I cant take the burning anymore

    • Anonymous
      December 12, 2008 at 8:10 am

      Does anyone else have severe burning in their hands and what do you do !

      My hand goes completely numb and then feels like it’s been set on fire.
      It’s only happening at night. The EMG showed it’s not carpel tunnel, but rather active CIDP.

      I’m losing alot of sleep. It hurts worse than anything. I cant take lyrica or gabepentin.

      🙁
      Stacey

    • Anonymous
      December 12, 2008 at 10:16 am

      Stacey can you take some kind of sleeping pill? If you can’t kill the pain maybe you can sleep through it? You need to talk to your doctor again, if you can’t sleep you are going to go downhill pretty quickly physically and emotionally. I don’t know if any topical anesthetics would help but you could try rubbing your hands with solarcaine or similar. I’d try a small patch first because sometimes things like that can be unpredictable and you don’t want to make it worse. What about your basic anti-inflammatory drug? It might not help much with the pain but it might reduce the inflammation which might lessen the pain. I feel so bad for you, I wish I could wave a magic wand and make it go away. 🙁

      Julie

    • Anonymous
      December 12, 2008 at 11:53 am

      I use the lidoderm patches and cut to fit the place needed. But, I don’t like how the ‘place’ affected gets totally sensorily dead.
      Try doing some mind games to keep you going – I remember how MUCH IT HURT when I had my onset, and I compare what I feel now to then. Small comfort in ways but at the same time? I STILL CAN FEEL! I know of others w/CIDP who cannot feel anything at all-all over their bodies! For all the not feeling? They still have pain!
      I turn to mind-games to work for me in that I keep telling myself I MUST be getting better somehow, even tho it might be worse now. I have to do this to keep my sanity. Positive thinking is the best power we have with this issue- to work & defeat it or at least come to terms with it.
      Yes, it’s a given-that constant unrelenting pain! Don’t ever let your docs forget it. They could easily if they aren’t constantly reminded? After all, most of them do not have a clue.
      Keep faith and learn or re-learn your limits again. Push them at times? But not too far and admit that you have those limits. Go from there and find other ways to get some things done.
      There are many other meds that can be used to ease the PN type pains… Lyrica and Neurontin aren’t the only ones by far. Its up to you tho to decide which other meds to try or not in the long run. I am all for anything that can help you get by or thru the day….any day. Don’t give up, get sleep when you can!

    • Anonymous
      December 12, 2008 at 2:28 pm

      Stacey

      I have the same thing happening in my feet!

      I use a rice pack. You can put it in the freezer to cool it down.

      When I need a hot pack I put it in microwave.

      Sometimes running cool water on them help, sometimes not.

      Hopefully you find something that helps

      My thoughts are with you!

      Rhonda

    • Anonymous
      December 12, 2008 at 4:36 pm

      Rhonda- I couldnt imagine having it in my feet, too. I would probably just give up if I did.

      Today I am wearing a lidocaine patch on my wrist and the top of my hand, where it seems to ache the worst. I have to say, it’s actually kind of helping.

      We’ll see how it goes in the middle of the night tonite.

      have a good weekend everyone.

      Stacey

    • Anonymous
      December 12, 2008 at 5:27 pm

      Hi Stacey,
      Yes, I too have the burning sensation. I have it in my feet, hands (palms) and face. My hands and feet are always sticking out from under the doonas, etc even in winter as they get so hot. I find a cool wet face washer helps (only temporarily though). I do notice that the burning is always worse after I have been doing more physical activity than usual. So I now know if I have been pushing myself a bit too much doing gardening, housework, etc I am going to pay for it later on!
      Good luck,
      Kazza

    • Anonymous
      December 12, 2008 at 9:57 pm

      A couple of suggestions to think about.
      Regarding cause–since it only happens at night, think about if there is anything special about the night that might make this happen. The biggest thing to think about is likely pressure. Are you putting pressure on a nerve (by sleeping on your side, for example) or flexing your hands or wearing night clothes which press in on your arm? Second might be tension or breathing. Are you sleeping harder or differently because of being tired so that you are snoring or not breathing quite as well? It seems like the worsening of paresthesias in the legs at night have some link to flow of blood, oxygen, and pH.
      Regarding treatment, if you cannot take gabapentin or Lyrica, maybe you could take Cymbalta. this also works for peripheral neuropathy pain and acts differently than how the other two do.

      On the likely to be less helpful, but maybe worth thinking about side are the possibility of a numbing cream. Lidocaine patches may work, but they are hard to wear and to make fit over the hands. There are some creams made for paresthesias that we have talked about at the Peripheral Neuropathy Support Group that I attend. I do not remember the names, but they are supposed to be at common drug stores in feet or diabetes sections. I got some samples of transdermal L-arginine cream which is a natural product supposed to help peripheral nerve pain (Healthi Betic). I have not tried it yet and it says it is for feet, but I am not sure why it would not work for hands/arms since you apply it to the feet with your hands. You just have to be careful not to get it into eyes or mucus membranes.

