Frustrated with it all - Vent

[SjoGirl]

Hi all,

Just needing to vent. I had an EMG about two weeks ago, showed two pinched nerves. One is in my upper one in lower back though I'm unclear about the precise locations and am trying to obtain that info from my neurologist.

While it is very mild, I also have motor and sensory neuropathy on my left side, the affects of which are that I'm dropping things and have foot drop at times as well.

In addition I have carpal tunnel in my left hand, for which the doc prescribed a brace (it does help).  I also just did a round of Medrol which didn't really help much (maybe a bit because now that it's wearing off I'm in worse pain than ever).

All this said, I also had a follow up MRI to check on my neck, I have DDD, but it showed no change. Docs, both rheumy and neurologist, are pretty much saying just stay the course with meds, heat, PT exercises that I had been given that that's it.

I'm in pain every day, still wondering why I suddenly have neuropathy (frankly at the moment I don't care if it is mild, this is new and concerning), and am basically hearing -- this happens to older people (I am only in my late 50s, not 80) and a lot of we don't know why things are happening.

It does not help that my only living sibling has decided to forego chemo after trying it.

At least we had an extraordinarily lovely Thanksgiving and I have many other things to be thankful for.

Thanks for listening.

SjoGirl

[Carolina]

Dear SjoGirl,

I really hear you.  Since you have pinched nerves, medrol may help, but gabapentin is the best for nerve pain. 

ASK FOR THE SURGERY for Carpal Tunnel.  It is simple, outpatient and always works.  NO PT, NO splints.  Nothing.  I do not see why they put everyone through all the splints and stuff.

I have DDD.  It is my most constant pain.  It coordinates so well with my horrid Tinnitus, sort of a sound track for the pain.

Neuropathy is one of the problems of Immune Disorders.  Your Immune System is attacking your nerves (probably with autoantibodies).  I am completely disabled with PN in my legs, and have small fiber neuropathy in my hands, arms, fingers, neck, face, lips and tongue. 

I also have nerve damage to my esophagus (see post about Achalasia).

You see I didn't start with most of my Current list of problems until I was 60, so at 74 I'm a 'hot mess'.

I did have severe eczema and respiratory stuff as a baby/kid/young adult.  But things have gotten out of hand since my late 50's.  Severe Coronary Artery Disease, Sjogren's type stuff, anemia, IC (Bladder), PN, SFN, COPD, CVID (alphabet soup for sure).  And now I have Myoclonic Seizures, SjoGirl.

It does NOT help to stress over this stuff.  I know we do, and I know I do.....but meditation, relaxation, making gratitude lists, .......anything to get off the 'why me?' and "what's coming next?" and 'what are they going to do to FIX this?" insane train.

At least my recent back surgery (which I fit into my general hysteria) went off without a hitch and totally fixed my problem!  Who knew?   But a horrid pain that is gone, seems to be a pain that is forgotten, at least for me.

I wish I had words of comfort and joy.   I really hear your pain and frustration.  I'm trying to send out soothing waves of peace........

We are all just along for the ride.

Hugs,  Elaine

[Nomad]

Life does get nutso at times.

I have carpel tunnel in my right hand.
I had some surprisingly luck with a cream with Traumeel in it from the health food store and Arnicare gel combined with using my brace often.

However, for another autoimmune disorder I had to take 20 mgs. of prednisone and now I'm like 90% better. My doc told me to still wear the brace at night for support. When I taper off the prednisone, I certainly don't want that horrible pain to come back.

It's good to know that the surgery for this is relatively easy and often helpful. I personally hope I wont end up needing it....but still good to know.

There is an over the counter patch called "salon pas" that is good for any kind of back or hip pain.

I'm not a huge believer in chemo...although for certain cancers it does seem to be effectual/helpful and this is a great blessings.

But,  I don't think that is always the case. I know in the case of my mom, it simply swiftly killed her. Hence, I'm not an automatic believer. I wish there was more funding for natural / or alternative treatments. There are many examples where people have gotten better.

I agree with Elaine, as best as you can, try not to stress.  Easier said than done. But, I think if we recognize that stress might very well contribute to our autoimmune issues and subsequent pain etc. it sort of forces us to do our best to relax and attempt to go with the flow just a tad bit more. Good that you got it off your chest. I know for me, sometimes that is a huge part of the battle when life is a bit overwhelming.

Sending good thoughts/prayers/wishes for comfort, peace and happiness ((((hugs)))).

[SjoGirl]

Thanks Carolina. I don't know how you do it, but I want to say that you are an inspiration! I am very appreciative of the information that you shared. I have asked me neurologist if I might have autonomic neuropathy as well as sensory and motor since I don't sweat anymore.

My PCP just answered a message that I sent to her in which she wondered whether I might have small fiber neuropathy. I told her that my rheumy was going to order a biopsy if the EMG was inconclusive, but am not sure he still plans to order. I suppose I could have small fiber as well.

Nomad thanks for sharing. At first I thought that the Medrol that I just finished didn't help, but I think it must have. I also started stretching some more and doing exercises. I have avoided patches because my skin is so sensitive, I worry about it being burned or irritated. I do use a heating pad nearly every night and take a pretty warm shower every morning. I was on Mexotrethate for a short time and know how bad it made me feel, I can't imagine chemo. I am doing my best to relax, I knock off work at a descent hour and spend the evening reading or watching holiday movies.

My birthday is this Sunday, I plan to relax and enjoy. Thanks again.