had a reprieve

    • December 11, 2010 at 5:09 pm

      I had a break for the pain for about 20 days. It felt so incredible to be “normal”…but I was also not able to fully enjoy it out of fear that at any moment it would come screaming back. It did. Slowly been building since the 6th and now I am having a hard time once again with the stairs and walking in the morning.

      I saw my dr on the 8th and told him with tears in my eyes that I am unable to handle it anymore. I don’t know what is going on but it is more than it used to be. With ‘just residuals’ it was a pain but I was familiar with them so I more or less knew what to expect and how to handle it. Whatever this is, is very different and I get no breaks (except this recent one). It has been a rough year and the wear and tear is starting to show in my eyes. He said that he strongly believes I do have something more going on and it is beyond his ability to help so he referred me to another specialist of some sort. Said he wants me examined for fibro and the depression because it has gotten to the point that I don’t care to leave the house or participate in my own life. I feel sad because I miss how I was feeling just a few short days ago, yes it still was there but it was not as bad…more of just an annoyance. I hope the specialist will see me and take me seriously since that neuro blew me off once he found out I was on medicaid. That was so hurtful and humiliating. But somehow I am going to get someone to believe me and help me. It has come to the point that I have an Rx now for hydrocodone (and an anti nausea med) so I can take that when it gets to be too much for me to push through. I dont like the way it makes me feel, but at least it takes most of it away for a few hours.

      Also havent been sleeping very well or at all. Dr was very hesitant about a sleeping aid because I am sensitive to so much and he felt the risk of me stopping breathing during the night was too high to risk. Said he actually felt better about raising my xanax dose than giving me a sleeping aid. Said one acted on the cns more than the other or something to that effect. ugh.

      GBS doesn’t just start hurting worse does it?? Taking over your whole body and not letting go? I hurt as bad as I did when I first got sick! I constantly feel as if I am burning like after an intense workout. I keep getting headaches, digestive problems are almost a constant now, and the mouth quivering has me worried. I dont smile much anymore because it is embarrassing because my mouth and around it start quivering like crazy. This all hit me I would say about a year ago, getting worse as the days passed, and now it is a constant with no relief unless I take the hydrocodone. I don’t have a clue what is going on and I hope this specialist will be able to give me answers and help.

      I recently had some blood work done and my sed rate for inflammation or immune something or other was on the high side of normal. Even my glucose was elevated which I have never had a problem with! Even after a meal the highest it has been is 99 (my mom was a diabetic so I would sometimes ‘keep an eye’ on my own readings) but this last one was 106 fasting. WTH?! I told the dr I feel like I am literally coming apart at the seams.

      Has anyone else had their symptoms get worse and stay that bad over time? Or am I right to think something else is going on?


    • December 11, 2010 at 6:11 pm

      Lori, I’m sorry to hear that you’re experiencing so much pain. I can’t answer your questions … I’m a CIDP sufferer. But know that I will pray for you (answers about what is causing the pain increase, relief from the pain, peace and encouragement, and healing).

      I’m also sending electronic hugs your way …


    • Anonymous
      December 11, 2010 at 9:59 pm


      I’m sorry I too don’t have any answers for you. I also have CIDP. I’m on MS contin [30 mg twice a day] It seems to keep the wolf at bay. However, from what you said, I don’t think it may be suitable for you. Perhaps a much lower dosage, it might work for you.

      Just to add to what Gary said, you will be in my prayers. I know pain can be a real downer especially at this time of year. The cold just seems to make it worse. That’s where a nice hot bath can be great. The only done side is trying to get out of the tub. My wife has come up with a solution. She has told me that if I can’t get out of the tub withing 15 minutes from the time I start to get out, she will bring the engine lift crane in from the garage and attach a sling to it and lift my butt out of the tub. It is amazing what motivation can do. I always get out in under 13 minutes.;)

    • December 15, 2010 at 12:46 am

      thank you for the prayers. Much appreciated and helpful!!

      Tomorrow I see a psych for an assessment. My doc thinks the depression needs to be addressed. Now I went in telling him I wanted to explore the fibro side of this and I get sent to a shrink?? I am not sure i understand exactly how that is supposed to help, but i swear if any of you hear a scream it is me…being told it is all in my head—again.
      I dont know what I am supposed to get out of this. Other than possibly dealing with things I have not dealt with, maybe even getting over being so angry about getting sick, accepting my limitations and new life, whatever. But It still doesnt address the pain and the limitations I do have, and that is what I was looking for. ugh. Seeing a shrink makes me very nervous.

      I’ll let you know how it goes.

    • Anonymous
      December 15, 2010 at 12:09 pm

      Lori I just watched Larry King with Naomi Judd who battled Hep C. She talked about the importance of anti-depressants while she battled the terrible fatigue of Hep C. I think with many chronic debilitating disorders there is lots of value in taking an anti-depressant. Hubby takes one and he has CIDP and I think it does help with the fatigue and depression that comes along with the condition. Good luck and I hope the shrink is a good one.

