Being tortured by Peripheral Neuropathy

Boomer13

(Copied from other thread, as you requested Mat, xxanna, sorry to take so long...)

Hi again Mat;

I was just re-reading your thread and even though I am perhaps not at my most rational at the moment, I think Marie is right saying autoimmune diagnoses are first and foremost made on the clinical picture, not just RF+/-. With a seronegative form of RA being a recognised entity, it wouldn't surprise me if becoming RF- is possible and merely means that it has become inactive (a potential positive thing, yay!) not that you no longer have it, or never did. There is also the issue of labs making mistakes occasionally; your next bloods may show you as RF+ again.

I always thought bloods results were objective and meaningful until I have seen my own values here, there and everywhere and no one very concerned about it unless the values become consistently abnormal, or out of range by a huge amount. Weird. Too bad our illnesses don't come with a medical degree, I feel I need one to figure it all out, and, we haven't even talked neurology yet. EEks, that's a complex subject!

While I appreciate my own doctors letting me in on their thinking and the complex physiology behind autoimmunity, sometimes it is more helpful emotionally to be told you have X and the treatment is Y. My thoughts reading your comments about your doctor visit was that he seems to respect your intelligence and ability to digest the implications of having a disease that sits on a spectrum of autoimmune phenomena that are dynamic, overlap rather than stay discreet and do not conform to many rules across individuals. However, being able to appreciate this doesn't mean there's no relief in being able to call your illness X and explain it to others as X. I have never become used to the vague nature of mine, even if that is the reality physiologically. Being able to call it PsA finally was a huge relief and has lessened my anxiety around being ill (well, until recently as you know).

So, what I'm trying to say in long-winded fashion, is that you likely still do have RA regardless of your new symptoms and -RF bloods, because of the clinical picture your doc sees more than the blood results. You are not a fraud. It's the complex nature of these diseases, our genetics, the state of our physiology, drugs we are taking and other factors that determine what our bloods are going to look like and how symptoms/signs manifest themselves. I know you know all this, I just thought the reassurance might be helpful at the moment

If only having one of these bloody diseases made us less likely to have another that would be terrific, but unfortunately it makes it more likely that we can have overlaps; multiple autoimmune problems. Really wish that wasn't true. I hope something is figured out for you soon, and the docs find a treatment that works. Also, hoping I'm being helpful here and not merely a PIA!

I know we will stay in touch so in the meantime, take care of yourself and know I'm thinking of you, xxx(())
anna

Mat48

Thanks Anna - I seem to be one step ahead of you in my relentless questioning - have just posted a new question about a flare up. I found this comment really useful so wanted you to post it on here too in case it helps others who may see the heading about peripheral neuropathy also.
Mat xx

Boomer13

You're welcome Mat. I'm surprised it was at all coherent and readable, given my state

Truly, I had to read your request to copy and paste it several times before I got it; not in such good shape mentally and otherwise at the moment

xxanna

Mat48

It was terribly articulate - never would have guessed how lousy you are feeling but for the fact that I'm in and out of a similar place myself just now. I left my bag of music at choir practice last night and someone finally found it under the toilet where I have no recollection whatsoever of having been?

But I've just had a long talk on the phone to a woman who has had RA for 18 years on the phone and she very patiently explained that everything I'm going through presently suggests to her that this is the new pattern of my RA flares and I should just acknowledge it and go to bed/ rest up for as long as it takes to feel better. I think we forgot how complex our nervous systems are and how systemic many of these conditions are too. And wading through the unknown is very frightening and overwhelming. Please go very easy on yourself as I've just been told to do. She told me I had a large touch of "imposter syndrome" about having RA which I can see is really daft - but absolutely true :roll:

I do so hope you feel better soon.
Mat x

frogmorton

Hi Mat

I just read this from beginning to end and have listened to all comments and replies.

That lady? She knows her stuff Mat.

I would listen to her and try if you can to 'go with it'

Love and huge ((()))

Toni xxx

Boomer13

Mat;

My turn find your post very articulate and helpful. That sounds like a very helpful conversation with your RA friend. Thank you for sharing it.

You're so right about it being terrifying to be faced with new or revisit unexplained symptoms :shock:

xxanna

Mat48

She was brilliant you know. I don't have a rheumy team as such - just a GP and a distant consultant. So no one has ever spoken to me like that about RA. I never realised how exhausted I make myself by being in denial and by thinking I'm a fraud all the time. I feel like a huge weight has been lifted off me and I can just rest and tell people I'm not well at present and can't do stuff that they expect of me always.

Also I think I will see the GP next week and tell him that I'm not as rational or as pain free as I tend to convey. If we allow denial to prevail then even our doctors start believing us, so this has to stop for me. I feel really lucky to have a diagnosis of RA now - rheumies don't diagnose this lightly all this limbo and trying to relate to people who have entirely different (if equally serious) conditions is doing me no good at all and must stop :roll:

I learned tonight that swollen joints aren't always how this disease works - it can become stealthy and insidious and denying its existence is letting it in to do its worst. Even if my numb, icy cold legs aren't due to RA, they are horrible and part of not being well so I'm going to stop fighting this neuropathy and wriggling and writhing all night to shake off the burning ants and exercising fiercely everyday - until I'm well again. Feel free to remind me of all this if I start to err again! X