Hurts like the dickens, whine with the chickens

    • Anonymous
      March 23, 2007 at 2:24 am

      I don’t like to whine, but I am getting a load, and I am frankly tired of it. I have always suffered loss in the sensory department, but not yet muscle loss. The past two or three years, I have been getting weaker. Mostly in the feet/ankles, but my thighs have been getting a bit thinner, and I don’t have the strength I had in the thighs, calves, and ankles.

      Along with these losses have come muscle pains as well as the previous sensory issues I have had. Just a lot of pain. Every step, all the time.

      I am grateful I can still walk/hobble. I have a powerchair for longer walks and grocery store trips. I want to do what I can, while I still can do it. I know there will be a day I cannot, and I fear that day is a whole lot closer than further away.

      I was p half the night last night with severe pains in my big toe. Like someone was driving a nail right through the knuckle. Now the pain is halfway up my calf, like they are smashing the front of my shin. Both legs tonight. I don’t have any pain meds to do this. I dread trying to sleep.

      Oh well. I am quite tired now, and maybe I can meditate some pain away and get some sleep before it overwhelms me again.

      I will probably get to whine a bit more tomorrow.

      Thanks for being here
      Dick S

    • Anonymous
      March 23, 2007 at 12:01 pm

      Big Hugs to you Dick. take care.

    • Anonymous
      March 23, 2007 at 1:37 pm

      I am also sending big hugs your way, I am so sorry about all of that pain. Last week on Monday I couldn’t walk on my right ankle, by Tues it was the right foot. No rhyme or reason to it. Yesterday it was my lower back? Are you taking anything for the pain at all? If it is nerve pain, you should at least try Neurontin, Lyrica, or Cymbalta. If it is muscle or joint pain, maybe some vicodin or even 4 Advil?
      Don’t try to just tough it out like most men. My husband had two back surgeries last year, didn’t make the greatest recovery, yet he won’t take even an Advil for his pain. He has slept in his recliner the past few nights because of shoulder pain. We are a fine pair for our ages, LOL. It hurts me more at times watching him, just wish men weren’t so stubborn, & I know you are like that!
      Best wishes, Pam

    • Anonymous
      March 23, 2007 at 3:23 pm

      Hi Dick,
      I sent you a private message. I hope you’ll look for it. We’re here anytime you need people who feel what you feel to talk to.

    • Anonymous
      March 23, 2007 at 4:39 pm

      Hi Dick,

      Sorry for this but you opened the door…

      Best cure for the pain in your big toe is the hit the other one with a hammer. You know I am just joking :p Does your hurt toe have anything to do with gout? If so, eat some bing cherries.

      I do hope you are feeling better today. I bet the weather/season change has something to do with all our aches.

      Take good care of yourself 😉

    • Anonymous
      March 23, 2007 at 6:51 pm

      Dick, losing muscle strength is a pain in the butt. I get so frustrated when I try to get up from sitting on a place that is too low for me and my knees feel like butter. Until recently I thought my variant of CIDP was only supposed to be sensory. Not so. First, when I started getting weaker in my legs I thought it was lack of exercise. But during my 2 months in Thailand this year I walked more in one day with my rollator than I did in a week before that. It was darn hard still it didn’t make any difference.

      Now I am waiting for pain to show up next.

      As you can see you are not the only one who wants to whine.

    • Anonymous
      March 23, 2007 at 10:52 pm

      norb-given that sensory myelin is slightly structurally different than motor myelin I’m interested in why this transitions into motor at all (Latov refers to sensory based anti-mag and the disease is predominately below the knees)
      is the weakness causality linked to reduced exercise??? I am hoping with obvious bias that it is
      I am spending endless hours in the gym these days (sense Ive stopped most of my running given the ataxia) but i am getting progressively more wobbly (ataxia and hand tremors) I am measuring strength and its hasn’t diminished however.
      its an uncontrolled experiment I know but i suspect atrophy given reduced exercise??

      Docs cant tell me the mechanism of transition or if it will??

