feeling like $@!!*

    • Anonymous
      June 17, 2007 at 11:55 am

      Do you find yourself thinking about your condition much of the time? I feel like I am constantly evaluating and assesssing myself. Anything and everything is subject to scrutiny. I try and distract myself and have lots of social activities but I am always “aware” of my body and I never seem to feel good. I don’t want to sound hypochondriac-ish but I really have not felt good for so long that I wonder if I will know what that is which is why I am always checking. I have always thought my CIDP diagnosis was suspect until I just couldn’t move. I think this slow progressive version plays on the phsychlogical part of ourselves more incidiously because your always wondering what is what. Now with the methotrexate and its side affects there is an added worry. Am I getting sick from that or is the CIDP getting worse? It drives me mad. Like today, I ache all over and my throat hurts. And I am coughing. Could it be the cleaning I did yesterday or am I coming down with something? And much to my partners objection, I am hesitant to call my doctors about anything. Oh, I also have been struggling to retrieve words in thought and conversation. I love to read but have not been able to for about a month. Whats up with that? I am trying to do crossword puzzles everyday. I feel so boring and sometimes like a sell-out. I can’t believe I had to give up my thriving business and now I have nothing. What kind of work will I be able to do? Especially if I don’t know what direction this condition is taking. I have only been on the chemo for 12 weeks so it is too early to tell if I will improve. All I know is I have limited energy and more gradual symptoms but can still walk and talk. Most days I excentuate the positive and do what I can but yesterday and today I feel down and not so optimistic. Then I feel guilty because some of you have been way worse than I and have gone through hell and then some. I am sorry. I don’t mean to be a bummer but I don’t like to express this stuff to family and friends and I only get an hour a week with my therapist so I just needed to vent.
      Thanks for your good ear.

    • Anonymous
      June 17, 2007 at 12:56 pm

      Linda, First you have a lot going on right now and it is very hard for us to figure out what is causing the residuals or side effects. Don’t be so hard on yourself. Many of the problems you have mentioned are common to GBS and CIDP. But I hate to lump them into that catagory because they get overlooked and should be mentioned to the Doctor. To save time print out your message here. Hand it to the Doctor to read. It is well written and says it all. Most of this is a blessing you are able to pick up on changes in your body and have listened to your body. You just have not given that burden to your Doctor to determine which symptoms are the ones to worry about. No wonder why we are not able to concentrate on things we like like reading and social life….our lifestyles have changed and our minds are racing a million miles a minute. Try and read just a page at one sitting rather than give your day dreaming time to take over your reading time. That way you don’t have to give up your reading time you just spread it over the day! Take that time to take deep breaths and exhale! This is YOU time! Think of yourself….write down in a Journal how you feel and what you have been thinking about. If only by words and not sentences. Then close your Journal and take time, grab that time for you! Read that page in that book or magazine you wanted to read. I read two pages that way I can move the book mark forward to the next pages. I two lost my business due to GBS so I know where those thoughts are coming from. It was not your fault and take those thoughts and move on! I take time each day to clear out the depression and anxiety from that and let go of the stress. Bigger things will come out of that experience. It is not you that failed! It is our health that got compromised. Nothing we had control over, so don’t let it control you! You are with friends here and family that totally understand. I wish you well on your progress and enjoy the journey! I have found that I like to look at pictures rather than read at times. Take time to look at some of the photos that Ken L has posted to this site. I use them as backgrounds on my computer desktop. There are some that I would really like to print out and use for photos around my house. Places I have been and places I would like to visit! Look toward your future and remember depression is part of this process of changes. You are in control and should mention that to your Doctor. If you need a phone call from a friend send me a Private Message and I can call and talk. Take care!

    • Anonymous
      June 21, 2007 at 6:31 am


      [I]”I feel like I am constantly evaluating and assessing myself.”[/I]
      Constantly. Always looking for patterns.

