update (in case you care)

    • Anonymous
      October 10, 2007 at 2:12 pm

      :rolleyes: Hello all,
      I just want to give an update in case there happens to be anyone who really cares. I continue to ride the roller coaster of chronic illness in a not so graceful way. I had a steady 2 weeks of good days, actually felt energy and strong which gave my life a differant colored hue. Then on Monday I took my meds., went to my neurology appointment and when I got home I felt like someone slipped me a mickey. So I slept for about 2 hours, ate dinner and went to bed. Yesterday I woke up and felt like my head was in a vice, nauseous and sweating profusely. The day dragged on like this until I couldn’t take anymore and got a little help from “my friend”. Unbelieveable what relief mj can be for pain and nausea. I told my neuro about my reaction to the methotrexate and all my other latest symptoms and the long and short of it is, it has not been long enough to decide if this is the right treatment for me. So I agreed to keep on it. He kind of feels like this is the last hope since nothing else has worked and PP is not on his to do list. He told me my neck pain and back pain are all due to the Spondylosis which unfortunately is yet another disease separate of the CIDP and the Diabetes. As far as the fatigue goes, he wants me to see a sleep disorder neurologist who is also versed in CIDP so we shall see where that leads me. I guess what really bugs me is that I have had to do so much research on my own and luckily with the help of this forum I have gotten some help. But if I didn’t find you guys, I would not have any frame of reference and the neuro and his staff don’t seem to offfer much in the sense of education or information. Like they don’t say, well you can expect fatigue so pace yourself and rest and know that you have to listen to your body. Nothing. They just write down my symptoms, nod their heads and as long as my bloodwork looks good, I am good. I guess I need more symptom management and confirmation. Maybe I just have to trust my own thinking and not look to them for anymore than what they are doing. I have decided today to just live today as well as I can and to let go of the past and the future. It is glorious outside and I am well today so that is enough. I hope this wasn’t too long and boring,. It helps to just let it all out though and I so appreciate anyone who listens and responds.
      Be well all.

    • Anonymous
      October 10, 2007 at 3:22 pm


      Of course we care how you are feeling…we know the frustration from it all.
      It does seem like the doctors are too much into the business of health care,
      rather than concern for the patients.

      I can relate to your concern of side effects from meds and the possibility if
      they are even correct. My neuro kept me on some, that I felt wasn’t right…
      he said the same thing…it wasn’t long enough…after the three trips to the
      emergency room two weeks apart, each time…I told him, enough was enough
      and I don’t want anymore. Since then, more energy, no trips to the hospital.
      You have to take charge of your body – know symptoms when they occur,
      write them down, if necessary – you know your body.

      Unfortunately, we do have to research our diseases to learn more – but, it
      does keep us informed enough to challenge our doctors, if needed. If you
      feel that there might be a connection of side effects and your meds…do tell
      your doctor that you are extremely concerned and feel that it might be the

      I do hope that you start feeling better soon…if not, see another neuro…you
      need to be able to communicate well with each other…

      Linda, we all have been in the same place, one time or more, keep your chin
      up and stay positive…this cloud shall pass.

      Miami Girl

    • Anonymous
      October 10, 2007 at 3:47 pm

      Don’t ever doubt how much the people on this forum care about how you feel. We can understand so much better than the neurologists how you actually feel. I got up at 11:00 & feel like I need a nap already; this has been my life for the past 5 1/2 years. No one can understand this fatigue unless you have been through it. My husband tries very hard, but I know he can’t really feel what I feel. Not to mention all of the pain, it can be so overwhelming…

      About your treatment, I have read other posts by you & personally feel that methotrexate is probably not helping you. Listen to your own body & if it not helping you by now, it probably won’t. I also don’t believe that this is your last resort. Besides, I think that drug is mostly for RA, not CIDP. If you ever want to talk just email your phone number & I can call you. I had/have a very severe case of CIDP & ran the gamut of all of the treatments out there.
      Blessings, Pam

    • Anonymous
      October 10, 2007 at 3:51 pm


      I know where you are coming from. I was a little wounded at first by you saying ….. [I]in case you care[/I], [B]BUT [/B]I feel like that a lot of the time to so I very quickly got off my high horse :p and know how you are feeling. I think most of us read most of the posts to keep up with what is going on with the extended family, we just dont always respond ….. well… in my case Im such a weeny, i expend all my energy on answering one post, spend what seems like hours proof reading it, deleting and re-writing, all just for a few lines:confused:.

      I realized a while ago that I needed exactly what you said, symptom management and confirmation. No docs in my area know anything about gbs or post gbs, and my primary care physician is trying to help me manage fatigue, weakness and pain, but I am the one telling him about my research …… When I went to a medical conference on GBS a couple of weeks ago, I was blown away by what the GBS Specialist and PT had to say, they DID GIVE ME CONFIRMATION. That goes a long way, I just wish all the CIDP and GBS patients could get that.