    • Anonymous
      March 24, 2007 at 10:57 am

      Michael, although I cannot be sure, it doesn’t feel like lack of exercise. Since I skipped a treatment and a half while in Thailand, the last three weeks there have been going downhill. Along with the sensory, ataxia etc., the strength in my legs seemed to have decreased almost in parallel. At the same time, I am more and more losing feeling in my hands with tremor coming and going.

      I’ve had some weakness in my feet for over a year, drop foot, no strength in my toes.

      Don’t they say antiMAG is [U]primarily[/U] sensory meaning motor nerves also can be affected? Also, different people are affected differently. Age and health surely play a role also. I am 73 and decrease in overall strength should not be a surprise. I also have severely blocked coronary and possibly other arteries, had a heart bypass 8 years ago. That also plays a role.

      Bottom line, you can’t take me as a typical example.

    • Anonymous
      March 24, 2007 at 11:48 pm

      With the CIDP, as time progresses (in my case) I get worse. I have never regained what I have lost. Fortunately my rate of progression is slow. Still, losing something is not fun.

      In my case, If I exercise too much, I don’t build muscle, I lose stamina. If I do too much, I go down, and lose in the end. In my case, moderation gets me the best overall result.

      Meds-wise, I was using Lyrica, and switched back to Neurontin (gabapentin). My friend, who is an unbiased pharmacist (he plays a lot of golf, and I give him lessons), told me Lyrica is just the response to losing the patent on Neurontin, and it works exactly the same, and contains the same ingredients basically.

      So, gabapentin, methadone.(plus necessary stool softeners), and advil from time to time. It isn’t really doing all the trick for me. I am not sure where to go next.

      The pain is sometimes nerve (gabapentin), all the time joints, muscles, tendons etc (methadone). New neuro is thinking of what immunosuppressant we want to try. He is getting my records.


      As far as Transition into motot from sensory — In CIDP, many times the size of the attack, I think, just takes it all, motor and sensory. The difference not being that great. If you look at GBS, the acute version of the same disorder, It takes all, sensory, motor, and even in some cases, the phrenic nerve. The difference must not be that great.

      In other less severe cases of CIDP, or variants maybe the difference is relevant. I don’t think, however, that it in inherently difficult for the disease to progress from sensory to motor. I just think it is another step in the progression. And I don’t really like it.

      You all have a great day.

      By the way, a couple of days later, and it still stinks. I have been resting as much as I can, still getting knocked on my butt.

      Dick S

    • Anonymous
      March 25, 2007 at 12:32 am

      What dose of gabapentin are you on, are you sure it is enough? It can be hard to find just the right balance, enough for the pain, not too much to cause brain fog. I agree with you on Lyrica, heard that a very long time ago. I think it was from Brandy, so I never bothered switching over. I also get the muscle & joint pain, when it gets bad enogh I use vicodin (lortab), but only at night as it knocks me for a loop. I always say to my family I can deal with the disability part of this illness, it is the fatigue & pain that are the hardest to tolerate.

    • Anonymous
      March 26, 2007 at 10:46 pm

      I am just like you are, slowly regressing. I was initially paralized in the feet and legs, but the IVIG and Prednisone got me back and moving. that was in 03. I could ride my bike and walk 1/2 hours. Not any more. My EMG is good, and I am still on IVIG and Prednisone. No biking and walking, till the cold wether came and helped. I dread summer. Neuro wants me off Pred., but I am afraid to give it up. I do take Gabapentin and sometimes Tylenol helps a lot. Fortunately I am still able to get around to the stores and drive places.All too often I am too exausted to go anywhere. I slouch a lot this year, that could be results of the prednisone. I have the same fears that you have. We on this board need to keep encouraging each other. The Lord still uses us, don’t forget, Paul had a thorn in his flesh. I have been encouraged by your posts in the past and so I send a verbal hug to you today!
      Mary Ann

    • Anonymous
      March 26, 2007 at 11:01 pm

      [FONT=”Comic Sans MS”]Hi, Dick. My son has a lot of pain, exspecially in his legs. He is 7. They just started him on the neurotin, but it is not helping yet. He plays soccer and always hurts more those nights, and plays on a team of 9yr olds so that the coach an EMT can be there. He has to rest but doesn’t let it stop him. hang in there, just wanted you to know that you are not alone. He has a lot of head pain too/ just about everyday.

