My feet??? is this neuropathy

[SjoGirl]

Mollie take your doc's and advice and that of others if you can and be patient. EMG is the way to test for neuropathy and I hate to say it, but it is painful. That said, my neuropathy came on slowly and then for some reason neither I nor docs, including a top-notch neurologist, understand accelerated. Gabapentin is a godsend. 

Here's hoping P

[mollie carey]

Can I ask how yours started, and what your symptoms are now?

SjoGirl

[SjoGirl]

Mollie, numbness and tingling in feet, hands and even head. Some amount is from nerve damage in my neck, but the cause of the rest is undiagnosed.

As for how it progressed, I would say slowly and without any sense that anything was happening. That is until I found myself dropping things, culminating in smashing a glass container on a counter after I took it out of a cupboard, unbeknownst to me, I did not have the handle on it that I thought. I then had EMG which showed neuropathy all up and down my left side. I don't know about the right, they have not tested. FYI while I have widespread neuropathy it is not yet severe. Will it progress, who knows? I read a good book about PN which basically said it is little understood and not well treated. The most research has been done with diabetics, but I don't have diabetes.

[mollie carey]

So how long have you had it. My tingling started with injuries to my feet and my doctor says any inflammation can irritate the nerve and take a while  to calm down.  I just have it in my two feet I hurt, does not get worse at night, and mainly one foot now. When you say come and go, do you mean like for months, days, years?

[irish]

Molly, I know that your life is all upside down now and this pain has you reeling. However, being patient is the key as someone else mentioned. There is no way that a diagnosis can be done overnight as the autoimmune stuff is so darn complicated and it changes from time to time.

The fact that we have autoimmune means that we live with iinflammatory stuff going on in our body all the time. So often something that will heal in a couple of weeks or months will take longer because of our inflammatory issues.

We are all different and there is no way for a doctor can predict exactly what is going on and how long it will last. With any injury in someone with autoimmune issues the inflammatory issues influence the muscles, ligaments and tendons and often there is nothing that can be seen on scans, etc. Blood work wo't show anything either. Then there is the fact that even people without autoimmune issues can have an injury that will take forever to heal no matter what the doctor does or tells you to do. It is just the part of life that shows up and lets us know that we really cant control or predict the future.


The best thing to do is to hunker down and take care of yourself and limit your activites so that you will enjoy the things that you are able to get to. I have reached a time in my life the past 4 years where no matter what I seem to do, either fun or work, I tend to have an injury that is muscle, tendon or ligament related and I am bogged down with pain, couch, hot packs or cold packs. I am 75 years old and had a surprise last fall with a MRI done because of  burning in my hands. Sounds like carpal tunnel, right.

Well it was a disc pressing on my spinal cord and but I had no pain in neck or headache. The level was C4C5 close to the base of the brain. My neurolgist( she was so surprised also) told me surgery or I very well could be paraylzed in much of body or I could die. That was an awakening so surgery was done...titanium plate over spine with 4 screws and a cadaver disc to replace the old one. Life isn't the same but I am not paralyazed or dead.  The bottom line is if we get too stressed out about much of anything when we have autoimmune disease we tend to suffer more. I will suggest that an antidepressant at bedtime can be used to treat pain and they really do help with pain and sleep. The meds tend to decrease the irritability in the brain chemicals brought on by the stress of an injury or other events.

I hope that this pain and anxiety can be decreased and life will improve. Just take a deep breath and exhale when things overcome you. It really does help as I have to do this often. Irish

[mollie carey]

Actually the wedding is over and I am pretty calm. I am not in pain, I have numbness and tingling. I greatly appreciate the responses people have shared with how their neuropathy came on. I don't know much about neuropathy and so anyone who is comfortable sharing how theirs occurred and progressed is giving me helpful information, since I have aggressive lupus and Sjogrens and many others issues. I believe being informed is power, and I think we have to have to advocate on her own behalf and I do that by asking questions on this forum is a great place since obviously many people who have the same issues and other issues I would like to know about. I have had doctors miss many things with me also. They missed a brain aneurysm, a broken back, a complete punctured lung which could've killed me, and countless other mistakes and I am 54 so I imagine by the time I am your age~ if I am that lucky I will have much more things they miss or get wrong. I don't think there are test for many things. That is why I asked for people's experience with neuropathy because I do I think I may have it and I just want to know what it is been like for other people. I realize this could be an injury as I have said, and of course that is what I'm hoping for but I still have had other episodes of vibrating and humming in my feet so I feel it's best to be informed and know what to look for.

