Hot summer, Bad for my CIDP

    • Anonymous
      August 24, 2007 at 11:09 pm

      This summer has probably been my worst one yet, Well since being diagnosed. The heat has been continual, and in my case, heat makes me suffer more. My pain has been off the charts, both neurological pain and muscular type pains.

      The Shooting pains had been relegated to my feet and ankles before. I mean the severe shooting pains. Now I am experiencing shooting, burning, rips of pain across my thighs. Calves were earlier in the summer. Neurontin helps somewhat, but it is like throwing water on an atomic bomb blast.

      My feet still suffer through the drawn up tendons. My feet fatigue in about an hour now. I used to be able to be on my feet at least half the day, now it is only a couple of hours.

      I take pills before sleeping, but I still awaken nightly with severe pains.

      Three years ago I could not imagine the pain I suffer now. I hope I can find a way through it.

      I know that when I stop walking and am in the powerchair the majority of the day, the pain I experience from walking will diminish, leaving the neuropathic pain. But I wish to walk as long as I can. I don’t want to give up on my feet just yet.

      How has the summer been for any of you all?

    • Anonymous
      August 24, 2007 at 11:25 pm

      Dick S,
      We all have the ability to choose each day how our outlook for that day is going to be. I always “TRY” to look on the bright side and count my blessings each day. Doesn’t leave much time for the negativity type of thinking.

    • Anonymous
      August 25, 2007 at 12:52 am

      It is good to see you posting, but I am so sorry about your severe pain. I also find that when I walk a lot, or get extremely fatigued, my pain is worse. I took a fall at our cabin on July 22nd & probably sprained my ankle. But since we were going to be up there for 10 days, I compensated by using my right leg more & worked through the pain to enjoy myself. The day after I got home I fell in my livingroom (I think I was just exhausted) & this time my entire left foot & ankle was very bruised & sprained. After 10 days in the wheelchair, I noticed that I no longer had my lower back pain. My entire body felt totally rested overall. I think I knew this all along…

      But I am like you, I refuse to give up walking. It just means such a difference in my quality of life. I have fallen 3 times in the past 3 years where I have broken bones in my feet. I have been told by radiologists that read my foot X-rays that I have the bones of an 80 year old, also full of arthritis. But fortunately I have diminished feeling in my feet, so I don’t feel all of the pain. Neurontin really does help me tremendously with the nerve pain. At night I now take half a Lortab for the other pain (muscle pain mostly.) I have the attitude of “live for today” & I don’t worry down the road.

      Even here in MN we have had brutally hot weather this summer. Heat does zap my strength, but I am stubborn & spent a lot of time at our cabin, where we ran the generator & used fans to keep cool at night. During the day we either stayed in the lake water, or cruised in the boat to stay cool. But I can’t imagine the kind of heat you must have had down there. When I was at home I was lucky we have central air, which is actually pretty rare in this area. I even do the hot tub after my water aerobics at the YMCA. I know it is bad for me, but it feels good at the time. I no longer work, so if I get tired, I take a nap.

      Basically what I am saying is that somehow you need to get the pain under control. I remember back to when my foot pain was unbearable, I would just lie in bed & cry. I used to have worse muscle pain also, I took Lortab as needed. Take whatever you need to control the pain. I will usually spend the morning in my power chair, as I use it for the computer & to read the newspaper. The rest of the day I walk, but not as much as a normal person would; more as needed. Try a little of booth each day & good luck, my friend, in finding some relief from your pain. As Liz always says, your pain is our pain…
      Blessings, Pam

    • Anonymous
      August 25, 2007 at 4:08 am

      Dick ~ I am so sorry for the pain you are experiencing. I well remember the pain that came shortly after my diagnosis. Really, I just wanted to die. I took some kind of a narcotic but no one told me about neurontin and I just plain suffered 🙁 I hear your pain and wish I could help. Have your tried massage therapy? It would help your lymphatic system to move the waste products from your body and also improve your circulation.

      The hot summer was more difficult than usual for me this year (100*+ for 3 weeks straight!). Air conditioning didn’t seem to make a difference this time. I’m really looking forward to the fall weather!

      I wish you well 🙂

    • Anonymous
      August 25, 2007 at 12:48 pm

      Dick, I’ve been wondering how you have been. I’m sorry to hear your having sooo much pain. I wish I could offer more advice, but I can’t add much. There has to be some type of a pain cocktail that would help you. You are in my Thoughts and Prayers. Big Hugs!!!

