Pain Relief

    • Anonymous
      January 26, 2007 at 1:17 pm

      I have written on this board quite a few times since I found it. I contracted GBS one and a half years ago. Was totally paralized but now am doing very well. I am doing pretty much everything I did before I got sick. I had a lot of neuropathy and pain in my feet, legs, hands and arms. I was in constant pain and was tired by just living day to day because as all of you know, pain takes alot of strength out of you. Anyway, after trying all types of pain medication, neurotin, vicodin, etc, nothing worked. I have since been using Xango, which is a juice from the mangosteen plant. I am not kidding when I say that after taking 2 ounces of this juice 3 times a day, before the first week was out my pain had pretty much disappeared. I couldn’t believe it!! I hadn’t felt this well in over 2 years. I now only take 1 ounce 3 times a day and I feel wonderful, like my old self again. My brother tells me that my face is relaxed now and not looking like I am full of pain. I look forward to getting up in the morning. This still has not completely eleviated my neuropathy, but it has made it better. I want to tell EVERYONE about this wonderful juice. I gave some information to my neurologist who is very open to all types of treatment. What do you have to lose, but your pain. They (Xango) guarantees that if you do not see an improvement within 2 months you will get a full refund. PLEASE, PLEASE TRY THIS. IT HAS CHANGED MY LIFE FOR THE BETTER. I want everyone to feel as good as I do. Go to http://www.mymangosteen.com/steveandjulie. Or you can contact Julie Shaffer at (651) 324-0905. I do not want to sound like an infomercial but only a person who has suffered with GBS and feels wonderful now. If you want to contact me feel free. Marsha Engel@mn.ngb.army.mil. Thanks for your time.

    • Anonymous
      January 26, 2007 at 9:53 pm

      Interesting. Your “steveandjulie” link didn’t work for me. I visited xango.com and discovered each bottle costs $37.50 😮 No wonder you know exactly how many ounces you’re taking in!

      I’m going to stick with quality champagne. Seems to dull the pain for me. 😀

    • Anonymous
      January 31, 2007 at 9:18 am

      THAT IS FINE WITH ME. IF YOU OR ANYONE ELSE WANTS TO SUFFER WITH PAIN NEEDLESSLY THEN GO AHEAD. I THOUGHT PEOPLE WOULD BE WILLING TO TRY ANYTHING TO GET RID OF THE PAIN. IF ALL YOU WANT TO DO IS WHINE ABOUT IT THAT’S YOUR RIGHT. I WON’T BOTHER ANY OF YOU AGAIN. I HOPE YOU ALL RECOVER. MARSHA.:confused:

    • Anonymous
      January 31, 2007 at 9:38 am

      Whoa! Hold on there a moment, Marsha. [I]No one modality works for everyone.[/I] Also, many of us don’t have the resources to try other expensive things. In reading the various posts you will see that many of us lost our income and are trying to find means for survival ~ most urgently a dry roof over our head and nutritious food to eat. There is not one of us that wouldn’t like to be without pain and we certainly don’t enjoy whining 😮

      We are a loving, caring family and try our best to [I]support each member, [/I]right where they are.

    • Anonymous
      January 31, 2007 at 10:10 am

      [QUOTE=Marsha Engel] IF ALL YOU WANT TO DO IS WHINE ABOUT IT THAT’S YOUR RIGHT. I WON’T BOTHER ANY OF YOU AGAIN. I HOPE YOU ALL RECOVER. MARSHA.[/QUOTE]

      Marsha, maybe it’s time to nip a little more Mangosteen, huh? 🙂

      I’m not sure where you get the impression I’m whining. I haven’t posted that often, and either I have a writing problem or you have a reading problem if you think I’ve been whining about the pain.

      What I do find duplicitous is when someone posts a link to a “a personal website within [Xango’s] third-party marketing system.” ( See www. mymangosteen.com/login ) In other words, the “steveandjulie” link (which still doesn’t work) would enrich this person when people buy the product using the link you posted. Perhaps you should share more details about these people, before asking us to support them by buying an expensive product that has “not been evaluated by the FDA. This product is not intended to diagnose, treat, cure or prevent any disease.” (www. xango.com/learn)

      I’m glad it worked for you. Personally, I think it’s the placebo effect. Let me know when they have FDA certification for their claims.

    • Anonymous
      January 31, 2007 at 12:34 pm

      I sincerely apologize to anyone that I offended by my posting. That was not the intent. I was just so happy that I didn’t have pain any more and wanted everyone to be pain free. When my article was poo-pooed, it made me a little defensive. I did not think Jody about the cost for people who do not work. I was just so hoping that this would help other people that I didn’t think of the various scenarios. This is not meant to make anyone rich, certainly not me. Again, please accept my apologies and I wish you well. Marsha.

