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

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

As for BP, there are some very simple ways to check (yourself) to see if you have any autonomic type dysfunction. The effect on BP is not just a high or low BP, it is the ability of the BP to adjust accordingly for postural changes. So, symptoms would be dizzy/lightheaded when you stand up from a seated position, or after standing still for a few minutes. The best way to check, is to use a BP machine and take your BP while laying down, then sit up (3-5 minutes later) and take it again, then stand and take it again. If the systolic (first number) drops more than 20 points and you get any symptoms, then you probably have some sort of autonomic involvement. You can check this at any time...like if you start to have your symptoms, then immediate go start this process of BP checks to see if your symptoms might be related to BP. Doctors actually use this same technique in the office to determine if you are having any orthostatic hypotension. Your home BP machine will also give an accurate heart rate and can be used to check this whenever you are having symptoms.

The autonomic process on the heart rate does not simply change the rhythm. It too effects the rate during postural changes. POTS (postural orthostatic tachycardia syndrome) is just as the name describes, a high heart rate upon standing or changing your position. This also happens when the BP drops upon standing (as the heart tries to compensate for low BP by trying to beat faster to increase blood flow).

There is also an element of bradycardia (low heart rate) with autonomic dysfunction. You mentioned having a low heart rate at times...how low? Where they able to document this low rate on an EKG? Did they tell you what the arrhythmia was (name)?

I really wonder if your face symptoms might be due to some SVID (small vessel ischemic disease). I have this as well and have had many times of unusual numbness/tingling in the face to include nose and around eye. This is why I asked on another thread (I think I did) whether you had an MRI of the brain yet? You may have answered, but I don't remember. A CT scan won't pick up those small vessels...has to be an MRI.

I have horrible TMJ but no real pain (except rare times). People in the next room can hear my jaw pop when I eat...LOL It's really that bad. But NO dentist or doctor has ever said my face tingling was from TMJ.

[QUOTE=en bloc;1150160]As for BP, there are some very simple ways to check (yourself) to see if you have any autonomic type dysfunction. The effect on BP is not just a high or low BP, it is the ability of the BP to adjust accordingly for postural changes. So, symptoms would be dizzy/lightheaded when you stand up from a seated position, or after standing still for a few minutes. The best way to check, is to use a BP machine and take your BP while laying down, then sit up (3-5 minutes later) and take it again, then stand and take it again. If the systolic (first number) drops more than 20 points and you get any symptoms, then you probably have some sort of autonomic involvement. You can check this at any time...like if you start to have your symptoms, then immediate go start this process of BP checks to see if your symptoms might be related to BP. Doctors actually use this same technique in the office to determine if you are having any orthostatic hypotension. Your home BP machine will also give an accurate heart rate and can be used to check this whenever you are having symptoms.

The autonomic process on the heart rate does not simply change the rhythm. It too effects the rate during postural changes. POTS (postural orthostatic tachycardia syndrome) is just as the name describes, a high heart rate upon standing or changing your position. This also happens when the BP drops upon standing (as the heart tries to compensate for low BP by trying to beat faster to increase blood flow).

There is also an element of bradycardia (low heart rate) with autonomic dysfunction. You mentioned having a low heart rate at times...how low? Where they able to document this low rate on an EKG? Did they tell you what the arrhythmia was (name)?

I really wonder if your face symptoms might be due to some SVID (small vessel ischemic disease). I have this as well and have had many times of unusual numbness/tingling in the face to include nose and around eye. This is why I asked on another thread (I think I did) whether you had an MRI of the brain yet? You may have answered, but I don't remember. A CT scan won't pick up those small vessels...has to be an MRI.

I have horrible TMJ but no real pain (except rare times). People in the next room can hear my jaw pop when I eat...LOL It's really that bad. But NO dentist or doctor has ever said my face tingling was from TMJ.[/QUOTE

Thanks for this Enbloc - very helpful as usual. Yes I had an MRI of my brain in January and all it revealed small vessel disease which matches my age and stage. No lesions.

The chest heaviness and feeling of weight is worse when I'm sitting or lying down on my back but propped up (as I am right now - to the point where I have to move about to get enough breath). I had assumed this was part of my GORD - which is worse when I'm on NSAIDs or steroids despite Ranitidine. But I'm not asthmatic or coughing with it at all nor very overweight. The chest weighted feeling when I'm rested is hard to cope with - like a huge heavy wave passing slowly over me over and over. It puts me in a very still, fugue like state so I can barely move or speak or do much at all and the pain in my peripheries is immense with it. It has greatly improved since starting steroids though but is returning at the lower dosage. I had assumed this was costochondritis because my ribs are always tender to the touch.