I don't mean to sound panicked, but I do want to hear from people re: their experiences. I do yoga to relax and listen to Indian music from a friend, and this is not an anxiety issue, it is me looking for information. Usually only doctors have made me feel my issue is I need to calm down, until they find a serious issue and then they are silent. I am sorry you have been through so much Irish, this is not a fun journey, I have been sick seriously since the birth of my daughter when I was 32, and from what I read here many people have had terrible health issues to overcome. That is why I posted here, because I felt people would understand.

[irish]

You came to the right place because we do understand about all the suffering and uncertainty. I know that I have been dealing with all this stuff since 1964 and like you and everyone else on this forum, have had many missed diagnoses, doctors who have told me to get a psych eval......actually I think a lot of them need a psych eval because they don't listen to the patient.

In nurses training we were always taught to listen to the patient. Surprisingly some doctors seem to think they know more about our bodies than we do. Pardon my whining. The good thing is that after all the chasing around and expense I finally have a good team of doctors to the grand total of 11 specialities....plus some surgeons who wander through from time to time. Thankfully I don't have to see them all in the same month, but like the
rest of you calendars get bogged down from time to time with appointments.


I am glad that you are not having much pain but know that the neuropathy symptoms can really get to you. The thing with Sjogrens is that we can have transient neuropathy and I think the doctors don't always take it seriously. Years ago I had 2 years or so of burning and pain in my feet and lower legs. When I put my feet in the bath water the warm water would send me up the wall with pain. My doctor didnt believe me. I would wear TED hose at night and sock and take Aleve at bedtime to help me deal with the pain. That eventually left and that bad leg pain never came back...however the pain in feet still visits off and on.

It is almost like we get the symptom and it has to burn itself out or run its course. Doctors have a hard time interpreting the small fiber neuropathy that Sjoggies can get. If you go to John Hopkins website and do a search for Dr. Julius Birmbaum and the Sjogrens clinic you will find some good information.

He is or was the only neurologist-rheumatologist in the US at one time a few years ago. Very smart and very good. When he firsy started his Sjogrens clinic at Hopkins he spent time on this site answering questions and informing us and many others of his new venture in neuro with Sjogrens. Do a lot of searches for small fiber neuropathy in autoimmune disease and in Sjogrens and lupus.

When you read all the good articles about small fiber neuropathy the symptoms are pretty  specific, However, I am of the opinion that a person can have a whole lot of neuropathies related to heaven knows what. In the end it can affect us in so many ways that it is even hard for us to try and explain it to the doctors. The best we can hope for is for doctors to take us seriously and  that we can find good ones who listen to us and that we can feel comfortable communicating with,  Don't give up. Use heat and cold to treat some of the aches and pains. It is amazing what the change in temperature does.

Also, I have having a lot of pain in my hands and fingers from neuropathy and have found that wrapping my hands fairly tightly in a hand towel or a blanket places pressure on your skin and tissues. This pressure seems to sort of calm down the pain. I think that the pressure plus the warmth sort of interferes with some of the pain receptors. It does help. I discovered this out of desparation as I can't take the gabapentin or pain meds. Take care and good luck. Irish

[mollie carey]

Thank you for all of that great information, and I will for sure read up on what you've told me about here. As I said my doctor isn't convinced this is a neuropathy because I don't have pain and is not worse at night~ we will see with time it sounds like, I injured both my feet a few weeks apart~ so that is made hard to figure out what is going on. Another doctor told me that injury can flare neuropathy.

I know doctors like to blame a lot of things on our psyche, and it gets very old~ I think they're taught to look at anxiety first but most of the time anxiety is caused by symptoms anyways, and I have grown not to always trust all of their exams because I find sadly they are just people with medical degrees, they are not perfect and it depends on the person and how much they study and what kind care they really want to extend the patient.

Anyways thanks for this great information I will look into this article and hope that my feet calm down. Thank you for the suggestions also about dealing with pain if I come to that I will for sure remember what you said,.