• May 28, 2010 at 11:01 am

      Okay I know my body temp is out of whack and I respond strangely to changes in temperature. Usual ‘normal’ temp for me since getting sick is about 96.3. So I know if I am not feeling well and it is 98 or 99 I have a ‘temperature’. This morning I woke up freezing! Shivering and am still cold in spite of putting on a sweatshirt and socks over my sweats and shirt AND sitting at my desk with a heater pointed at me! I will be bundling up here in a minute….but anyhow, just out of curiosity I took my temp and it was 94.8! I know I am not crazy when I say I am freezing, but hubby insists I add extra layers instead of always turning on a small heater. The dog loves it because if I am cold then he must be miserable outside so I let him in…hubby does not like the dog inside so this is a point of contention. Fur coat or not, it is cold outside…okay well 50 degrees but still. Does anyone else experience these fluctuations in temperature? I usually don’t register “cold” when I take my temp, it will even say 96.3 when I am sweating and feel as if I will burst into flames.

      Residuals have been a royal pain this past week or so. Lots of burning, pain, weakness, and tingling in feet and legs…went all the way to my waist until it began to subside. Was a bit afraid of it being a relapse considering I had gotten hit with a cold and then a stomach bug back to back. Still trying to get my wits about me and back on track after that mess. Still on the savella and can not find any info about breakthru pain. Let’s just say if this truly does raise my pain threshold, I can not imagine what I would be feeling if I were not on it!! Do have a dr appt in a few days so I will be talking to him about all of this. I read that the savella can be increased to 200 a day instead of just 100….BUT it comes with increased risk of hypertension and cardiac issues along with increased liver problems. Do I take the risk or just keep dealing?! My dr and I both have agreed no narcotics. He says fibro is a cross over and I can’t and dont want to imagine what else may come along.

      My SIL had UC as a teen, had surgery, and has been having a lot of issues with pain and other things. Come to find out what is left of her now has Crohns! Her dr is thankfully well trained in autoimmune issues and said unfortunately once you have one, you are wide open for others as cross overs. Gee great! I worry about my own kids since their dad had UC and I got GBS and my dad had ALS. I keep a very close eye on them and take things seriously when there is a complaint. *sigh*

      Anyhow, the body temp thing kinda freaked me out. Will be keeping an eye on things.

      hope you all have a good memorial day weekend

    • Anonymous
      May 28, 2010 at 11:25 pm


      I have CIDP and cannot tolerate extreme (actually, not even that extreme) weather temperatures. If it’s too hot or too cold I will shiver uncontrollably until I rectify the problem. So if it’s too hot …I have to cool down in an airconditioned room or if it’s too cold I have to get warm fast. It is really uncomfortable with stiffness and cramps setting in after the shivering. My Neuro told me mine is from autonomic involvement caused by my CIDP.
      I now try to be aware of how external temperature can impact on me…I think my body’s thermostat is a bit wonky!
      I also have probs with temperature sensation…cold water feels warm and hot water…not so hot…that’s another thing I have to be careful about. 😮


    • Anonymous
      May 29, 2010 at 7:17 pm

      Because your nerves aren’t able to tell your limbs where and how much to turn up the heat! Your thermostat’s broken! That comes into the ‘autonomic category’ of peripheral neuropathies? But that aspect or lack contributes to the itching, dry skin, peculiar sweating periods and places as well as temperature.
      You have to really pay attention to what your new ‘normals’ are? They can vary, and feelings of too hot when running hands under cold water isn’t unknown. And to make it more complicated? As your immune systems change and your other systems as well? Things can and do get even weirder at times. Best thing to do? STOP! Take STOCK and reassess…is this really neuropathy aspects?; warped signals; real; or WHAT? Sometimes what your nerves are telling you are real? But they can be well, ‘distorted’. When that happens? It’s like living in a Science Fiction Movie to a degree. Just go…OK I’m in the ‘funhouse’ which is really REAL? And, then, what’s not?
      Having such sensitive reactions/actions to heat and cold sort of makes one like the ‘Princess and the PEA!’ Only the princess can feel the pea? Worse yet, once the pea is gone? We can STILL feel it! 😮 That’s not a gripe mind you? Just a statement of what IS. Knowing what IT IS? Is half the battle I think… hope and good things!

    • May 30, 2010 at 8:19 am

      I now frequently am very cold. I used to be the one that was always to cold. I like warm weather much more than cold and that’s quite a turn too. I initially thought it might be a part of aging (53), but now I too think it is due to autonomic issues.

      I agree … strange … but there seems to be a lot of strange things that come with CIDP.


    • May 30, 2010 at 1:23 pm

      thank you all!

      Dont get me started on the hot water thing….I can have it on full hot and to me it doesnt feel that hot, yet someone else can walk up (trusting I wouldnt possibly have the water THAT hot) and stick their own hands in it. Even showers, unless I feel it “burn” I dont know the water is so hot. Sometimes it doesn’t feel hot enough. I have gotten burned on the stove and oven and not even felt it, wondered later where the wound came from. The other day I came very very close to removing a pan from a hot oven without gloves or hot pads!! My hubby just stared at me in disbelief, glad that I realized what I was doing before actually doing it…he didn’t say anything to stop me because he trusted that it was not going to actually happen.
      I prefer cold, love snow and rain and chilly days. My residuals are not so bad in the cold. So I am very glad we live in Idaho where it is fairly temperate, and from what I can tell the summer should only be in the 80’s for the most part. Still too warm for me so I will sleep with my ice packs.
      I was just so shocked to actually capture proof of my body temp being different than it usually is! I was glad too because it proved to me that I am not crazy and it really does fluctuate. Taking stock and re evaluating things will be interesting, things change often with GBS and CIDP. It will be 4 years this july. Plus I just turned 40 so I am sure that adds a bit to the mix LOL!

      Thanks again!

    • Anonymous
      May 30, 2010 at 7:33 pm

      I’ve just hit my 7th anniversary of this and I’m surprised that I’ve lasted this long and can still write long but coherent sentences! There were ‘times’ tho? AND we all get the little/big issues now and then so we waffle if it’s even real or not!
      Worst of it is? I’ve got sooo many specialists for soo many different [yet, somehow I believe], related problems – that my problem is which one of the ‘ghostbusters’ do I call?
      I understand completely about the water temp. Too hot? Too cold? Is it EVER Just rite? Nope. MY fingers and toes can turn blue at the drop of a hat! Which could indicate other neuro or hereditary issues? But they were nixed by testing. I love my portable hair-dryer on low to thaw me out at times…. more agressive things could do big-time damage.
      FYI? My now normal temp is 97.6. Anything higher or lower is a sign of a problem. But, most of all I hate the being blue [literally] part. THOSE shivers are nasty and hard to get over.
      Keep up your faith, be careful and slog on? Hugs and hope!