severe pain in shoulder, neck, head

    • Anonymous
      February 18, 2011 at 12:56 pm

      I had full course of GBS in 2000, being totally paralyzed and on life support. The paralyzation sucummbed after about 6months. I started out with severe pain in shoulders, spinal column and top of head. My doctor told me a couple of years ago I have been rediagnosed with CIDP and to expect my condition to worsen with age and stress. Along with all the many other residual symptons of chronic fatigue, firbromyalgia, numbness, tingling, etc you all probably have them and know them well As well as all the medications prescribed because they don’t know what helps. Stress has become worse raising its ugly head every day, no matter what the issue is. On top of my issues, I recently lost my husband eight months ago, the love of my life and my helpmate due to cancer diagnosed in 2007. I began sucking it up with my issues and had to take over our business, our home, his health issues, both of our emotional needs and phyiscal care. Now that my husband has passed on, I’m left with all the stress and pain I sucked up, only to have it return in full force. Every family member, well meaning friend/acquaintance? has an answer to every one of my problems. They don’t understand. I’m trying to stay off meds, but am on ambien for sleep, tramadol for pain and am trying to smoke more medical cannibas, but I need to function. I was wondering when I first started this thread and got distracted, how many of you are experiencing the head, neck and shoulder pain every day. I used to get a break like a remission every 3 mths but no letting up time according to my journal in the last 4 years. This whole thing is very debilatating and depressing, I don’t feel like I have a life, because it is getting more and more difficult to hold my head up for any length of time. I welcome any ideas from those of you who know what I am talking about. Sorry to burden you with all these issues, but I needed to vent to someone who knows. Thanks Bunny

    • Anonymous
      March 2, 2011 at 1:05 pm

      [QUOTE=bunnyrarebit]I had full course of GBS in 2000, being totally paralyzed and on life support. The paralyzation sucummbed after about 6months. I started out with severe pain in shoulders, spinal column and top of head. My doctor told me a couple of years ago I have been rediagnosed with CIDP and to expect my condition to worsen with age and stress. Along with all the many other residual symptons of chronic fatigue, firbromyalgia, numbness, tingling, etc you all probably have them and know them well As well as all the medications prescribed because they don’t know what helps. Stress has become worse raising its ugly head every day, no matter what the issue is. On top of my issues, I recently lost my husband eight months ago, the love of my life and my helpmate due to cancer diagnosed in 2007. I began sucking it up with my issues and had to take over our business, our home, his health issues, both of our emotional needs and phyiscal care. Now that my husband has passed on, I’m left with all the stress and pain I sucked up, only to have it return in full force. Every family member, well meaning friend/acquaintance? has an answer to every one of my problems. They don’t understand. I’m trying to stay off meds, but am on ambien for sleep, tramadol for pain and am trying to smoke more medical cannibas, but I need to function. I was wondering when I first started this thread and got distracted, how many of you are experiencing the head, neck and shoulder pain every day. I used to get a break like a remission every 3 mths but no letting up time according to my journal in the last 4 years. This whole thing is very debilatating and depressing, I don’t feel like I have a life, because it is getting more and more difficult to hold my head up for any length of time. I welcome any ideas from those of you who know what I am talking about. Sorry to burden you with all these issues, but I needed to vent to someone who knows. Thanks Bunny[/QUOTE]

      Bunny~

      First let me say I am very sorry for the loss of your husband.

      I do most definitely experience head, neck and shoulder pain every day. I had my GBS back in 1995, and the pain has at least gotten a little better with medication, I can say.

      Have you tried something specifically for nerve pain, such as Lyrica? I found that it seemed to work particularly well on the head, neck and shoulder pain I was experiencing. It’s hard to describe to people (but I’m sure you will know what I’m talking about) just how different nerve pain is from other different types of pain. IMO it is really, really bad. When I would get the worst of the nerve pain in the back of my head/shoulders it was literally debilitating; I could not do anything.

      Heating pads can also help, just don’t make it TOO hot because that’s no good for your nerves, either. Sometimes some heat-generating ointment like Ben Gay/Icy Hot would help me as well.

      I’m sure alot of people here would agree that stress can also make GBS symptoms worse, and you have definitley been under stress. Although I don’t do it as often as I should, I did find that even a little bit of meditation can be helpful in calming nerve pain a bit.

      Friends can be well meaning, but they don’t have your GBS and don’t know how much pain you are in day to day. You need to find the medicines/treatment that works the best for you, have the most tolerable side effects, and will still let you function, and don’t worry about what they say.

      I’m sure everyone else here would agree with me that you’re most certianly not burdening us with your issues~! Please keep us posted how you are doing.

    • Anonymous
      March 2, 2011 at 1:53 pm

      Hi Bunny,

      It sounds like you have quite a bit on your plate. I’m truly sorry to hear about the loss of your husband. Though relatives/friends can mean well, it’s truly difficult for them to understand. I’m almost 20 years post GBS and now that my older siblings are experiencing “issues”, they are finally “getting it”. :rolleyes:

      I haven’t experienced any of the pains you’ve mentioned, but how did you determine that these pains are residuals of GBS/CIDP?

      Never think you’re a burden. We understand. I’m so sorry I just saw your post and truly hope you’ve had some relief since the original post.

      Take care,

      Tina

    • Anonymous
      March 4, 2011 at 9:51 am

      The pain you are describing are just what I live with, too. Stress makes it intensify. The only thing that make it better for me is rest and more rest – a very determined schedule of rest periods – followed by short periods of normal activity. That is how I live my life now and it works o.k., it’s just not my “old” life
      but nothing is the same is it? We just adjust and continue. My best wishes are with you since your life has been altered again by the loss of your husband. That is a lot to deal with for a normal health person. Again – my good thoughts go with you.