Thoracic outlet and Fibro

Discussion in 'Fibromyalgia Main Forum' started by musette, Feb 10, 2003.

  1. musette

    musette New Member

    Hi, I recently was re-diagnosed with thoracic outlet, and they state my FM is secondary to that. That tells you what they know, FM is never secondary to anything, at least not in my body. I am still on Duragesic 50, oxycodone, and this is not handling the discomfort. I am now back to not sleeping and just uncomfortable in my skin, period! Has anybody else had a diagnosis of thoracic outlet. I have had many surgeries for carpal tunnel, etc. and now to find out that those weren't necessary really disturb me. Does thoracic outlet go away, does it subside at all. How do they fix this, because if I wasn't going nuts before, I am now!

    Musette
  2. Beth37

    Beth37 New Member

    Hello,I have read some about thoracic outlet.I have always wondered if I had this.I was wondering if you could tell me what symptoms you have.How the doctor diagnosed you.I would appreciate your reply.Thanks! Beth
  3. dhcpolwnk

    dhcpolwnk New Member

    A friend of mine who has fibro and chronic myofascial pain told me about thoracic outlet syndrome a while ago, and when we compared symptoms, I began to think maybe I have that, too. My doctor has said twice that he thinks my shoulder pain (which seems to be getting worse) is rotator cuff tendinitis and that this could cause referred pain in my upper arm, along the inside of my rib cage from my armpit to just under my breast, and in the area of my collar bone, from the shoulder down to armpit level. I'm still waiting for a PT referral.

    My friend seemed to think that if you are given the wrong exercises/body work for CMP and fibro, it can result in thoracic outlet syndrome. I also seem to recall reading something about the fact that untreated rotator cuff tendinitis can result in frozen shoulder, which I think also can be related to thoracic outlet syndrome.

    In short, your FM may indeed be related to thoracic outlet syndrome, but I wouldn't say it's clear which is secondary to which!

    --Laura R.M.
  4. Lendi

    Lendi New Member

    I've been diagnosed with thoracic outlet syndrome for about 18 yrs. Had to have 2 sets of ribs removed from each side. It causes me a great deal of pain in my arm, causes me to drop things. And, very numb pinky and ring fingers. That's the main pain difference between it and Carpal Tunnel, which I also have. Numbness from carpal is the thumb, pointer and sometimes middle fingers. Try not to hold your arms above you head when you sleep, and if you notice any numbness move and get it awake. Cold water helps, if you wait too long, and if it's really bad anti-inflams help. Asperin, tylenol do not help at all, nor do pain pills. You can do a search in any search engine and get lots of info, and some exercises, too. It is caused by compression between your ribs and shoulderblade. Suregery helped a lot, but I'm only 4'8" so there still isn't a lot of room in my body.
  5. musette

    musette New Member

    Hi Beth. Sorry I took so long to write back, it was a bad day yesterday. I was diagnosed supposedly with carpal tunnel, numbness in fingers, pain in hand and elbow, however mine also radiates up to the shoulder and neck. I had many surgeries to fix the carpal tunnel on both sides. Now, I am told that it is thoracic outlet not carpal tunnel (and cubital tunnel). The nagging, aching in the neck and shoulders is the main problem with me. Stiff neck and can't get comfortable for your life. Then of course you add the fibro on top of this and it is all consuming and exhausting. It is a lot like cubital tunnel and carpal tunnel as far as debilitating and not being able to lift things, but the pain just gets worse the farther up the arm it goes. I know I am rattling, but that is the way my brain is working it seems lately, I haven't been sleeping very well and I am fogged in.