      [I]”I think this slow progressive version plays on the psychological part of ourselves more insidiously because your always wondering what is what.” [/I]

      [I]”Oh, I also have been struggling to retrieve words in thought and conversation.”[/I]
      Names too. I’m amazed I haven’t forgotten my own.

      [I]”I love to read but have not been able to for about a month. What’s up with that?”[/I]
      If I could only “focus” once in a while!

      [I]”I feel so boring and sometimes like a sell-out. I can’t believe I had to give up my thriving business and now I have nothing. What kind of work will I be able to do? Especially if I don’t know what direction this condition is taking.”[/I]
      Scary, yes?

      [I]”All I know is I have limited energy and more gradual symptoms but can still walk and talk.”[/I]
      Sometimes at the same time.

      [I]”Most days I accentuate the positive and do what I can but yesterday and today I feel down and not so optimistic.”[/I]
      I can’t bear to answer the phone.

      [I]”Then I feel guilty because some of you have been way worse than I and have gone through hell and then some.”[/I]
      Cancer patients lose their hair. I don’t think I could pull off the “bald” look.

      So Linda, when you think about, you’re asking some really hard questions here. Such as:

      [I]”Am I a “broken” person?”
      “What if hope is useless?”
      “Could I be a personal failure, a fraud?”
      “Could I become ugly and repulsive – unloved?”
      “How is my life going to have any meaning now?”[/I]

      Well, I think you’ve pretty much hit the nail on the head.

      I’ve been doing IVIG treatments for almost six years – every six weeks. I’m sick, and in pain for two, sometimes three weeks out of every six. Every IVIG cycle causes a smack in the face depression. I’m still here.

      If you’re asking how?

      When you are powerless, helpless, scared, frustrated and in pain? You just keep saying “yes” to it. All of it. Yes, I’m scared. Yes, it hurts. Yes this is life.

      And let your heart just break into a million little pieces.

      And then, you find you can still love. Deeply. Can’t you.

      You’ve done this before, haven’t you. You’ve got more brains and courage than you think. And doesn’t somebody need to hear you say you love them?

      I don’t know why it works this way. It just does.

      You go girl. You’ve got heart. Yes?


    • Anonymous
      June 21, 2007 at 7:50 am


      The things you say sound so much like they could come from me at times. I just had a very rough bout of weakness and progression and even depression that lasted about 8 days. I am still learning to accept this crap…very scared of the future. I am a mom to a sweet little four year old boy and my biggest fear is not being able to be physically able to participate in his adventures that are yet to come.

      I think the last few weeks were my lowest point emotionally. It seems like this disease came out of nowhere even tho I had symptoms for almost a year before I knew something was really wrong. Then to get those awful tests…the spinal tap, the emg, the dr’s visits…and then Ivig five days in a row…I had no idea what Ivig was. More Ivig for 6 mos only to be told it wasnt working…the rash, the side effects…for nothing. My next thing to be hit with was very high doses of steroids. To no avail…the roids didnt work either.

      So many have told me on here to live for today…be glad for what you have…and when we are down that is hard to ration…but I have learned that with this stupid stuff comes good days and bad. If we can just get thru the bad days, the good days are just around the corner.

      I, too, will feel guilty to be complaining or feeling sorry for myself on here b/c I can still walk, talk, work and there are many on here who cannot. What is so awesome about this forum, these people, is even the ones way worse will be here to encourage us, no matter how good or bad we are physically…and with that, I find strength. Many people would say to buck up…we could be worse. But they are here, offering their advice, friendship and hearts.

      I hope you can find your faith and get thru these rough times. Maybe you could go and pamper yourself. Get a pedicure or massage or go somewhere you really love to be.

      As I am going to be weaning from 90 mg of prednisone ev other day now…I hope my down days will be fewer. But, if not, I know where I can come to feel sorry for myself and get a boost from others to lift my spirit.
      Just as you can.

