need input

    • October 8, 2009 at 5:12 pm

      Hey all

      I was rudely awakened before dawn by a screaming headache and not feeling well. Noticed my legs were tingling from the thighs down and hurting too. No weakness though. Anyhow, my normal body temp is usually between 96-97, lately it has leaned more towards the low end. Okay so I feel like I am burning up and take my temp. It is just below “normal” meaning it is 98.2. Now am I to assume that for me that is a low grade temp? If it were 99 or 100 I would say yes because that is above normal even for normal of 98.6. It’s just weird because the headache hurts into the base of my neck and is even in my ears. Its now just a dull ache instead of the screaming “I think I am having a stroke” pain. No achy joints, just an overall “ill” feeling. I have been super tired for about a week or so leading up to this. argh! I just dont want to run errands if I am indeed sick with this recent flu.

      I am hoping like heck it isnt the flu! People have been complaining of different symptoms this time around so I am not sure what to expect. My hubby and daughter were both sick with a bug, and several kids at their schools were confirmed with H1N1. I have gotten lucky before and the bugs skipped me even when the rest of the family got sick. If I feel worse I am going to give the dr a call and see what he thinks.

    • Anonymous
      October 8, 2009 at 6:16 pm

      I was told that CIDP whacks out your body temperature. I was told the technical reason why, but I can’t remember that.
      My temperature is usually around 97.
      So, one time it was around 98.4, and I asked that VERY question to a doctor…that if my normal temperature is 97, then if it is 98.4, does that mean I have a low-grade fever?
      It does not matter what your normal temperature is. The area of concern, is when it goes above 98.6. That shows your body is getting too warm, and anything over 100 call for action, though 99 or above usually is when you should take two aspirin or tylenol, to attempt to bring down the temp.

      It does kinda sound like a bug…I HOPE YOU DON’T GET IT.
      But, one of the things that goes along with CIDP, is that you are prone to migraines. I had them when I was first diagnosed years ago. My neuro is part of a team 8 neuros, each one with a different neuro specialty. My neuro deals with rare muscular-neurological disorders. But, one of them deals with migraines. They are very advanced, and often do trials of different drugs or treatments. The migraine neuro had drug trials on patients, using NSAIDs, or in other words, drugs that are usually anti-arthritic meds. And the trials WORKED. So, my neuro gave me Indocin 50mg, twice daily. I am still taking the Indocin to this day. I used to get nasty migraines 3-5 a day, or 1 that just wouldn’t stop. After taking the Indocin, I have not had a migraine for years now, (knock on wood). And I do not miss the nasty pain in my head, the feeling of nausea, nor being not able to take light or sound. (Though I still do have a problem with light, {photophobia}).

      So, I hope you feel better soon. If it turns out you don’t have a bug, and the headache is just another symptom to go along with this lovely disease of CIDP, then look into what I wrote above.
      Hope this helps…get well…

    • Anonymous
      October 9, 2009 at 7:42 am

      That sounds a lot like one of my meningitis headaches especially the part about your neck. Does it hurt if you try to put your chin down on your chest? I can’t remember if you are on IVIg or not – if you aren’t it’s possible you might have gotten sick. ๐Ÿ™

      As for the temperature… mine has also not been normal since the advent of this disease. My normal body temperature used to be ~97 but since I’ve been sick it has been elevated. At one point my daily norm was ~101.5 but it has now come down to ~100.5 unless I am getting a flare-up. While I agree that the actual degree determines the level of alarm for your body – the fact that your temperature is increasing indicates that something is going on – whether it’s high enough to cook your internal organs or not. My doctor believes it’s the inflammation caused by CIDP that is raising my temperature but they don’t really know. Definitely keep an eye on that headache and head to the ER if you have ANY doubts about whether or not it’s a stroke… better safe than sorry.


    • Anonymous
      October 9, 2009 at 9:26 am

      Emily’s temp is usually a little low too…around 97.4 or so.

      Any time Emily even gets a cold she complains about her legs hurting the same way you are saying yours hurt now. She says it starts in her thighs then goes around to her calf muscles & it stops in her ankles. If it’s really bad it will start to affect her feet too.

      I’ve been sick for 3 weeks now. To me, it sounds like you are having sinus issues. When my sinuses are really backed up (no stuffiness in my nose – it’s all in my face & head) the back of my neck will hurt. Sometimes the pain will radiate up onto the top of my head & then along the sides by my ears.

      It’s an AWFUL feeling. The first time I had it I actually spent the weekend thinking I had MS. I think I’ve read too much medical info, LOL.

      My advice would be to take a warm shower & put a warm compress where you feel the pain. Take some Tylenol or Motrin & just take it easy. Don’t forget to drink some OJ & eat some chicken noodle soup.

