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. 😘😘

15 Replies

  • 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

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

  • Hi again,


    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

  • 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.


  • 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

  • We talk a lot on here about the BIG 3! These are APS, Sjogrens and Thyroid disease. Quite often the Fibro symptoms can be the early signs of Sjogrens or autoimmune thyroid.

    Do you get dry eyes and mouth and other areas of the body? If so you really need to get schirmer test which is when they put litmus paper under your eye lid for AT LEAST 5 Minutes. If they do it for less you can get a false negative and this is a quick and easy way of diagnosing Sjogrens. For Thyroid you need a proper panel of thyroid tests. The GP is unable to do them so you would need to have them done privately. Blue Horizon or Medichecks do them and they are easy to have done.

    If you don't rule out either of these conditions as a coexisting condition to your Fibro or as a misdiagnosis, you are not going to get complete relief from your symptoms.

    Im not saying you DONT have Fibro but you need to check if you also have these other conditions too because there is no real test for Fibro that definitively diagnoses it.

  • 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:

    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,


  • 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 gentle

  • Hi Fra,

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


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

  • 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

  • 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.

  • I actually set that up a few years ago! Glad its doing so well.

  • 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.

  • I don't know if you saw it but there was a lady who runs a company of big knitting wool who went on dragons den. She didn't get any money although they liked her company. I really liked it and as you say it was actually created for the very reason you find it helpful. Because the wool is so big and the needles huge, you can make things really really quickly. I really fancy giving it a go....if only I had the time.......

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