Thoracic Outlet Syndrome Support Group
Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.
I'm just at my wits end with everything. Nothing in the past 3 months has done a thing to help with the pain.
We're doing "nerve glides", or whatever they're called...where you move your arm (body) in such a way to try to slide the nerve out of where it's pinched. This is very painful to extremely painful for me. Doesn't seem to be doing anything but causing pain.
We're doing Stretching and strengthening. Feels great, and I AM getting stronger and more stretched out. Hasn't helped with pain or ability to open jars/bottles or the fact that I can't lift anything over 3 pounds with my right arm.
Trying Ultra-Sound. Feels great, nice and warm, but I dont' feel anything different afterwards.
Trying E-stim (where they put the electrode thingies on and it contracts your muscles with electricity). I'm totally addicted to the feeling (weird, I know), but the pain level is almost off the chart 2 hours later, and the next day there's no change.
Oh yeah, and I'm on Flexerol and Tramadol. I dont' take either of these on a regular basis, only when I feel like I need them. The Flexerol makes me pass out and makes it VERY hard to wake up. The tramadol makes me loopy *and* in pain. It doesn't take away the pain at all, just makes me really, really happy.
So....what helps you to ease the pain?
We're doing "nerve glides", or whatever they're called...where you move your arm (body) in such a way to try to slide the nerve out of where it's pinched. This is very painful to extremely painful for me. Doesn't seem to be doing anything but causing pain.
We're doing Stretching and strengthening. Feels great, and I AM getting stronger and more stretched out. Hasn't helped with pain or ability to open jars/bottles or the fact that I can't lift anything over 3 pounds with my right arm.
Trying Ultra-Sound. Feels great, nice and warm, but I dont' feel anything different afterwards.
Trying E-stim (where they put the electrode thingies on and it contracts your muscles with electricity). I'm totally addicted to the feeling (weird, I know), but the pain level is almost off the chart 2 hours later, and the next day there's no change.
Oh yeah, and I'm on Flexerol and Tramadol. I dont' take either of these on a regular basis, only when I feel like I need them. The Flexerol makes me pass out and makes it VERY hard to wake up. The tramadol makes me loopy *and* in pain. It doesn't take away the pain at all, just makes me really, really happy.
So....what helps you to ease the pain?
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I am a fellow sufferer and a nurse practitioner. One thing about pain is the longer you have it, the harder it is to break it. I know that many medicines, tramadol and flexeril, can cause sleepiness, balance issues etc. Taking them only now and again doesn't give them a chance to work. Better to take smaller does (like half a flexeril or tramadol every 12 hours instead of 8 hours) than to skip or miss. Neither one of these meds are particularly effective on nerve pain. Talk to you provider about neurontin or lyrica to se if they might be appropriate for you.
Don't discount the happy effect of tramadol. Chronic pain leads to depression and depression leads to more pain. Gardeningjen
I think that this site will help you with resources and links, but how others have dealt with similar issues.
Thought we could help.. http://dailystrength.org/groups/neuropathy
Since 2005 I've been on -and am still on...
Neurontin -started at 100mg/day now at 900mg 3 times a day
Soma 350 - 3 times a day until it stopped working
Flexeril - which didn't do anything for me
Skelaxin 800mg 3 times a day (that seems to work the best)
Valium - 5mg twice a day (because my dr. didn't want me to get addicted to it. oh yeah being addicted to pain is SOOOO much better! I went back to Skelaxin.
Loritab (kinda like Vicodin) - started at 1/2 pill 3.5 once day and now am at 2pills 7.5 every 6 hours, if I'm awake to eat alot. it upsets my stomach and keeps me awake, pain free, but awake.
Advil - 600mg 3 times a day if I'm awake enough to eat anything substantial
The one thing I have learned is that I need to take the muscle relaxer on a schedule every 6 hours for it to make any dent.
I've tried trigger point injections - they did help some until they realized that I'm allergic to Lidocaine. That's a WHOLE other story.
Anyway. This could have been just doctor BS, but he said the muscle relaxers have to build up a level in your system to work the best.
I guess all I can say is your not alone, and sometimes that's enough to get you through the day.
Good Luck.
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With no help from anyone else, I got to see him and had two surgeries at the same time by him in Dec. I am still in the long healing process from the surgery, but I know that once that is healed, I won't be suffering from TOS ever again.
Once you have gone through all you have, it's time for surgery. See if you can get a referral to Dr. Thompson.