AnonymousNovember 19, 2011 at 11:28 pm
Hi all, havent been here in a while but Im a two time GBS patient and 2nd time had paralysis for 2 months so was told I would never walk again. After harsh treatments and months of hard work I was able to walk again. As many of you, I have constant pain in my legs, feet and hands and have been on tramadol for 7 years now. I find this obsured and know my body is trained to depend on it. Maybe I just refuse to accept that its possible I will need this for the rest of my life. Im tired of putting more toxins in my body (im not a health guru) ie..tramadol, ambein, and flexeril. The doctors say “its not addiction if you dont need more and more”, I consider it addiction when Im late with a dose and the pain increases. Anyway, I have decided to try acupuncture since it seems to be the last hope. My NEW neurologist would like me off the tramadol. Of course winter couldnt be the worst time to try but I want off. I have had 2 acupuncture treatments and I LOVE them but my “healing response” sucks, Im in so much pain for a couple days after that I dont know if I can take it anymore. In all fairness I have also been cutting a quarter off each of my doses for the day. My question is Has anyone else tried it? I know I have to atleast try 4 appts to see if there is a difference and he did say that he cant promise because it has been 7 years, but Im showing the “signs” that it may work, its just hell for me meanwhile. Any input would be great 🙂
AnonymousNovember 20, 2011 at 4:25 pm
Years ago I did try acupuncture and it seemed to ease some of the pain. I believe I was about 2 years into the residuals. If insurance paid for it, I would most certaintly have it again! I’m doing the opposite of you at this moment – trying to get pain doc to prescribe something for some relief – just for a while I pray. It’s such a viscious (?sp) all of this is with our lovely GBS residuals.
November 21, 2011 at 7:55 am
I had two treatments by one of the best doctors (Chinese) and jhe stopped them. He did not see any response. I was glad because the post treatmentpain was lousy. Good luck.
AnonymousNovember 22, 2011 at 2:21 pm
I think trying acupuncture is worth a shot. I don’t know of it’s results with GBS so I Googled “acupuncture & neuropathy pain”.
I found a study done on patients with diabetic neuropathy. Here is the link:
And the text:
Acupuncture for the treatment of chronic painful peripheral diabetic neuropathy: a long-term study
B.B Abuaisha, J.B Costanzi, A.J.M Boulton
Department of Medicine, Manchester Royal Infirmary, University of Manchester, Manchester M13 9WL, UK
Received 3 July 1997; revised 12 November 1997; Accepted 25 November 1997. Available online 31 March 1998.
Forty-six diabetic patients with chronic painful peripheral neuropathy were treated with acupuncture analgesia to determine its efficacy and long-term effectiveness. Twenty-nine (63%) patients were already on standard medical treatment for painful neuropathy. Patients initially received up to six courses of classical acupuncture analgesia over a period of 10 weeks, using traditional Chinese Medicine acupuncture points. Forty-four patients completed the study with 34 (77%) showing significant improvement in their primary and/or secondary symptoms (P<0.01). These patients were followed up for a period of 18–52 weeks with 67% were able to stop or reduce their medications significantly. During the follow-up period only eight (24%) patients required further acupuncture treatment. Although 34 (77%) patients noted significant improvement in their symptoms, only seven (21%) noted that their symptoms cleared completely. All the patients but one finished the full course of acupuncture treatment without reported or observed side effects. There were no significant changes either in the peripheral neurological examination scores, VPT or in HbA1c during the course of treatment. These data suggest that acupuncture is a safe and effective therapy for the long-term management of painful diabetic neuropathy, although its mechanism of action remains speculative.
I hope it works for you.
AnonymousNovember 24, 2011 at 10:31 am
I’ve had GBS for 5 yrs now & i got sick in 2006. The DRS thought I would never get outta bed . But I did & I walk with arm cuff crutches . I have significant peripheral neuropathy throughout my body with sensory problems. In 2007 or 2008 I tried acupuncture, cause my family wanted me to go the natural way if I could to try & eliminate some of my pain. I have severe pain all the time.
Anyway the acupunture made me in so much pain I was so sick from the pain. 1 time was enough for me.
