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!:cool:

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

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

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. :D

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

The details of your heart and BP issues are not the typical presentation for autonomic dysfunction, so I don't think that is your problem. In most cases the heart rate includes tachycardia and even bradycardia...but both are quite pronounced, not an every now & then thing. And the BP isn't usually high. With autonomic problems, it drops (considerably--like over 20 mm Hg systolic) upon standing as the body is unable to compensate for changes in position.

The GI problems associated with autonomic dysfunction are most often motility related...delayed gastric emptying.

I really have to agree with MrsD on this...that your gallbladder issue may be t the root of your current problems (not everything, but at least the recent exasperation). When are you getting this surgery? I think (and hope) you will notice a big improvement once this surgery is behind you.

Oh I do hope you and Mrs D are right Enbloc! My gallbladder comes out two weeks tomorrow. I've done lots of research over the past few days and am really coming back to the idea that all my problems are rheumatic, billiary and allergic. So I'm agreeing with you both - but also fairly sure the gallbladder disease isn't causing my mouth to feel tight, gums sore with phantom pain or my feet and legs and knees and hands to be ablaze with pain tonight - all since moving back down to 10mg of Prednisone.

My rheumatologist emailed me to say he has had a helpful conversation with my neurologist now and will be speaking to his colleague, a Vasculitis expert, this week about my case. Hopefully this will lead to further treatment options for me - perhaps including Cellcept, Rituxan or IVIG even.

Thanks for reassuring me about the autonomic neuropathy - although I still think I probably do have a degree of this secondary to an unchecked inflammatory rheumatic disease process. But not as severely or progressively as people like yourself with primary inflammatory neuropathy have it perhaps.

Both of my parents died suddenly and prematurely from heart failure and both suffered from vascular dementia in the months leading up to their deaths so I do have some reason to be concerned by the arrhythmia and dizziness - especially as there is a significantly increased risk for those with RA of suffering cardiovascular diseases - probably because of uncontrolled inflammation. My dad had a huge silent heart attack at my age and had arrhythmia too. Hope this explains why I'm such a worrypot?

Got an appointment with the specialist dentist tomorrow and I'm hoping he will confirm or rule out TMJ as the cause of my mouth/ jaw/ nose issues and maybe make me a better mouth guard to prevent bruxism as the knock on effect of stress and widespread pain. Mat

ANYONE suffering from an autoimmune rheumatic disease process is at increased risk of CVD (cardiovascular disease). As explained to me by my cardiologist at Johns Hopkins, this is due to the way in which rheumatic inflammation attacks the epithelial cells and arterial walls...and it allows plaque to build easier then in a patient without rheumatic disease.

With your history, you really should have a full cardiac work-up as a part of preventative care to catch any issues BEFORE it becomes acute.

You may have some early signs of autonomic dysfunction, but even early symptoms would be BP drops when standing, tachy/brady heart rates, and GI dysmotility...they would just all be less severe in nature. It's not like autonomic dysfunction starts as high BP and then changes to something else later. It STARTS as drops in BP when you stand...this is the classic presentation. High BP would/could be a sign of something else, like CVD. Arrhythmia would/could be sign of CVD or other cardiac problem...not so much as autonomic. This is because autonomic nerves control very specific functions and when those nerves are affected, then very specific symptoms begins.

I do hope your gallbladder removal calms some of your discomfort and symptoms, BUT I doubt it explains everything. You obviously have neuropathy...likely inflammatory.

What 'phantom' pain do you have...what has been amputated or nerve severed? I have had phantom pain due to sural nerve biopsy (not skin biopsy) where they actually removed a sizable section of nerve and therefore everything below this point is dead...completely dead (yet pain can still occur as if it still there). Phantom pain occurs when you still get pain from an area that is not there (been amputated) or otherwise nerves are not intact. Have you had something surgically removed or otherwise damaged in regards to your nerves?

Also, in regards to the sweating, if this began before the Prednisone (in the SAME fashion) then I would say it's not related to the steroids. But I understood your post to indicate it either started or got much worse much more recently which coincided with the Prednisone. If you still plant to come off before your surgery, then you will know for sure.