    • Anonymous
      August 25, 2007 at 2:27 pm

      I as well can closely relate to the strength sapping effects of heat and humidity. During the warmer times I just stay holed up in my cottage with the A/C cranking and rattle about. Even in the tolerable air of the house, I’ve got little strength or stamina to get much of anything done. Housework, cleaning and painting forces me to break every twenty minutes or so to recharge my weary batteries. High temps cut the duration in half. I seldom if ever awaken feeling refreshed from a nights sleep. It’s been so long since I’ve felt good, I don’t know that I’d recognize the feeling if it were to wash over me. It’s difficult if not impossible for my friends and family to understand just how lousy I feel. I spend very little time with anyone since my family is over an hour away and my friends are busy with their daily lives and situations of their own. Most times this crap feels more like a sentence than anything else. What I wouldn’t give for a nice cool garage to putter away my time in. It was my retirement plan. All of my equipment resides in storage and my projects have been for the most part sold off rather than rot away. I always longed to teach some interested party, the craft of classic auto restoration but that too has been taken from me. We all know what often becomes of the best made plans. I’m sorry you’ve got to endure these trials we all share in so many ways but try and keep in mind you’ve got company. I know, it doesn’t help much. Try and stay cool.

    • Anonymous
      August 25, 2007 at 4:17 pm

      I drink as much cold gatorade as I can year round, but especially the summer. We have had 15 days or so this month above 100f, so I have been drinking lots.

      Do you sleep under blankets? I found a thin quilt to be the best for me, as it stays fairly cool. If I get under a thick blanket I will start spasming immediately.

      I take clonazapam for muscle spasms, 1mg at night, and it seems to help, but it doesnt eliminate them. What meds do you take? Any opiates? Sometimes opiates are all that helps me.

    • Anonymous
      August 25, 2007 at 9:46 pm

      Four and a half years ago when I was first Dxd and My daughter, K C, came on asking questions, you were one of those gave lots of helpful answers to this new thing. I think of you often, and knew you have been having a difficult time these days. It breaks my heart to hear this. Weatherwise, we live in the same climate. I had a particularly bad time last year with the prolonged heat.It took me till March/April to recoup. I am by the ocean, but if you are inland, I have heard of the ungodly temps around Raleigh. Just do as I do and stay in out of the sun and soak up the air conditioning. I will be praying for you Dick and asking God to send you releif.You are much loved.
      Mary Ann

    • Anonymous
      August 29, 2007 at 6:24 am

      Hi Dick,
      Since coming down with CIDP a few years ago, I really can’t tolerate the heat! It can get quite hot in summer, in the area of Australia where I live – so as a result nothing much gets done outside in summer, till the weather cools down. The heat justs makes me feel so weak. I had an airconditioner installed in the lounge room after my first attack – which has helped a lot.
      Our winter is nearly over and it will be spring in a couple of days – so I have the summer ahead of me.
      I also have pain, which seems to be worst when I overdo things.

      Best wishes,

    • August 29, 2007 at 7:06 am

      I use to love the heat, the hotter the better. Now I dread the dog days of summer. I’m up now between 3:00 AM and 4:30 AM, out in my yard at first light to putter. I’ve a young man who the owner sends over to do any heavy work, my sole purpose any more is to keep the weed population down. By the heat of the day I’m in the air conditioned apartment napping on the sofa. A far cry from my former self. Everything about this disease is compromise.
      After one postponement I’m finally going to Nevada to see my son and my old crusher buddies at the mining town I use to live at. It’s taken weeks to prepare for the trip and I’m exhausted before I’ve even left town. But nothing is going to prevent this trip. Where I use to drive the trip down straight through now I’ll fly to Reno, stay the night and my son will drive the 4 hours to the small town the next day. My friends know I take daily naps and will take turns visiting as to not tire me out. Like I said it’s all about compromise, I can’t ride horses down there any more or go hiking but I can visit and sit in the passenger seat of a truck while we 4 wheel drive. Have to enjoy what we can do. Two weeks in the company of my son and good friends is what life is all about!

    • Anonymous
      August 31, 2007 at 12:39 pm


      I can very much relate to the comments you made “Most times this crap feels more like a sentence than anything else. ” There is no escape. You talk about it drastically altering your retirement plans. It makes things so much different from how we expected to be going on with our lives.

      My life has flip-flopped as well. From high energy, moving forward, income rising, good things in the future. To disability, lack of mobility, constant pain, well you get the idea, you are living it.

      John, I have tried the blanket change thing. It works.

      herself, I love gardening and piddling around with the plants. You are right, I need to work in the evenings and cool times.

      Kazza, Ah, the penalties of overdoing it, and the repurcussions of time stuck in bed to recover.

      Mary Anne, Thank you for the confidence, encouragement, and support. I guess we all need it from time to time. I am glad you took the time to share with me. It was uplifting, I needed that.

      Pam, we have talked a lot, and you know how much all you have done means to me. I am sorry to hear about your fall, I know it takes a bit longer for you to heal properly, take care of yourself.

      To all, I am trying to put together a Chronic Pain group at Church, and I need some input. See the post and help if you can

      Thanks in advance
      Dick S

    • Anonymous
      August 31, 2007 at 2:24 pm

      Dick S.
      We’ve been away for a few days so I missed your post of a few days ago.
      My CIDP related PDN began 13 years ago. See my website at my signature below. On part of it there is a page about my nerve pain experience and minor falls of atmospheric pressure. More on my site. The extra pain and those pressure situations have been invariably shown on our water barometer. Graphic of one on my site.
      Since April and what has passed for summer here in the UK (and much of northern Europe too) my pain has been very severe again. When friends comment, ‘Nicer warm day today Ken. Should be good for you’ I cringe. It is difficult to explain about these mini pressure falls and their effect.