    Musette
  6. musette

    musette New Member

    Laura - you have exactly the same complaints I have. I feel like I get swollen under my arm pit, and when I talked to my GP about this, he looked at me like I was crazy. I had TO surgery years ago on the right side and that surgery worked up until now. I kept telling the carpal tunnel specialist (hee hee) that I thought maybe it was TO again. He said he knew what he was talking about. Well, he didn't. After three surgeries, the symptoms are worse, I am on Duragesic and oxy for pain and now wondering if all the surgery they have done was even necessary. It is really frustrating because I have a rheumi who said he doesn't believe in TO, but he is the one who years before referred me for surgery for it. UGH! I know this frustration too shall pass as it is a compilation of too many doctors and too much fog. It is a frustrating syndrome and disputed, just like fibro is.

    Musette
  7. Beth37

    Beth37 New Member

    Hi,thanks for your reply.I can relate to your symptoms.I had bilateral carpel tunnel,too.Had both operated on.Then I had shoulder surgery and cervical fusion.It seems the surgeries only made me worse.My pain was mainly in the shoulder,neck and arm area,left side.After my surgery on my neck which was the last surgery I had.My legs got really weak and that's when the pain in my lower back and hips started,the pain goes down in my laegs now,too.I went to a chiropractor,not long ago,he said that when they done the neck surgery and put the plate and screws in,that my curve in my neck is going the wrong way and that's what is causing all my problems.Causing my hips to go out of adjustment,causing the pain down my legs.He also told me that it was very unusual to have bilateral carpel tunnel.Of course the chiro doesn't believe in Fibro,but he did make alot of sense.What ever you do don't have any more surgeries,unless it is absolutely nescesary.I wish I would have not had any and 4 was way to many.Do you have any swelling in your neck and shoulder area? I had swelling before the surgeries,but I have even more now.I am going to ask my Doc. about thoracic syndrome.How do they diagnose you? Sure hope you can find some relief,all of us as far as that goes.((((HUGS)))) Beth
  8. musette

    musette New Member

    I do have swelling across the chest, just below the neck in front and back. I feel like I can't turn my head most of the time. I too have had many surgeries, but I used to listen to what the doctors told me. Now I research and question everything. That is both good and bad I suppose. I have pain across the back at shoulder level and down the arms, to the finger tips. I know that when they first said I had TO, they said that there were tender points on the body, and to be diagnosed you neeed 11 of the 18 tender points confirmed. I had all of them so it was a given. A lot of doctors doing believe in TO or fibro, so it is doublely hard to convince these guys you aren't crazy. Seek a good rheumy, that is who diagnosed me originally with both ailments. Funny, now the same rheumy now states he doesn't feel TO exists. He is the reason I had the first TO surgery. I have been cut from top to bottom with doctors trying to "fix" me and they all say different things. I will not allow anymore surgery. I think all those surgeries have caused more pain than relief. Good luck to you, let me know what you find out. It is a frustrating thing, and after 12 years with TO, supposedly, it only gets worse, you just learn more creative ways to calm it down.
  9. Beth37

    Beth37 New Member

    I can understand,what you mean,I am not letting them operaye again,nowhere!!! It has only made me worse.It seems they find out that you have Insc. and they just want to cut you open,as long as you will let them.All I wanted was to get relief from the pain,I wanted it to stop.Not get worse.It seems they didn't care they just wanted the money.Well I won't go on and on about that.I have swelling in neck and shoulder area,and chest.Around where your trapezius is.It swells more,when I am using my arms,the pain gets worse then and when I am under alot of stress.I can handle much stress at all,without alot of pain.I feel that my condition is only getting worse,too.It's really scary.I hate not knowing what is going on in my own body and mind.Well,I have gone on enough.Thanks for your reply.((((HUGS)))) Beth
  10. bubblegum

    bubblegum New Member

    i went to the doctor today and he took cervical xrays and said I have a cervical rib that is causing the TOS. He was surprised that no one has noticed before. I am 41 and was in a MVA in 1981 and many physical problems since then. I don't know much about TOS except it hurts like H---! I have been complaining of shoulder, neck, arm and hand pain with severe burning for 2 years. Yesterday I saw a neuro and he said the problem was not neurological. Along with FM, DDD, MPS I don't know how much longer I can take this pain.