need a prayer

    • Anonymous
      November 30, 2009 at 4:09 pm

      Dear long lost friends. I use to post as Cindy H. on the GBS site before being confirmed as a CIDPer. I was a senior member then and this site literaly saved my sanity. Today, 15 yrs post onset I still feel guilty about having to take pain meds to control the horrific pain i am in on a daily basis and then there are those 2 huge flare ups, one in summer and one always during holidays. See i come from a family of recovering alcoholics/addicts and some believe i am just drug seeking……I myself am an 11 year old sober alcoholic. Real age 52. I feel lost, alone and completely useless. A few years ago on this site I was the rally of hope and steadfastness for newcomers and old timers. But these past few years (4) I have been in a constant state of moderate to severe flare ups. See my only son died 2+ years ago and i am deeply in need of your life saving hope, and encouragement.
      Ladyhawk/Cindy H

    • Anonymous
      November 30, 2009 at 7:38 pm

      I am glad you posted. I am in diagnositic lymbo and am also in recovery from addiction. I am taking pain meds to get through today and i keep hoping that tomorrow I wont need them but each day comes and no change. I too carry shame for taking them but then I ask myself honestly could I get through the day with out them. absolutely not. even asking a doctor for pain medicine is hard for me. It sounds like you have been through alot. I hope your family can one day understand the nature of your illness as I am sure that they hope others would understand theirs (alchoholism). perhaps they should shut there eyes and imagine their nerves being eaten away and growing back and then eaten away again and ask them what their method of pain managment would be.

    • Anonymous
      November 30, 2009 at 8:01 pm

      Dear Tara
      Thank you for coming forward, i was leary about revealing too much about myself, but God knows if we can’t be honest here about this disease process then where do we turn. I also should have said i come from a family of Doctors and nurses so as not to scare folks off. I also was in the medical profession for 17 years before getting CIDP. After screaming into my pillow night after night from the pain and spasms I cried Uncle! See I tried neurotin, prednisone, take IVIG all the time (which helps) but to no avail. The return of the eating green monster on my nerves seems constant these days. Must call the new neuro at my IVIG place who now handles my case. For more than six months out of the year I am in extreme pain…..So my medical and humane side tells me my higher power did not expect me to suffer in this fashion. The recovering person in my head says this is taboo, but i have come to believe that truly if we weren’t in recovery; would we even be having this conversation? The answer for me is no. I will not live like a wounded animal screaming in the night for someone to shoot me anymore, so for me I have chosen to take the lowest dose of hydrocodone I can. The pain management Dr tried slow release morphine and oxycotin on me and I was an over medicated nut…So Tara perhaps this thread was more for you than me, see i thought I was alone. But sister im here for you and I believe we have the right to live with pain free dignity. Alas i hope i spelled things right.
      Have courage and get what you only need to manage your pain.

    • Anonymous
      November 30, 2009 at 9:31 pm

      Big congratulations on your acheviement of 11 years sober.
      keep it up your doing great!
      I am so sorry for the loss of your son.
      You have gone through a lot with the GBS/CIDP, your family, the loss of your son and the constant pain your in.
      It helps to talk about the feelings you have and a professional can help you do that. In the mean time try talking to a friend or family.
      Come here and vent, we are here for you.
      Mabe some grief counseling to help with the feelings you have over the loss of your son.
      Your not alone, we are here.
      Your not useless, I see that by the reply you made to Tara.
      As long as you try to help another as you did Tara, you will never be useless.
      Remember we are here for you.
      Best of luck

    • Anonymous
      November 30, 2009 at 11:42 pm

      Some people do not believe in using pain medication. I found out that for ME I HAVE to. I used to scream so much I thought the neighbors would call the police. My good friend suggested I take my own life as she couldn’t stand seeing me suffer.
      I am on strong pain meds/Fentanyl Patch and they work. I realize these pain meds can be psychologically additive but the relief I get has real measure.I do not get fuzzy on these meds and can drive safely. The CIDP causes the fatigue/problems that may keep me from going any where that day.
      Family/friends have little idea if they have not truly endured long lasting intense pain. When someone remarks their back hurt for 3 days and they now know how I feel?? I don’t answer. How can I without saying more than I want to.

