Fibromyalgia

[Helen72]

I have finally been diagnosed with fibromyalgia which is a relief to finally no wot is wrong with me and that I'm not totally going around the twist, I've been getting multiple joint pains since 1990 and no doctor seemed to know what was wrong all bloods and scans come back normal then other problems like muscle weakness and feeling really tired and so many other problems like foggy memory, headaches, dizziness and much more . Anybody else with the same problems could do with some advice on how to deal with this condition. 😘😘

[Lure2]

Hallo Helen,

Are you also diagnosed with our illness, HS/APS? This is a site for that illness but perhaps you already got it and forgot to mentioned it now.

Your symptoms could be from our disorder as well. When were you diagnosed as fibromyalgia can be mixed up with other autoimmun illnesses? That is why it is so important to have a Specialist of autoimmun illnesses who knows the differences between them and can also treat them. Where do you live?

Best wishes from Kerstin in Stockholm

[Helen72 in reply to Lure2]

Yeah I have Antiphospholipid syndrome lupus a/c on Warfrin for it have been for the past 6yrs and aspirin before that .

[Lure2 in reply to Helen72]

Hi again,

Good!

Not good that you have our illness I did not mean that. I meant that it is good that you are anticoagulated. Now is the question if you have got the right Doctor (?) Sorry but what do you mean with "Lupus a/c". Do you mean Lupus Anticoagulant perhaps as that is one of the three antibodies they test for a diagnose of HS/APS and not the illness Lupus.

Do you have an English Specialist of autoimmun illnesses who has diagnosed you with HS/APS, Lupus (?) and now Fibromyalgia?

When someone talks about Fibromyalgia and is not yet without neurological symptoms on warfarin for APS, I get syspicious.

So I wonder if you are enough anticoagulated on Warfarin with the right therapeutic level?

We have noticed during the years on this site, that people can have Sjögrens syndroms or Thyroidea-issues and not Fibromyalgia. It is very difficult to diagnosed all these illnesses that often go hand in hand like cousins in a family and prof Graham Hughes often talks about the three big, namely ; HS/APS, Sjögrens and Thyroidea (hypothyroidosis or hyperthyroidosis). You have to find out and be careful you have the best Specialist. Bloodtests are needed.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

The most usual problem is that the HS/APS is not treated with an INR high enough to help with the symptoms. We usually need an INR of at least 3.5 - 4.0 to get rid of the symptoms and alse keep the INR steady at that level. Usually we need selftesting.

Kerstin

[Helen72 in reply to Lure2]

Yeah mine is usually 3.5 or just over , if it goes below that then I become unwell or if it goes over 4 I'm unwell

[lupus-support1 Administrator]

Fibromyalgia is a distinct and "real" (ie not "all in the mind!") Unfortunately, it can sometimes be used as a "catch all" for people who cannot be diagnosed! There is criteria specific to FM. I am not suggesting this diagnosis is incorrect!

There is quite a lot of information at LUpus Patients Understanding & Support (LUPUS): the LuPUS Message Board on Fibromyalgia - there is a forum just for Fibromyalgia:

lupus-support.org/LuPUSMB/i...

You will have to create an account (free) - if you have a problem, send me your details and I will sort it out for you.I know what it's like trying to do something when not feeling well roz [at][dot]lupus-support[dot][org][dot][uk]

With good wishes,

Ros

[Fra22-57]

Yes I have fibromyalgia too.only nerve pain meds given.I have RA too so hydroxychlorine and other RA meds abdominal steroids help some.You just want to shut your eyes at times as you feel so bad.Don't push yourself...be gentle

[Lure2 in reply to Fra22-57]

Hi Fra,

How did it go when you contacted the secretary to your Rheumatologist about that selftesting-machine. Hope you can get it soon.

Kerstin

[panda60]

I also have fibro. The Health Unlocked fibro site is very supportive and loads of helpful information.

[Lure2 in reply to panda60]

Hi Panda,

Do you also have Sjögrens or/and Hypothyreodosis?

I wonder if you have been to a Specialist of balance-issues? I know you said you perhaps would see that sort of Specialist. Have you found something interesting on the Fibro-site also for us on HS/APS-site perhaps?

Best wishes from Kerstin

[panda60 in reply to Lure2]

I have mild Sjogrens and Lupus but thyroid is ok. Fibro has been diagnosed by two different rheumatologists. I have had physio for balance and it is much better but varies from day to day. Fibro sufferers share many symptoms of APS, so it is worth having a look at the site if you are interested.

[panda60]

Glad you did. There are a lot of members and discuss all sorts of things, including crafting and others things that make us feel better. For me it is stitching and now knitting which I find very soothing.