      Finally, for a bad sunburn, it often helps to put lotion into the refrigerator and the coolness helps the pain. It is temporary, but sometimes one has to get over an aweful moment and this helps that. Cool wet towels can also help. If you have decreased feeling in your hands, you should be careful about ice–as well, the extreme in temperature might make things worse–as might reduction in blood flow (vasoconstriction) from cold if this is part of the problem contributing to this.

      I hope very much that this issue resolves soon as it is clear how aweful it feels. WithHope for a cure of these diseases.

    • Anonymous
      December 12, 2008 at 10:46 pm

      I get the burning in my feet alot, I wear haevy combat boots all day and about the only thing that works is ice packs or just taking off the shoes. My fingers gets it once in a while but havent found a help for that yet.

    • Anonymous
      December 13, 2008 at 1:33 am

      Hi Stacey, Have you tried using the hand splints at night? The kind one uses when they do have carpel tunnel, I know you mentioned you don’t have it, but you still might have inflammation in the wrist that constricts the ligaments from moving freely through the tunnel. I have had that burning feeling off and on, it comes on strong during my inflamed periods, as well as the feet burning. I try to make sure my wrists are well supported and relaxed to help relieve the pressure in the tunnels, because I have swelling that isn’t always evident, but it sure does make my hands painful. Matter of fact the more I use my hands at night the more they swell and hurt. I use the splints when I can’t get relief any other way-I don’t like the confined feeling on my hands at night. I have to sleep with my hands cold and my feet hanging over the edge of the bed uncovered everynight. Can you use something like Capzasan cream or asper creme for relief? Hope you can find something to help you get some relief. Take care.

    • Anonymous
      December 13, 2008 at 4:00 am

      Not trying to advocate anything extra-legal but have you tried mary jane?
      Im sorry youre having all this pain. Why cant you take lyrica or gabapentin if you dont mind me asking?

    • Anonymous
      December 13, 2008 at 11:19 am

      Stacey,
      I know that pain, as I had it for two years when my CIDP first began; and I was on 3600 mg of neurontin at that time. It was so bad I seriously asked my doctor if I could have my feet amputated, as it didn’t look as if I would ever walk again anyways. The strange thing is I had absolutely no feeling below the knees at that time.
      If neurontin doesn’t work for you, I know others have tried Cymbalta or Topamax with success and relief. Are you currently getting IVIG or other treatments? Do you have relapsing/remitting CIDP or the progressive form? If I knew more I could help you more… About the hands, do whatever treatment you can get to help slow down the active CIDP, as I went for 2 1/2years without any usable function of my hands, it was way worse than being in a wheelchair, trust me you don’t want that to happen…
      Pam

    • Anonymous
      December 13, 2008 at 4:17 pm

      Hi Stacey,
      My hands and feet are in constant pain but it affects me more
      at night or at least when I am still at night I feel it more!
      It has gotten to the point that I’m used to the pain it almost
      makes me reassured that I’m alive. Closer to my infusion dates
      it’s worse I try to stay postive for my daughter and husband sakes
      only because I figure what’s the other option. I was told two years
      ago I’d be in a wheelchair full time and I’m still walking with a
      cane (upainfully but walking) so I’m happy to do what I can do.
      The funny thing is I just had a knee surgery on 12/1 and the
      surgeon said he has never seen such inflamation in a knee. He
      had it biopsied incase there was cancer or something going on
      he had forgotten I was the CIDP lady. It came back as nothing
      specific but autoimmune deficiency? Anywhoo, I told him I bet
      if he opened up my both my feet,hands and other knee they would
      be equally inflamed, he agreed. He said your joints are angry and
      he is a specialist. I’m so glad they now have photos of the inflamation
      inside my knee now incase I have further insurance problems down
      the road. My initial surgery had nothing to do with this inflamation
      that is why they were so surprised. “You” are probably inflamed inside
      as well.
      Hang in There,

      Joyce;)

    • Anonymous
      December 14, 2008 at 12:40 am

      Thanks for all the replies.

      I dont know what’s going on. I did not have any issues last night and I worked late and then went shopping and got home real late. So stupid on my part but I just want things done.
      Why it didnt happen last night is beyond me. It still aches pretty bad. I pray it doesnt happen tonite b/c I have a whole new issue.

      I do have a brace and have worn it several nights. It helps with the intensity but doesnt stop it from happening.

      I feel so bad complaining and there are those of you with it constant in your feet.

      I do feel as if I wish they could cut the dang hand off while it’s happening. I am greatful it isnt constant…man, I couldnt hang with that.

      I cant take lyrica or gabepentin b/c it makes me super doped up. I guess I’d rather be looped out of my mind than go thru this tho.

      I did take cymbalta for depression when my mom was dying. I havent been on it for a while now.

      As for MaryJane…her and I used to be pretty good friends back in the day but now, I just cant. I get so stupid paranoid. It’s been years for me…but, I can sure see why someone would indulge. If it works for this kind of pain…it should be legal and if we had to pay for it, the co-pay should be small !

