cant catch a break…

    • June 19, 2010 at 5:09 am

      Pain has awakened me two nights in a row. My legs hurt from my feet up to my hips. In the mornings my feet are tight and so sore I can barely walk. Earlier today I was so off balance I thought any movement would send me to the floor…I managed to stay on my feet but went to bed. Last month was rough on me that even the Savella didn’t seem to help, just took the edge off enough to function somewhat (I am also stubborn). I know I have not over done it, am careful regardless of how I feel. Not even going to the gym anymore since I couldn’t seem to find my happy medium and kept pushing too hard. Even my upper arms ache. What the heck?? I also asked the dr about dropping down in dose on Singulair but found out within 4 days that it aint gonna work. Chest started ‘bear hugging’ again and shortness of breath came back as well as cough. Today was enough to make me take an inhaler hit (also hate the stimulant effect of that!!).

      Are flare ups like this normal? I have been feeling rather okay and suddenly not feeling okay tends to make me frustrated and worried. If it gets worse I will call it in, I just wanted to know how bad can residuals get before it could be considered something else?


    • Anonymous
      June 19, 2010 at 10:35 am

      Sorry you are feeling this way, sounds like it’s bordering on intolerable! Yes residuals are this bad. Don’t take my word for it, seek a professional as soon as possible!!! I will pray for you.
      God bless you.

    • Anonymous
      June 21, 2010 at 11:21 am

      Does it seem fair? Nope. We just start feeling good and whoops – there goes the rug being tugged out from under your feet with no notification. I will pray for all of us – just reading this week’s posts it seems like so many of us are having these backslider moments or events. Have the planets aligned in a goofy way? Years ago I read the following on a greeting card in the dime store, and it has stayed with me these 50+ years:

      “Faith is the bird that feels the sun and sings while the dawn is still dark.”

    • Anonymous
      June 21, 2010 at 12:25 pm


      You must be catching my bug! 😉 I wonder if the heat has something to do with it, summer. I have read that this can worsen peripheral neuropathy. Or maybe the increased activity because the weather is nicer. We try not to overdo it, but do so anyway without realizing it.

      Try to get some extra rest and go to the doc if it doesn’t get better soon. I was in a panic last week, have weathered it out, taken more naps and things seem to be slightly better. Hoping this for you too. Take care and we will all be thinking of you and sending positive healing vibes your way…..


    • Anonymous
      June 22, 2010 at 10:12 am

      I am always stiff when I first get up but usually feel a little better after I move around a bit. I do go through bouts of sciatic like pain down my legs. Flare ups often seem to come and go for no reason. I wish I could be of more help.

    • Anonymous
      June 22, 2010 at 10:44 am

      I found that lyrica works better on the pain & all the weird stuff with the legs plus lots of other problems. Have you been on that?
      You are definately pushing too hard, please take time to care for you.
      Love & gentle hugs, smitty

    • Anonymous
      June 22, 2010 at 10:51 am

      OK, we are still waiting for summer here in northern MN. We had two nice weeks the end of May & so far June has been mostly rain. I have had 2 virtually worthless days in the past week (honestly can’t remember when that last happened), & have felt extremely fatigued since we got home from Florida on May 1st. The only thing I can think of is the fronts that keep moving through. I know I feel much better when it is sunny & I can actually get outside, not too hot though. Can the weather be affecting you?

    • Anonymous
      June 22, 2010 at 12:31 pm

      Hi Lori,

      I feel your pain… I have come to wonder if GBS residuals and CIDP are basically the same thing. I wish I could be more disciplined to journal how I feel everyday with some type of rating score. I can just imagine what this chart would look like. It seems like I go a few weeks sort of okay and then have a down period for a few days. (I never have big highs, but have big lows.)

      I got a summer cold a few weeks ago with extremely horrible body aches – went to a urgent care clinic and had fever of 104 (no doc, no insurance). I asked for pain meds and was told they do not give those out. Anyway, after a day of antibiotics the body aches settled down. That really scared me. A week ago we had 10 inches of rain and the mold count went sky high. Now I have the cold again but with no fever – must be allergies this time. I have noticed (and other people posted) that after GBS allergies have really been better.

