[chaos]

Everything looked normal. I think the doc was disappointed, he mentioned if it came up with carpal tunnel at least that would be easy to fix. He looked stumped. Said all large fibers looked good and no large fiber neuropathy. But he clearly saw the fact that my dominant thumb was having issues and suggested that I wear wrist braces at night to support them, as there is something going on. He said it has to be small fiber neuropathy.

I think next is getting tested for all autoimmune diseases. I'm kind of upset that my doc hasn't asked for them yet, I need to push him on it. This is just getting worse and worse everyday. I know it's affecting my stomach. And I probably should take more meds, but I'm so tired all the time. I'm taking Oxcarbazepine 600mg 2xday. The Gabapentin made me stupid.

He also said it can't be hereditary because it's not affecting the large fibers. Is that true?

[Susanne C.]

Originally Posted by chaos

Everything looked normal. I think the doc was disappointed, he mentioned if it came up with carpal tunnel at least that would be easy to fix. He looked stumped. Said all large fibers looked good and no large fiber neuropathy. But he clearly saw the fact that my dominant thumb was having issues and suggested that I wear wrist braces at night to support them, as there is something going on. He said it has to be small fiber neuropathy.

I think next is getting tested for all autoimmune diseases. I'm kind of upset that my doc hasn't asked for them yet, I need to push him on it. This is just getting worse and worse everyday. I know it's affecting my stomach. And I probably should take more meds, but I'm so tired all the time. I'm taking Oxcarbazepine 600mg 2xday. The Gabapentin made me stupid.

He also said it can't be hereditary because it's not affecting the large fibers. Is that true?

I know that in my case it is true, that both the small and large fibers are affected, but I do not know if it is true in all cases.
I suspect that it is, because the large fiber deterioration is what causes the muscles to atrophy.

[chaos]

I'm so tired of dealing with this. I just want to know what's causing it, how to treat it, how bad it'll get, etc. I'm sure those of you who've dealt with it for a while are not pitying me. I'm currently waiting for my Neuro to call me back so I can get a referral to UCSF for a skin biopsy, find out when I can get testing for autoimmune issues. It's just getting worse and worse every day. Have to talk to doc about meds, I know it's getting worse because I'm feeling it in new spots, but also assume I need more or different meds. Waiting for B12 to kick in, hoping it does it at all.

I think I'm just depressed today. You'd think two antidepressants would help with that huh? I wish I could take work off when I felt like this, but nope, I'm the one that holds the fort down for the bosses.

[hopeful]

Hello chaos,
I definitely have empathy for you. I do remember what it is what like in the beginning for me. I still go through wanting an answer to what is wrong with me and why. I just went back to it last week when I was given yet another opinion from another doctor. I have been dealing with this for almost 5 years.
I allow myself to feel sorry for myself for a very brief period of time and then I talk myself back into reality and move on. I remind myself things could always be worse and I come to this site for support.
You are doing all the right things and it looks like you are on the right track. Try to relax a little (easier said then done I know) stress makes our symptoms worse.
I hope you get some results soon!
hopeful

[chaos]

Yeah, yesterday was just a bad day. My depression started as pain induced over 10 years ago, so when I'm in more pain, it just gets worse. I went home, my husband and I discussed my depression, had a drink (which is rare) and cuddled with my daughter watching TV after dinner. Hopefully I can get outside this weekend between the rain and do some gardening, which obviously I have to do a little at a time. I have tomorrow off work for good friday, but we don't celebrate Easter so it's a nice long weekend for me. Getting outside I think will help the best. We have my bro-in-law at the house right now, so I'll probably play tourist and drive him around a bit, get some photos done.

The pain thing is one of the bad things about all of this (duh). I currently use pot to help with the pain (which the docs agree with, I have a medical prescrip) but I can't use it at work. I don't want to take opiates while working either. I'm going to ask the doc for the topical ointment to help with the pain. I have a really hard time with a lot of pain pills. I don't know what else to do about the pain, be all loopy and/or be addicted, or be in pain. I don't want to be either, which is why I haven't taken pain pills yet. The pot actually works great when I can use it. I tried Tramadol many years ago and had a horrible reaction to it. Got addicted to Percocet when I was in the hospital and I wasn't even taking that much for very long. Vicodin and Advil hurts my stomach.

[hopeful]

Where I live you can't get medical pot. Sometimes I wish we could. The only thing I take for the pain is Tramadol. I'm too afraid of the other narcotics. I had to finally stop working in November so I'm going through some things right now. I am able to collect some disability but the money is tight. I know we will get through it. For me, I have to put my trust in God. I try to remind myself of that daily.
I hope this weekend brings you rest and some joy. Get outside as much as possible. That always makes me feel better. I am sooooo looking forward to summer!
hopeful

[chaos]

I slept until noonish all three days. I did get outside a little between the rain. Went out for dinner one night. I'm just so tired all the time right now no matter what I seem to do. I have to do everything in little spurts. I don't know what's making me so tired, except my meds. It's not like I just fall asleep just sitting there, but I'm achy and run down. I suppose that's part of this awful disorder. If I am not working that day I can get a little done. Friday (I had off) I was able to make egg rolls and strawberry shortcake, needed help with both (like using the pastry cutter to cut in the butter into the flour because I'm not strong enough right now). Saturday I finished trimming the bushes out front, that I had started the weekend before. 5 little bushes, and I had to do it over two days. Pathetic or what?

Maybe I need different meds?? Gabapentin made me an idiot. Taking Oxcarbazepine currently.

[hopeful]

I use to do all my planting myself but I need a lot of help now. I have said to my kids that what I can do in pathetic and they say no its not at least your doing something!
But I feel that way too sometimes. I use to workout 5-6 days a week and now can barely do any exercise. I was in a lot of pain the last few days because I cleaned Thursday and Friday last week and then had company for Easter. I have almost no energy in the morning. I wait until later in the day to do any work.
I'm sure your family doesn't mind helping you make strawberry shortcake since they get to eat it! By the way that's one of my favorites.
I've tried Trileptal and all the other anticonvulsants. I just can't take them. I currently take Cymbalta and Tramadol.
I hope you feel better too!