Fibromyalgia

flutterflye

StinkySocs wrote: »

Hi All,

I have RA for 9 years, since I turned 20. In the last 6 months I've been diagonsed with Fibromyalgia and now a new thing, well I've never heard of it before now, called Costochondritis.

The Fibro & Costo always flare up a few days after I'm stressed...I think I've got away with it...then BOOM, knocked out for days.

I get costo sometimes.
For me, it comes on when I've been particularly stressed and anxious.
Usually takes weeks of rest and anti-inflammatories before it finally eases.
I think the best thing for it is prevention - not over exerting yourself or taking on too much, and managing your stress well.

over30

notcrazy wrote: »

It would all depend on your area and how your GP refers you. To be honest as most doctors don't even recognise it you could be waiting I went the private route so it was only a few weeks from initial GP consult to diagnosis by consultant but as GP doesn't recognise the condition that doesn't really make any difference!
Rheumatologists have long lists in general and the guy I saw made a diagnosis but has no intention of following it up he just said that's what it is now off you go and do some exercise thanks for the cash!

hope you get sorted soon

that sounds just like the guy i saw, he said i had fibro told me to exercise and charged 180. was your doc in the bons secours dublin. i was speaking to someone who was diagnosed following a load of tests, the rheumatologist i saw only looked at my back and there was little discussion about any other symptoms apart from pain. he didn't investigate stress points etc. very disappointed with consultation and report.

notcrazy

over30 wrote: »

notcrazy wrote: »

It would all depend on your area and how your GP refers you. To be honest as most doctors don't even recognise it you could be waiting I went the private route so it was only a few weeks from initial GP consult to diagnosis by consultant but as GP doesn't recognise the condition that doesn't really make any difference!
Rheumatologists have long lists in general and the guy I saw made a diagnosis but has no intention of following it up he just said that's what it is now off you go and do some exercise thanks for the cash!

hope you get sorted soon

that sounds just like the guy i saw, he said i had fibro told me to exercise and charged 180. was your doc in the bons secours dublin. i was speaking to someone who was diagnosed following a load of tests, the rheumatologist i saw only looked at my back and there was little discussion about any other symptoms apart from pain. he didn't investigate stress points etc. very disappointed with consultation and report.

Hi my guy was in Galway clinic very nice but abrupt too. I was an inpatient and he came around at 8:30 poked a few points and said you have fm that's it! I have serious migraine issues too so they seemed more intent on sorting what they do recognise

All I can suggest is that you address your life choices start saying no to people and try to sleep that's the hardest bit for me I can't sleep

star-pants

Have to say my diagnosis was similar - I was attending rheumatology as they suspected it might be RA (which my mother has). They kept trying to pawn me off / find ways to discharge me. Once 'consultant' even said to me 'sometimes we just get pains and we don't know why' as his reason. I saw a different consultant each time I went, and one lady even had to ask me if I could help her read the notes written by the previous consultant because she couldn't make them out!

Only for a bad case of tendonitis at the time in my wrists (which comes with fibro) did a nurse actually suggest an ultrasound where they did find fluid etc. Then one of the head guys came in, prodded in the relevant places and declared I had fibro, gave me a booklet and discharged me.

The only other help I've ever received regarding medication etc. is my own GP who fair play to him is very decent about things.

Sleep is very important, I just don't sleep properly/much, no matter what I try.
I do try to exercise but can only do gentle exercise when I'm well.

They are important though, and so is looking at your diet. I unfortunately can't keep to a diet because I've a bad stomach, and a touch of IBS and thus am frequently ill.

over30

has anyone been diagnosed by a neurologist or have most been diagnosed by a rheumatologist. has anyone been told they have both fibro and m.e.

how long did it take to get diagnosis and did it involve a lot of tests to eliminate other conditions and going to a lot of different specialists. i would love to know who is best on east coast or even northern ireland can anyone give me an idea of full cost involved in getting diagnosed. i just hate the thought of a long drawn out search to get a proper diagnosis not to mention the length of time it all takes.

Tropheus

It takes time. Fibro is basicaly the elimination of all other possibilities. There is no specific test. In my case, it was a rheumothologist that came to the conclusion after many years. I think he's bang on, but frustrated at all the money and time spent getting there.

over30

ksimpson wrote: »

It takes time. Fibro is basicaly the elimination of all other possibilities. There is no specific test. In my case, it was a rheumothologist that came to the conclusion after many years. I think he's bang on, but frustrated at all the money and time spent getting there.

thanks for reply, i thought that might be the case. i had heard of it taking years but hoped that now it seems to be more prevelant there was a quicker way of arriving at a diagnosis. my dr said he thought i might have it as a result of a car acccident and i have seen this mentioned a lot when i try to find info on the condition. i thought of going to a support group meeting to get some advice as i would like to hear what people thought of their consultants so i could get a referral to a good one from the patients point of view as i was really put off by the one i went to.

kangaroo

over30 wrote: »

has anyone been diagnosed by a neurologist or have most been diagnosed by a rheumatologist. has anyone been told they have both fibro and m.e.

