I am struggling with a very bad right-sided TOS flare. I have been diagnosed with ATOS and now seem to be getting the nerve pain along with the positional compression. I now continuously wake up at night with a heavy, numb, pinched feeling in my forearm and hand. It is a sickening feeling and it takes me a good 10-20 minutes to calm it once I get up. I am finding my hand (palm and back), fingers, forearm and a nerve right above the elbow in the back of my arm are just burning. It makes my lower arm and hand feel so heavy and I can't find a comfortable position.

I have tried sleeping with two shirts on so that I do not put my arm in the second shirt sleeve in order to keep it close to my body. That has not helped. I bought a wrist splint, thinking I might be curling my wrists too much in my sleep. No help. I also started wearing an ulnar nerve fitted arm guard the past few nights to see if that would relieve it - no help there either. So I am tired and anxious and fearful I will not get this situation calmed down.

Can anyone relate and if so, what do you do to sleep?

Thanks, Elyse

Are you able to get any expert PT/massage/manual triggerpoint work?
A friend might be able to help with some of the massage or manual TrP if any are found.

these might help -
http://www.pressurepointer.com/pain_reference_chart.htm
http://www.pressurepointer.com/Users1.htm


I know when you are hurting , the last thing you feel like doing is any kind of self care/posture work, but sometimes a very gentle corpse pose, relaxation, breathing, and very gentle stretches/movements might help.

I had lots of forearm, elbow, wrist pain years ago and expert PT, chiro and tons of posture/self care (Sharon Butler's book/website RSI info) have really made a difference. Most of my sx & pain were coming from tension in my neck muscles and upperback areas.

I can definitely relate. I just started sleeping through the night a few days ago. What meds are you on? I had to find the right combination of meds to manage the pain before I could sleep through the night. I also find that wearing the IntelliSkin at night helps reduce my symptoms.

I'm hoping you are at least on Neurontin or Lyrica for the nerve pain. A 5-day course of Toradol helps me greatly when I have a bad flare. Valium or Zanaflex before bedtime also helps me. What works for one person isn't always the best for another. I suggest you find a pain-management specialist if you don't already see one.

Are you headed for surgery?

Thanks for the responses. Those diagrams of the TOS was most helpful. I see my pain areas are all highlighted in it. I am going to try the scalene stretch after a shower. I have been waiting until late day to shower the past two weeks because it requires so much work. I never thought I would be reduced to quickly by this pain.

I have been trying to do some of the exercises from an Egoscue book I got at the library, but they are far to advanced for me right now and are increasing the pain. I am doing shoulder shruggs about four times per day (as my vascular surgeon suggested) but I am wondering if that is making the pain worse.

I have a prescription for 100mg of Neurontin to fill. I tried Lyrica and had an allergic reaction of hives. The doctor said Neurontin is a cousin to Lyrical so he wants me try a low dose. I also have some Valium that I filled about a year ago (for this problem) but I have not needed it until now. I will take one with dinner. It may help my nerves as I am getting depresses and edgy from this sudden onset of pain (going into three weeks now).

Elyse,

Yes, I can relate to that pain and had trouble sleeping at night a few weeks ago. I saw my physiatrist a few days later and he offered to do a scalene block then. It broke the flare so I was more comfortable. It hasn't been that bad since then but it is definitely worse than say 2 months ago . . . When I get that horrible cramping forearm pain, I wrap the arm in a heating pad and it seems to reduce the pain. I have ATOS and NTOS, too. They wanted to schedule surgery right away based on the doppler results but I have to wait a few months for personal reasons. We are trying to figure out how to move it up a bit due to the rapidly worsening symptoms.

This has bothered me a lot over the years, and especially during pregnancy. I was advised by a pt to raise my arm up on several pillows, which helps tremendously. I hope you feel better soon!

I tried the corpse pose after dinner last night and found it gave me more relief than the other things I have tried the past two weeks (hot showers, stretching, heating packs, propping my arm and splints). I also got into the corpse position last night in bed and was able to get four hours of sleep. This little bit of sleep has helped me cope much better today with the pain.

What I don't understand is when I stand up, or mostly sit on the couch, the pain and 'pinched nerve' feeling comes right back and is very miserable. Why does the nerve irritation let up so much in the corpse position, but not when sitting with my arm supported on a pillow at my side? Is this why you suggest trigger point releases? My husband tried to push on that lump at the top of my shoulder/neck and it hurt so much I couldn't take it. Perhaps I need to get the Sharon Butler book.

I have tried PT twice in the past 18 months. The first PT made the swelling in my arm so much worse by forcing stretches. The second PT did not do much. She kept looking up TOS on her Iphone to get ideas for me. She was nice but did not have experience with TOS. I wonder how to find a PT with this type of experience.

That's why I try to be sure to add expert or advanced PT when I mention PT, but some just always use the same old one size fits all regimen- no matter what level of training they have.

They need the ask you how you are feeling and adjust accordingly.
They should start with pain reliving modalities only and gentle posture work until the pain is reduced, then if tolerated, some more active therapy can start.

My chiro only did pain reliving modalities and adjustments, since my pain was lower or gone, I could do activities and stretches on my own at home.

Somehow chiro wrote the bill/codes so that it didn't cost as much as when the PT places did the billing... Before I found the chiro most of my PT was covered by work comp. Did a few sessions for my low back with my GP's PT place and got the bill and decided the chiro was a much better deal LOL..

But not all chiros do the extra modalities, I'm sure glad he did.

If you can afford it look into Sharon Butlers TOS program on her website, it is put together in a detailed progression. The book was written for RSIs, and you have to jump from page to page to find the TOS stretches and it isn't in the step by step progression. The book will work, but her TOS program makes it so much simpler. She does have a money back policy.



when I stand up, or mostly sit on the couch, the pain and 'pinched nerve' feeling comes right back

I think it is Gravity. Your head weighs about 8-12 lbs and if head/shoulders are forward and not aligned on the spinal column - the neck & upperback muscles have to work extra hard to hold the head up.
Then they tighten up, get triggerpoints , then spasms.

All the more complicated when blood flow & nerves get pinched or irritated.

I am going to purchase the Sharon Butler program on the web. I need some specific guidance so I don't further aggravate this bad flare. I think I got it going when I decided I needed to work on my serious deconditioning since all this problem has hit. I started to lift some one-pound weights and do the elliptical for about 15 minutes at the first of the year. I was so sick of sitting in a chair, propping my arm, I decided to get moving. I even walked about 15 minutes 3-4 days per week. Even the walking was really irritating my arm. It must be the gravity, just like you said.

I am very weak in the upper body with rounded shoulders and a long, pencil-thin neck. I know I have head-forward posture even though I try to correct it throughout the day. It never stays in good posture because I don't have the muscles to support it.

I have barely moved today. Cut back on most of my housework for the last week too. The reduced physical movement, combined with that corpse pose, has given me several hours of relief. I am praying I can get it better than this. The pinced nerve feeling is so sickening.

Thank you all for the support. It is scary and lonely living with this problem.

I had to read thru it a few times for it to sink in , I wa son Lipitor at the time and it made me pretty foggy brained...

Many start her program over zealously and have a set back, remember it is just a tiny hint of a stretch nothing more , baby steps.