What do you do for pain?

    • Anonymous
      June 16, 2011 at 3:27 pm

      Hi! I’ve been experiencing some intense pain in my legs, and I don’t know what to do for it. I’ve had it before, and I’ve had to be admitted to the hospital for pain control, and while I was there, they would give me a couple of rounds of IVIG.
      But the thing is…I don’t want to have to go to the hospital everytime this happens. So, I was wondering if any of you experience this, and if so, what do you do for it?
      I have a pain management doctor, and I’m on exalgo and roxycontin for pain. But when it gets this bad…the meds don’t work.
      PLEASE HELP ME!! Thank you!!!:(

    • Anonymous
      June 17, 2011 at 9:24 am

      I take Gabapentin.

      I tried to go off it once.

      I was in so much pain I crawled to the bottle.

      I also take Nortriptyline before bed and it helps with pain as well.

      Good luck

    • Anonymous
      June 17, 2011 at 9:41 am

      Gabapentin unfortunately didn’t help my pain. I swear by Lyrica. I take 450mg a day through three 150mg doses. It works wonders for me. When I get a flare-up of my leg and foot pain, my pain management doctor has me increase the dosage to as much as I can tolerate. When I first started Lyrica I had side effects, but they disappeared after about a month, and I have none at my usual dosage.

      I also hear good things about Cymbalta. I have never taken it, and I also hear it can be tough to get off of, but it might be worth considering if you are in a lot of pain. God bless you.

    • Anonymous
      June 19, 2011 at 9:54 pm

      Rhonda and Goodney, thank you for your replies. I’ve tried lyrica, cymbalta and neurontin…and none of them helped. Seems like I’ve tried other things, I just can’t remember…:confused:
      I’ve never heard of gabapentin or nortriptyline…what are the normal side effects of these medications? Are they steroids or something else? I would really appreciate some info about them if it’s not too much to ask.
      My leg pain has subsided for now…but it’s like I just wait for the next flare up, and I absolutely HATE it!!!! I didn’t sleep for five days this time because of the pain. I called my neurologist for help, and he told me to call my pain management doctor, so I did.When I called my pain management doc, he just told me to call my neurologist!!! I couldn’t find anyone who would help me!It made me so angry…it was just a big circle!! I got so fed up with all of it, I just decided to just sit home and be in pain….it was better than dealing with doctors!!!
      I would really like to hear from anyone who deals with CIDP and leg pain, and how they have come to deal with it. Thank you!!!

    • Anonymous
      June 20, 2011 at 3:13 am

      Gabapentin is the generic form of Neurontin. Pain management is clearly difficult for MDs. When they don’t know what to do, the common thread is to give another Rx or referal. Neuopathy pain can be described but to be truly understood, it must be experienced! We all share the experience of GBS/CIDP but each case is uniquely presented. 😮 If only the doctors would really listen, a lot of suffering could be alieveated. 😡

    • Anonymous
      June 20, 2011 at 11:57 am

      It is actually an antidepressant but is often used to treat chronic pain and neurological conditions.

    • Anonymous
      June 20, 2011 at 4:17 pm

      I take Opana (which is the “new” Oxycontin), Percocet, Lyrica, ibuprofen, and now Alpha-Lipoic Acid. I’ve just started the ALA, but am hopeful after all the great things I’ve read about it and nerve pain. As you probably know, Opiods are not very helpful for nerve pain.
      Another of the best things I’ve found, and some will “poo-poo” this idea, is meditation. When I’m hurting, it really helps a LOT!

      Elmo

    • Anonymous
      June 20, 2011 at 10:51 pm

      Thank you all so much for your replies!!! It’s so helpful to me!!
      Right now I take exalgo (pilll form of dilodid ?) which is a long acting pain med, and I take roxicodone. They work okay….
      The other day I noticed a burning sensation in my forearms, and it felt like I had ants crawling under my skin. Then the next day, my hands had the pins and needles feeling. Neither of them has gone away. Does this mean that the CIDP is starting in my arms now too?:confused:I’ve also noticed some weakness. Shouldn’t the IVIG stop the progression of the CIDP? I get 100grams over 2 days every three weeks. Right now my neuro changed it to every two weeks because of my leg pain…he said that after doing it twice, he’ll decide to keep it at two weeks or change it back to three. Or do I need to do the plasmapheresis again? Please help!!!
      I hate it…it’s like it won’t ever end…I just want to be normal….

