severe aching in neck and shoulders

    • Anonymous
      October 6, 2008 at 1:26 pm

      Hi guys, as you can see, I haven’t posted since last year in november. My husband had colon cancer and many difficulties resulting from it, mainly almost losing his left leg due to over radiation. He is cancer free, and has gained back his health, along with a colostomy bag and not much mobility. Needless, i had to kick it up a few notches for the last year and now. He was always my helper and the strong one, now he is barely able to walk and can’t do much of anything as he has no balance and walks with two canes. The Lord helped me through this crisis that I thought I could never handle energy wise and emotionally as we know as fellwo GBS’ers breaks us down. I think it has finally caught up with me. When I first started having symtoms and became diagnosed with GBS, I was having severe pain in my neck and shoulders, unable to get comfortable in any way. Even when I was hospitalized, and on morphine, etc, every pain med possible I was complaining about my neck and asking the nurse the move the pillow here and there, nothing ever helped until I went on the life support and was completely out of it. I haven’t been sleeping well in over eight years since I had full course of GBS, nothing works. Now, I’m trying to document my large episodes with pain, and they seem to fully return every three months. Sometimes in the form of neck and shoulders hurting then spreaing up the back of my head to the very top, I guess where main nerve is. It usually lasts a couple of weeks and then disappears as quickly as it started. As I am writing this, I am in agony in my neck and Shoulders, no meds help, trying to relax – but have a very busy mind. Anyone else experiencing this, any suggestions are welcome. My friends and family have plenty, but they really don’t understand that this is a residual of GBS for me because I have overdone it AGAIN. All of this is besides my daily residuals of fatigue, aching and numbness in feet, hands and sometimes face. Please respond as I know some of you or most of you can relate. I don’t even go to medical doctor as he really doesn’t know what to do. He’s given me antipressants, (which I stopped shortly after taking because I experienced all the negatives, Valium works for short term, no sleep aids other than over the counter :Sleep Aid from Costco – works better than most RX’s, but nothing works for long. Thanks, Bunny

    • Anonymous
      October 6, 2008 at 1:56 pm

      Hi Bunny, sorry to hear of your husband’s fight with cancer and hope he continues to fight and mend. At onse in the hospital, I had severe pain in my neck and shoulder on my weak side (left) I was given a patch that had medicine in it. I wore it for 12 hours a day. I get the pain now every so often when I’ve over do. But I’m on Gabapentin and Baclofen for nerve and muscle pain. They do help manage all my pain, not always but most of the time. Hope others can be more helpful 🙂

    • Anonymous
      October 6, 2008 at 5:20 pm

      Hi Bunny, Welcome Back!!:) Sorry to hear about your husband, that is alot to go through. and I’m sorry to hear you are having more problems yourself. I know exactly what you are going through, I’m there with you also. I wish I had a magic answer for you, but I haven’t found it myself yet, always trying different things, so if I find the answer I’ll be sure to let you know. Have you tried the patches, both the warming type and the medicine Duragesic(generic name) type? I have found them to provide me with short term relief only, but hey if it works for a day that means a day more of sleep. I can’t help with the sleep problems either, as I am up many nights til 4 or 5a.m. or sometimes all night long.
      I hope you can find something to help you get some relief and soon. Please take good care of yourself, and I hope things go well for your husband also.

    • Anonymous
      October 6, 2008 at 8:27 pm

      I had severe neck pain that went up the back of my neck to the top of the skull in the back when I was first diagnosed with GBS. I lived on aleve and tylenol, but it was really uncomfortable especially when I was hospitalized. It helped to use cold packs and to sit upright as much as possible with my neck supported. However, the really, really good news was that I went to a rehabilitation doctor the day after getting out of the hospital and he said that it was myofascial pain likely from weakness in holding my head up straining the muscles. He said there was a tense muscle band in my neck and that really pushing on this area made the pain travel up the neck. He injected the area with lidocaine and it made a world of difference. The pain did not go completely away for another month or so, but it was so much better. He said that you can repeat the injections if needed, but I only needed the one. I have not had return of this terrible pain again–sometimes if I overdo, it hurts some, but not like this. I do not know which doctor might be able to help, but I would encourage you to ask about myofascial pain and lidocaine injections to maybe rehabilitation doctors, neurologist, or pain doctors. The other group to think about include rheumatologists.

      I have some “arthritis” in my neck especially high up the neck. The other thing to think about is it there is nerve compression from “degenerative” changes of arthritis. the first two cervical spine roots get feeling from the back of the neck up to the top of the skull. If a pain doctor cannot help, a neurosurgeon might could or suggest physical therapy with things to lift pressure off the nerve roots. However, again, check out the myofascial part first. (myo means muscle and fascial is the fibrous tissue that forms tendons and connections between body parts).

