Thank-you for your thoughts and for explaining your own personal coping strategies. I think that acceptance of the kind you suggest is productive to an extent - but I am absolutely not ready to accept this degree of pain and uncertainty at the age of 52 - when I have masses I still want to achieve and a reasonably good quality of life to try and get back to.

I am not a religious person but I do believe in positivity and creativity as my signature below hopefully suggests. However I get really fed up with being told to accept this stuff as a product of my body degenerating. No one else I know (and I have many older friends, some of whom drink a lot and smoke and eat bad foods) spends their waking life feeling as if they are up to the top of their thighs in cold water with little crabs crawling up their legs while standing on burning hot coals. Or if they do and are more stoical than I am then so be it. But I believe that medical science needs people who don't accept this state of affairs too readily.

I live an extremely healthy life, practice yoga daily and eat and drink like a paragon of virtue for all the good it does me so I am not ready to take up the Budhist philosophy you suggest and nor do I think that I should have to! So I am really looking for answers rather than looking for emotional support or suggestions for adopting philospophical or religious approaches - because I want to understand and overcome at least some of this lousy autoimmune stuff if possible. If I felt that this predicament was all just about ageing, as I do with my osteoarthritis, then I would accept it and do my best. But this stuff is the stuff of bad dreams and I don't think it is simply to do with the ageing process. Accepting this would be to accept a life sentence and that would be extremely depressing. Ageing doesn't have to be depressing.

Have you at any point looked into or considered HRT just to see if it might help?

Mat... you know I think you will feel so much better once you get that gall bladder out.

Gall bladder disease includes damage to the pancreas...so you may have some issues there as well.

An inflamed and infected gall bladder will upset your whole system. Your body will be sending resources best used in other places, just to quell the gall bladder down. Once it is out, you should start to heal and feel much better. So don't over worry yet about everything.

Concentrate on resting, eating good foods providing protein and vitamins/minerals so you can heal up quickly. Vit C and zinc will be needed for repair of the surgery, as well as good protein amounts. You will have to watch your fat intake after the operation, as some people can't handle too much fat at a sitting after the removal. Even now watch your fat intake, and only use good fats with nutritional value. Avoid fried foods, ice cream, things like that.

I really do hope you are right Mrs D. I admit I'm a bit scared of the general anaesthetic because of the slowing down of my heart and arrhythmia these days. But the anaesthetist I met was very reassuring and told me that I would be closely monitored while in theatre and afterwards. I am a terrible worrier and have postponed this operation twice in the last 15 years because I feared having a general. What a wimp I am!

The Sonographer did an abdominal ultrasound twice over a month during my two hospital admissions and found my gallbadder to be uninfected and quite happy with it's large inhabitants. But seeing as my liver enzymes have been high recently and I do have GORD I guess it could quite easily be my gallbladder playing up in smaller but insidious ways as you suggest. I only have two weeks to go now and am really hoping that its removal dramatically improves my quality of life as you suggest.

As I think I've said here before I have an almost paleo diet and never eat saturated fats or refined sugars and hardly touch wheat/ gluten or dairy. The most naughty thing I consume is a block of dark organic chocolate a day at the moment and about half a glass of wine a week. Some scientists now suggest that these are actually beneficial in moderation. So I should find it very easy to cope with life once it's out as no dietary changes needed.

Thanks for your support - fingers crossed this operation proves life changing in a good way! X

That is a good point Janeig - I have asked several times but my doctors refuse to prescribe it because they say that there are risks associated with HRT and that my problems aren't directly related to hormones. I was through my menopause when I was 48 - no real symptoms apart from periods stopping and a very high FSH reading that told us that I'd come out the other side. Same goes for switching to natural dessicated thyroxine rather than the synthetic version as I've asked about. I don't want to self medicate but I often wonder if the fillers in the Levothyroxine mightn't be a contributor as I've been taking it for about 14 years now. Same also goes for B12 injections which they won't prescribe because my serum B12 is under 500 (last reading over a year ago was 380) - but they say it's still well within normal range so I just take sublignual B12 just in case but it makes no difference to my neuro symptoms.

If any drug has brought this on in the form of toxic poisoning I think it is probably Hydroxichloraquine or possibly Methotrexate - or perhaps the combination of both. I did read an article in a reputable medical journal (BMJ I think) that said Hydroxichloraquine can occasionally cause severe neuropathic symptoms that can even lead to irreparable paralysis and I took it for 18 months.

