Can anyone advise on fibromyalgia please?

maud48 · 2. Jun 2010, 11:58

I have OA and recently been diagnosed with fibromyalgia.
Every time I do anything the least bit strenuous I am completely knocked out for several days. Not just tired but completely unable to function and it seems to be getting worse.
We had family and grandchildren visiting at the weekend and since they left I've been totally exhausted. Not just tired but unable to do anything - if I had to do anything like cooking a meal I would just have to lie down on the floor and die.
As you know we have a grandson with disabilities living with us and my poor OH is having to do everything as well as his job. I feel so bad for him.
Does anyone know about fibromyalgia and if this is nomal and if there's anything I can do about it?
Thank you
maudxx

dreamdaisy · 2. Jun 2010, 12:03

I don't have it but I know that my local hospital has leaflets/booklets about it. Would someone be able to check if that is so at your local hospital? I think the AC advice line would be a good port of call too, they should have some info available. I am sure that others with more experience will be along soon, I'm sorry that I cannot be of more help. Take care, Dreamdaisy

frogmorton · 2. Jun 2010, 12:04

Hi maud

you poor thing

My ex MIL has this and normally I would ask her but she is in sapin with my kiddies.

However there are others on the forums who can definitely advise. You neeed top knwo effective treatments now dont you? One of the main ones i belkeive is to ensure you get sleep ans fibro DOES take it out of you and doc shuld/could have given you someothing for it.

Good luck and i knwo the others will help you more than i can

Love

Toni xx

rosebud · 3. Jun 2010, 03:57

I read recently that fibro can be a symptom of low vit D. May be worth getting your levels checked!

ailsamary · 3. Jun 2010, 05:45

try this link, i too have Oa and they reckon i have firbromyalgia (though my GP said polymyagia) there's also a link there as well on chronic fatigue

http://www.arthritisresearchuk.org/arthritis_information/arthritis_types__symptoms/fibromyalgia.aspx

tillytop · 3. Jun 2010, 06:07

Hi Maud - so sorry you are struggling so much. I don't know about Fibromyalgia but was researching for someone else and came across the website of The Fibromyalgia Association. Dont know how to post the actual link - or if I am allowed to do so here but if you type: www.fibromyalgia-associationuk.org into your web browser you should find it. Looks as if there is quite a lot of useful info there for you which might help.
Hope you can get some help to feel better soon.
Love Tilly x

Oh - looks as if the link works as soon as I submit the message. Moderator - hope I haven't done a wrong thing! Tilly :oops:

dreamdaisy · 3. Jun 2010, 06:12

Be reassured tilly, I don't think you have. People post links all over the place, I wondered how they did it, now I know! DD

tillytop · 3. Jun 2010, 06:16

Hi DD - very glad about this - really wouldn't want to get into trouble - love this forum and wish I had found it sooner! Are you still feeling Humira fab today? Hope so.
Love Tilly x

tjc123 · 4. Jun 2010, 15:24

Hi I was wondering are there any tests to see if you have this?

Sorry if this has already been asked Im just too shattered to read through all of the posts

Thanks tjc

jordan7j · 4. Jun 2010, 15:57

tjc123 wrote:

Hi I was wondering are there any tests to see if you have this?

Sorry if this has already been asked Im just too shattered to read through all of the posts

Thanks tjc

Hi, I was recently diagnosed with fibromyalgia, 16th April to be exact. The tests that were done were the tender spots, and becuase the consultant said I shouldnt be getting this amount of pain just with the RA.
I am not very knowledgeable still, so cant give any real answers. I was prescribed 75mg pregabalin twice a day, it seems to help a little, but obviously doesnt get rid of the pain. I think it also helps my sleeping a little, I was told by the rheumy nurse that it should be better than the amtitriptyline.

Maud, totally agree to look on the site, I have joined it, and as I say, still learning. I hope you can get some help re the pain and fatigue. Its such a debilitating illnes, and many people still do not accept it as a "real" illness.

ritwren · 5. Jun 2010, 16:29

Maud, as if you don't have troubles enough now you have yet another diagnoses and more pain to add. I'm so sorry you've got this too. I was diagnosed by my Rheumatologist the last time I went just a couple of weeks ago. It does explain the high level of fatigue and why even the slightest touch can be incredibly painful.
One of the main things he said is that in my case it's being caused by the lack of sleep and exhaustion I'm having due to the pain of the PA. This may be what has brought it about with you too I think from different things you've said.
It's easy to say rest more but in practical terms it's not always possible I know. He has said to me he will perhaps give me some Lyrica or increasing doses of Amytriptyline when I see him again in 3 months. :roll: What one is ment to do in the meantime is beyond me. I did get a steroid injection which helped arthur but not the FM.