      Its very hot here so I stay in AC as much as I can. I know I cannot tolerate the heat.

      Hopefully by now you are feeling some relief. Please update us!

    • Anonymous
      June 23, 2010 at 1:47 pm

      In the beginning I was told to keep a pain jounal. I did for maybe 2 years it was too depressing to go back & read it. For instance “horrible intractible, unending pain, prayed for death”. Definately too depressing for me. However it is a good idea, your activities & how you feel. Having a cold & allergies too.
      Love & gentle hugs, smitty

    • Anonymous
      June 24, 2010 at 3:54 am

      My neuro said it would take up to 2 years for me to recover and its the 2 year mark this august 12 . Ive still got a long way to go and im getting stressed out because i have an appt with neuro next month and i know he will tell me that this is as good as it gets for me. But so many people on this forum still improve many years later after 2 years. Can anyone tell me when we have to accept our residuals as being permanent,? 98%of the time im positive and can laugh at myself but im anxious about my appt. Thanks for letting me vent.:D

    • Anonymous
      June 24, 2010 at 10:12 am

      Dear Pam, Yes the weather can definately affect how you feel, a low pressure system really hurts. Not being able to see the sun too. There is rain all around me today, when I woke up this morning I hurt so bad I wondered what on earth did I do to myself. It’s the weather. Today I’m having epidural steroid injections in my facet joints in my neck, couldn’t come at a better time. I can’t beleive I can spell big words like that, don’t know where that is, don’t care, I think it’s gonna help.
      Love & gentle hugs, smitty

    • Anonymous
      June 24, 2010 at 6:31 pm

      YES the epedural facet joints injections helped wonderfully! I know the day’s not over yet, however, my neck feels so much better I have taken off my neck brace that I have worn since Feb. Love, smitty

    • June 25, 2010 at 2:49 am

      [QUOTE=smitty]In the beginning I was told to keep a pain jounal. I did for maybe 2 years it was too depressing to go back & read it. For instance “horrible intractible, unending pain, prayed for death”. Definately too depressing for me. However it is a good idea, your activities & how you feel. Having a cold & allergies too.
      Love & gentle hugs, smitty[/QUOTE]

      My mom kept those. She was always ill as long as I can remember. When she passed, I cleaned her things up and found her journals. I cried over them. All that she went thru and all the pain and misery. It was so depressing to know a person you loved could be so miserable yet not put a gun to their head. I guess her passing was her final choice considering the circumstances.

      I know heat is my main trigger and suddenly after a long wet, chilly spring, we get slapped in the face with hot! I save errands and such for early morning or evening.

      Today I woke up and was in such pain I was crying. I broke down and called in to the dr and explained I did not want to go to the hospital because they may treat it as a relapse. I asked if I could please take some tylenol 3…he knows it takes a LOT for me to ask such a thing and allowed for it. Right now the pain is at ease and I am loopy and feel stoned. Sweating too. But not crying.

    • June 25, 2010 at 2:52 am

      I am so sorry you have to go thru this Smitty. I pray for everyone here and their caregivers.

      I have also noticed weather changes effecting things. Never paid attention before till a friend and hubby mentioned it. After a painful May I was hoping for a much better June. I do not want to step up with the Savella, but I am starting to wonder if it is even helping because of how things are.

    • Anonymous
      June 25, 2010 at 11:28 am


      Glad you are feeling better. Too bad they can’t give us injections all over our body to rid us of the inflammation and pain. 😉


      I am praying for you that you will get through this bad episode.

    • Anonymous
      June 26, 2010 at 12:03 pm

      Thank you, that reminds me I will make sure I find all those journals & burn them. So far I know that noone has read them. This reminds me of why my Psychologist is my most important Dr.
      Thank you. Love & gentle hugs, smitty

    • Anonymous
      June 26, 2010 at 12:06 pm

      Thank you! I feel even better today. I pray for you too. Love & gentle hugs, smitty