Fibromyalgia Action UK
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PVNS is Pants! and it's Not Fibro but Autoimmune Disease??

Hi peeps not been on for a bit as been doing wedding stuff, I saw my consultant (armed with a list of questions as long as my arm) on Monday to be told that the PVNS I have in my left leg is infact in both my knees and as it's systemic it is more than likely in my other joints too. He also went on to say that with my other list of inflammatory conditions I most like don't have Fibromyalgia but some kind of autoimmune disease as this is linked to PVNS. I've now been referred to a Rheumatologist to have further tests and treatment. To say this has all been a bit of a shock is a bit of an understatement and I'm now anxiously waiting to see this Rheumatologist to see what happens next. Anybody else had any dealings with this rare disease I have??

3 Replies

Hi Trixybell82

I am so sorry to read that you are suffering in this way and I genuinely hope that you can find some resolution and relief to this issue.

I have pasted below the link to the NHS, Great Ormaond Street Hospital website relating to this for you, and I sincerely hope that it is of use to you?

I can't begin to imagine what this illness is like but I sincerely want to wish you all the best.

All my hopes and dreams for you

Ken x


Lots of hugs and I hope that all will be well sue xxx


I have autoimmune disorder, which I understand to mean the immune system treats the body as 'the enemy', attacking as foreign invasion infection etc. Over my lifetime (52 years old) I develops list of conditions known to be under this category. Many people may have a couple of these conditions eg. RA, does not mean they have this condition. I often have raised levels white blood cells, immune system working overtime!

It may well be you have this condition, does not rule out fibro. I have been told I have both.

Can't concentrate, hope I've made sense. Wish you well.


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