A recent study of English GP patients found that 71% of those with a primary Fibromyalgia diagnosis have CFS (many have Canadian ME/CFS) See Table 2 in http://bit.ly/oLLawP
from

Nacul LC, Lacerda EM, Pheby D, et al. Prevalence of myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of
England: a repeated cross-sectional study in primary care. BMC Med.
2011;9:91 free full text: http://www.biomedcentral.com/content/pdf/1741-7015-9-91.pdf

Emotioncu

Hi all there is a page on facebook Fibromyalgia Dublin - click Like, it posts supportive, relevant information associated with Fibromyalgia, Chronic Fatigue and Depression and its aimed at basically setting up a meet-up support group, its worth checking out, gentle hug's to all

thecelt

In answer to my own post asking if any had tried accupuncture,

I have just started accupuncture and have also given up dairy,coffee and sugar~!

star-pants

good luck thecelt, I hope it helps in some way for you!

StinkySocs

thecelt wrote: »

In answer to my own post asking if any had tried accupuncture,

I have just started accupuncture and have also given up dairy,coffee and sugar~!

Best of luck! Keep us up to date with how it goes!:)

danjo-xx

StinkySocs wrote: »

I was trying to cut out caffine so tried Green tea, and kept having massive flare ups, took me ages to figure it out!

Hi SS... are you saying that the Green Tea made you worse.......



Just asking as my partner suffers from this also + other stuff.

StinkySocs

hey Danjo,

Ya, it had a really negitive effect on me, but it could work wonders on your partner.

QuiteInterestin

Hi all,
I was wondering if anyone on here has tried yoga for their fibromyalgia and if they found it good? Haven't been officially diagnosed with Fibromyalgia but my GP seems to think its likely and I'm waiting to see a Rheumatologist (unfortunately it'll be a year before I'm called and since my treatment so far has been via the public system, I'm not sure how going privately would work as they wouldn't be able to refer me back to the public system for treatment if required, or would they??). I was advised by doctors in the past to do pilates to help my joints, and I have being doing this for over a year now (have progressed a bit, but still bottom of the class ).

However, tried acupuncture today as advised by my GP, and the acupuncturist agreed that Fibromyalgia seemed a likely diagnosis (though, as she herself stated, it was not her role to diagnose) and if that was the case I shouldn't really be doing pilates and they would tense me up even more and Yoga would be more beneficial.

Was wondering if anyone out there with fibromyalgia did pilates or yoga or both, and which ye found the best (or worst)? Also, there seems to be a few different types of yoga, can anyone on here recommend one in particular that would be good for someone who has sore, tight joints all over?

Thanks in advance

I have been really sick from this the last few weeks, worse than the few previous years.

I have a question, I was wondering if anyone here was able to get disablity allowance for Fibro? I am in no position to work, and wanted to see if I could get some aid.

Just wanted to hear others experience, as I previously has heard Fibro was not recognised.

Anomic

Hey, just wondering if anyone here taking D-ribose suplement, was given Dr Teitelbaums book recently " From fatigued to fantastic " , and while there is a lot of general stuff in there, it does focus on D-Ribose, and having done a lot of research online, there looks like there could be some merit in it. Just curious if anyone here taking it for Fibro?

thecelt

I had 3 sessions of accupuncture for now,
am taking magnesium,B2 and malic acid,
I also have given up dairy products, sugar and coffee,
It has made a difference, I am not as sluggish,
Overall I feel a bit better,
I cant say for sure if its a combo of everything or what.

giving up dairy isnt as hard as you would think,
am not a fan of soya milk but i like rice milk,
and you can get a soya spread which is dairy free
(some of the vegetable spreads still contain dairy so u need to read the ingredients)

princess-lala

Jake1 wrote: »

I have a question, I was wondering if anyone here was able to get disablity allowance for Fibro? I am in no position to work, and wanted to see if I could get some aid.

I'm sure your gp can give you a sick cert to send into the social like she could for a cold or flu? I can't claim the sick so don't know for sure!

