Very concerned…..

    • Anonymous
      June 16, 2010 at 10:01 am

      As some of you know, I had what was diagnosed as “mild” GBS after the H1N1shot 6 months ago. I have always been concerned that I have/had CIDP or some other autoimmune condition because I continue to have symptoms.

      The last couple of weeks I have become very fatigued again, (can hardly keep my eyes open and just want to lay down), my appetite is way down and I feel my gastro motility slowing down again. I have had increased muscle/joint pain and muscle twitches. Last night I had a cramp in my foot which I have not had before. I have had mild cramps, but not an actual cramping. I have gotten the muscle jerks again. I have noticed that my right arm has been really sore. This morning, when I put my right arm behind my back, I tried to push it up toward my neck and could only get it about half way. I can push my left arm all the way up. Does this sound like CIDP symptoms?

      I have called my neuro’s nurse and am waiting for a call back. The woman told me that the peripheral neuropathy clinic is not until Friday. I don’t want to go to the ER to pay $200 (co-pay). Do you think I can wait a few days? Hopefully, the nurse will have some suggestions or be able to get me in, otherwise, I will be going to the ER.

    • Anonymous
      June 16, 2010 at 10:45 am

      Dear Jessica,
      I am sorry for your demise, however, getting to the Dr. or ER sooner will not stop the demise, my own oppinion from personal experience. Take it with a grain of salt. If it is CIDP, or reoccurrance, or relapse of GBS, it will get a lot worse. So maybe you should go to the ER. You are in my heart & in my prayers.

    • Anonymous
      June 16, 2010 at 12:04 pm

      I would wait the few days unless you begin to experience increased numbness, diminishing strength in your limbs, or possibly difficulty breathing. I know you had a mild case of GBS, but the symptoms you describe can very well be residuals to the GBS. Often people can take 1-3 years before symptoms of GBS truly bgin to disappear. For the cramping take a tsp. of regular mustard, trust me it actually works: immediately. I can’t help you with the fatigue, all of us seem to be left with that as a residual.

    • Anonymous
      June 16, 2010 at 12:20 pm

      Thank you Pam and Smitty. I am still waiting for a call from the nurse. I am inclined to wait until I can get into the doctor v. the ER, but will certainly if things get worse, go to the ER.

    • Anonymous
      June 16, 2010 at 4:44 pm

      Did not go to ER. Don’t seem to be declining, status quo, but we will see. I am still waiting for the nurse to call me back and I called at 8:30 a.m. Arghh…

    • June 16, 2010 at 9:53 pm


      If you start feeling it on your face or if you have difficulty breathing or swallowing, don’t wait go to the ER. Otherwise, keep calling that nurse. Unfortunately you have to be your own advocate and keep pestering until you get what you want/need.

      Praying for you.


    • Anonymous
      June 17, 2010 at 10:42 am

      Thanks Gary. I think I am ok for now. I was a bit panicked yesterday.

      I really am wondering if I have CIDP since I have so many of the same symptoms, but a lot of symptoms overlap for a lot of autoimmune diseases so it is hard to know. I am still on my quest for answers. I have been an advocate and it has gotten me nowhere so far. The problem is that I cannot find a doctor that will look into it or stick with me. I think that they do not know, so they just send me on my way because they are not sure what to do.

      I look ok too, noone would know that I have anything wrong with me. I think they figure well, she is functioning, working, etc. so she is fine. No matter that I am BARELY functioning and just want to lay in bed all day from the fatigue, have all sorts of weird symptoms, chronic pain, etc and diminished quality of life. All I do is go to work and come home and take care of my kids and house. If I have to run an errand, I have to think about it, if it is worth it to get more tired. My kids are getting a little older, 2 and 4, so at this point, I should be able to be more social, doing more for myself, etc., working out, and it is all I can do to drag myself around. I just pray and hope that things will get better and that a doctor will be able to help me at some point, at least to make things more tolerable and manageable. I don’t feel like that is too much to ask for.

    • June 17, 2010 at 7:58 pm

      Sorry I didn’t get back to you thru email sooner….things are still crazy around here.

      If I remember correctly, I went thru a phase or two where it seemed I was worse, or new things popped up I hadn’t experienced before. It is scary even now…almost 4 years later. I was stubborn in spite of my fear and would wait things out. If it wasn’t worse later, I figured it would be better in the morning. Usually it was, even a small amount.

      With your case, you have not had a chance to rest. You have continued to go go go since you first noticed symptoms. Your body could very easily rebel and send you to bed on purpose. If there is any way at all that you can take time off, have someone help with the kids, do it. I thought the whole rest thing was an overstatement when the group first told me about it, but my body insisted and I decided to take their advice. I never got treatment as you know, was considered a “mild” (is there such a thing??) case, and am still struggling with residuals today. I have a picture of a jar of energy in my mind and have a mental list of what i have to do each day. I divide that jar into sections and apply them to what I have to accomplish. If I ‘feel extra good’ and think Bah I can do more today! I find out tomorrow or even that evening I was wrong. If I have something i really want to do and know it will require more of my jar, I save up and take it easy until the event comes that I want/have to do. Does this make sense? You can only push yourself so far. You have been injured. Think of it as running a marathon (your busy wonderful life), suddenly breaking a leg, and putting a couple of bandaids on it, and continuing to run that marathon. You are going to hurt, you are going to notice new symptoms, you are going to cause more problems. I know from our talks what you have sought out and I surely wish someone would have a definite answer for you because that would take a lot of worry from your shoulders. But, seriously, rest my friend. Or your body will force it on you and you may not like what it does to get you to lay down.

      I send you tons of hugs and prayers. I will email you soon!