      Hang in there and know that a better day is coming. I hope the best for you.


    • Anonymous
      June 23, 2007 at 2:07 am

      First of all vent all that you need to, that is why we are here, to help one another. It is very emotionally hard to cope with a chronic illness, I have the relapsing form and I never know when I am going to relapse, one day I will be walking and 5 days later I would become a complete quadrapalegic. It is hard to live with the uncertany of your health. I have a very aggressive form and at my worse was on a vent and a feeding tube in the ICU for over 2 months. After many failed treatments I did IV chemo (cytoxan) for 5 months, and it did work and put me back into remission. I know it is hard to play the waiting game, but try to hang in there. I spent 7 months vomitting 4-6 days a week and felt like abosulute crap all the time. I never thought there was going to be an end to my suffering, and then one day about 2 months ago I started to feel better, no rhyme or reason, and I am now stronger and feel better then I have in 4 years.

      Before I became ill, I had a life that no longer exists anymore. I had a job I loved, was in my 3rd year of college and a busy social life, now I am left without any of them. I have a hard time as well not knowing what lies in the future and if I am going to ever have the stamina again to hold down a job at all. I wish I too knew what direction my life is going in, but that is out of our control.

      Take Care and I Hope Things Get Better for You,


      You are more then welcome to e-mail me or private message me anytime you need to vent.

    • Anonymous
      June 25, 2007 at 1:03 am

      Thank you so much everyone,
      I so appreciate your responses. Mark, you really listened and Emily and Stacey you are so kind to invite me to e-mail you and for reminding me that I am not alone. I am so sorry for what you have suffered and I am grateful that you are well enough to share your experience today. I am feeling better and am restarting the chemo tomorrow at full strength. I’m sure it will be fine. You did it so I know I can! Thanks again.

    • Anonymous
      June 27, 2007 at 9:09 am

      Good morning,
      I feel like I just broke out of a cacoon. I finished the course of antibiotics and still feel like I have a cold or some type of chest congestion. I went back on the chemo at full dose on Monday and on Monday night started feeling really bad again. Sweating, dizzy and nauseous. Went to bed and slept 12 hours. Woke feeling weak, esp. in my arms and could do nothing all day. It was 96 degrees so I stayed inside with airconditioning and slept most of the day. I feel like I relapsed in some sort of way. Could it be because my body had to fight a virus ontop of a reaction to the meds? I don’t know why I can’t just believe my own body but I feel like I need someone to say, oh, yeah that makes sense. I just never know what to believe or trust. Is this how CIDP works? You feel exhausted, weak and unstable some days, esp. when your sick, and then you recover a bit but still feel a “normal” amount of crappy? It is unbelieveable to me that I have had this diagnosis for almost 5years and I still don’t quite get it or trust it. Any thoughts or input? Thanks

    • Anonymous
      June 27, 2007 at 10:33 am


      I know where you’re coming from! 😀 I was dx 7 years ago next month and I still don’t feel that I have a handle on this disease. Some days I’m great; some days it’s all I can do to NOT cry all day because of fatigue, pain, frustration at my not being able to do anything – some days I want to sleep ALL day, for many days.:mad:

      I think this is a very frustrating disease — no two people have the same symptoms, reactions to drugs/treatments. This forum has helped me so much to cope with cidp and I hope it helps you, too.

      Vent whenever you want — we’re here to support each other!:D


    • Anonymous
      June 27, 2007 at 12:14 pm

      It makes sense that an active virus could cause your CIDP to get worse. The virus would make your immune system “kick in” so along with trying to fight the virus it likely is attacking your nervous system as well. This happened to me when my doctor gave me a pneumonia vaccine last December (big mistake!). I had been doing great, but within a day or two of getting the vaccine I had relapsed badly and was really weak.

      I hope you’re feeling better soon!

    • Anonymous
      July 2, 2007 at 9:42 am

      ok, Im sorry that all I do is complain and I do hope someday to offer more positive, but I am in a cycle of one thing after another that is so frustrating. I am still not feeling right after several weeks of this low grade flu like thing. I called my neuro this a.m. and described my symptoms of sore throat, coughing, sore gums and teeth pain and the nurse pract. says to stop the methotrexate even though it doesn’t sound like that is the problem. She says the usual complaints with metho are nausea and stomach problems. She told me to see my primary. I called and got an appointment for this afternoon. I am going to get my monthly bloodwork done today too so hopefully something will give me some answers. I slept again most of yesterday and am hoping to have some energy today. I am supposed to go away tomorrow for my first year anniversary and I want to be up for it. I wish I knew for sure what is going on with me. Maybe it’s just allergies? Thanks for listening.

    • Anonymous
      July 2, 2007 at 12:28 pm

      I looked up methotrexate on webmd.com, and it can have serious side effects including fever, fatigue, persistent sore throat, among others. These are less common than nausea, stomach pain, etc. Please describe all your symptoms to your doctor. Hope you feel better soon!

    • Anonymous
      July 2, 2007 at 11:35 pm

      Thank you so much Caryn,

      that was so sweet of you to take the time to look up the side effects. I did go see the primary PA today and told him about the sore throat, cough, sore mouth and pain in my teeth. He said my lungs sounded clear and that maybe I am taking a longer time to get over this virus because of my compromised immune system from the Metho. and the diabetes. He told me to go back to my dentist who by the way said he thought my pain was due to sensitive nerves. I suggested a chest x-ray which he said made sense and went and got that. Came back clear. Got my bloodwork done. No news yet but Im sure it will come back fine. Meanwhile my neuro said to stop the methotrexate until I “feel better”. I feel like laughing because so far I have not felt good for about 6-8 months pretty consistantly. I don’t know, I just feel like if your not on your deathbed then your doing fine and should just be grateful. This is so hard when you have to live in a body that never feels right. I am usually not this negative but it’s really getting to me. Sorry. Thanks for listening. I am going to enjoy this week not being on the metho and celebrating my anniversary in Canada. I hope all is well with everyone else.

    • Anonymous
      July 3, 2007 at 7:02 pm

      Dear linda,

      unfortunately stress allows your immunity to lower and make you more suscpetible to infections it is very important to lower your anxiety if it means taking klonopin every day this may help alleviate some of the psychological manifestations of the disease.

      When on IVIG avoid physical activities even light house work also you need to avoid hot spicy food and chocolates when taking IVIG. You need to rest a lot.

      I am sorry to hear about your inability to read and focus, I had the same problem so I opted for audio books and for lighter reading topics. I also avoid watching any TV or movies that cause stress or are highly stimulating to the nerves.

      If you can read this book ” a new earth” by eckhart tolle this book will show you practical ways to deal with your life situation and how to look at yourself in a new light. this is enjoyable reading that you can do a chapter at a time but the peace and lightness it will bring to your life will be well worth the read.

      I have symptoms going on 24/7 and have not been able to get IVIG prescribed for me, my ability to walk, talk, engage in activities that were not a problem before onset has deteriorated tremendously but i have learnt to not take my physical body and obsess over the health issues. This is a conscious choice because if you stay focussed on it (my helath and body) the issue does not disappear so why focus on something that I have no control over.

      A practical thing would be keep a journal of symptoms so that if you notice a problem you can write it down then show this journal to your doctor but after writing it down forget about it and focus on something that can put a smile on your face.

      I am truly sorry for health issues and I really hope you get better soon, my heart goes out to you and to all of us going through this life situation.

      my sincere best wishes,


    • Anonymous
      July 8, 2007 at 9:37 pm

      Thanks for your input Gopal and everyone else. I went to Canada on Tues. after spending Monday getting bloodwork, x-rays and throat culture. When I got back friday night there was a message from the Dr.s office wanting to talk to me about the results of some of the tests. Of course it was too late to call so I have to wait til tomorrow. I struggled a bit on vacation with fatigue and had trouble walking on Thursday evening and slept all morning on friday missing breakfast but it helped to be distracted by good theater and great food and of course wonderful company, but I really had to push myself. I have had two really good days and have been really productive. I made chocolate covered strawberries and brought them to a friend along with champagne for her birthday and had a lovely time polishing it all off with her, her husband and my partner. It felt so good to be free of pain and exhaustion. Then today I made fresh pesto and salad from my garden and I felt so good to be eating well and cooking. I just hope this lasts. Tomorrow I re-start the chemo and I will follow up with the doc. about the results. Thanks for reminding me that good days do follow the hard ones and that getting outside of oneself helps a lot. Thanks for listening.

    • Anonymous
      July 8, 2007 at 10:16 pm

      But, that you still have a mind and body that can DO the chocolate covered strawberry is, to me totally awsome?
      I used to read, correct that -inhale books, fiction, non-fiction, history…you name it..Since I came down with this stuff, I have not done more than thumb thru anything in print…I can read fine on the computer screen, but, I really, truly MISS the whole sensual experience of being able to turn pages easily and read top to bottom each page! You aren’t alone with the other stuff either…I went thru it and got very, very lucky! I’ve friends who support ME more than the other stuff who have been thru far more and so, we support each other – BTW we met at the infusion center and thru other friends…
      So, think of it this way, our life is changed. Yes. It has to be well, ‘redefined’ a bit. It’s not over, not if there is any CHOICE in the matter…least not by me! What to do? Find out what can be done [especially $ wise] become a participant speaker on the multiple issues in your area and educate people…when you have the little energy left-over from every day life? Well, If you belong to a church…speak to them! Who cares about house cleaning? I do it once a month lightly and I’ve not died from any dreaded growths cropping up…Folks have to accept you as you ARE because of what all is going on! Re-focus on what you can and can’t do, do the pacing of, simply getting on with life…DO tho-keep super trak on on-tme taking of your meds…I find when I skip one of the anti-epileptics…I have difficulty sleeping, staying awake, and all other kinds of life-style issues that keep me off kilter for days… I’m on Arimidex BTW…I do believe it was invented by a person who would NEVER EVER voluntarily take it themselves? You know, a post-chemo-non-defined as chemo chemo? What gets done, does, what doesn’t well, later!

      Hugs and all other sort of good things!

    • Anonymous
      July 9, 2007 at 7:22 am


      I understand you perfectly, I also used to check my body every moment at day, until I found it was to lose time, those wasn’t make me feel better, only make me gets on my nerves, so I decide to live with all this.

      At the beginning it was difficult, but nowadays I’m use to wake up and feel strange with my own body, but that’s what it is and I can’t do nothing to change it. The days I feel right I try to enjoy cooking, going out with friends, and enjoy life. The days I feel bad I just stay at home, have rest and the less pain I can.

      The days and three or four days after I get my IVIG doses every two months, I feel really bad, so I just sleep, rest and just disappear for everybody, I don’t even answer the phone because I don’t want to talk to anybody. My family and friends knows it and just keep one eyes on me and leave me to recover and join the world again.

      It’s good to vent how you feel, because we all learn from each other.

      Sorry if I’ve made any mistake but I’m not English spoken.

      Best wishes


    • Anonymous
      July 9, 2007 at 10:06 pm

      truly, clearly about how we all can feel and your are right. Concentrating on it IS lost time. Sometimes we do have to THINK about how we feel so we can say what we are feeling in better words that the doctors can relate to, the rest of the time it’s good to put your mind to work on more fun or interesting things to do or think of…A mental ‘vacation’ from the pain, discomfort and all.

      We all do think and worry tho. We have to advocate for ourselves and survive and succeed as best we can with what we have. But we are supported by super people here who care.