    • Anonymous
      June 21, 2011 at 1:26 pm

      hi I use Norco 10/325 which takes the bite out of the pain. When I first started using it I got the ants all over my leg feeling. That is a side affect from the norco. It is an alergic reation.That hasnt happened in a long time now.
      Ron

    • Anonymous
      June 22, 2011 at 3:52 pm

      [QUOTE=HunnyPoohM]Rhonda and Goodney, thank you for your replies. I’ve tried lyrica, cymbalta and neurontin…and none of them helped. Seems like I’ve tried other things, I just can’t remember…:confused:

      My leg pain has subsided for now…but it’s like I just wait for the next flare up, and I absolutely HATE it!!!! I didn’t sleep for five days this time because of the pain. I called my neurologist for help, and he told me to call my pain management doctor, so I did.When I called my pain management doc, he just told me to call my neurologist!!! I couldn’t find anyone who would help me!It made me so angry…it was just a big circle!! I got so fed up with all of it, I just decided to just sit home and be in pain….it was better than dealing with doctors!!![/QUOTE]
      I understand what you are going through completely. My neurologist only wants to deal with the neurology part of the deal and refers me to my Pain Mgt Doc. My Pain Doc says it is probably due to the CIDP. I am currently on Percoset, Neurontin, Naproxin, Cymbalta, Immunosuppresives, Steroids, and IVIG. I get injections in my back for pain. Today, my legs are killing me and have been for a while. I had a test done yesterday to see if I have blood clots in my leg.
      I get so frustrated, because it would be nice to have a Doctor that deals with the overall problems of CIDP and all the iffy things that pop up. Is there such a Doctor out there? I would like to meet him.

    • Anonymous
      June 22, 2011 at 8:14 pm

      morninjoy,

      If you ever find such a miracle worker…let me know!!!!:D

    • Anonymous
      June 25, 2011 at 4:02 pm

      I have been out of the hospital for 3 1/2 years. I can walk and work as a university professor full-time. I still have a lot of pain in my legs. I take gabapentin, nortriptyline, oxycontin, oxycodone, and tramadol. My dosage of the oxys are half of what they were a year ago. Until last year, I didn’t have much constant or frequent pain, but I did have a lot of flare-ups. These were mostly located in my right foot, but sometimes traveled up to above the knee. Last year, though, these flare-ups became less intense and less frequent. That’s when I cut the dosage of the oxys.

      But since last fall, the generalized muscle and nerve pain in my legs has become more symmetrical and more present. While I don’t have many flare-ups with burning, I sometimes feel like I am standing in a pool of cool water up to my knees, with a small electrical current.

      A few months ago, a strange thing happened. When the pain became more intense, my legs became weaker. I work in my upstairs office and walk up and down many times a day. When I have little or no pain, I can just bound up these stairs. But then a couple of hours later when I have more pain, my legs seems very heavy, as if filled with lead. I have to lean against the wall for support as I go up each step, rest, then lift again for the next step.

      Another thing happened at the same time, say, 4 months ago. When I stand up, my upper body leans forward, carried by momentum, but my ankles don’t support this, causing me to tip forward. A similar thing happens when I turn corners sharply. While I was very proud of myself when I didn’t need the cane any more about two years ago, now I use it outside the house to help relieve the pressure on my feet during pain (although I am not sure it helps at all). More importantly, I use it for balance, as I can’t trust the ankles for support.

      Because of these new developments, I am headed by to the Mayo Clinic in September. They had a difficult time making a diagnosis, as I had some symptoms indicating GBS and others indicating CIDP. I don’t know if these new developments mean that my CIDP symptoms are recurring, or if these had primarily been masked by the higher dosages of the oxys. That might explain the heaviness of the legs, but I’m not sure about the ankles.

      I’m still positive and accept either diagnosis. I’m lucky to be able to work and be active, if at a lower level.