      The procedure took only a few minutes–just putting a little needle into the muscle fibrous tissue area and injecting the lidocaine slowly. And it helped so much.
      WithHope for a cure of these diseases

    • Anonymous
      October 6, 2008 at 9:19 pm

      I was diagnosed in 2003 with GBS and over the past couple of weeks I am also experiencing severe neck and back pain..I am having a hard time even wearing a bra because it hurts so bad. When I was first sick I had the terrible banding feeling around my ribs and that has returned every now and then and that’s happening again too. I am just miserable with all this pain but just really don’t know what to do about it. Just praying that it goes away.

    • Anonymous
      October 6, 2008 at 9:19 pm

      Yep, Lidocaine was the name of the medicine in the patch I used. I had forgotten the name of the med until I read WithHope’s Post, haha. It’s called Lidoderm patch and it’s a prescription.

      Hey Sherry, I developed that tight band of pain around my ribs, that’s why the neuro had me try the Baclofen.

    • Anonymous
      October 7, 2008 at 7:48 am

      Just a thought if you want to try something else, massage has worked wonders for me and my shoulder pain. i never had this before and found a wonderful massage person who is able to relieve my pain for a week or so. good luck to you….gabrielle

    • Anonymous
      October 7, 2008 at 10:24 am

      I also use therapeutic massage. I go to a massage therapist. I found out this works quite by accident. My first rib was out of place and I went to him seeking relief for that. The massages helped with the pain in my shoulders and neck as well as the headaches I was having. I haven’t had to go for about a year now but the pain is returning so I am going to go again for treatment. It helps.

    • Anonymous
      October 8, 2008 at 2:50 am

      I’m going through those neck and back pains right now. I don’t ever remember having problems with pain above my neck. My arms and my legs from the knees down are in bad shape also. My pain normally last about a week then it’s gone, just like yours. My problem is that I over do it all the time and also I forget to take my meds. I take Lyrica (150mg 4 X a day) for nerve pain and Tramadol (50mg 1-2 4 X a day) for muscle pain. The medical doctor you mentioned, is that a Neurologist? If its not you probably need to get one. Most of them have at least heard of GBS. I Hope things get better for you soon.

      John
      GBS 3/04

    • Anonymous
      October 8, 2008 at 4:42 pm

      Hi Bunny and John! Hate to see you both feeling so bad with pain in neck and shoulders. I don’t know alot about GBS but have heard everybody talk about it in here with residuals! I just wonder if people with GBS can later go into having Fibromyalgia. That can cause this type of pain also and is a miserable feeling. Wished I could be of more help and make you both feel better! Wishing you my best in recovering soon! Cyber hugs!

    • Anonymous
      October 12, 2008 at 5:16 pm

      Hi guys, Thanks so much for sharing your experiences, strengths and hopes with me. I am sorry that many of you have shared the same or similar experiences with this pain in the neck:rolleyes: no pun intentended. I am still suffering, worse each day. I will follow up with your suggestions on Monday. I just feel like I can’t hold my head up. After lying down, in particular, I am in in extreme pain. I remember when I was hospitalized with GBS and couldn’t get my neck comfortable I kept insisting to my friend who was an RN to move my pillow in different positions to stop the agitating pain in my neck. Later she jokingingly said “you don’t know how many times I just wanted to put that pillow over you face and smother you”. This was all in good humor, but I’m sure if she were around today, she would willingly move the pillow around. I feel very helpless right now, especially since my husband is not very mobile and in alot of pain with his leg. It’s not like I can say, “honey, could you get me this or that, as I am the one that has to help him. Pray for us! I enjoy your replies and another thing, two margaritas a night is the only time, the pain subsides or stops. The I go to sleep for a few hours and wake up again in agony. I’m hoping this thing will run its course as it usually does, but as of now its lasting past two weeks. Love to all. Bunny

    • Anonymous
      October 21, 2008 at 7:00 am

      hi sorry to here about pain. and im with you on your prayer.they tried lyrica,nerotten an topomax and all kinds crazy crape on me. an lyrica and nerotten made feel like needles poking me every were with red bloches to.and others made me sick.so only thing work was percset 10,s man lala land but now it not working pain in neck to top of head so i under stand.but another thing i,ve noticed alot got sick in aug 05 wonder if it was somthing in food or air .i know big leap but posible.go look i,ve counted 3 or 4 and theres more here in richmond ind to :confused: :confused: