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fibromyalgia - any info?

9 replies

inpain · 21/02/2004 10:49

does anyone know anything about this condition. i have suffered with pain in my legs/hips and back for about three years now. ive had physio blood tests injections you name it, but never any real answers. its like i havnt felt well in myself not just the pain and ive had all sorts of other symptoms which i never thought were connected like sinusitus, heartburn, and itching in my ears. when i went on a self dignonsis website and put ALL the symptoms in fibromyalgia was suggested. never even heard of it but it did describe me exactly. i dont really want to go to my doc and say i know what is wrong cos they always hate that but i am feeling excited about the fact that there be some help i could get at last. would be grateful for any info or even sucess stories i just want my life back

OP posts:
bez · 22/02/2004 12:09

For the last five years I have been in agony every winter. The pain seems to be in every single bone and muscle in my body but especially shoulder muscles and hip bones. Its excruciating and when I lie down, after half an hour the pain in hips comes on really badly, and feel stiff and have to change psoition but too stiff to move easily.

I had always assumed it was fibromyalgia but not seen anyone about it so no idea really. You have my sympathy, the pain is hard to cope with. Need to keep as warm as possible.

I dont get heartburn or itchy ears though!

Perkin · 22/02/2004 12:59

fibromyalgia is what doctors call a 'functional' disorder, like irritable bowel syndrome. 'functional' basically means that there is no specific abnormality to find on any test which is available and that there is a large psychogenic component to the symptoms, meaning that certain personality types tend to have this kind of disorder and that anxiety and depression tend to make the symptoms worse. It is often a self fulfilling prophesy as if you worry about the pains then they get worse and when this happens you worry more. It usually affects women in early adult life.

It is also made worse by sleep disturbance and sufferers don't get the normal amount of REM (rapid eye movement or 'dreams' ) sleep. You can give the symptoms to non sufferers by interupting their sleep in experiments.

The condition tends to recur and can last for ages but it is entirely harmless other than being very distressing.

In terms of treatment, exercise programmes are said to be very helpful as trained athletes are the only group who they couldn't give the symptoms to in the experiments they did interuppting sleep.

Also, any measure to improve the sleep you get is said to help. (I know, I know ) Amiriptyline taken in very small doses at night is particularly useful (A sedative antidepressant, NOT whilst pregnant and best AVOIDED if breastfeeding although not totally banned)

Heat treatments and massage work, but pain killers and anti-inflammatories (ibuprofen etc.) don't

Some people find steroid or anaesthetic injections at the trigger points also help.

Trying not to worry about the pains is difficult but they really should get better if you able to feel more relaxed and they will certainly get worse if you get very stressed. You will probably be able to look back and match up in your mind that the pains felt at their worst at or around certain other events that were going on in your life and stressing you out. In that respect it is very similar to IBS which lots of fibromyalgia sufferers also have!!!

Hope this helps.

inpain · 22/02/2004 14:49

i sympathise with you Bev and many thanks to Perkin. I shall follow your advice and try to calm down abit. I had thought about trying a massage anyway and the heat treatments sound like a good idea as my thighs and hips always feel really cold anyway thanks!

OP posts:
inpain · 22/02/2004 14:50

sorry - Bez

OP posts:
Perkin · 22/02/2004 15:18

massage does sound like a great treatment doesn't it! It allows you the time you need to relax and calm down as well as having the sore bits rubbed better

i really would recommend the a gentle exercise programme however as this is certainly the treatment with the best results and overall will give other health benefits that massage won't. You don't need to do anything more than a brisk half hour walk (fast enough that you feel warm and get a light sweat).

Getting out and going for a walk also allows you time to think and possibly to realx. You would be surprised at just how good the smug satisfaction of doing something that is good for you feels.

alibabs · 31/10/2011 20:07

hi i have had fibromyalgia most of my life (i am 40 now) when i was little i was told it was growing pains, then in my teens i saw a professor of rheumatology and he said it was some form or rheumatism? when i was about 20 things were becoming worse and the fatigue was really bad so i was referred to a pain clinic where they diagnosed fibromyalgia. At first i was shocked as the way it was explained at the time was like it was bad because i was stressed and had depression so i made my own problems. the thing is i have it constantly every day most days are bearable then there are the flare ups , which are a nightmare.

so stress doesnt always make it worse, i can be chilled and happy then it kicks in. i am a single mum with two dds age 12 and 9 and they are both great. my youngest doesnt like the fact i am in bed by eight most nights but i cant physically go on.

i hope anyone who has this gets the help they so deserve, and dont get fobbed off. my family dont understand and most people i speak to dont. but i feel that it is becoming more understood by the medical profession.

good luck everyone

CFSKate · 01/11/2011 19:42

Hello, I don't have fibromyalgia, but I do have ME. This Canadian website has a very good document about ME, and here is the fibromyalgia equivalent, I hope it's of some use.

An Overview of the Canadian Consensus Document for Fibromyalgia.

www.mefmaction.com/images/stories/Overviews/FMSOverview08.pdf

devon1978 · 02/11/2011 14:23

Interesting op. I too have occassional pains in different sites on my body. I wonder whether it could be fibyromyalgia. I also find tactile touching in certain areas painful. I also have issues with my sinisus. I find myself having to clear mucus each morning. Originally though it was chest related but think sinusus more likely.
Will watch with interest.

Footle · 02/11/2011 16:26

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