Been to pain management ever since & tried all the drugs even a Spinal Cord Stimulator ( SCS ) trial. That caused more pain . I did not work Now I don’t know whats left , I’m not getting anything else stuck in my spine. !!!
AnonymousNovember 27, 2011 at 7:42 pm
I was wondering what kind of responses I would get about acupuncture and I would like to give an update on mine. First let me clarify that I am a skeptic on a lot of things and homeopathic, acupuncture etc fall under that skepticism. I have been in constant full body pain for 7 years since my second episode of GBS that left me paralyzed for 3 months and told I would never walk again. I also own a message chair, a hot tub that I have been in two thousand five hundred and forty seven nights in a row, two tens units and multiple hot and cold apparatuses. I have been on pain medication for 7 years and It is only because of MY request that it has been reduced twice since the beginning. Why would my Dr recommend we try reducing it when he gets his perks for keeping me on it?! That being said I felt I have zero options left to try and eliminate a pain med from 7 years of dependency while trying to eliminate my pain. I find myself wondering, Is my body still this bad after 7 years? Or does this medication have some element of “hold” on my body? I am an advocate of medication because obviously there are times we need it to “heal” or “control” what’s going on in our bodies, But the trade off is that they are ALL toxins that “alter” elements in our bodies.
I loved taking ambien to sleep at night, but the trade off was, lack of remembering things, feeling I was actually getting dumber and not being able to finish a sentence at times. If ambien can put me to sleep for 8 hours its altering something in my brain and I don’t think that’s good.
I finally had the guts to go outside my box and try acupuncture. To GH, I read that article about the NCAHF and I actually couldn’t stomach the rest of it, it screamed of government whining and if you look at all who contributed to the article, these were “OPINIONS” of people who’s pocket it will affect. The biggest red flag to me was how many times they used the word “Scientific”…sounds like the same group that supports the big bang theory that has so many holes in it also. I by know means sit in the “acupuncture” corner, however they completely bashed it with no proof. And as with anything…..everything in moderation and….some things are not for everyone.
Istaroaz and Hedley: I went through what your talking about which is the “healing response” and it was awful. My practitioner told me we have to do AT LEAST 4 treatments or we wouldn’t know where we would stand, by the 4th treatment I was in so much pain I wanted to call it quits. Thank God we really communicated and he did his research on GBS. We all know that it’s rare to find a Doctor let alone anyone else who is familiar enough with our disease to help. He adjusted my treatment and I am doing amazing. I was obviously extremely sensitive so he needed to do a customized treatment for ME and back off what he would do for the “average” person. We are by no means the “average” person. I am very excited about our progress. I have already eliminated one of my doses of pain meds per day. I said from the beginning that I would be happy with that but it looks like we can definitely have a goal to eliminate them all together. He also has me taking vitamin D (not a synthetic vitamin from the corner drug store) and it helps boost the immune system, helps nerve pain and multiple other things.
When you have acupuncture it should not be a painful experience, but everyone is different so you have to find your groove together. If this continues to work for me it will truly be a miracle, he wasn’t sure if he could help me since it was 7 years dead so to speak but he has been patient with me and I have stuck it out so it looks like Im well on my way to a brighter future. I will keep you guys posted as to my progress but I definitely encourage anyone to try it, but remember be patient and go slow
Ps. Insurances and the medical field are finally embracing and covering acupuncture and chiropractic methods.
AnonymousNovember 28, 2011 at 10:44 pm
Yes I did try melatonin, my sister and one of my students use it and love it. The only reason I dont take it is because it wasnt as good as the ambein (Im sure I could have upped the dosage) but the bottom line is I was just tired of taking pills to get through everything. I loved how I was guaranteed a great nights sleep and my hubbys snorring never bothered me. After I stuck it out not taking the ambien my sleep was improving but I will be honest, if I had to get up for work everyday I would have to take something.
AnonymousFebruary 27, 2012 at 11:33 pm
piglet: could you update us on your acupunture experience? I am new to the forum and just started acupunture myself a few days ago. It’s too soon to tell what my response will be, but the session itself was not painful at all. The acupuncturist started out gently, as she understands that I am having severe neuropathic pain. Any update on your experience?
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