Eventually I realised it was responsible for anaphylaxis that was making my face very painful and swollen and I stopped but it could have been the culprit because the dates fit. I don't think the methotrexate caused it and I have to say that these hot flushes started in my wrists and up my arms when I was still perimenopausal a long time ago - before the RA started attacking my joints. They wereren't unpleasant - just weird - but this points to a hormonal element I suppose.

So I have to trust that my doctors are right about HRT etc but always mindful that they might not be!

This article goes back to the 1970s so is probably very out of date but it makes interesting reading re autonomic neuropathy and RA. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1595852/

Dear fellow suffer
Most all you describe hands feet shins the constant
heartbeat of their own

My body riddled with pain all over

We are now going to try ANTISEIZURE Meds
For my PN as I cannot deal with the pain

And when you describe the mummified feeling
It come with excruciating pain

Look up doctor Kevin Tracey
At Feinstein Institute for Medical Research
In Manhasset, N.Y.
A neurosurgeon has come up
with a device that is placed on the vagus nerve
I want it but it won't be available for six mor years
I beleive in the study
It addresses rebooting our system
Inflammation being the culprit to many
of our ailments
It was a *itch just typing this
But that's a everyday gig for my body
Oh when you wrote
we are not in this because we are aging
My onset began after cervical ACDF and repeat PCDF
FAILED FAILED FAILED TERRIBLY
I have some hope when I watched this on the news
And just cried
For the total package of pain this body feels
I don't want to live anymore
I hear you
I feel the pains you describe
It shouldn't be depressing growing older
It peeked at fifty I am fifty four and it is getting
worse
Me

Thanks Eva - I'm sorry you suffer so much from pain. I haven't been as troubled by the pain as you are because I've had physical pain all my life in one form or another. I am more got down by the fear that something awful might be happening and is progressing and going to affect my nervous system and organs that affects me most. So I try to keep calm and rely on my intellect rather than to let emotions get the better of me and this helps me a lot.

I do know about the Vagus nerve project which they are trialling in the Netherlands and also in the UK for Lupus sufferers I believe. It has already got a good track record with epilepsy sufferers and my GP and I have discussed it and are both excited about it's potential as a non drug, non invasive method of treating many diseases including RA. But meanwhile we each have to find ways to live with this stuff and my way is by finding out what is causing it rather than treating the symptoms. Tramadol and the occasional codeine (very constipating) get me by just about with the pain.

Good luck to you with the anti-seizure drugs. I've tried a few now but they didn't help me and made me ill.

Mat

That is a good point Janeig - I have asked several times but my doctors refuse because they say that there are risks associated with HRT and that my problems aren't directly related to hormones. I was through my menopause when I was 48 - no real symptoms apart from periods stopping and a very high FSH reading that told us that I'd come out the otherside. Same goes for switching to natural dessicated thyroxine rather than the synthetic version as I've asked about. I don't want to self medicate but I often wonder if the fillers in the Levothyroxine mightn't be a contributor as I've been taking it for about 14 years now. Same also goes for B12 injections because my serum B12 is under 500 - but they say it's still well within normal range so I just take sublignual B12 and it makes no difference to my neuro symptoms.

If any drug has brought this on in the form of toxic poisoning I think it is probably Hydroxichloraquine or possibly Methotrexate - or perhaps the combination of both. I did read an article in a reputable medical journal (BMJ I think) that said Hydroxichloraquine can occasionally cause severe neuropathic symptoms that can even lead to irreparable paralysis and I took it for 18 months.

Eventually I realised it was responsible for anaphylaxis that was making my face very painful and swollen and I stopped but it could have been the culprit because the dates fit. I don't think the methotrexate caused it and I have to say that these hot flushes started in my wrists and up my arms when I was still perimenopausal a long time ago - before the RA started attacking my joints. They wereren't unpleasant - just weird - but this points to a hormonal element I suppose.

But as Enbloc confirms - if it were all due to hormones or toxicity then it wouldn't explain why the pain goes when I'm on a higher dose of steroids nor why my ESR fluctuates according to the level of nerve pain I'm experiencing.

So I have to trust that my doctors are right about HRT etc but always mindful that they might not be!

I'm becoming highly skeptical of the knowledge of doctors.

I strongly suspect that there's a hormonal component to my problems, maybe not the direct cause, but contributing somehow. So many bizarre things are happening, and the more I learn about the effects of out-of-whack hormones, the more I understand how far-reaching they can be.

Anyway, just a thought from one woman desperately seeking a cause to another.

Taken entirely in the spirit it was intended Janieg - we "idiopathic" people need to stick together. I do basically agree about the hormonal component. Too many coincidences otherwise and unlike my doctors I don't believe in coincidences much! X