Keep in mind that sweating problems are common with autonomic dysfunction. Didn't you have a skin biopsy? If so, they would have assessed the autonomic fibers. A QSART or Thermoregulatory Sweat test would confirm or rule out any autonomic dysfunction in regards to your sweating.

Okay well starting with BP - sometimes it is too high - other times recently it has been too low but no one has assessed whether this has been affected by rising from a lying or sitting position to standing.

I often get more light headed when I rise than at other times now and usually have to rise slowly and carefully and then almost manually change direction if I need to. I think this is vestibular (eyes)rather than BP related and interestingly it does improve on the higher doses of Prednsilone. My spatial judgement is more affected than my sense of balance but I've had several nasty falls this year. However I think the changes in rhythms relate to factors such as malnutrition, drugs (Amitriptyline, Prednisolone and conditions such as pneumonia the acute pancreatitis the Azathioprine brought on). Basically it's been a bit of a year for me health wise! I'm normally a healthy person and look after myself well.

I did wear a week long halter monitor this time a year ago which picked up the arrhythmia - and eventually Amitriptyline got the blame. But since the pneumonia in March I've had it back and wake with a feeling of having to catch extra breaths because I have forgotten to breathe. I have reported this to pre op nurse and has my heart checked in hospital twice by ECG and both showed arrhythmia again but this is all. However this wasn't done when I was sleeping or had risen either. I'm resolved to think I'm worrying about nothing once more. Just my family history making me anxious. I guess the heart monitor during surgery will be the ultimate cardiac work out

The sweating is a longstanding issue because for about a year I stopped sweating entirely - even rigorous exercise couldn't produce a drop so I had to be careful not to overheat and keep my fluid levels up. Then since the pneumonia it has gone the other way and I have these random sweats, but an more usually freezing cold with white toes and have to wear gloves. This was thought to be Raynauds but could just be that my hypthyroidisn isn't properly medicated. Doctors say Raynauds but I'm not so sure as don't get the blue or white fingers - just toes. I tried nifedipine for six months and it helped but my BP would dip dramatically causing faints and my legs became terribly swollen with EM red feet and knees finally causing a follicular rash. Shame about the latter as it was quite a good drug on several fronts for me I think. It's all very confusing but I think the answer lies in rheumatology and inflammation as you say as this at least shows in my blood.

The face stuff - my GP and the maxillofacial surgeon ruled out the GCA that hospital doctor suspected. I'm ANCA negative so Wegners ruled out although I did have an extended spell of crusting and nose bleeds when everything was veer dry prior to the pneumonia. Now I'm left with tightness around my gums so my teeth feel overcrowded and my gums feel very sore and swollen but they aren't. Hence why I use the word phantom - because there is nothing actually wrong with my teeth and gums but the feeling of tightness is so real.

This sensation of mechanical tightness goes up into my nose and even slightly into my left eye abd is marinally worse in left side. It is more severe gum soreness than pain and has been explained at trigeminal neuralgia by my doctors because it follows the trigeminal nerve exactly. My lips tingle unpleasantly all the time now and this has gone on for about six months I would say.

However I did some reading and numbness and tingle would be unusual symptoms of tmj. More likely to be an underlying disease my research showed. I don't get the intense shooting pain in my jaw that is usual or the claudication after eating. Just ache and soreness and tightness around my teeth inproves on higher dose of Pred - so I believe its inflammation of the nerves around my teeth and lips.

Have asked about this on the TMJ forum here but no response. Hoping the very experienced special interest dentist will shed more light lighter today because this symptom gets me down more than anything else. They tell me it is the peripheral neurooathic pain causing me to clench at night (I use a special mouth guard) and this bruxism should be alleviated by effective disease control ie get RA/ neurooathic pain sorted and bruxism will stop. Hmmmm jury is out in this suggestion for me as insomnia means I'm quite aware of what my jaw is doing and I rarely seen to clench :rolleyes:

Thanks for letting me waffle on here in attempt to iron out my thoughts.

Maybe just maybe
 

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