    • December 16, 2010 at 1:19 am

      the intake process was interesting. Turns out I guess I have a lot more to deal with than I wanted to admit even to myself. We set some goals, and he offered couples counseling and family counseling if I thought it would be a good idea. I will go to a couple of sessions on my own and we will think about the other stuff. The questions they ask are pretty intimate and deep, and admitting to things or recalling things was not a pleasant or proud experience. We will see what happens from here. I have to get a hold of them because they said something about 3 appts for different things, but set up a counseling appt on the 28th and didn’t say anything about the other stuff. Hmmm.

      Also going to call and ask for a referral to a rheumy because apparently that is who I should see about the increased pain and stuff. Counseling is fine, but I dont think that will address nerve damage and other issues. Or I could just go on hydrocodone daily, that helps…I’m a zombie but with the anti nausea medicine I not only sleep but feel a lot better pain wise. Not sure what to do.

      Anyhow thanks again for the support


    • Anonymous
      December 17, 2010 at 2:52 am

      I too will continue to pray for all on these forums here. I take cymbalta and lyrica plus some 80 mg of oxycontine 3 times a day. Lori, the winters does make it harder for me too here in the mid west of U.S. I don’t sleep much at night either. Well, you can see the time of my posts here in east KY. Eastern time zone. The pain and fatigue are hard for me to deal with too.

      Good night and God Bless,

    • Anonymous
      December 17, 2010 at 7:04 pm

      What you mite get out of psych consults depends on how good the psych is and IF you get along well w/him/her.
      But, IF they’re asking the family to participate in some ways? It can be a good thing or expose a minefield of ’emotions’ long lost and forgotten yet resurrected. Soo…. in any meetings? Keep focused on this one ISSUE and how it affects/effects you and those around you. Don’t stray from that!
      It’s HARD, and you can get thru it whole.
      Hugs and faith in you! You are truly a stronger person than I am and I admit it freely! Your bravery keeps giving me hope. Hang in there!

    • December 25, 2010 at 8:30 pm

      Psych eval was interesting. Have more to deal with than I thought and have been diagnosed with PTSD because of the gbs and my mothers sudden passing. Also been diagnosed as major depressive disorder. My meds have been added to…was hoping to get off of everything, but that is not the case. I feel like a walking disaster. Oh but I did mention some things and the woman added some of her own before i finished my list and then told me she strongly believes I do have a fibro overlap and that is causing even more issues than the residuals I had been dealing with. So she is getting me a referral to a pain management clinic. Not sure what they do or how they can help nerve pain stop without turning me into a medicated zombie, but we will see. At this point I am willing to try almost anything.

      I was given abilify—the research I did on it does not make it sound like a good idea since I tend to be so sensitive to things and this one actually is known to cause anxiety, insomnia, suicidal thoughts and tendencies, vision problems, GI upset, and all sorts of other things that I am already dealing with anyhow. Like I need more numbness and tingling! Not adding that one to my list.

      Changing from xanax to klonopin(sp) since it lasts longer.
      also going to be put on a sleep aid that is in the same family as klonopin and xanax since i tolerate that “family”

      weaning off the Savella because I honestly do not believe it is working any longer. And have been given Tramadol as an as needed pain reliever (what if I hurt all the time??). Tramadol side effects kinda creeped me out too. But I may not have to deal with the effects I do with codeine based meds.

      The whole thing worries me because I am so afraid of things affecting my breathing at night. Since i got sick that is a huge fear of mine and i am careful of what I take and check and recheck side effects because now i tend to have the “serious” or near serious ones with things I never reacted to before. Hopefully I don’t have bad reactions and can get some much needed relief.

    • December 27, 2010 at 6:48 pm

      What a nightmare!!!

      I tried the new meds finally….pharm was out of stock on everything….The sleep aid caused a great deal of nerve pain and so much burning and tingling that it was hard to even relax with that in my system. I have had a bad day dealing with my muscles feeling as if I have worked out or ran a marathon. So much burning and tingling and discomfort. The anti anxiety one did nothing but make me feel buzzed and out of sorts. I hate that feeling and have it often as a residual anyhow that I would rather deal with anxiety attacks and monkey chatter and my nerves screaming at me than the feelings of the drug. Oh the sleeping stuff says not to use if you have myasthenia gravis…am I confused or is this not closely related to GBS? And if someone tells a dr they suffer from constant tingling and muscle burning why would they prescribe a medication that has a side effect that causes that?! Anyhow, no sleep but TONS of monkey chatter and lucid dream state and chest pain (thought it was an anxiety attack and told myself it was my imagination….it just happens to be a side effect of temazepam that I was unaware of) when I finally was able to relax enough to pass out. I have an appt tomorrow and will be telling the dr about my reaction. I don’t care how closely related a medicine is, there is a reason it is called something else instead of going by the name of what I am already on. I have had experience with “closely related” meds in the past 4 years and have not had a good outcome. I just want to stay on what I have and feel actually kinda works. I am scared now to even touch the tramadol because of the side effects it causes. Why is it so hard to find something that works when you have been hit with GBS?? And then to probably have fibro on top of it makes things even worse. Ugh.