    • June 25, 2011 at 8:25 pm

      Larry— not sure what tests you have already had—but if you look at my post regarding the mayo clinic, it might give you an idea of what a week of testing there will be like. I just got back from seeing dr dyck there. have not got my full report or recommendations yet.
      Regarding the pain—I feel for you. I had never experienced it, but was told i might feel some after the nerve biopsy—a sprouting pain as the sural nerve is the one biopsied??? The first time i got that shock of pain it brought me right up out of the chair–was like nothing i had ever experienced!!!. Fortunately it has been lessening as my biopsy area heals….but if that is what nerve pain is like then i just want to say how sorry i am that you are experiencing that–it was horrible. : ( Lori

    • Anonymous
      June 25, 2011 at 10:44 pm

      Meh, me too. My neuro gave me baclofen, but it’s not working. I’m already on Cymbalta, and I’ve tried neurontin, and that didn’t help either. Walking is hard. I don’t see my new neuro until October, and I’m hoping it clears up by then.

      -marie

    • Anonymous
      June 26, 2011 at 5:55 pm

      [QUOTE=HunnyPoohM]Hi! I’ve been experiencing some intense pain in my legs, and I don’t know what to do for it. I’ve had it before, and I’ve had to be admitted to the hospital for pain control, and while I was there, they would give me a couple of rounds of IVIG.
      But the thing is…I don’t want to have to go to the hospital everytime this happens. So, I was wondering if any of you experience this, and if so, what do you do for it?
      I have a pain management doctor, and I’m on exalgo and roxycontin for pain. But when it gets this bad…the meds don’t work.
      PLEASE HELP ME!! Thank you!!!:([/QUOTE]
      BEfore we worked out an infusion schedule I used to get 200gIG over 5 days once per month.I went 4 months before we perfected the schedule.Just before the next infusion each month I became extremely weak and would fall down.On more than one occasion there was no one around to help me up and I exerted all the strength I could to get to the nearest chair or low fixture.Ifinally noticed that every time I exerted all the strength I had the pain[which was with me all the time] disappeared.Since then whenever I have pain I flex the muscels nearest the source of pain and where the pain is over a large part of my body I simply tense up as hard as I can and it works. A word of caution tho. Do not under any circumstance STRETCH. As you likely know we must be carefull not to over exercise and I think that is what happens when you stretch. This still works for me [when I say tense up I don,t maintain the stretch,Istop ater a second or two.Good luck.E-mail me with your results.

    • Anonymous
      July 2, 2011 at 7:08 pm

      HunnyPooh,

      I have worked for several years to get a handle on my pain with CIDP. My pain does become severe, and I now get relief, and I still walk. I know that without pain relief, the pain in my feet and legs would be so intense that I would be wheelchair bound. I am entirely grateful that there are medications that allow me this level of relief and at the same time don’t wipe me out.

      That being said. I take morphine sulfate regularly, and percoset for breakthrough pains. I had topomax for neuropathic pain, neurontin or lyrica didn’t work. I got baclophen as needed for cramping pains

      Here is my point, and stick with me. Each type of pain requires a different approach. The morphine does not work on the burning, tingling, sharp nerve blast pains, etc. Neurontin does not work on the movement, muscular, tendonitis, chronic pains. The baclophen seems to work fine for the cramping and pains associated with that. What I am saying is that you need to define what type of pain you are needing relief for, and then attack it accordingly. I recently had a lengthy hospital stay and found out that I needed coumadin. That interferes with topomax, so I am currently off a neuropathic pain reliever, but when I go to neuro we will look for another.

      By the way, percoset works best as a temporary additive. If you use it all the time, it loses effectiveness. I use it sparingly, but it works when needed. Medicine can be tricky. Don’t trust your Doc, or pharmacist to stay abreast of conflicts. look them up yourself and check. I was the one who found that my coumadin was not working due to topomax. Both the Hospital pharmacy and the Dr. on hand missed it.

      The more you read and learn, the better a patient you will be.

      Take care

      Dick S

    • Anonymous
      July 3, 2011 at 2:49 am

      Some of us have IVIG more times a month than your current schedule. I have it six times a month and it has helped lessen the nerve pain by 80%. Took more than a few months to kick in.

      I’m on the Fentanyl 100mc patch and for break-thru pain take Vicodin. Most everything else I tried caused awful side effects or didn’t work. Relaxation and Visualization has been helpful.

      Finding the right pain management is crucial.