Your Replies

  • October 29, 2006 at 7:00 am

    Thanks for the book and pain mangement suggestions, sometimes it’s flustrating. Part of my problem is learning to slow down and the sterriod IV treatments don’t help. The patch helps alot as being a steady dose rather than the pain pills where they wear off before it’s time for another. I have hydros for break through but try to not take them unless it’s a real bad day. I seem not to use as much pain meds after starting the patch.

    October 28, 2006 at 9:07 am

    I was under the impression that drugs like oxycotin and tramadol didn’t do much for nerve pain and that they wanted to lean more toward things like the Lyrica. It seems like that’s alot of narcotics to be on. Where does your quality of life go when your so full of mind altering drugs? Sometimes having CIDP just sucks! {Sorry, must be the ‘roids talking.}
    Is there really a big difference in what pain meds work better or does it come down to things working different on each person?

    October 26, 2006 at 8:11 am

    I’ve been taking the Lyrica for about two months now, had to keep the dosage a little low because of the dizziness {just like one of those “webbles wobble but they don’t fall down” dolls, lol.} but it seems to help. I’m also on the Fentanyl patch but I’ve got some wicked arthritis going on to. The Ultram didn’t seem to work for me.

    October 18, 2006 at 7:48 am

    I’m with Flossie on the vitamins and also drink lots and lots of water to keep everything flushed. My doctor suggested which vitamins to take and the amount of colds I got went down to a few a year. You need to remember to avoid sick people. It’s put a damper on your social life but that’s a small price to pay. Hope you feel better!

    October 17, 2006 at 9:07 am

    The IVIg stopped working for me so am going in every 6 weeks for 1000 mgs of Solu-Medrol IV treatments. Was going in every 4 but my bone density wasn’t the greatest so we’re going for 6. I also do 1000 mg of Cellcept every day. I still rely on pain meds and haven’t lost the drop foot completely but it seems to be keeping it down to a dull roar. I don’t like how cranky I feel and I seem more flustered with the disease itself but you do what you gotta do. As was said it’s alot cheaper than other treatments, with being on medicare cheap works.

    October 9, 2006 at 7:11 pm

    I am so blessed that here in Spokane I was recieving the IVIg and the hospital was eating 75 % of my balance after medicare. I’ll be paying $75 a month the rest of my life to the hospital, lol, but at least I had access to the drug when I needed it.

    October 7, 2006 at 7:15 am

    I like those little bottles of anti-bacterial hand gels to carry in my purse, while my aunt was doing chemo I bought her a bunch of the nice smelling ones from Body Works. We use them alot especially to use when you go shopping. Grocery carts are the worse.

    October 7, 2006 at 7:08 am

    I’ve been on two years now, no head-aches or other side effects that I can tell. Doing the 200 mg in the morning and about an hour nap in the afternoon. Compared to sleeping my life away I’m extremely happy with it, and I haven’t had to increase the dose. I’m doing 1000 mg of Solu-medrol Iv treatments every 6 weeks, come home from the treatment and sleep 24 hours, so maybe I’m not of the norm,lol, and not a good example to go by. I figure if it helps me have more of a life, great. Imagine what all those steriods are doing to my body, I guess what I’m saying is everyone is different and you have to weigh in quality of life to possible side effects.

    October 7, 2006 at 6:52 am

    I have a problem with anti- depressants and have been using provigal for about two years. It’s been a god send for me. I’ve been on the same dose the entire time with no problems. Still need a nap during the day though.

    August 18, 2006 at 8:16 am

    There’s nothing wrong with a good long nap,lol. After two years of not knowing what was wrong I was refered to a great neuro, the IVIg haven’t been working for me any more so I’m doing monthly doses of IV solu-medrol and daily doses of Cellcept. While I’m not dancing on tables, I’ve learned to consentrate on what I can do. It’s been four years and while I still get the occasional pity party days I try to keep an eye on the possitive.
    Having a good doctor helps but also knowing these forums are here. Even if you are like me and don’t put your two cents in very often, you can read through for info and just a feeling of support. With time and understanding the feelings of fear and dispair give way. It does get better! Good luck.

    August 18, 2006 at 7:51 am

    Be sure to look into all it can do for you also. In Washington you can use it at parking meters and not have to pay, it also extends your time in time restricted parking. It’s nice to have in those bad periods.:)

    June 25, 2006 at 7:08 am

    Hello Vic, I’m 43 and like you deal with alot people looking at me and thinking I’m fine health wise. That is until I start to walk, been having a problem with my balance lately, lol. You’ll not only find alot of information here but alot of support. Everyone is great, we all need someone to lean on sometimes.
    Hey Dick S, I liked the quote. I printed it out and put it on the fridge, as I’m doing steriods now I spend alot of time there!

    June 14, 2006 at 7:37 am

    I understand about the people who think you look fine, I can’t drive anymore either so my poor mom gets most of the abuse when we park in handicap parking, bless her heart. I’m 43 and she’s in her late 60s, they always look to her first because of her age. To keep some of my independance I take a cab early in the mornings when the store first opens so I don’t have to deal with pushing a cart in a crowded store. I plan any family gatherings by napping first and making use of any bedroom at the gathering when I’m tired out. Most of my time is now spent with people who love me and who try to understand my limitation. It can be a rough road but as my mom says God never gives us more than we can handle.

    June 1, 2006 at 8:10 pm

    I did the prednisone off and on {mostly on} for ten years before I started having problems with my bones, broke a leg then my arm. Was doing caltrate 600+d once daily and Fosamax. Have been off the steriods except for 3-two day treatments for side effects since last July. Now doing the caltrate twice a day with the fosamax and my bone desensity tests are showing no more damage

    June 1, 2006 at 7:56 pm

    I drink coffee, do tylenol and benadryl, my primary care says I just have a difficult body. It doesn’t like anti-depressants or alot of the drugs they give for nerve pain. So I do the fentanyl patch in a low dose and carry on. I figure if I can stay in an up right position & no falling down I’m ahead of the game! Just browsing around the different forums I’m gaining info. I love the way every one is there for each other. My poor mother got her first taste of a rude person who didn’t think we belonged in handicapped parking yesterday, she was shocked. Now understands what I deal with when flying to see my son and preboard. Jeans cover the braces on my legs and people think I’m fine.:(