    • Anonymous
      June 18, 2010 at 11:37 am

      All the things you do, you are superwoman. You have my utmost respect & admiration. I know it’s not easy. Do you take vitamin B-12 shots or sublingual. If you don’t, seriously consider it, up to 5,000 sublingual. You can get it otc.

      You are in my heart & in my prayers, smitty

    • Anonymous
      June 18, 2010 at 12:29 pm

      Thanks Lori and Smitty.

      Lori, you are right, I have not rested much and I am paying for it now, but I feel like I am on this speeding train and I can’t get off or there will be so many negative repercussions. I am afraid of being unable to keep my house, support my family, etc. I guess I have to realize though that this is taking a toll on my body, physically and mentally. I keep thinking that this will pass or go away so that is why I continue to do what I do.

      I am going to take your advice and try to rest more this weekend. I am going to start seriously cutting back in some ways and trying to reevaluate things. I have a neuro appt on 7/2 that I am hopeful about. I like your analogy about the marathon. I guess it is hard to come to terms with the fact that things have changed drastically, whether I like it or not, and that maybe I need to adapt to this. Thanks as always for your sage advice and concern.

    • Anonymous
      June 21, 2010 at 11:44 am

      Jessica –

      Oh how I hope you rested this weekend. I have not posted for several days because all I could do was sleep and cry – no reason for either, just that I am sick, sick, sick of being sick! You know, I had 2 major spinal surgeries prior to my GB, so I have been down since last May – and doggone it, I would just love to clean my house. But all I can do is sort of keep up with the laundry, fix very simple meals (my hubby has never eaten so many casseroles in his life) and try to look normal to the rest of the world.

      I have to go back to work this August when school starts – my short term disability has run out and we can’t afford any more time off. But my school is gang ridden (3 stabbings last year and a couple of guns on campus) and I am not sure if I can get it together to deal with those tough, tough boy-men for another year. It has me quite down. So, I am interviewing at the middle school level, and am trying to look perky and together. It is hard, as you know. I guess I should be glad for the job I have, but really, after what we’ve been through I am not sure I will deal well with all the teen age drama that comes with high school girls.

      Thanks for letting me vent – I was planning on writing you a quick, supportive note as we are really very close on our recovery road and I feel a special tie here. You reflect so much of what I feel. So, for both of us – let’s take a deep slow breath, have a long tall glass of ice tea (or a cup of hot if our feet are unbearably cold) and take some time out for us. You are in my prayers. Take care .

    • Anonymous
      June 21, 2010 at 12:09 pm


      Thanks for your kind words. You are in my thoughts and prayers too, in fact everyone that has to go through the roller coaster of autoimmune diseases. How can you explain it to anyone who has not been through it? They do not understand that since you look fine, that you could be experiencing all these issues. I got asked again, “well you are better, right?” this past weekend. No I am not, and maybe will not be for a long time, but you cannot keep on telling people that.

      I did try to rest more this weekend, took a lot of naps and had a few cries too, which helps me. 😉 My 2 year old daughter saw me crying and said, “Mommy, I’ll make you better.” So sweet.

      I understand the stress of returning to work. Just try to focus on one day at a time, one foot in front of the other. When I have low points, I try to think of the good days, and that I will have another one. Cathie, I am really rooting for you that your return to work goes well. Be good to yourself. Rest every chance you get and pamper yourself. One person on here mentioned taking naps at lunch in her car. Not sure if that is an option, but I sleep on the train to and from work, which is about 45 minutes each way, so I get my rest in then. And let the small things go, housework etc. Good luck, hang in there, and know that we are all thinking of you.

    • Anonymous
      June 22, 2010 at 12:52 pm

      Oh you are very brave, school wise, my heart & prayers go out to you.
      Love & gentle hugs, smitty

    • Anonymous
      June 22, 2010 at 1:13 pm

      I think I know how it is when people say “you are better right?” Or “Are you well now”? To those people “anyone who does not have an autoimmune disease themselves or their family, I say “Yes I’m wonderful”! Which means “I do not want to talk about it”. These are the people who knew me before CIDP, when I worked etc, who saw me walk with a cane then get braces, then walk with walker & more braces, now even more braces & in a wheelchair & can’t walk anymore. Yes some people still ask me if I’m “well’ or “better”. Y’all know how it is to try to explain it to anyone who doesn’t have it. Praise the Lord & thank you ,my GBS/CIDP family who listen to me venting & I know you care. I love all of you. You are all in my prayers.
      Love, smitty

    • Anonymous
      June 24, 2010 at 12:55 am

      Smitty =
      Your gentle thoughts and words means so much to me – I can’t tell you how I appreciate them. My sister has lupis and hates it when people say “Oh, you must be well now” when it is one of those days when she isn’t swelled up and crippled with the side effects. People tend to understand hidden disease like heart, diabetes, and cancer – but we have had such media attention there I guess they feel like they can talk to the issues. Auto immune diseases are a mystery to us all, and when we walk like we are walking on marbles, when we bring the walker to church, or break out the cane on a bad day folks just don’t get it – “Oh, I thought you were better! or cured, or well.” Ups and downs are hard for us to accept, so I guess I should expect others to have a harder time. So, your “I’m just fine, thank you!” is the best idea.

      BTW – I had a good junior high interview today – please pray that one will hit to get me out of my dangerous high school. I know someone has to teach gang members who don’t want to be taught, but please, I don’t want that for me right now. 🙂

      Take care – and prayers for all of us who struggle, and for those who offer support.

    • Anonymous
      June 24, 2010 at 9:54 am

      Thanks Cathie, You are in my prayers & I pray that you get that junior high place. God Bless you. Love & gentle hugs, smitty