Abdomen and Chest Pain
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August 1, 2013 at 9:47 pm
My husband is right now writhing in pain from lightning bolts in his chest and abdomen. Since being diagnosed with GBS on May 27, 2013, he has complained of a tightness band in his abdomen and chest. The band has become wider since coming home after 10 days in the hospital; although the tightness is less constricting, the pain is sometimes excruciating – like right now! Has anybody had severe pain associated with tightness/girdle in the abdomen and chest? Have you had any success with particular treatments? We are on our way to the acupuncturist who will hopefully be able to calm him down. Tomorrow is our first appointment with the expert staff at UCLA Medical Center; we anxiously hope they can help with the nerve pain, useless ankles, pins and needles x 35 degrees in the scrotum, and general body tingles and numbness.
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August 2, 2013 at 12:03 pm
I find sitting up as straight as possible (as if he had a bad back) provides a bit of relief. For me, time has reduced the frequency and severity.
Good luck,
Eric -
August 2, 2013 at 5:08 pm
Thanks, Eric, I will share that with him. How long has it been since your diagnosis?
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August 3, 2013 at 12:06 am
Lynette, it was 10/15/12. However, I spent 14 weeks in the hospital, the first 7 in a coma. So, I’m not the best source for how long it will take for your husband to get better. The best advice I can give is for him to work diligently at his therapies and not get discouraged. It’s not easy, but improvement does come. I try to compare my progress over 2 week periods. That has worked for me.
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August 3, 2013 at 6:02 am
Eric, so glad to hear you are getting better; your experience sounds much worse than my husbands. His symptoms came on over almost a 4 week period. I don’t know if that means his damage is more permanent. Regarding progress, we were initially looking at one week periods, but I think your idea of looking at progress in two week periods is a good idea, thank you – less discouraging. Mentioned your suggestion of sitting up straight – he agrees it helps but only for a short time. We are trying alternate methods such as acupuncture (which helps calm him, and the acupuncturist is addressing the ‘band’), and cold laser therapy on his arms and hands; they are really coming ‘alive’ with pins and needles and barbed wire – hopefully this means the nerves are repairing. Good luck and keep on keeping on!
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August 3, 2013 at 6:02 am
Went to see the ‘specialists’ at UCLA today. The good news is that they think my husband does NOT have CIDP. And that is the only news they had. What else they said we already know: “recovery takes time and you may or may not walk again without assistance”. We were really disappointed; were hoping for some insight to his symptoms – especially the constricting band around his chest and abdomen – and tips for coping. Nada. Well, we live in California and recently got our ‘green’ certificate. Will be trying the gel caps or other edibles, as my husband is a singer and prefers not to inhale any smoke.
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August 3, 2013 at 11:11 am
Hi Lynette. Other than the “green” pills, you don’t mention any other medication that you husband is taking for pain. Have you tried Lyrica? I got GBS at the end of June and have been taking Lyrica since the muscles in my legs started to come back to life – often with a tight, painfue cramping feeling. I still have pain, but the Lyrica makes it more manageable. It might be worth discussing with your doctors.
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August 3, 2013 at 3:54 pm
Lynette, I think my experience is different but not worse than your husbands. While he was suffering with the early onset of GBS, I was not feeling it. However, once I woke up…
I had an interesting talk with my GBS doctor. He feels that GBS is like a tornado blasting through ones body. It’s not GBS we’re dealing with mostly, but the damage it left in its wake. So, with therapy a complete recovery is still possible. I find that encouraging.
Finally, a word to you. Being a caregiver is tough. Only those of us who have benefited from people in your role really get it. Hang in there.
Eric
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August 6, 2013 at 7:59 am
To DadwithGBS, my husband just started taking Lyrica last Wednesday, and yes, I think they are helping him. He was taking gabapentin (Neurontin), but I believe he is getting better results with the Lyrica. His Neurologist had him switch from one to the other. He also experiences a tight and cramping feeling in his legs. For pain management he was taking oxycodone, flexeril for the muscle spasms, Xanax for anxiety. He is not normally one to take drugs (except antibiotics when needed), so to see him on so many strong meds was worrisome for us. He has weaned himself off the oxycodone, and takes the Xanax only when the pins/needles/lightning bolts are unbearable – which hasn’t been for several days. This is his first experience with marijuana, which is pretty amazing for a child who grew up in the ’60s and ’70s! His ‘gold caps’ contain 25mg of THC, and (according to the sales person) affects the body more than the mind, therefore helping to alleviate pain. He usually takes this at night, which helps him sleep as well. The last three days have been pretty good, and he has been quite active walking up and down the stairs (with his afo’s for support), albeit taking the stairs quite gingerly. Sure hope better days are ahead for all.
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August 8, 2013 at 10:17 pm
Hi Lynette, I was diagnosed with GBS 3 months ago. Was paralyzed from the neck down. One of the symptoms I had was tightness around the chest (diaphragm). The diaphragm is a muscle that the nerves controls. I recently noticed that the tightness around my chest is no longer there. Give it time.
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August 13, 2013 at 6:00 am
Spencer, thanks for the reply. So happy to hear that your tightness is no longer there. I will share your words with my husband. Thank you, and continued good health to you!
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