ER Visits/Pain/Medical records

    • Anonymous
      June 21, 2006 at 10:49 pm

      I’ve been on strong pain meds before I was diagnosed for severe CIDP. I’ve been to the ER a few times when the pain was out of control and the doctors thought I was “drug seeking” for pain meds or even having a “panic attack”. It was obvious that’s what the doctors thought-the horrible rudeness and comments. I was told later that my hospital records will show that-the drug seeking.
      I’d appreciate any info/advise you may have to reamy this situation-it can happen again. I certainly am scared when the pain esculates at night. Even my pain management doc tells me to avoid the ER and that says a lot.

    • Anonymous
      June 21, 2006 at 11:00 pm

      Hello Friend,
      I can’t relate to this, but any replies you get, I would print them out. They should help you show that pain issues are REAL.

    • Anonymous
      June 22, 2006 at 9:19 am

      I can relate to your ER problem. One morning I could not move, hardly at all. The phone was ringing and I could hardly move my legs. I wormed across the bed and worked myself into my walker, used all my strength and finally worked my way up into my walker. I inched my way to the phone and picked it up. It was my home PT who was coming. I inched over to a chair to wait. When she came I could hardly move or stand. She called an ambulance and it took me to the hospital.

      They ran some blood tests and all that stuff they do. By the time the doctor came in 6 hours later. I had recovered and could manage myself. He said there was nothing wrong and sent me home in a taxi.:mad:

      I think you have to be obviously broken, or bleeding to death for them to take you seriously.:rolleyes: So much for the ER. :p

    • Anonymous
      June 23, 2006 at 2:59 pm

      I get so distressed not being taken seriously when it comes to health issues. So many go through pain and disability, and it is the LAST thing we want to have to live with. We want so much to be healthy and live a ‘normal’ life, and someone comes along to destroy our confidence because its an easy out for them. I am sure there are tons of people out there who are drug seekers, and who positively thrive on being slightly ill, or pretending to be ill, but surely the doctors should make some effort to evaluate each case differently, but they dont.

      Sorry I have no suggestions, I too worry about having something happen at night again, and just pray that it doesnt.

    • Anonymous
      June 23, 2006 at 5:06 pm


      I would have to assume those strong pain meds require a prescription. If so, your doctor has prescribed them to cover a certain interval. Here’s your prescription, now that should last you a month, as an example. When you eat them up in 2 weeks, then hit an ER for more, you should expect pretty much what you got. Your records will show you are not following directions. They see it as another form of doctor shopping. Remember folks, pain is the number one complaint doctors hear every single day, and what do we always want to cure it? Pain pills. They see 50 times more drug seekers, then GBSers in a career at least. I’ve been there done that with doctors and pain meds and had my share of closed mind thinking. This may not be the case here, but did you see the doctor you got the prescription from, and discuss adjusting quanity for issues like that? Your pain management doctor and you should be the only ones involved in getting the problem resolved. Start there if not already. Either that, or find a mexican pharmacy to sell them to you without a prescription. Hope you find relief.

    • Anonymous
      June 23, 2006 at 5:29 pm

      Wow ….. i wonder if its only me who finds your post slightly abrupt/rude? I am not personally on any pain meds, but I would think that its not as black and white as you make it seem. I am sure that limekat is working with the doctors to try and get the problem solved, but we all know its not as easy as 1 2 3 and often takes a long time with a great deal of pain in between. What does one do when you are in great pain in the middle of the night and just need it to stop?

    • Anonymous
      June 23, 2006 at 5:43 pm


      I could possibly have totally misread your post, ๐Ÿ˜ฎ and I am sorry if I did that. Maybe I take offense to easily, or maybe its just the new meds :rolleyes: … probably jumped in where I didnt belong.

    • Anonymous
      June 23, 2006 at 5:54 pm

      Once something gets into the records you’ll have to deal with it for ever, i have learned. That hospital visit I referred to before mentioned a psychiatrist that was leading the treatment for my late husband who had very very very advanced alzheimer’s. She asked me to let her have a look of my meds because she said she didn’t like the way I looked. (I was too harried to care, but i dont think i was so bad.)

      [So I went and she increased my amitriptyline from 25mg to 100mg. She said that was the correct dose for pain. She said for depression one needs 300 mg.]

      Anyway, in the hospital after all those hours waiting and waiting, they brought up the psychiatrist “I had been seeing” I think to support their position to negate my ER visit. I told them she was my husband’s doctor. (have seen one of those several times in my life, but not here where I live.)

      I guess I am automaticly in that catigory and will never be believed in the ER… (They should have to live with one for 15 years and see how it is to be negated that way.)

      By the way, I am not ashamed of my meds. I take 100mg amitriptylene, celebrex, maxalt, excedrin, neurontin, all for pain and I still am hurting most of the time.

