryptiline for nerve damge due to MS. I finnd it took a while to get it right on the timing, I usually take it about 90 mins before going to bed, any later and I'm zonked the next morning.

I also take gabapentin, a cousin of lyrica,I take it when going to bed .

Bidd

I'm on Lyrica 150mg twice a day. Also Cymbalta 60mg. I'm taking other meds too for pain and to help me sleep. Getting a restorative sleep can be a problem for some people with Fibro or just trying to get to sleep.

I had the same symptoms as you when I started on Lyrica. I started on a low dose and that was increased until I reached a level where I had pain relief. I still feel zonked at times but it usually lasts for a certain time-approx an hour or so after taking it. Just be aware of the side effects and let your GP/Consultant know if they don't get easier.

Weight gain can be a problem too. I gained a lot. But it's worth it for the pain relief. I am not totally pain free but the Lyrica and Cymbalta have helped a lot.

B

GER12

So glad to hear that weight-gain isnt just me - can put it down to lyrica. I started with Neurontin - totally zonked me for the day - I couldnt function - then I went onto Lyrica started it during the day at low dose - was increased but had to take it at night - couldnt function when taken during the day - sometimes also drowsy not with it during the day - so take care and dont drive when that happens.

psycho-hope

hey op my mum is on the same two meds at the moment , she is on a higher does of the lyrica and finds she is wrecked all the time but cant cut back because if she does shes in too much pain. she finds is she takes the amytryptiline about 90mins to bout 2hrs before she goes to bed she isnt as drowsey in the morning

hope that helps

lilminx

Hi and apologies for restarting this thread but I just wanted any feedback re lyrica and cymbalta.

I'm on lyrica 200mg twice daily, cymbalta 120mg twice daily, zyprexa 2.5mg a few hours before bedtime (was on a higher dose but slept loads during the day too). Now there has been a significant improvement in my pain over the last number of months but the last week has been hell for me and now i'm on meptid 200mg 4 times a day to help with pain. But i'm still not sleeping well. Have very unsettled sleep and wake up feeling unrested.

Major weight gain which has really upset me as i had been losing weight steadily when i was neurontin but it didn't help too well.

So i'm thinking i'm on a huge amount of drugs and i'm worried that it's just another step on the scale of getting worse. I'm worried about getting more ill and of course that ensures i don't sleep and then makes me worse. Vicious cycle.

My psychotherapist prescribed the cymbalta but i've stopped going to him as I felt that €120 for half an hour a fortnight was just too much for what i was getting out of it. My parents were paying for it as I can't afford it on illness benefit.

Now i'm awaiting a biopsy on a lump on my tongue and that's making things a lot more difficult. My parents again are offering to pay for me to go private but this ensures i have more and more guilt around my health and the fact that I feel in their eyes i've just been sitting on my ass for a year getting fat. It's not what they think and they're very supportive but of course my mind goes into overdrive. It's hell at the moment. I'm just thinking the worst on every situation.

My GP was worried about my cymbalta dosage but i do feel somewhat better on it. But I'm not sure if I should reduce it or whatever. My sister got infuriated when she found out i was on meptid and suggested i try 'alternative methods' of pain relief. I looked at her so upset that she didn't understand that when I do have pain it's all i can do to get out of bed.

My GP asked me a few weeks ago what level my pain was at... I was a 10 last October. I told him a 4 and it was heaven... Should I expect the pain level to reduce more than 4? or should I not raise my expectations for fear of disappointment? I'm back at 9 or 10 again and it's so infuriating.

I'm sorry if this is a rambling post but as you can tell i'm a little all over the place at the minute. Deciding whether or not to go back to work *not doing what I did as it was highly stressful and I burned out*, but something to focus on and to get me back into the real world?

Does any of this make sense?

Thanks for listening.

carrot_flowers

Hi All,
I'm new to Ireland, just moved to Dublin a little over a month ago. I don't really know anyone here but my husband and am looking to make friends with others who also have FMS. Introduce yourself if you've got it too and looking to make friends!

kangaroo

I saw this elsewhere - it's a link to reports on a recent Fibomyalgia conference in the UK

Have a look at this link http://fmsglobalnews.wordpress.com/2010/04/30/a-win-win-fibromyalgia-conference/ , or - http://tinyurl.com/37sghgp for reports on the speaker's presentations (including) -

Professor Ernest Choy MD, FRCP is Consultant Rheumatologist at King's College

Dr Peter Fisher Chirr, MB, FRCP, FFHom is Clinical Director and Director of Research at the Royal London Homoeopathic Hospital , London ,

Professor B K Puri MA (Can tab), PhD, MB, Chirr, BSc (Hones) MathCAD, MRCPsych, DipStat, PG Cert Maths, MMath, is at Hammersmith Hospital and Imperial College London,

Dr Cathy Price MB BCH, DCH, FRCA, FFPMRCA is a Consultant in Pain Management, Southampton University Hospital NHS Trust and a member of the British Pain Society

Dr Ian H Treasaden MB BS LRCP MRCS FRCPsych LLM Head of Forensic Neurosciences, Lipid Neuroscience Group, Imperial College, London.

