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

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.

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

[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?

The fear of my body slowly closing down filled me for many nights. I don't know how I got passed it but eventually I did. I guess I realized that I kept making it through during the times that I thought I might not.
No real advice but you are not alone. I can tell you that tramadol makes my autonomic stuff much worse though.

Good luck with your gallbladder surgery. I really hope it helps.

The SFN in the face seems logical IF you have SFN elsewhere. Did your skin biopsy show SFN in your feet (I'm sorry, I have memory problems and can't recall previous posted info)? The NCS cannot detect SFN (I'm sure you've read all the posts on this from Glenn and others...but skin biopsy is the only way to look at small unmyelinated fibers), so he must be drawing this conclusion from the location to TM nerve and giving it his best thought as to the cause. What does your neurologist have to say? I would be nice if the oral surgeon spoke with the neuro

Honestly, I really think the SVID is playing a role too. Of course this becomes more common as we age but it is still NOT a normal condition...no matter what age. It is also a sign of possible small vessel disease elsewhere, like coronary vessels. And with your family history, I would think flags should be going up and this given more consideration (not just for the cause of your face issues, but also whether CVD may be a factor). You really should be given a full cardiac work-up with your history and other symptoms you mentioned.

Your face may be a combination of problems...like TN involvement and your small vessels. But with either (or both), it will likely come down to getting used to it...which you will over time. I thought I would never get used to mine but over the years I have done so. Our bodies have a way of learning to compensate and get accustomed to new feels and such. It's when things are new that it is the hardest to cope.

It will be interesting to see what improves after your surgery...hopefully, quite a bit!! You sure have your plate full right now.

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.