There is a good leaflet called Fibromyalgia an information booklet. It's produced by www.arc.org.uk
That's the arthritis research campaign.

I do hope you get something to help you.
sending gentle hugs, rita

speedalong · 5. Jun 2010, 16:43

Hi Maud, no advice to offer - sorry.

Just wanted to offer some cyber support.

Speedalong

minky67 · 5. Jun 2010, 18:47

Hi Maud, im so sorry to see your suffering from fibro too.
I started off with OA then got the fibromyalgia dx added, it did explain the fatigue, muscle stiffness & pain Plus lack of sleep etc, etc.
There is a link with depression & Fibro but so far it is a new Condition, one that a lot of drs like to ignore.
Im under the pain clinic after a few years of ignorant gps & my Rhmy. They just didnt know what to do with me. As soon as i got to pain clinic i explain my muscles being stiff & painful, my fatique at the slightless household chore & lack of sleep plus joint pain. They did the trigger point test & half way through said yes you have Fibro.
Ive had my amprityline incresed to 50mg a night,ive tried Gabapentins (nerve pain blocker) but now on Lycria(Pregabalins) 150mg as i cant do 300 twice a day as im totally spaced out.Im on Tramadols 100mg 4 x a day, Ive got anti diahorra tablets as ive got IBS which is also associated with Fibro, but then ive got med to make me go as i suffer constipation.
I cant seem to win with my condition & so feel sorry for you. I hope you can get as far as i have so far.
Ive been seen by OT for splints,had injections into joints & now self refering to physio through advise of OT for massgae to get my muscles in shoulders sorted,Stretchers for my plantar Fasciitisi in my feet(police mans heel, inflamation in my tendons in feet)
& walking aids for the house.
Ive also had a bathlift & perching stool from Ot at hospital & a disabiltiy facities grant going through social services for a stair lift.
Theres a lot of help out there, its just a case of asking for it & following it up.
Be firm & its not easy to get what you need, but its there if you can fight for what you need.Not easy when your struggling & feeling unwell.
I hope you can get some help & its took me nearly 3yrs to get what ive got in place so far.
debs
OH ER ive gone on a bit there.(sorry)

weesabetty · 5. Jun 2010, 18:57

Hello Maud, I was diagnosed with fibro 2 years ago,I recently saw a rheumy again re other things and he said that the pain and fatigue of fibro can be worse than rheumatoid.

I dont often cook a sunday lunch for my family these days I find it easier to treat them to a meal out sometimes.

I find the fatigue worse than anything else, sometimes I wonder how I can be so exhausted and still be alive, It has robbed me of some aspects of my life and I used to be so active, I wish I could say there is something that you could take that would help,you just have to try to pace yourself on the good days, I can no longer work because of it, that does bring with it the pleasure of chilling out in the garden or reading a good book though, take care and dont beat yourself up about it, when you have a flare up you just have to go with it and rest all you can, hugs, jan

elnafinn · 5. Jun 2010, 19:30

It may be a load of old tosh but I have read that cutting down on carbohydrates, coke, diet coke, carbonated drinks etc, coffee and caffinated tea, if you suffer with fibro, can make you feel less fatigued. I do remember you saying that you drink a lot of coffee, to keep you going during the day. You may find that if you could cut it out, you may move away from that lift, crash, lift, crash syndrome. Also a little exercise ie stretching can help too. None of these suggestions may improve the fatigue but there is no harm in trying, for a while, if you have not done so already.

Luv
Elna x

bubbles · 6. Jun 2010, 19:58

Hello Maud, sorry to hear of your recent diagnosis, I had been feeling like that for a while and finally the Rheummy said it was Fybro, (called it something technical and long winded, but it was the same thing).

At the moment my amitryp is going on be degrees to see if that helps, if not then pregablin seems to be the drug of choice at the moment as it also helps you to rest and sleep, which we know is important. Alongside a full whack of hi dose co codamol.

I tried to explain to the Drs about the fatigue, all I could liken it to was running into a brick wall, one minute just about ok and pottering about etc, then suddenly, wham, you just don't know what to do for feeling so rotten and utterly shattered, even to the point of not being able to rest and sleep, so it is a viscious circle. Too tired to speak, eat, etc. It is horrid. Hope they can sort out the right pills and help as much as possible. Take lots of care, XXX Bubbles.

Can anyone advise on fibromyalgia please?

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