Sjogren's/Neuropathy Symptoms - Burning

[sm2006]

Dealing with severe Neuropathy brought on by Sjogren's.

Has anyone experienced a burning symptom from the bottom of the spine up the back (and along the arms and head) and has anyone found any treatments that have provided any relief?

Thank you so much...

[Joe S.]

Welcome to the forum, sm2006.

I do not have an answer for you. Your post reminded me of a recent Royal Pains episode. Do you have a fancy car with a seat heater that warms your but and also warms you neck?

[A66eyroad]

Ha, Joe! You crack me up!   

I have lots of back pain --- my back will go "out" for about 12 or 14 days at a time, usually every couple of months. I walk around like Groucho or Ed Sullivan for a week or so. There doesn't seem to be any rhyme or reason to the pain; sometimes I just wake up with it. 

It usually stays right in my lower-center back, sometimes radiates down my leg like sciatica.

I take Aleve and use a heading pad, and sometimes my doc will give me a muscle relaxer.

Does this sound familiar?

[Joe S.]

If that sounds familiar, Reflexology can help. There are two crease lines on your wrist under your thumb. A medium intense massage pressure applied their will trigger an endorphin release to your low back. Endorphins are your bodies own pain killer and 1000 times more potent than morphine. Neck and shoulders can be released by massaging the fleshy ridge between your thumb and index finger. Those two reflex points on each hand will help you feel better.

[Luna]

Sounds very familiar to me A66eyroad. You definatly described my problem. Joe, thanks for that tip. I will see if I can find someone to do that for me.
SM206. I do get a burning or warm sensation in my back or neck or even between my shoulders, but it is only for a few seconds. Nothing that last long. I just have the same problems as A66eyroad discribed.

Luna

[A66eyroad]

My rheumy has told me that I have "mixed connective tissue disorder. " This is a catch-all diagnosis to me, but it helps explain why I often have back problems and what feels like carpal tunnel syndrome, and why my ankles sometimes feel like they go out of joint.

(To me this is something they tell you that you have when they can't think of what else to call it. Like "Cat Scratch Fever" -- not the Ted Nugent version -- which is what a doctor told me I had before I was dx'ed with Sjogren's because my salivary glands would swell up and I had earaches all the time. Oh, and I had a cat.    Could be that this is why they call it "practicing" medicine.         )

[Linda196]

A66eyroad, if it makes you feel any less "catch-all" diagnosed, MCTD is an actual viable diagnosis as first described in 1972, and is classically considered as an "overlap" of three diseases: systemic lupus erythematosus, scleroderma, and polymyositis, but without sufficient diagnostic criteria to diagnose any one of the three on it's own. You may be thinking of "undifferentiated connective tissue disease", which is used sometimes to describe a mixture of symptoms, obviously autoimmune in origin, that haven't yet manifested to a specific disease.

Cat scratch fever is also a specific disease, caused by infection with Bartonella henselae (B. henselae) and/or Bartonella clarridgeiae, which are rod-shaped Gram-negative bacteria. An accurate diagnosis can't really be made without cultures showing those specific bacteria. The true medical names for this are Lymphadenitis-Regional Non-bacterial  (after the bacteria have died off and the symptoms are the result of antibodies) and Lymphoreticulosis-Benign Inoculation (during acute manifestation).

[A66eyroad]

Thank you, Linda, you are exactly right --- I mis-typed! 

Yes, I understand these are real diseases, and I certainly don't mean to make light of them. The last thing I want to do -- on this board or anywhere -- is to hurt someone's feelings or make someone feel that I don't believe what they're going through. I've had enough of that in my own life! What I actually meant to say is that doctors seem to throw those dx's around when they don't know what else to call what's going on with me.

I guess these dx's (stress, cat scratch fever, MCTD) just fuzz me up.   

I've gotten the "diagnosis" of cat scratch fever from two different doctors. I wanted to say to my doctor, what would I have if my lymph glands were all swollen and I didn't have a cat? See, I wasn't really tested for it; I felt like I was "diagnosed" to shut me up so the doc could go on to the next room.

When I first started getting sick back in the early '80s my 22-year-old brother was killed in a motorcycle accident, and the doctors chalked up everything that was going wrong with me to stress. Well, yes, I was stressed, of course. But I had huge sores inside my mouth and nose, and headaches every day, and I couldn't keep anything down -- and I'd been having these symptoms for at least a year prior to his death. They just wouldn't look past the obvious.

I didn't mean to imply that these diseases didn't exist. Just that I think -- in my case -- they were tossed at me to shut me up and make me go away. And that makes me kinda sad.