I need help. I can't seem to get this flare calmed down. It has been going on for over three weeks and I feel I can't take the pain and burning much longer. I do have an appointment with my neurologist this Thursday, but that seems like forever from today. I tried to get in sooner, but this is the best they could do.

I have been propping my arm on a pillow. Trying to sleep mostly in the corpse position (not sleeping much due to pain). I am putting lots and lots of heat packs on my neck, shoulder, arm. Also doing the neck stretch for the scalenes - the one where you hold the side of the chair and tilt the head to the opposite shoulder, and shoulder shruggs. Both of these exercises were recommended by my vascular surgeon. I am having husband do most of the housework again because my arm is so painful I just want to rest it.

Oh, I also started taking a baby aspirin per day about two weeks ago as suggested by my vascular surgeon. It does not help with pain but I think he suggested it because I have both ATOS and NTOS. The doctor also prescribed 100mg of Neurontin. I did not fill it because I had a very bad allergic reaction to Lyrica and I was afraid of getting another reaction (severe hives).

Any suggestions would be so welcome. Thanks.

Any suggestions?

the Neurontin helps me, I take 200mg 2x to 3x a day. The scalene stretches are good, I am not sure if I would do the shoulder shrugs. Before my first surgery, I was doing shrugs and it seemed to aggravate everything. When I flare up, I find I have to sleep in an elevated position. Also if you have a large foam roller, lay on the roller with the roller on spine, this helps open the shoulders. These are just things that help me.

Thank you so much for the help. I was doing shoulder shrugs 3-4 times per day and I will stop right now as it is not helping calm this flare. I fell asleep sitting up in the recliner last night and when I awoke about three hours later, I did find my hand was not numb like it typically is when I wake up in bed. I am going to make that my new sleeping spot for now. I also will get the Neurontin script filled and take it as I can't stand this intense burning pain.

I am so grateful for the advice. I am so tired and depressed right now because this flare is wearing me out so much and I am so miserable without good sleep. The days seem so long when they start at four in the morning with pain. I use my meals as markers...got through breakfast, good, just five more hours until lunch, then white knuckle it until dinner. It is miserable. But when I come to this forum and see I am not alone and that others can get their TOS calmed, I am so encouraged I get renewed energy to keep trying new things.

Thank you so much. No more shoulder shrugs for now and maybe sleeping upright will start to give some relief. I was starting to get pretty afraid of the pain, which makes everything worse.

Are you seeing a physiatrist? Mine gives me a scalene block to break the bad flares. I know it's temporary but it does provide me relief and breaks the flare. My insurance won't cover physical therapy nor the cost of the entire visit when botox is injected so besides medication, the scalene block is my only option.

I had a reaction to Lyrica as well. I can tolerate Neurontin (I'm at 400mg 2 - 3 times a day) but it is not going to really stop a flare, just dull your nerve pain. You have to ramp up Neurontin from 100mg until you get to a tolerable and effective dose. Not a short term solution to a flare.

The most effective short term solution to a flare for me has been Toradol (a powerful NSAID). A steroid taper (Medrol Dosepak) can also be effective. A strong muscle relaxer also helps (Valium, Zanaflex, and Flexeril are examples). I found that exercising and physical therapy only aggravate my flares. My advice would be to rest and avoid raising you arms. I've learned to drive with my elbows at my sides holding the bottom of the steering wheel so I don't aggravate the TOS.

Hot showerers/baths as well as heating pads or Thermacare patches also help me.

I have put all the instructions to: pull shoulder blades back, tuck in chin, do shoulder shrugs, etc. on hold until this calms down. I was pulling my shoulder blades back further and shrugging way too much thinking it would take pressure off of the nerves. But I think you are right, it was making things worse.

I just took a hot shower and did the three scalene stretches that were posted somewhere on this board. My injured side almost makes me sick to my stomach when I do it; the less involved side just feels like a nice stretch. I did not think this pain could come from my neck because it hurts so much in my shoulder, arm and hand. Ok, now I need to see if I can get a towel to shape up like a foam roll. Do you know where to buy a foam roll and what size to use?

I have also had great relief from the Medrol dose pack and thought for the 3-4 weeks when on it, "Oh my God, I have my life back!" I was thinking that I may not have to have surgery and was highly optimistic. I have since realized from the Thoracic Outlet Specialist that "You cannot live on Steroid packs", however it is great relief to get you through a flare up.

I also found that when this is combined with a muscle relaxer, I happened to be on Flexeril, that the results are even better. I also found the Neurontin to be helpful. There is also a stretch that my physical therapist has me do that provides me with some relief, while stretching the muscle

My pain is most significant in my pec. minor, so this stretch may help those experience the brachial plexus pain. My husband stands over me while on the bed and places his palms of his hands on my shoulders applying moderate pressure, which seems to help open up the shoulder girdle and relieve some of the compression on my nerves. We do this nightly for 5 reps. of 15 seconds each time.

You can also do this one alone using a corner of a wall to push against the wall, however I have been told to be careful not to "overly protract my shoulder, or I will stretch the shoulder and not the pec. minor." This disorder can be very emotionally depleting so I think it is extremely important to use every support possible, which is why I am happy to be joining this group!

Good luck

Ah, thank you for the YouTube foam roll demo. I did not get the correction position from the stick diagram at all. I thought the little stick figure was on a bench and I could not see the foam roll. This clears it up and now I think I want to try that half-roll that is shown.

I also wrote down the suggestion regarding the steroids. I see my neurologist tomorrow and I think she will definitely like that idea as she has used it twice in the past for me to break a cycle of month-long headaches (and it worked). I am also going to have my husband try the shoulder press tonight. I do notice when I am laying on my back that it is hard for me to get my shoulders to go back. It is like they permanently curl upward. When I force them down a little, I can feel the nerve pain run right down the arm. I am writing down all the advice I have received right now and plan to track how I react to each item.

You are so right when you say this is draining.

If the foam roller is too much for you, or you find yourself waiting for one to arrive, try the "corpse pose". I was so tight in the beginning that just doing this would stretch my TOS-side pec. Then after I couldn't feel that stretch any more, I was ready for the roller, well sort of. I wish I had started with the half roller. The full is a bit of a jump.

Also, regarding flare ups, my chiro recommended a cold pack on the thoracic area for 15 mins on, 15 off and 15 on. No direct skin contact, of course. Really helps me.

A few brugger relief poses, scattered throughout the day, have also been helpful to me. You can look it up on youtube or google for details.

Good luck.

I am waiting until I can calm the area before I try the half foam roll again. It was too much. I am back to trying gentle shoulder shrugs every couple of hours or so and I am hoping for some relief. I tried to put a bra on for a little bit so I could go to the doctor yesterday and that put me right back into the worst of TOS pain again. I took the strap off after 10 minutes (in the car), but it was too late, my hand has been hot and numb ever since and that was yesterday.

What does that compress when it makes the arm go numb so quickly from a bra strap? Is that scalenes? I do wear a good support, thick stretch strap model, but it does not help. I can only wear a long-line bra without straps and they are the most uncomfortable garments ever made so my time in them is short. Anyone know why the strap makes numbness and pain?