      Im sure you feel that everyday brings a emotional rollercoaster ride, and like me and others, live for the day or possibly week if we are lucky, that brings us more energy and a smile on our face. A friend told me that her mom has names for the two kinds of days we have …. “[B]A doggie downer[/B]” and “[B]A puppy[/B] [B]upper[/B]” – funny thing is I didnt like the sayings at first, but they are growing on me.

    • Anonymous
      October 10, 2007 at 5:41 pm


      This is a good place to let your hair down. I know exactly what you mean when you say “if anybody cares”. Sometimes things just seem to spiral out of control. If you have sleep problems, everything seems to right off the scale.

      All I can say is hang in there. Anytime you need to blow off steam, this is the place to do it. We all care and realize that sometimes you get so far down that it seems that it hard to remember that there is an up.

      Never give up hope. You always have friends here.

    • October 10, 2007 at 7:36 pm

      LINDA OF COURSE WE CARE!!! I am so sorry that you are having a rough time of it. I agree, YOU HAVE TO DO YOUR OWN RESEARCH. So many times I have checked and found error in what the drs say. If I would have listened to the first 2 docs and not researched, Kevin might be worse than he is.

      I hope the methotrexate at least does help you in the end. Try to stick with it if you can.
      Best wishes for a better day tommorrow.
      Dawn Kevies mom

    • Anonymous
      October 10, 2007 at 10:50 pm

      Linda, I’m sending you Big Hugs!! You know We are All Family, which means We are here for You-for when you need to ask questions, Need a Hug! or just to vent. Give the meth alittle more time, you don’t want to start something like that just to stop half way through. It will turn out good for you-I Feel it in my bones;) Please Keep Us Updated Hun! Live for Today!:)

    • Anonymous
      October 10, 2007 at 10:51 pm

      Just that at times our own lives keep us from answering questions as soon as you would like them?
      And, YES having a chronic illness IS a very bad Roller Coaster ride! You never can expect the hi’s and the lo’s and I for one am truly grateful for the ‘hum-drum’ in betweens?

      Think of it as one sort of ‘perverse’ adventure? In that they [the docs] have to rule out EVERYTHING else before the absolute diagnosis can be ‘given’….

      Web up the ‘peripheral nerve society’ and see what ‘standards’ are being developed in the Diagnosis, then treatments for CIDP and other neuropathies…some of the medical articles are free and very informative.

      Ali – was this one of the conferences you went to? Good stuff…Just wish they could allow more patient INPUT? into the process…I mean, after all, WE are the ultimate beneficiaries of all the work…or should be –right? The ‘downer/upper’ aspect is kind of nicer than a whole slew of other words we could use. Good choices!

    • Anonymous
      October 11, 2007 at 7:10 am

      buried alive one limb at a time
      my world became very small
      unable to speak, my vision weak
      I lay there watching the wall.

      minutes passed in a painful morass
      hours and days in a foggy haze
      no sense of time altered my mind
      I was lost in an endless maze.

      Darkness descends like an old friend
      and sorrow holds my hand
      they whispered words I barely heard
      “you won’t get better, we’re here forever

      we don’t understand, can’t help in the end
      and we’re trying to keep you sad
      but we’re here to stay, you can’t keep us away
      we’ll visit you anyway”

      desperate to fight for love and for light
      a voice cries out in the dark
      “does anybody care? am I alone out there?”
      and this time the voice was mine

      I wipe away a tear and suddenly I hear
      many loving shouts circling about
      “we’re here my friend, don’t fear!
      we care that it’s too much to bear.”

      Now every day we make our way
      to help each other recover
      our voices shout, the light comes out
      and we banish the darkness together.

      (ok, I’m WAY out of practice with poetry :rolleyes: but I do care Linda and as you can probably tell I’ve felt the same way some times.)

      Love Julie

    • Anonymous
      October 11, 2007 at 8:53 am

      It is so easy to feel alone with this disease. It’s so hard to explain to people how we feel. To some, fatigue isnt a real symptom …until they’ve lived it.
      And, people like me…I dont require a cane yet or a wheelchair…I just walk slow and kind of limp. Nobody knows that I am sick…but me. And, when I tell others, they dont understand it so well, and I, too, might believe nobody cares.

      Just yesterday, Nurse Ratchett, at my moms nursing home said, “oh, why are you limping today”….I WANTED to say, “I limp EVERYDAY, you idiot !”…but, I didnt. I said, “I always limp. I have drop foot from poly neuropathy and actually, I walk rather well for what I have”.

      Who wants to go into the definition of CIDP. I dont. I didnt…not with nurse Ratchett.
      And, actually, not with many others either.

