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Fibromyalgia - who cares? - Carers UK Forum

Fibromyalgia - who cares?

For issues related to specific conditions and disabilities.
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I am new to the site, I am a full time carer for my wife Mary who has suffered from Fibromyalgia for over 10 years, a condition which seems to be steadily getting worse.

There seems limited coverage of Fibromyalgia via the board which is surprising when one considers it is claimed that 2% or more of the population largely women suffer from it.

Basically it is painful, and causes various other issues such as mobility, sleep, weight control etc and as it worsens sufferers can become seriously disabled.

Mary and I have set up a web site to discuss all aspects of this condition with a strong emphasis on the problems facing carers.

http://www.fibromyalgia-support.net

I welcome feedback and thoughts from other carers who look after Fibromyalgia sufferers on a casual, part time or full time basis. We have a DISCUSSION board with a specific carers area where you can ask question and voice issues specific to Fibromyalgia

Maurice
Hi websi7, and welcome.

The reason that there are few posters with fibromyalgia is that so few are diagnosed. As you know, the 2% is an estimate but diagnosis rates are much lower. Chances are a lot of people with undiagnosed pain are treated as having depression rather than seeking the root cause.

Can I suggest you PM Gavin and ask him to put your website on the links page?
Sounds a good idea but what is Gavins user ID ? or email yet it would be good to have our site added to the links page.

Its not true that "few" are diagnosed by our experience the medical profession now accept FMS as a "real" illness and many, many more are being diagnosed.

Mary took 3 years to get accepted after many visits to doctors and consultants but this was 7 years ago and certainly many more are being added to the fold weekly in present day.

Some suggest that the real FMS sufferer figure is 3-6% and I would agree that until sufferers are added to the stats no one really knows.

A lot of sufferers will have mild symptoms for many years and until things get worse a proper study of their condition is not needed.

Maurice
Diagnosis is not so hot round here, but I'm glad it's picking up overall. Our area is still struggling with ME, autism, sleep apnoea, etc.

Anyway, click on Private messages on the strapline above. Then "new post". At the top of the message box is "find username". A new window will open with a search box. Type "Gavin*" - his user name will come up and you can send your message from there.
Hi websi7

I've added a link to your site on our national organisations page:
http://www.carersuk.org/Information/Fin ... anisations

I've also added a link to your forum on our online support page]http://www.carersuk.org/Information/Fin ... inesupport[/url]

Best wishes
Christine
Christine

Thanks for the link it is very much appreciated

Maurice
I have Fybromyalgia as well as partial deafness and clinical depression. I'm on this forum because my boyfriend has dyspraxia, dyslexia, OCD and hyperactivity. I'm both the carer and the caree, I feel sometimes we could both do with more information on coping especially as my doctor is of the opinion that because i cannot be cured there is no point giving me any pain relief, which makes dealing with an adorably clumsy boyfriend especially trying. (Although I have to admit, I'm not his carer because he doesnt exactly need a carer but I feel I need support in supporting him...if that makes any sense)

There needs to be more information about fybromyalgia made available to both doctors and the public, I hate being told I don't have it because the person I'm talking to hasn't heard of it.
There needs to be more information about fybromyalgia made available to both doctors and the public, I hate being told I don't have it because the person I'm talking to hasn't heard of it.
We have an excellent GP, couldn't have a better one, really. He did all the elimination tests and it was he who had suggested fibro/cfs as a possible diagnosis for my daughter before referring her to a rheumatologist. The rheumatologist diagnosed fibromyalgia, chronic fatigue syndrome and joint hypermobility. The whole process took about 6 months altogether, from the first appointment with the GP to the second appointment with the rheumatologist; it probably would have taken a bit less time if the blood tests were done faster. I wish it was as easy as that for everybody!
Image Hello it has been some time since I posted on the forums, very remiss of me. We are awaiting a diagnosis of FM (long time coming)some will know from my previous posts she who must be obeyed has also Mylo Fibrosis. I read an interesting paper just recently where ME was mentioned in the same sentence as Fibromylagia, could any one enlighten me please if this is the case and if so why?
Many thanks
Gordon
Nice to see you back Gordon.Sorry to hear Alice still waiting. Those that have experience of this will be able to advise you better , but in meantime I went looking for some information.
There are loads of links but not sure just how relevant they would be to you both.
I just used google....... Fibromylagia ME which brought up 641 links.You might want to try it whilst waiting for others to post here.

Anything else happening ?