Your English, dear Monica, greatly exceeds my German (which stretches all the way from danke to Gesundheit). It is lovely, expressive, clear.

I found this Forum several weeks ago & know exactly what you mean about it felling so good not to be alone. That's one very special thing about the people here: They will let you come & be here with them no matter how you feel. You can ask questions, hang out & just listen, throw a fit out of frustration, whatever. People here are always here for you.

In your earlier post, you said: "One thing that is very strange - and maybe you know what this can be - is that I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and 'my' pain comes in its usual waves. The physio does not know what this is and neither do I."

Just a thought: Maybe you are standing up too soon.

When I have deep-muscle massage (which can break up blockages in energy flow) or acupuncture (which channels energy flow), I will often feel stabbing pain, nausea, &/or blackouts if I don't give my body at least 5 mins (sometimes I need as much as 20) to regulate or adjust to this new energy pattern. I don't know whether there are any parallels with your treatments, but you might give this a try if you are getting up right away.

Best wishes.

Thanks for your dear replies. You are such a nice folk.. When reading Broken Wing's post I felt like being in an old movie which we sometimes see about the old times in the US. Sounds wonderful, this country scenery.

Yes, hair-drying is not so painless as it should be. For me it is also very painful to do such simple things like peeling potatos when standing in front of the sink. Ouch!

JudeLauren, it is interesting what you said about the pain after the physio. The problem is that you usually do not have enough time to relax after the treatment because the next patient is waiting. But I'll tell her tomorrow about that.

For me, at the moment, the most terrible thing is the mental picture in my hand that I will never ever be able to move and behave like a healthy 50-year old woman. This totally knocks me off. I'm sitting here in front of this computer and the pain starts creeping and swelling at my neck and behind my ear and I think that this must be somebody else's nightmare.

Due to the Hashimoto desease I have already pain in all of my muscles and am often tired. I am used to that but the TOS is too much. I hate people who complain all day long about their - not serious - ailments but then I find myself standing in the kitchen and the tears start running down my face. I feel so inadequate as a mother who is always tired and a wife who walks around with an arm hanging around as being paralyzed for fear that the pain comes again when moving normally. I always think that I could damage muscles, the plexus or I don't know what when using the arm and the muscles like a healthy human being.

When I will have finished the physio - still two times to go - then I will start the Sharon Butler self-care program. I - again - put all my hopes into that.

Well, now I'll go picking up our son who is doing a combat sport. I always tell him: Dear son, do not walk around like your mother, your head forward and your poor back bent . You will end up like me. He grumbles then but straightens up his head.

Dear new friends, I wish you all the best for a good night, no pain, no bad thoughts.

Monica

Wishing you the same...

Perhaps you could find somewhere close to lie down--an unused phisio's couch, or even bring a sleeping bag & find a quiet corner. As a last resort, simply move to a chair & remain quiet. If you move slowly, you can maintain the energy state of the muscles. Try also to keep your mind quiet.
When my mom died in 1991, we discovered that my dad was in mid-stage Alzheimer's, just as we'd suspected. Their doctor had lied about the neurologist's findings. I moved back to be with him. A decade later, my cholesterol soared; I started taking large doses of statins & niacin. Within 3 wks, I was reporting arthritis everywhere. It was side effects from the drugs. Soon all my muscles began to feel bruised. Over the years, the statin dose has increased (I'm genetically predisposed for high cholesterol.) So has the pain. The worst of it is that my sleep is interrupted by the pain, waking me every hour & a half or two hours. Over the course of 10 or so hrs, I try to put together 5 to 6 hrs of naps & call it a night's rest.

I'm telling you this loooong saga (sorry) not because my story's the same as yours but because there's a parallel. When my troubles started I was 45, & I mourned my lost future. I was full of fear for all the loss I would encounter.

Okay, now I'm 65, & I missed out on a lot because I was afraid to go for it. I spent too much time mourning what I couldn't do. But I have a best friend who kept dragging me along with her, doing things we'd always done, reminding me of what I could still do with a little effort, planning--& her help. I've had to accept that, sometimes, I need to ask for help. & that's okay.

So what I want you to know is that neither your present nor your future is sealed. Ask questions, keep asking questions, till you really understand your condition & all your options.

And try not to mourn now. Don't assume the battle's over (& lost).

Stop by anytime for hugs, to talk, to get whatever you need.

Good evening from good old Germany...

the problem is that I cannot even go to the couch without the cramping. But it sounded interesting and convincing what you said about the energy pattern.

I know that it is not easy to take care of somebody with Alzheimer. My grandmother - who is 102 years old ! - now has been suffering from dementia since she was 98. My mother, my aunt and I are taking care of her. My mom and aunt are doing the physical care and I am responsible for the logistics.

It is good that you have such a nice friend. Could use one here too. My best friend lives about 300 km away and I miss her often. It is not like talking to your husband. You do not want to tell him all the time that you feel bad.

Thanks for your encouragement and I wished I could give you a bit back.

Yesterday was a good and interesting day. I had my first trigger point shock wave therapy. It felt like having a rendezvous with a jackhammer. Although I was a bit afraid before that it might hurt, it did not really. Only an incredible pounding on your back. I thought that this procedure would definitively ruin the remaining healthy parts of my tissue , but it did not.

After the treatment I could walk with quite a straight posture out of the building, for the first time in 18 months. Today the feeling was like muscle ache, especially at the bad side, but it was okay. I only had 3 bad attacks up to now. Wonderful .

They say I should do that twice a week for about 6 to 10 times. What experience do you have with shock waves? Effects, frequency?

To all TOS fellow sufferers: Do you all take medication for the nerve pain? I am afraid to take something - except when the pain is creeping up into my back head too, ouch - for fear that I might ruin my liver and kidneys.

If this is okay for you all I would like to continue writing in the "Thoracic-Outlet-Syndrome-Forum". With the two Welcome-threads (my fault ) I get mixed up.

Wishing you all the best and sending you a big and thankful

Monica

All in all, I think you're doing well. I'm happy for you, Monica.
I'm having a bad time right now, lots of pain, going in for tests. Blacking out for unknown reasons. Take care.

I am very sorry to read that you have so much pain now. I know how that feels. After yesterday's physio my pain has gone worse and today the doctor called to tell me that I could not have my trigger point therapy today. Too bad.

I hope you still have a good weekend. We are sweating here, the air feels sticky and humid.

Hope to see you in the TOS thread.