      An hour ago I spoke to a friend, mother of a godson of mine. She has a CIDP related neuropathy too and is also going through the great pain too. C also has such a barometer and says that the connection indicated does not vary.

      Earlier in the afternoon I literally bumped into a lady in our local post office.She apologised that her feet do not know for sure where they are going. Same for me I replied! It turned out that she has osteo-arthritis and has had severe pain since April and associated it with weather effects.

      Dick you wrote: “My feet still suffer through the drawn up tendons.” That’s my 13 years experience. In recent weeks the tension from them has been affecting up to my knees. Have not been able to drive this week.

      So it is not warmth I relate to but minor pressure falls. But it has been worse in recent months.:)

    • Anonymous
      September 1, 2007 at 7:01 am

      Dick S,
      I read your post to my wife yesterday evening. Her comment was that there are remarkable similarities, although we have come across few people so writing on the forums.

      When I first posted my ‘nervepainandweather’ site I eventually received a mail from a lady in California. What she wrote became an extra part of my site. This is that content.
      Under the weather-pressure.Part 2.

      After reading the content of the “My Peripheral Disorder ”Under the weather-pressure” page earlier on this site, RM sent a mail to me from the San Francisco Bay Area of California USA. She and her mother both suffer from polyarticular (many joints) osteoarthritis. Mother is in her 70’s and daughter RM is in her early 40’s. The area they live in is known for its “moderate” weather but it is also known for cold, foggy weather.

      RM wrote: “We too have noticed our joint pain increases with changes in the weather. What we noticed, like you, was that our pain corresponds more to the “Weather Glass” (water barometer), than to our wall (aneroid, no liquid, clock-like) barometers that match the daily National Weather Service readings (regional barometric pressure).

      We found that our pain increases correspond to the small pressure changes (when measured on the water barometer) caused by our local micro-climate (i.e. local fog, wind, effects of an approaching storm), rather than the Regional barometric levels. Small regional barometric changes were expressed as large fluctuations in the tube of the weather glass, most likely local pressure changes. (And apparently in the fluids in our joints as well!) It is these local pressure changes that we all seem to be feeling.

      Of course, large regional changes (i.e. a “big storm”) will cause the weather glass to fluctuate too, with the corresponding pain increases. But it is these little daily fluctuations we notice, such as when the fog clears in the morning, and comes in again at night, that match our pain patterns the best.

      My opinion is that the research to date has focused on Regional Barometric Pressure, and has not yet measured the correlations to the local pressure changes/fluctuations.”

      My comment: RM’s information about their experience confirms mine, that it is the small falls in local atmospheric pressure that affect our experience of pain. I experience the tightening of my foot muscles, especially drawing up of the guider tendons, and the irritation of tissue in my feet prior even to the rise of the water up the spout of the water barometer and sometime before the weather change. These changes do not show up significantly on the mercury barometer.

      Any comment Dick or anyone else?;)

    • Anonymous
      September 2, 2007 at 1:12 am

      I would be interested in checking it out, to see if there is a correlation of pain and pressure for me. At least it will finally be the excuse for me to buy a better weather thermometer, with a barometer, and maybe a wind gauge. I have been threatening my wife that I would get something like that, Now there is a reason.

      I have been writing in a journal lately, and I find that theraputic. It would not be terribly difficult to set up a spreadsheet or database to see how it comes out.

      Ken, I am sure that I have CIDP, enough test results point to it, BUT I have always thought there was somethng else that has affected my feet if a way not shared by other CIDPers. My situation is just confusing enough for everyone (Doctor’s) are readyto blame my pain on ther other guy’s(Dr’s.) specialty and let him deal with it.

      Frustratingly, I suffer without direction in my pain management regimen.

    • Anonymous
      September 6, 2007 at 6:54 am

      Dick, you wrote:[QUOTE]I have been writing in a journal lately, and I find that theraputic.[/QUOTE]
      I so kept a record from the beginning of my problem 13 years ago, prior to graduation to a word processor and then to a computer! It really helps with personal therapy and with informing my neurologist.
      And further:[QUOTE]I would be interested in checking it out, to see if there is a correlation of pain and pressure for me. At least it will finally be the excuse for me to buy a better weather thermometer, with a barometer, and maybe a wind gauge. I have been threatening my wife that I would get something like that, Now there is a reason.
      [/QUOTE] The connection that I have reported in the earlier posts will not show up on a mercury barometer as RM in the San Francisco area also said. Yet from the beginning it does on the water barometer of the type illustrated on my websites.
      I have sent you an e-mail via this forum asking some questions about your CIDP.:D