I know my gp reckons I'll get a medical card if I apply cause shes got me on alot of medication and whatnot!

princess-lala

princess-lala wrote: »

I'm sure your gp can give you a sick cert to send into the social like she could for a cold or flu? I can't claim the sick so don't know for sure!

I know my gp reckons I'll get a medical card if I apply cause shes got me on alot of medication and whatnot!

Hi I dont think I can get a sick cert as its been about 3 or 4 years since I last worked.
I did go to the Citizens advice bureau, and they said I wouldnt qualif due to my partner earning more than 300 a week.

Im dreading having to try to pay for next months meds. The thoughts of withdrawal are not nice. I get very sick when I try to come off the meds.

Kalishoek

When my GP told me it looked like I had Fibromyalgia I was in total disbelieve, I was reffered to a specialist who did some basic tests and it was confirmed as being Fibro. I still did not believe it as I thought the pains were caused by trapped nerves in my back and as I was due a third back operation I put it all down to that. Then a second opinion from Mrs Muriel Soden in Tralee confirmed Fibromyalgia once again. So not only a very bad back and other joint problems but also the crippling constant pain of Fibro, with now the latest Fibro related issue Trigeminal Neuralgia. And there is no real answer to what Fibromyalgia is so far. It nearly took me a year to realise I really have it

Bull75

Hi all, I have been diagnosed with chronic fatigue syndrome recently and my specialists wants me to start a course of Lexapro 5mg, as this is an antidepressant I was wondering has anybody else uses this treatment and has it worked?

Graces7

Kalishoek wrote: »

When my GP told me it looked like I had Fibromyalgia I was in total disbelieve, I was reffered to a specialist who did some basic tests and it was confirmed as being Fibro. I still did not believe it as I thought the pains were caused by trapped nerves in my back and as I was due a third back operation I put it all down to that. Then a second opinion from Mrs Muriel Soden in Tralee confirmed Fibromyalgia once again. So not only a very bad back and other joint problems but also the crippling constant pain of Fibro, with now the latest Fibro related issue Trigeminal Neuralgia. And there is no real answer to what Fibromyalgia is so far. It nearly took me a year to realise I really have it

The neuralgia is something I suffer from. It was caused in my case byt withdrawal from valium after some 30 years of the misdiagnosis by many drs of M.E. A well known effect apparently.

Added now is arthritis as I age.

premierlass

Bull75 wrote: »

Hi all, I have been diagnosed with chronic fatigue syndrome recently and my specialists wants me to start a course of Lexapro 5mg, as this is an antidepressant I was wondering has anybody else uses this treatment and has it worked?

Not giving medical advice but I was at a talk by Professor Austin Darragh (who helped to write the recent International Consensus Criteria on M.E.) and he is strenously against the use of Lexapro for M.E.

femur61

Bull75 wrote: »

Hi all, I have been diagnosed with chronic fatigue syndrome recently and my specialists wants me to start a course of Lexapro 5mg, as this is an antidepressant I was wondering has anybody else uses this treatment and has it worked?

My husband is taking 5mg of Lexapro, he is by no means cured but it has made a huge diffeence. He stretches, has given up dairy, sugar, stopped caffine, doesn't smoke and drinks very little. He still suffers from fatigue and aching muscles. It is not as bad as it was but by no means gone, he would love to be symptom free.

ariangirl

Hi I know that some of the posts are fairly old but this may help someone. Some people have found great relief by taking supplements. There s a great series of videos on utube by a dr Rodger murphree google it. He also has a website. Supplements such as magnesium and vitamin d3 plus co enzyme Q10, b complex and l carnitine seems to help. If you live or travel to uk you can also buy 5htp which is a natural serotonin reuptake supplement and helps with sleep. Well worth the try, look into it. Oh and milk thistle is good too to help detox body.

Tropheus

I would also advise that you try steering clear of gluten . I have Fibro and have found this very beneficial. Others I've met with Fibro have had a similar experience. It needs a bit of research and practice, but hopefully it works for you also.

ariangirl

Re: gluten,
I found out after many months of digestive hell that gluten, sugar and yeast make me worse. I seem to have developed an intolerance to these suddendly.

buzzingnoise

ksimpson wrote: »

I would also advise that you try steering clear of gluten . I have Fibro and have found this very beneficial. Others I've met with Fibro have had a similar experience. It needs a bit of research and practice, but hopefully it works for you also.

read the book "Wheat Belly" you will be amazed at the effects of gluten on the body. also ireland happens to have the highest % of coeliacs in the world.

gluten sensitivity, depression or haemochromatosis could explain a lot of the symptoms in here. get well soon all