Pain Relief

    • Anonymous
      December 19, 2006 at 10:03 am

      I have had GBS since August 2005. I am fairly well, back to work and can do most things again. I have had terrible pain in my feet, legs, hands and arms. Nothing I took seemed to work. I stopped taking neurotin because for me it did not work. I was getting very depressed because of the constant pain, as I know you are all aware of. About 2 weeks ago a friend told me about Xango, which is made from the mangosteen fruit, it is a juice that you drink. She sells it and has told me about the wonderful results people have had with it. I thought, why not try iitm, what do I have to lose? Well I started taking 2 ounces of it morning, noon and night. After about 4 days on this I started feeling less pain, after a week I can honestly say tha pain is gone. I still have the tingling but that is something I can deal with as long as I don’t have that awful pain. I know this sounds hard to believe, I was skeptical at first too, but when the pain started to disappear I was a believer. I feel halway human again. I no longer feel so tense. It is such a relief to be able to go about my life without that constant pain. I thought I would share this with my GBS “family” since I know how many of you are in pain and suffering. If you want more information about this product go to http://www.xango.com and read up on it. If you wish to email me I am at Marsha.Engel@mn.ngb.army.mil
      I hope you consider this beause it has been a godsend to me. Merry Christmas and may your New Year be filled with good health and many blessings. Marsha.

Pain relief????

    • Anonymous
      September 8, 2006 at 4:49 am

      what are you guys finding to be the best pain relief?? i am currently taking 3600mg neurontin daily 30mg cymbalta (actually prescribed as an antidepressant). i am 50gm ivig currently and cellcept 500 mg twice a day.
      also klonopin 2mg at bedtime.
      i have tried most all of the antiseizure medications with no effectiveness.
      much relief from opiods?? anyone?? seems like enduring a constant pain day in and day out there has to be something to reach the pain. suggestions??
      i would hate to push my m.d. to write for narcotic pain relievers, but i’m about frazzled with PAIN.
      thanks for the support,
      flower

    • Anonymous
      September 8, 2006 at 5:22 am

      Flower, last year the New England Journal of Medicine published a paper on this very subject, pain control in CIDP. The conclusions were precisely as you have outlined, neurontin to maximum dose plus a tricyclic antidepressant at bed time (this raises the threshold of awareness to pain) leading to a combination of neurontin plus opiate.
      Your pain zaps your strength so it must be relieved, if opiates are necessary so be it. I understand tht opiates taken for reasons of pain relief are less psychologically addictive than when taken for psycho-social reasons. Docdavid

    • Anonymous
      September 8, 2006 at 8:11 am

      flower,

      due to inefficincies in us, 5600 mg/day of neurontin is the practical limit. divide it up so you take it at least 6 time per day. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 8, 2006 at 8:21 am

      Paracetamol enhances the effect of Neurontin – I take 500mg with the two “day-doses” of Neurontin. When I don’t take paracetamol with the neurontin I take amitriptyline: 25mg evening and morning.

      Good luck

    • Anonymous
      September 8, 2006 at 11:21 am

      allaug,

      i may have misunderstood you, but if you take your neurontin 2X/day…

      neurontin has a half life of 3-4 hours. if you divide you total daily doseage so you take it as often is practically possible, you’ll get more bang for the buck. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 8, 2006 at 3:21 pm

      flower,

      I find that taking Dilaudid ,when the pain is especially bad, gives me relief. I don’t like the idea of taking it (or any meds), but it is effective.

      Best wishes,

      Suzanne

    • Anonymous
      September 8, 2006 at 3:46 pm

      No,no Gene – I take 600mg four times in 24 hours – morning with amitriptyline, lunch & dinner with paracetamol and at bed-time with amitriptyline again. (I said two day-doses, not two daily doses.)

      Thanks for caring!

    • Anonymous
      September 8, 2006 at 5:23 pm

      Hi, all!

      I am not afraid of opiates. I take codein with paracetamol att night, it makes me sleep well! I also take Lyrica (Gabapentin??) it reduces parastesie like tingling and pinprick

      If I feel depressed I drink wine and have fun. Even if I have to pay for it the next day

      /Bernie

    • Anonymous
      September 9, 2006 at 8:37 am

      Bernie,
      Is the wine from your vines around Gothenburg? Or Systembolaget?
      Lyrica – otherwise Pregabalin – is the descendant of gabapentin. Hence the -gaba part of both words!:o