      I go to a pain specialist-he’s a phydiatrist (Not a psychiatrist-no no-big different). My guy trained in pain management/rehabilitation. We have worked together to find what helps me. He still doesn’t understand CIDP but he said “pain is pain”.
      Having IVIG and using the pain meds is my magic helping combination.
      When I went to the ER for pain before being diagnosed I was treated like dirt. I learned from this and it was a sad lesson.
      Check out either Main or GBS Forum post 3+ months ago “Hellaversaries” for some real talk about pain.Search all of GBS/CIDP Forum posts for pain/pain meds/nerve pain.
      Good luck.

    • Anonymous
      December 1, 2009 at 12:05 am


      My prayers are with you. The physical and mental pain is obviously taking its toll on you. I will pray for you– and your family!


    • December 1, 2009 at 4:12 am

      Hi Ladyhawk,

      Why suffer?
      Extreme pain or even lesser chronic pain is debilitating and destroys the ability to sleep and function. I will pray that you get all the medical help you need for your pain and the CIDP. You overcame your alcohol addiction and are aware that pain meds are necessary and not to be feared unless you abuse them and then hopefully you would seek help.
      I am sorry that you lost a beloved child in the midst of all your distress.
      Have faith in your heart that in time things will get better for you and I know our prayers will be helping you.
      Here is one of my favorite prayers: Before you go to bed, give your troubles to God. He will be up all night anyway.

    • Anonymous
      December 1, 2009 at 4:16 am

      Your courage inspires me. I understand how challenging it can be to give up addictions. I struggled with smoking for 12+ years and it still calls out to me when I am tired and frustrated. Sometimes I even hear it… 😮

      OK I’ve been sitting here for 10 minutes trying to decide whether to say this or not and I’m just going to throw this out there BUT I need you to understand that this is just theoretical information and not meant to be taken personally by anyone reading this. {deep breath} Long ago when I was too young to understand we discovered that not only was I allergic to narcotics but that I also don’t need them as my body produces endorphins on it’s own in response to pain. I have multiple examples of this before I got to the age of cognisance and even more after I became an adult – including breaking bones but not feeling it; passing kidney stones the size of a grape; broken ribs; slipped disks and on and on and on. I might feel some initial pain but it goes away. On the flip side I have all the side effects you would expect from narcotics as well – dizzy, nauseated, constipated etc. so it’s not a total free ride either. Here comes the weird part – I have had several of my doctors say to me that my brain is actually interpreting pain differently and that people’s brains are responsible for the level of pain they feel and the duration of that pain, in addition to the location (look of referred pain if you don’t know what I mean by that). For many years I just sort of tucked that information away with UFOs and winged serpents but the last couple of years have forced me to reevaluate that theory. Why? Because I’ve been able to convince my brain that pain is not pain – that it is either warmth or coolness – I seem to have rewired my pain pathways, deliberately, and fairly successfully. I trained my brain just like a dog consistently reinforcing that pain was not pain it was warmth or coolness and now… despite my skepticism… it happens without me even thinking about it. I get pain and then it feels warm instead – or cool depending on the location of the pain (my face tends to feel cool instead of warm). I never believed it would actually work to do that and it’s not 100% either but it’s still pretty amazing when it happens all by itself – there is pain, then there is warmth. 😎

      So I’m just throwing that out there – I know I’m not really normal, I get told that by everyone I come across in the medical and social arenas – but I’m sure I’m not unique either. 🙂 Not being able to take narcotics I was forced to come up with alternatives and despite being skeptical about rewiring my brain I managed to do it anyway. If I can do it I know other people can too. And if anybody does try this I’d like to hear about it, I know of two other people who can do this so I’m just curious if there are more.

      Thanks for sharing Ladyhawk


    • Anonymous
      December 1, 2009 at 9:36 am

      Hello Ladyhawk,
      I am one of the old timers and I go back to our old forum. Remember that you’re not alone, you have family here. If you need a friend to talk to, just click on my user name and here I am. I can tuck another person under my wing.