      Linda, I care. I can tell you that. I care b/c I have felt down so many times, alone, and almost freakish. I found this forum and have re-newed faith that there ARE good people in the world. People that care. Like you and like me.

      hold your head up high…it will get better.


    • Anonymous
      October 11, 2007 at 1:03 pm

      Linda you are not alone here! You can vent all you want. Just look at the stats…..many read your post and few reply! I know it is not from them not caring. I realized it is because most don’t have the energy to reply. Most are worse off than you and would trade you shoes! Trying to find the right meds and the correct dose is frustrating. We all know that, but we celebrate those few days a month when we are not dealing with our worries and frustrations. I desire to become the wonderful person that my dog thinks I am is a full time job for me! Live up to those goals! Lighten up on your work load and know that your family know you would if you could. Set your priorities and chip away at that list. Sounds like your still taking care of others too! Yes, they say take care of yourself and they mean it! WE DO TOO! This time of the year with the lenght of the Northeastern days getting shorter and the increase of cloudy days does not help! When you are just sitting there thinking of what you need to be doing. Take time out to think about what you would like to be doing. I look at Ken’s photos he posts and I check out travel packages around the world. I think of a resturant I want to go to and plan a menu at home that compares! I might go to a site and read a few jokes. I try and remember them to tell others. It helps me to laugh! Don’t let life get you down! Let it life you up! Take a load off and follow your dreams. Our minds are going faster than our bodies are able so let us know where your Journey takes you! I suggest some of the other posts on this board is a great help too! See the bright side and the light side too! I am thinking of you! HUGS! I know that most of the people here are more private than you realize. I have stuff going on and I don’t put it in print. I don’t have the energy to post to each message. But you can be sure we all care or we would not be here looking for answers. Your post has ruffled a few feathers from friends. The others are seeking the same things you are. You are not alone! Remember that! Journal…come up with one word that is possitive and decribes your mood or day or the way you feel. Write it on a calendar. Do it in the morning on how you feel and in the evening the way your day went. Today is a chilly morning so I got up and dug into the blanket on the couch by the end of the day I will warm up and the chill will not be there….I see it as my day has gotten better! It is your choice to see the glass half full or half empty as they say! I like to see that someone has gone grocery shopping and saved me the trip for today! Turn on some bright lights and look in the mirror and say “Good Morning Sunshine!” Do you have a favorite song that will bring you out of your troubles? I will tell you mine if you tell me yours. I am sure there are others that have favorite songs too! Hang in there and just don’t smile! LAUGH! Laughter is the best medicine as they say! 😀

    • Anonymous
      October 12, 2007 at 12:30 pm

      oh my gosh!!!! I am so so so sorry! I did not mean to hurt anyone by my careless and selfish post. I was just so sick of myself that I was like, who really cares cause I don’t. I was not implying at all that you guys don’t care and have not shown concern. If it weren’t for you I would be way worse. Please accept my aplolgies. Please? I feel terrible. I know others are worse than I am and I didn’t mean to imply anything else. I guess I will learn to rethink before I type. Thank you to all who have taken precious time to write me and respond to this and set me straight. I am thinking of you all with great appreciation.

    • Anonymous
      October 12, 2007 at 2:22 pm

      Linda: No need to apologize. As many have written it is easy to get into that place where it seems like noone cares I have been there myself all too often. Noone really can understand what it is like years after being sick to deal with this day in and day out. And many people do not care. But not the people on this forum. We all know what it is like for ourselves or those we love. So you didn’t make me feel bad-I know what it is like. I would recommend a physicist if you haven’t seen one yet. The doctor I saw got it totally-changed my meds, put me back in a wheelchair among other things. As hard as it was to accept his recommendations it changed my life and so far has eliminated my chronic pain. I have to live within my limits but I am doing much better when I do. Anyway, a physicist is a different kind of doctor and helps you manage all the meds and all the residuals. Might be worth a try. Good luck. Jeff

    • Anonymous
      October 12, 2007 at 2:44 pm

      Hello Linda,
      I hope you will still come back and read these because we are still saying that we do care, some of us just respond late. I wish I could answer every post, but some things I can’t relate to and I can get 100% overwhelmed by my own life, having severe CIDP and being caregiver to an invalid mother. I think many of us battle three chronic disorders; CHRONIC SYNDROME, CHRONIC FATIGUE AND CHRONIC STRESS. Don’t worry that we won’t understand your post, many times when I am struggling I feel like no-one cares.

      Will a hug help?


    • Anonymous
      October 12, 2007 at 2:56 pm

      [QUOTE=jeff] Anyway, a physicist is a different kind of doctor and helps you manage all the meds and all the residuals. [/QUOTE]

      Jeff, do you mean physiatrist?

    • Anonymous
      October 12, 2007 at 8:42 pm

      Hi Julie: Yes I do mean a physiatrist-the mind is the first thing to go. :confused: Thanks for the correction, Jeff