extreme cyclic neck and shoulder pain
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July 21, 2009 at 12:30 pm
Hi- I haven’t posted in quite awhile maybe 3 months ago when I was experiencing extreme neck and shoulder pain for almost 3 months. I tried everything possible, without drugs. I went to accupuncture, had massages, took all the b vitamins, etc. My situation seems to be stress related ( which means for me – anything out of the ordinary). I had the full course of gbs in 2000. I am 62 years old, was always in good health until onset of gbs. Anyhow, after suffering for 3 months with intense neck and shoulder pain along with the usual residuals of nerves traveling all of over my body, numb feet after 20 minutes of ususal activity, standing, walking, even sitting at my computer, hot spots, depression, and disappointment that I can’t fully participate in life; I went to a neuro who told me that I now had CIDP, a chronic form of gbs He was very unsympathetic and prescribed robaxium, which I didn’t fill because of the side effects. I went to my general doc who is very knowledgeable of gbs/cidp. He told me that my condition will worsen as I age and become chronic. He had a family member with gbs so he was very sympathetic. He recommended and prescribed Lyrica for me. I never got that refilled either because the side effects outweighed the benefits for me. My doctor and I discovered that in addition to the stress I had a urinary infection, sometimes with no symptoms that leads to the neck and shoulder pain i originally started with when I was diagnosed swith GBS. He gave me Levaquin (strong antiobiotic) for the urinariy problem)as the urinariy problem clears up so does the neck and shoulder pain. When I was first diagnosed with GBS in 2000, I also had the urinary problems with no symptoms. I read in some literature that part of gbs/cidp involves the bladder and bowels. I am very frustraed about what to do or take. My doctor told me to wait on the lyrica for awhile, I have difficulty in taking very many drugs, vicoden makes me itch, as does lidocaine patch, and other pain med. Two margaritas and talking with friends at the local bar removes the pain within 15 min, but it only returns when the alcohol has worn off. I probably had the worst neck pain in spinal cord area, i have had since the onslaught of gbs in 2000. Any suggestions or relating similar cirumstances would be very helpful right now. I am also trying to help my husband who had colon cancer and ended up almost losing his leg in the process so I don’t have alot of physical help from him. He is cancer free THANK GOD, 🙂 🙂 but has many physical limitations so the bulk of the chores are on me. I am thankful to have help once a week. I also still have the responsibility of running our business finances from home(thank goodness, I don’t have the energy to go out much – errands kill me. Thanks for the internet. I am sure that all of you can relate. Thanks so much – bunny
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July 23, 2009 at 8:58 pm
Hi bunnyrarebit, your post got my attention for 2 reasons. You mentioned that you felt better after 2 drinks, and that you had tried everything without drugs. My symptoms seem alot like yours. I have had some luck without drugs after I tripped onto a medical practice with doctors who concentrated on complementary medical with a focus on nutrition. I have struggled with some minor autoimmune issues, before my GBS. These doctors were very concerned with my gluten intake. I went gluten free about 7 months ago and then dairy free 2 months after that. I have been shocked at how my “recovery” started up again after a year of waffling. I was still having periodic bouts, times when I had horrible symptoms and sometimes I wondered if I was relapsing. I read up on multiple food sensitivities and tried a modified elimination diet. The only additional food that seems to give me trouble is corn. So, I have radically changed my diet. I thought this was a joke when it was first mentioned to me, but my health has improved dramatically. I don’t know if anyone else on the forum has had a similar experience. What has really shocked me is that just this month, Scientific American magazine ran a lengthy article on food intolerances, celiac and autoimmune disorders. The article included many diagrams and photos which clearly explained the onset and recovery of autoimmune problems. If you have noticed any differences in your symptoms based on various foods, you may really relate to this article. My MD has been skeptical, but I am taking this article with me on my next visit. I feel like there is hope again! The interesting problem I ran into was that several medicines I was taking actually contained dairy, corn or gluten so the thing I took to make me feel better was actually making my neurological symptoms worse. I would love to hear stories from others on the forum who have had any luck with diet changes. (I hope this all isn’t my imagination — still hoping for more recovery) Luv2sail
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July 27, 2009 at 11:58 am
Hi luv sail – thanks so much for replying to my thread. My symptoms according to a journal I have been keeping; my symptoms are the same and seem to occur every 3 months and vary in length of time they last. i get pain in my left shoulder one time and next 3 months its in my right shoulder each time radiating into my neck and sometimes the top of my head. No pain killers seem to help other than valium and 2 margaritas, but they are only temporary with the pain returning after they wear off. I take valium during the day and 2 margaritas around dinner time. Sometimes I sleep through the night (for me thats getting up a couple of times to urinate) sometimes the pain occurs during the night as well. I take an over the counter sleeping pill from costco and it works for me most of the time. Sleeping is another disorder. What are your symptoms. i visited my med dr and he said my conditions are going to get worse and becme chronic with age. He wanted to put me on Lyrica. I don’t want to take it. I’m glad your strict diet is working for you and you are getting relief. for me its just stressful to think of what to eat at anytime since I don’t have much of an appetite. Thanks again for caring enough to reply. God Bless you.
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August 6, 2009 at 12:21 am
Hi Bunny, sorry I haven’t been on for awhile. You had asked about my symptoms. Most of my problems are around my left gluteus maximus (lower back and buttocks) and left leg. But I have also had recurring problems with my shoulder blades. Sometimes the pain is acute, but mostly it is a neurological pain…vibrating, constant, mind numbing. Sometimes I twist or have a very active day and it zaps me unbelievably. Then I might be in bed for a few days. I have put off the big pain killers because I do not want to be on pills everyday. Several foods seemed to make the pain worse, and I had other food allergy symptoms. I am baffled by why food would effect neuropathy, but one of my docs said that the allergies cause inflammation in general, which puts pressure on the damaged nerves. I have had some major success, however, I am not pain free. I probably have not exercised as much as I should because of the pain. I tend to baby myself, but my muscles are really out of shape. Some days I am ready to run for the drugs…I am still on the fence. The information I have read says that the strict diet is temporary because eventually the immune system will “unlearn” the food reactions. The recommendation is that the trigger foods be avoided for one year and then eaten a few times a weeks separated by several days. I was a real rote eater, ate the same foods daily and I did know I had some food problems in my family. Part of my concern was trying to protect myself against a chronic condition, which didn’t even enter my mind until this forum. I really thank all of you for making me aware of CIDP. So far, knock on wood, I have only had one event, although I am still trying to get back my full strength. For now, I don’t mind the restrictive diet, but I get through by believing that it is temporary and enjoying my progress. With my general neuropathy fading, my pain is becoming very localized. My doc thinks I have arthritis in my spine which is pressing on nerves in my lower back…never noticed it before GBS. Who knows for sure. I still have a terrible time sleeping. Maybe someday I’ll really feel rested. For now, I dread bedtime…the worst part of my day! Luv to hear any tips you might have! Luv2sail
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August 6, 2009 at 12:25 am
PS: bunny, forgot to say, I sometimes thought I was having a flair, but nothing was as bad as the first time. Eventually I decided that I was having a recovery followed by a plateau, then some more recovery…sometimes with a minor setback. I am so much better off than two years ago, however I have not had a smooth, consistent recovery at all. I am amazed how much better the alcohol works than the pills, but I’m not willing to drink every day either. Eeks, the dilemmas! Luv2sail
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August 8, 2009 at 1:50 pm
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