      Many of us understand grief. My mother died about two years and I still feel such guilt and remorse because I don’t know if she understood how much I loved her.

      Take the pain meds that you need and don’t listen to what others think. Here on the forum we feel what you feel and we understand.

      From my heart,

    • Anonymous
      December 1, 2009 at 11:15 am

      Hi Cindy,

      I’m truly sorry to read what you’ve been going through. You are definitely in my prayers.

      Regarding medication; You have to do/take what will help your pain as well as cope. You’re cognizant of what you’re taking and of your previous history, so that’s a plus.

      A few members of my family also have addictions to medication/alcohol. Because of this, I struggle to wait as long as possible before taking anything as I believe addictions can be hereditary.

      In fact, before reading your post, I was sitting here debating taking half a Valium as the stress today (at work) is overwhelming. The Valium was prescribed as I suffered a loss almost 2 years ago (my younger brother passed suddenly). Daily medication for depression caused too many physical issues so I’m allowed to take Valium as needed. At times, I can go weeks without taking any, but lately, it’s been at least ½ Valium (#5) daily. It has an added bonus of helping with the odd pains/sensations.

      Hang in there. We’re here for you.

      Take care,


    • Anonymous
      December 1, 2009 at 6:59 pm

      Thank you to all who suported me and understood. I too wait as long as i can before reaching for the pills. Taking as directed so as to keep my clean date. Something that is soooo important to me. I do know from my medical back ground that addiction is in the genes passed on to our children. I also am 2 credits and my internship away from being a Drug and Alcohol counsler, also working on my MSW for my major for counsler. Even if i can’t spell! I am blessed to be smart as a whip. This management of our CIDP can at times be the best of challenges and can be won. For many years I could not walk or brush my hair, ect…..I too rewired my brain, from bed, willing and telling my limbs that they were healthy. And one day I could move my thigh muscle at will. What a day that was! I proceded for many years to will myself into the brain network and to this day know that what i tell myself has a lot to do with what I can actually do. So for today i must tell you all good souls; it was a golden day. I actually cooked, went to the Pharmacy (yeah more drugs lol)
      and am now filled with a heartfelt love for all of you who understand. Thank you.

    • December 2, 2009 at 8:20 am


      Glad you’re back.

      It’s no accident that our bodies were created with the capacity to heal. It has been a lot of work for me to regain motor function. (I was thrilled to be able to button my shirts again, turn the key in the ignition with my fingers, and the day I ran was amazing. My greatest fear is that I force myself to go too long between treatments and that my regression will go past the point of my bodies’ capacity to heal.

      I have prayed for you … Almighty Loving God continue to heal CindyH and keep her CIDP antibodies at bay. Heal her nerves and regrow the lost/damaged connections to her muscles and senses. Protect her from medication dependency and allow her the strength, encouragement and committment to complete her education and internship so she can help those who need help beating their own struggles. Surround her the support that can only come from fellowship with your people.

      In the love of Christ Jesus … Amen

    • Anonymous
      December 3, 2009 at 9:52 pm


      Sometimes life is hard. Well, it is often pretty hard. No wait. Sometimes it stinks. Well maybe it is depressing. Oh well, Scarlett O’Hara said that Tomorrow was just another day.:) 🙂

      Pain stinks, really. I have to take more than I want. But if I desire to move around and be mobile, it is necessary. If I didn’t take meds, I could not walk. So I take ’em and I walk some.

      My counselor at Voc. Rehab told me once, “No matter how bad it gets, you will get THROUGH this.” He visioned it like a tunnel, and there was a way through. The other side may be very different than where I was before, but I could get THROUGH. That talk was in late 2004. We have made it through.

      Something to think about… Happy feels nice. it is a great emotion. The most surprising thing is that happy feels good whether you have $5,000 in your pocket, or only 5 cents. Happy is happy.

      I resolve to find happiness every day. My choice.

      Take care
      Dick S