I have a reliable BP machine so will use to check postural changes as you suggest. No one has tried this on me yet. I don't know what type of arrhythmia I have but it can't have been of much concern because the cardiology nurse and GP haven't referred me for further tests. However my GP refused to let me try the Cox 2 family of NSAIDs because he said I had higher cardiovascular risk than the normal person because I have RA and because of my family history and high ESR.

I will discuss autonomic neuropathy with my GP on Friday and see what she thinks.

The special interest dentist (NHS) confirmed from nerve tests on my face this morning that I appear to have small fiber neuropathy here too now. I have posted about this appointment above. Presumably it is progressive because it only started in November and has bascically gathered momentum as my legs and then arms did a over year ago? He called it "Parasthesia affecting the small nerve fibers"

My jaw doesn't click at all although he agreed my mouth is tight and doesn't open fully. I think my other concern is that this could be Scleroderma but I didn't ask him about this as I don't want these medics to get the idea that I'm finding diseases and matching the symptoms accordingly. Is this what you mean by ischemic disease I wonder?

I just wanted to update anyone interested on what the oral surgery dentist said today re phantom mouth pain. He is soon to retire and has been training with my neurologist working on overlap conditions. He examined me hard, already havng attended my appointment with the maxillofacial surgeon a few weeks ago - and ran nerve conduction tests on my face as well as examining my mouth and jaw thoroughly.

He agreed that my TMJ is quite mild and that it is not causing the numbness and tingle in my face - which is still a mystery. He said that the fact that I have numbness in some parts of the trimenangial nerve and am sensitive in other parts means it is in my small fibers rather than in the main TM nerve -which would be far more painful - or else the numbness would be continuous all the way along the nerve - which it isn't.

The patients he has who have similar symptoms to mine have MS or occasionlly diabetes - which has been excluded from MRI of brain and blood glucose tests.

He agrees that it is part of the widespread parasthesia not TMJ from bruxism/ stress or arthritis. The fact that it is progressing now to my face means that although it is idiopathic in theory - it should be seen as an inflammatory issue and some kind of ganglion swelling could be at work behind my jaw and throat at the back of my head causing lesions to the nerve there. So he feels this is definitely something that the neurologist needs to investigate and rule out although probably RA related. The dizziness is also outside his area but he feels it may well be related to the numbness and tingle and that I need the area at the back of my head checking out by MRI. He will write to him and explain that this is what he thinks.

I have to say this is almost exactly what my podiatrist says about my feet and the morton's neuromas plus Raynaud's and also what the physiotherapist says about my hands and my jaw too.

He confirmed that is no problem with my mouth or jaw beyond some 2nd class oblation and muscle swelling - similar in intensity and severity to a twisted ankle no more. He says these two sources of pain/ discomfort are unrelated and bruxism wouldn't account for the numbness or tingle at all. He gave me simple physio exercises to do to improve the ache and muscle tenderness and advised me to continue using the guard - but confirmed that bruxism is not a big issue for me.

Also, he told me to avoid anti-convulscant and anti-depressant drugs because they would at best mask my symptoms, which would be unsafe if they are progressive and inflammatory as he believes they are, and give me unwanted side effects too.

The pain in my jaw/ mouth doesn't warrant drugs like Carbamazapine or Gaberpentine and wouldn't help with numbness. Masking symptoms is a bad idea in my case as the root cause needs to be found if possible. If not he recommended acupuncture, relaxation exercises and psychotherapy (which I already have!) to come to terms with the fact that these symptoms are almost certainly here to stay. Didn't like the last bit at all of course but I'm a realist so took it on the chin (numb-ish!).

If I can get the connective tissue disease (could be vasculitis he agreed) well controlled than the pain would probably go, as it does with higher dose steroids, but probably the existing loss of sensation would not now be restored to my face. So small fiber neuropathy confirmed as affecting my face, cheek, nose and around my left eye rather than TMJ.

Mat

Hi Mat52 and others

Just to clarify some of the terms: TMJ (Temporamandibular Joint) - also sometimes known as TMD (Temporamandibular Dysfunction) is a physical condition affecting the hinge joint of the jaw (mandibular) and it would not usually cause tingling and numbness. There are numerous causes from bruxism to orthodontic. TN (Trigeminal Neuralgia) is a neurological/neuropathic condition that affects the Trigeminal Nerve symptoms of which may include numbness and tingling as well as a variety of pain symptoms. It is possible to have both conditions at the same time.

Mat 52 - It sounds as though your physicians are consulting each other at last (and just in time before your op) I hope this leads to some progress and better outcomes for you.
All the best for the big day.