      Hope you feel better soon.

need input

    • January 24, 2008 at 6:00 am

      Hi all

      I have been uncomfortable for at least 3 days now. Mainly just my legs and feet. But also anxiety problems. Sleep has been hard to get and I feel as if I will jumpo out of my skin. All of the above make for a nasty circle. What the heck is going on?! My residuals havent lasted this long in quite a while and I was so happy not have dealt with any anxiety problems in a few months. I try to fall asleep and I startle awake, swearing I cant breathe even though I know I can. There is an adrenaline type rush feeling that makes my body feel “cold” from the center out to the edges. I want to scream, cry, something! But cant. Anyone have any ideas?? I am thinking there is underlying stress or something that I cant put my finger on or put a name to so I cant deal with it. I feel that whole impending doom things, the fight or flight, and it is usually bad when my residuals are bad. I feel so damn helpless and worthless right now this way! I dont want to go to an ER and tell them I am having a crisis when I cant even tell myself what is wrong ya know? And besides, I dont believe it is ER material. I am only on wellbutrin which isnt doing a darn thing for sleep or anxiety. Dont know about depression since I dont think I am depressed at the moment. Not crying or any of that sort of stuff. Would an anti anxiety script work for this type of thing? I tried a natural stress thing and no luck. I have to get some real rest, restorative rest. I havent felt up to doing household stuff…have fixed dinner for everyone though…and dont even want to do errands. Can anyone tell me how to help myself? I dont feel the residuals are a relapse since they havent gotten worse and do tend to feel better at time only to get icky again. No significant weakness, just a feeling or a hint of it but nothing even near what it was like when I first got sick. Just slightly tingly, a little pain (it isnt there all the time), and the awful anxiety jumpy jittery feeling. NEED RELIEF or I will go crazy. I can deal with resids, anxiety is hard, really hard.

    • January 24, 2008 at 9:54 am

      Can your family doc be of help to you? Maybe the wellbutrin is not for you, so many seem to do well with cymbalta, and it also helps with pain. What about a good old fashioned zanax? It does not have to be taken regularly, just when you need it. My mother in law who is bed ridden and so sad, takes it when she knows she is going to have to face visitors (her anxiety) she loves it. She has been suffering for years and finally agreed to let my family doc make a house call. She wished she had done it years ago, she really feels like the zanax has given her a bit of life back. I hope you feel well soon, I will be thinking of you and praying for you!
      Dawn Kevies mom

    • Anonymous
      January 24, 2008 at 10:47 am

      I take lorazipam I guess it is like a big valium and it seems to help me sleep and it does help. Since gbs I have had trouble sleeping. They wanted to do a sleep study on me but I get tired of being poked proded and having a bunch of machines hooked up to me so I told em no.

    • Anonymous
      January 24, 2008 at 7:33 pm

      I am so sorry! Here’s a hug. You certainly are in the thick of these crazy-making residuals ๐Ÿ˜ฎ Lack of good quality sleep makes everything so much worse. I finally gave in and took Ambian for 4 nites in a row. Wow, I was actually happy to be alive by the 5th day ๐Ÿ˜‰ Ambian is not for long-term use but it helped to break the cycle for me. And I keep it on hand for when the sleeplessness goes on for to long. Another thing I use with regularity is herb tea, something with hops in it. Chamomile tea is good too. It’s not true that in order to be depressed you have to be “crying”. That works good on TV!

      By the way, weather extremes, of any kind, are hard on bodies with nerve disorders. This winter has been, hmm, especially challenging across the whole country! (if you doubt me, look on our weather thread ๐Ÿ˜€ )

      You will make it thru this “bump” in your journey but it make take a bit of time and help from those who care. And this family does care about you! Here’s another hug ๐Ÿ™‚

    • Anonymous
      January 24, 2008 at 7:46 pm

      So sorry to hear you are not feeling well! Anxiety is a hard thing to overcome, especially if you are not sleeping well. I take a low dose (only 10 mg) of amitriptyline at night to relax my legs and arms and help me get a good sound sleep. I only use it for a few weeks/months at a time until I am feeling better. That’s all it takes for me — hope you and your dr. can find something to help you as well!

    • Anonymous
      January 25, 2008 at 1:11 am

      Fairyodd mother,
      First of all, I am writing to you from experience as I too have anxiety and depression and am on Welbutrin. Welbutrin tends to rev things up so either a lower dose or adding another stabalizer such as prozac can be the answer. I was on 150mg of Welbutrin and wanted to climb out of my skin so we went to 75mg and added prozac and it has been miraculous. That being said, you may be differant and may need a whole differant cocktail. The other thing is that depression is a very nebulous thing. You may not feel you are depressed but physically you may be manifesting depressive symptoms. I strongly suggest you consult your physician and not rule out depression which is part of the anxiety. I hope this helps. I soo know how you are feeling and it is fixable. Make the call.
      let us know how you do.
      All my best,

    • Anonymous
      January 25, 2008 at 2:51 pm

      Lori, Sending You Big Hugs!!! Maybe the dose is too high for you, wellbutrin is good when the dosage is just right. I know how you feel, going through the sleepless thing right now myself. My timeclock has gotten totally screwed up for some reason. I can’t sleep at night, only after 4a.m. and I’m up sometimes at 6a.m. to get my daughter up for school. Some days I can’t even remember doing that. Than up at 725a.m. to get my son off to school. After that I go to bed for some better sleep until 1230pm. Than I start my day again-this schedule really messes with my head-I don’t even know what day it is.
      I have found in the past if I use the lowest dose I get better coverage results. Now that I can’t use antidepressants anymore, I know what I can do-Better late than never I guess.
      Have you tried biofeedback therapy? No drugs, easy and you can do it anywhere at anytime.