Lying here in the early hours (Scotland) contemplating mortality

I don't really know where this thing will lead but it is scaring me a lot now. It isn't just the burning pain in my peripheries - which is less severe tonight than it will be again tomorrow night when I drop back down to 10mg of Prednisolone. It's the other autonomic stuff that scares me most. And none of this has yet been confirmed by any nerve conduction, MRI, blood or lumbar puncture or skin biopsy tests either.

Having not sweated appropriately ie after strenuous activity for over a year now I've suddenly started having these sweats which come from nowhere. They could be hormone related but I don't think so because I amthrough my menopause and out the other side having suffered no hot flashes or sweats at all during the change years.

I have this vestibular thing going on where my spatial awareness has changed so I feel I'm going to fall often and I'm always bumping into objects and people, struggle to walk straight ahead if the lighting changes and find going downhill very hard. I have lost my sense of smell entirely.

My face is always numb and tingly - especially around the left side and my lips. I get arrhythmia and feel icy cold in my feet and legs all though the days. I often feel I've wet myself when I really haven't. And most scary of all - I sometimes feel I'm going to fizzle out and stop breathing. This only happens when I'm resting or asleep.

I believe this is all part of my neuropathy that can't be pinned down. Is there anyway of diagnosing autonomic nervous system disorders - bearing in mind that I've had nerve conduction tests already and am in the NHS where resources are very stretched? Is this condition taken seriously by the medical profession or is it likely to be thought stress related? Can drugs help? I find it does significantly worsen on the lower dose of Prednisolone but I don't want to risk some sort of adrenal failure and my GP and neurologist and rheumatologist are all scratching their heads together about me now.

Maybe some good will come out of this for me but meanwhile what to do about the fear it is generating in me each night - the fear that my body is very slowly but surely closing down?

Well, my first thought is the sweating...it is likely the Prednisone. That is a side-effect and one that I have experienced myself with oral steroids. You have mentioned sensitivities to other medications, so you'll probably have to add this one to your list. You can confirm the steroids as the cause, by tapering off and see if the sweating stops...I'm betting it will.

It may be problematic for you if you have autonomic dysfunction. I have severe autonomic neuropathy and it's probably a contributing factor as for why I have the profound sweating when taking Prednisone.

As for the autonomic problems: The most common autonomic problems involve BP, heart rate, urination, sweating, GI motility, and even sexual dysfunction. You are not mentioning many of these...are they problems?

Anyway, the testing involved in an autonomic battery is geared toward the above common problems, so may not be very helpful unless you are in fact having problems in these areas. Typically, a 24 BP monitor, holter monitor and tilt table are the first tests to rule our any cardiac involvement with BP and heart rate. There is also a gastric empty study to determine is there is any GI motility issues. There is also urodynamic testing for difficulty initiating urination and emptying the bladder. In regards to sweating and general autonomic nerve testing, the QSART or thermoregulatory sweat test would be recommended.

Again, the testing I've listed are for the most common autonomic dysfunctions, which you don't mention as being problematic. So I'm not sure how helpful they will be. Autonomic testing is fairly specialized and not available in all hospitals.

Autonomic neuropathy IS taken seriously and YES, there are medications to treat various aspects of the dysfunction...but usually BP and heart rate problems. If you know what the underlining cause is, then it's best to treat that....but we all know how difficult that can be to determine the root cause of any of our neuropathy problems. If it is inflammatory based, then the steroids will help...but it's likely the steroids that is causing the increased sweating. So you are between a rock and a hard place.

All the symptoms you have listed affect me - sorry I should have said this - blame insomnia that is exacerbated by Prednisolone for sure. Sweating I posted about a while ago well before the steroids but I guess it could be worsened by the Pred certainly. The sexual dysfunction comes in the form of loss of sensation in my pelvic floor area although this is far from total but definitely an issue. I have GORD confirmed recently by endoscope. Heart is okay by ECG but confirmed ectopic beats/ arrhythmia. BP consistently high over recent months from two hospital admissions but apparently was on the low side before that. Have to dash for son's travelling but just wanted to respond and say thanks as usual for your help. Mat

Here's my symptom list for last rheumatology appointment in March - the order and severity have changed but all are still pertinent and at least this shows that I'm not finding a disease and matching the symptoms accordingly. Which can easily happen with multiple symptoms I think. The main changes have been that sweats are throughout the day and started before the Prednisolone but do worsen at higher doses. The facial numbness and tingling have worsened and the chest issues have gone but the feeling of fugue like fatigue and dramatic slowing down of breathing continues plus I notice now that I wake every few hours to pee and have a startled feeling of gasping for breath often.

List of main symptoms in order of severity – March 2015

• Jaw ache, nose and tooth neuralgia – trouble eating/ chewing/ muffled hearing

• Dizziness/ vertigo/ disorientation – leading to three bad falls since
Christmas

• Severe neuropathic pain in legs and arms – prickly wet skin sensation
reaching up into groin area. Bone pain (like toothache) in feet, ankles, shins, knees, hands and wrists and elbows. Lightening bolt pain in knuckles and a wrists and jaw and ears.

• Longstanding (2 years) loss of sense of taste and smell (100%)

• Chest tightness / crushing pressure and pain – breathlessness – annoying cough, chest wall tenderness. Night waking with jerks and breathlessness.

• Frequent nose bleeds and sores inside nostrils – dry, crusting within nose and neuralgia around sinuses.

• Loss of appetite and nausea - weight loss - intermittent intense upper abdominal discomfort/ pain - pain in bladder, womb and pelvic area.

• Dry eyes

• Increasingly widespread morning stiffness – sometimes lasts all day

• Poor dexterity and joint instability plus shooting pain and weakness in fingers, and wrists – stiffening of joints especially in middle fingers

• Issues with temperature regulation – toes often whiten and feel like ice blocks while other parts burn. Widespread chills. Difficulty getting warm or cooling down.

• Flu-like un-wellness/ slight fever and intense fatigue which worsens as the day progresses and after travel or activity

• Backache and locking in lumbar region and backside. Pelvic floor numbness

• Night sweats or else complete lack of sweating after exertion



.

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?

don't stop hanging on
hold my hand
i know what you feel
hold my hand
don't let go till you want
i hear you and wonder the same
many nights
continue going to the doctors
don't give up
as i loath having to go to the doctors
loath it
yet i must
i have much stress in my life
and it has been all my life
my life changed after my ACDF
DONE TWICE second posterior
E V E R Y T H I N G was down hill since then
then while recuperating from a B O T C H E D
J O B i get breast cancer
have had bot breast taken off
for my reconstruction was botched
and that's that
2010 is the breaking point
i know the unhappiness
i know the dark thoughts
i know the fear
i also know Jesus Christ
walked this earth
and given us free will
in your darkest times
is when you need to hold on
i am sure there are others who will hold your hand
don't give up
i know it's hard
but do it
love
me

I think we all share those fears at times at least. I do. The fact is however that from the moment of birth things are starting to break down. Very slowly so you won't see until you go down the road or something nasty happens. Then we realize that we are mortal, prone to pain and decay and we don't like the idea and it makes us anxious and worried.

Rather than evade these feelings however I've come to embrace them in the Buddhist fashion of surrender and acceptance. It's not as easy as that sounded but it can be done to some extent and when I did it cleared the way for me to focus more on this moment and what I can do for myself and less on what might happen tomorrow or next year.

I wish you unusual good luck in your quest.

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.