Dr Nick Avery MB BS LRCP MRCS MFHom from the Natural Practice at Winchester & Eastbourne

Dr Robert Lister BSc PhD FBS C Biol. is a Director of Phyla Ltd, a health care consultancy and Director of Cubic Ltd,

Dr Raymond Perrin DO PhD, Hon. Senior Lecturer, School of Public Health and Clinical Sciences, UCLAN, Registered Osteopath and Specialist in CFS.

Andrea Barr MRSS (T) is a Shiatsu teacher/Complementary Pain Specialist, interested in FM, and has lectured in Switzerland , Austria and UK .

Dr Nina Bailey BSc, PhD is a nutritional scientist working in dietary health and nutritional intervention in disease, with emphasis on the role of fatty acids in fibromyalgia, depression and ME.

Dr Mageb Agour MB, BS, MRCPsych recently presented his latest research findings into sleep disorders

Andy Pothecary MPharma (Hons), ACPP Pharmacist is a Senior Pharmacist at Worthing Hospital .

kangaroo

I think there needs to be more research like this into Fibromyalgia:

*Preliminary Evidence of Increased Pain and Elevated Cytokines in Fibromyalgia Patients with Defective Growth Hormone Response to Exercise.*

Ross RL, Jones KD, Bennett RM, Ward RL, Druker BJ, Wood LJ.

Open Immunol J. 2010;3:9-18.

Oregon Health & Science University, School of Nursing, 3455 SW US Veterans Hospital Road, Portland, OR 97239, USA.

*Abstract*

Mounting evidence suggests fibromyalgia (FM) symptoms are influenced by dysfunction of the hypothalamic-pituitary-hormonal axes (HPHA) and the immune response system. The predominant FM symptoms of widespread pain, fatigue, sleep disturbance, depression, stiffness and exercise intolerance are related to abnormal levels of growth hormone (GH) and are reminiscent of "sickness behavior"; a syndrome initiated by the production of pro-inflammatory cytokines in response to various stressors.

Cognizant of the reciprocal relationship between HPHA activity and the immune response system, we hypothesized that serum cytokine levels and FM symptom severity would be higher in FM patients with defective growth hormone response to exhaustive exercise compared to those without.

Outpatients with FM (n = 165) underwent a Modified Balke Treadmill Protocol and GH response to exhaustive exercise was measured in peripheral blood samples. Levels of IL-1alpha, IL-1beta, IL-1RA, IL-6, IL-8, IL-10, and TNF-alpha were measured from stored serum on a subset of 24 participants (12 with and 12 without normal GH response to exhaustive exercise).

FM symptom severity was assessed using the Fibromyalgia Impact Questionnaire (FIQ), number of tender points and cumulative myalgic scores.

GH dysfunction was associated with increased pain scores on the FIQ (p = 0.024), a greater number of tender points (p = 0.014), higher myalgic scores (p = 0.001) and higher pre-exercise levels of inflammatory cytokines IL-1alpha (p = 0.021), IL-6 (p = 0.012), and IL-8 (p = 0.004).

These results suggest that a defective growth hormone response to exercise may be associated with increased levels of blood cytokines and pain severity in FM patients.

Chaz

I suffer from Fibro. Been on Amitriptylene (25mg) for around 3 - 4 years now - seems to help a lot and I vary the dosages depending on how I feel.

i-digress

Chaz wrote: »

I suffer from Fibro. Been on Amitriptylene (25mg) for around 3 - 4 years now - seems to help a lot and I vary the dosages depending on how I feel.

This drug helps me too, though I'm on 50mg. God, it's a tough illness though.

Chaz

i-digress wrote: »

This drug helps me too, though I'm on 50mg. God, it's a tough illness though.

I am still a bit uncertain if the diagnosis is accurate and Im thinking along the lines of thyroid problems. My mom had her's removed when she was younger - I think it was producing too much of whatever it produces.

If you read about under active thyroids then it almost sits similar to FM ... or what Ive been struggling with at late.

What side effects do you get from Ami? What times do you take the dosages?

PM if you prefer not to discuss publicly - thanks.