PVNS is Pants! and it's Not Fibro but... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,959 members67,101 posts

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

Trixybell82 profile image
3 Replies

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??

Written by
Trixybell82 profile image
Trixybell82
To view profiles and participate in discussions please or .
3 Replies
TheAuthor profile image
TheAuthor

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?

gosh.nhs.uk/medical-conditi...

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

tulips123 profile image
tulips123

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.

Not what you're looking for?

You may also like...

People think Fibro is not painful

Quick question. At work today someone asked why I was going part time. When I mentioned I have...

I am going to go out on a limb here....

.....and list all the rpoblems I have so we can see exactly what we are up against with the...
Ozzygirl64 profile image

Something new and not sure whether it is fibro related

I have never had what I am about to tell you happen to me before, so for me it is something new but...
Ozzygirl64 profile image

Doctors & fibromyalgia

Hi everyone, I'm new to this site but was looking for somewhere I could get some advice. I'm 41 &...

Pain consultant tells me at pain clinic FIBRO is not real... its a made up name.

I went to see my pain clinic who made me drive miles just to be told what settings to have my tens...
Chezbobs72 profile image

Moderation team

See all
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator
Lynda_FMA_UK profile image
Lynda_FMA_UKModerator
Sarah_fmauk profile image
Sarah_fmaukModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.