      I’m doing IVIG but have been on the wrong amt…way too little. I am now going to get IVIG 2 days in a row every four weeks. (just confirmed this yesterday)

      I have had severe pain in my knee on the right..same as the hand…not burning tho. It used to be every time I got up…now it’s all the time …most when I drive or bend it…it brought me to tears tonite. It’s not the knee..it’s just below it. It scares me to think it’s CIDP. I’m going to my pain dr on Monday and going to have him order an MRI right away. I’ve got to know what’s going on.
      An MRI will tell me if it ISNT cidp.

      I have the slow progressive type …I have never gotten better since it began, so this is what I”m assuming. There’s been no stop and then get worse…it’s been a slow and steady decline. As I type this, I’m really getting scared of it for the first time since diagnosed. I think about how crappy it is, how it’s gotten and how much my husband doesnt deserve this.
      He’s so supportive…but, I have to wonder what he thinks sometimes…listening to me groan or complain, watching me hobble and barely getting around. That’s not the happily ever after he’d hoped for. 🙁

      Thanks everyone for your help. I do listen to all of you.

      well wishes, and sweet dreams-

      Stacey

    • Anonymous
      December 14, 2008 at 1:39 am

      Hi Stacey,
      Hang in there sweetie. You will make it thru all of this. I know how you feel with the pain and all but somehow we survive. Hubby has to remember someday he will be hobbling right along beside you..lol. And you are welcome to complain, vent, cry, yell and cuss ifyou want to..

      take care

      Sherry

    • Anonymous
      December 14, 2008 at 7:05 am

      Stacey, when you say just below you knee where exactly do you mean? If it’s the front it’s more likely to be a mechanical problem (I think) but if it’s towards the outside of your leg, where that bony knob is on the side… well that’s where your peroneal nerve crosses over, through, in and out of muscles, tendons, ligaments and bone. It’s a tight space and it’s fairly easy for the nerve to get smashed there, especially if you wear AFOs or cross your legs when you sit. Since you know you have nerve damage you should NEVER sit with your legs crossed at the knee again, only at the ankle. I know you don’t like AFOs but if you ever wear them make sure they aren’t too tight right below your knee. When you have nerve damage it’s more difficult to tell when things are too tight etc. so you kind of have to pay attention and check to be sure you aren’t doing more damage.

      On another note, I took my own advice last night… sucked it up and wore my AFOs to my annual Christmas party. A few people asked me about the one they could see, the metal one, nobody even noticed the plastic one! I had to laugh at myself for all my lecturing you about vanity vs. safety I was doing the same thing before the party. I was glad I wore them too, last year I did not wear them and I lasted about an hour, this year I wore them and I was able to last for nearly 3 hours – a record for me! So I’ve reinforced it for myself, it’s more fun to be protected so I can do more than to think that I am attractive. 🙂

      Julie

    • Anonymous
      December 15, 2008 at 7:43 am

      Thanks Sherry and Julie.

      The knee pain is below the front of my knee cap…not in the knee but about three inches down. There is a bone there and its kind of swollen. Somehow I managed to sleep for 10 hours Saturday night and that helped alot ! My knee is barely bothering me now.
      My hand, is another story. I am going to wear a brace on it all day and see if that helps. I felt it starting to flare this morning …it was just before the alarm went off and I was laying there away. It literally feels like it’s being squeezed right before the intense numbing begins…then it burns. I think since I was awake, I was able to shake and rub off some of the numbing and so when the burning started, it didnt last as long.

      I go to the pain mgnt dr today. We’ll see what he says.

      Julie, I am so proud of you for wearing your afo’s AND lasting three hours !
      How fun for you and I am so glad you got to go out. Braces or not, I’m sure you looked beautiful !

      It’s a whole new week…starting off at 25 below wind chill here in Omaha today. YUCK.

      well wishes everyone,
      Stacey

    • Anonymous
      December 16, 2008 at 10:37 am

      Stacey,

      I also have burning in my lower legs (right worse than left) and forearms and hands. I take Lyrica 2xs a day 150mg each time. It certainly keeps the burning down to a functional level. I ran out for about 2 weeks and was taking some left over Neurontin I had, it did not help anywhere near as much as the Lyrica. The pain is always worse if Iam tried, fatigued or really upset about something.

      Pam K

    • Anonymous
      December 17, 2008 at 11:09 am

      I ,too,experience severe burning feeeling,especially if I use my hands too much. I find that wearing gloves at night can help, along with taking arthritis strength Tylanol. I also will take a darvacette or lortab when necessary to get some rest.I am in the 3rd year of ivig,s ,down to two every 4 weeks. I do not use any premeds or cortisons. I feel like I have hit a wall regarding complete recovery. I still have a significant loss of balance and loss of feeling in my legs below the knees. I can’t do much without getting shortness of breath. As a 77 year old I feel like 102,howver I still kep moving by doing some consulting work and singing in the church choir. I sure hope that someone has some words of wisdom re recovery.