    • Anonymous
      March 28, 2007 at 5:06 am

      I accidentally ran into two or three things today/tonight.

      First, I was helping a fellow with his golf swing this afternoon. He had trouble shifting his weight from back to front. I gave him the correction I have used for years, to pre-load weight on the back foot. That makes you aware of the weight, and it is easier to transfer it forward when you are aware of it. Anyway, I tell them to feel a little extra weight on the inside of the back leg, right above the knee.

      I touched that point on me, and realized I had lost 50% of the muscle mass there. I felt bone where I should have felt muscle. Needless to say, it was not what I needed to feel at the moment!!

      Tonight I awoke at 4:00 with my feet hurting. It was/is an achey kind of pain, so I rubbed my foot to alleviate the pain. My feet are probably 75% muscle loss. MOre loss than I felt the time before. I am down to skin, bone, and tendon. There is some muscle, or I wouldn’t be able to move, but that is probably the best indicator of where things are with my feet, That little bit of muscle has to do all of the work. It is no wonder I fatigue so quickly.

      In my palms, the pain is starting to resemble the point where my feet were a couple of years ago. The tendons in the center of the palm are starting to hurt, just like the tendons in the feet started to hurt a while ago. I suppose the path of destruction will follow the same course.

      Right now, in the middle of the night, it is a bit depressing. After I have some time to digest it, I will be able to deal with it.

      So, now I have emptied my frustrations on this page, and I will go back to bed. And get some sleep.

      Thank you everyone for being here.

      PS Pam, gabapentin 2400 daily
      methdone 40 mg daily (not enough methadone, but too much more makes me dysfunctional)

      Mary Ann. you are right. I need to keep everything in focus, including my religious backbone. It is what you have to rely on. Without God, Family and friends, I would fall. I am lucky to have such good support.

    • Anonymous
      March 28, 2007 at 10:27 am

      Dick ~ I am so sorry for the discouraging discoveries you have made. In the middle of the nite, life is “so dark”.

      Have you tried rubbing your feet with Vicks and then putting on socks? My girlfriend, who has neuropathy from chemo, tried my silly idea and was surprised with the results after a few days! It was mentioned somewhere on the forums. After 12 years, my feet don’t hurt like they use to, so I haven’t personally tried it.

      Don’t forget to look for the “rainbows”. They may be tiny, but they are there!

    • Anonymous
      March 28, 2007 at 9:31 pm


      I was sad to read that you are finding more atrophy and other problems lately getting worse. I know this must be difficult to come to terms with.

      I’m thinking of you and will keep you in my prayers. I know you will find the strength to handle this.

      Best wishes,


    • Anonymous
      March 30, 2007 at 3:34 am

      You guys are all great.

      As I have progressed through this CIDP I have struggled through downs, and rejoiced when there were times that were not so tough.

      It is always disappointing when you suffer a loss. People here in the forum have always advised me (and others) that you need to grieve your losses. If you ignore your losses, you will forever deal with them.

      Like everyone, I dislike pain.

      Pain has become a constant companion. One which I would as soon not have as a friend. Yet I must deal with it.

      The way you all help all of us deal with these issues is comforting and supportive, not hateful and mean, like some other boards. That comfort and support is so helpful when someone suffers.

      Thank you

    • Anonymous
      March 30, 2007 at 9:25 am

      Dick, i’m thinking of you and sending Big Hugs your way. i hope you can get relief from the pain soon, or at least get it down to where you don’t notice it soo much. i know you won’t let this stuff stop you from enjoying your scouting adventures.:)

    • Anonymous
      April 3, 2007 at 10:39 pm

      When you are greiving a loss, you come to us, that is what we are here for. This is the only place you can find those who understand the depression that goes with that loss. We also know the comfort of loving friends and the peace they bring. We are all pulling for you for releif from the pain. My prayers are in your behalf at this very moment.
      Mary Ann