    • Anonymous
      June 23, 2006 at 7:12 pm

      Hi again,

      Thanks for re-reading the post and getting the proper take on things. Everybody can deal with problems in any way they want. Myself, through my experiance, I deal with everything honestly and truthfully, and most of all, what is real in people’s actions, not words. A nurse says see ya in 5 minutes, but 45 minutes went by, and it’s repeted the same every time by her actions, what is real, truthful, and honest? Words or action? That’s why I say don’t you mean see ya in 45 minutes looking them in the eye. I do not dance around medical issues or anything GBS. Whenever I go for a change of something that requires a person’s approval or script, I put myself in that person’s chair and ask questions that they may ask. Knowing pain is number one complaint to docs, knowing they are being monitored for how much pain meds are being despenced in their practice, knowing how society has geared itself over the years to run to pills to fix everything, knowing the amount of doctor shopping to get prescriptions going on, to walk in and say I need more pain meds, what I’ve got isn’t enough, will elicit a negetive, defensive responce. No matter how ligit the problem is. Again, I experianced just this kind of thing too when my meds needed adjusting. Approaching a doc has to be done wisely and dileberate and appeal to there common sence and their lack of knowledge with this disease. What does one do when greater pain comes on unexpectedly? Which is the case here. What I did and do, is take extra pain meds from the prescription I already have ongoing. Then I called the doc and had him up the quanity to cover such unexpected trama. After explaining what and how these issues occur, and what I was up to. He upped them a bit, but I got the lecture still about getting out of control. I already though, established a trust between us an understanding that I as the patient have to be trusted to make med decisions for myself, and that I’m not an everyday patient with an everyday disease. He knows my pain is different, but he still puts me inside the box at times. One phrase I pound out over an over with my doctors is ‘quality of life’, which I don’t believe enough of us remind the doctors of that, as part of our defence. Remember, doctors are constanly drilled on addiction and their use and despencing of pain meds, but very rarely hear they are needed for a better quality of life. For those with real pain, and pain meds increase the quality of life, addiction doesn’t enter the picture really. When 6 vicodin a day covers the pain, but you want 8 or 10 a day, then the high is what a person likes, and what to watch out for, as an example. The pain is covered and better people then me lost control, and doctors know it. Pain is pain and has to be delt with to satisfaction in any manner as far as I’m concerned.

    • Anonymous
      June 23, 2006 at 9:07 pm

      I like your a honesty. I try to do that. My neuro asked me if I am still taking zocar (for my stroke 6 mo ago) I told it makes me very sick. And that I am not looking for a couple more years in my life, but i want to be as comfortable as possible so I can enjoy it. My neuro smiled (a real one) and we were in agreement.

      Then I saw my primary and he asked the same question. I answered the same. I don’t want to be sick, not hooked up with tubes, machines, etc. I worked in a hospital for years and saw some horrible hideus things. A man with contracted elbows, no legs, no hips. I don’t know who was trying to keep him alive–he had IVs. But that was in the 70s which was when patients desires were second to the doctor’s; “duty” so KEEP HIM ALIVE. At all costs. And that was usually high. Excuse the pun. I am very sincere about this. I have given all my doctors a copy of my living will

      People will disagree with this but what is that for? It’s me and my life and my choices.

    • Anonymous
      June 23, 2006 at 10:16 pm

      I didn’t know my thread would affect folks so.
      I had been seeing a pain doctor in a huge practice for 5 years and he thought I had Fibro (counted at least 12 different ones). His nurse repeatedly with her back turned called me a “mental case” and asked if I was selling my drugs on the side. I was so shocked but keep my mouth shut.The pain escallated.
      I now have a different pain doctor and I feel like we’re communicating.He knows I have CIDP, I’m trying to educate him on it and the IVIG has lessed my need for pain meds. He said to let him know if I needed more.
      A few years ago I went to the ER with stomach pains, the ER doctor cursed me and said get out. My friends had to beg for me to even be examed. In less than 36 hours I was told I would die. The hospital informed my friends that I HAD died.
      I just wanted to know how to amend my ER records is possible.I won’t be going back there unless I’m carrying my leg.
      I honestly didn’t know how to deal with doctors-I must be my own best advocate.
      With my diagnosis I have become stronger-I know why I hurt.For some reason I find comfort in knowledge.

    • Anonymous
      June 23, 2006 at 10:57 pm

      Hello again.
      I think a lot of people have issues with their pain and their need to get “help” that helps. My first dx (doc was my husband’s uncle) thought I was just neurotic (him and the rest of his family). Then meneir’s, then Fibromyalta (which was promptly thrown away).

      Next I was sento to Scripps in San Diego and got “acquired inflammatory neuropathy (my copy of the dx.–the My old primary got more details. I never got any treatment or any more discussion. The whole thing was dropped.
      Next, we were sidetracted to my husband and his decline.

      Then I got to have :rolleyes: fibro again. Then chronic myofaciel pain (with muscle injections & PT. Then my new primary threw out the fibro (so did my husband’s psychiatrist.) but he gave me very good medicine for my symptoms. I was having a migraine every day or night so I got to see a neuro.

      He took me serously and we discussed my condition. I finally found out that the official name for it was CIDP. I studied that on the computer–many excellent sites. I was told there is not treatment so then:rolleyes:. I finally got some serious attention when I had my stroke. Everyone
      digs in with that. Friends, doctors family–I finally had something they could deal with.

      I’m sorry if I sound curt. I have had a migraine for 3 days running and am grouchy. My ins. limits the quantity of maxalt they will pay for. I have to exist on excedrin and save the maxalt for this weekend. My children and theirs and theirs (ggchildren) are all going to come here for a reunion. I can’t be grouchy then. Sorry for complaining.

      Hopfully one of these days I will have gotten it all out and then maybe I can comfort others.

    • Anonymous
      June 23, 2006 at 11:47 pm


      I didnt re-read your post and get a proper take on things, I just thought I might have overreacted to the way you ‘spoke’ to limekat, afterall, you didnt direct your harsh words to me, but to someone else. I dont enjoy it when someone else speaks to others in the way I thought you did, specially since I dont believe you know the particular case personally, and to pass judgement like that is somewhat harsh. We both agree that things should be dealt with honestly and truthfully, and MOST of us HAVE dealt with REAL pain and the all difficulties associated with it – believe me when I say that I think most of us have similar stories to you. Not everybody is as lucky as you and has managed to “sort” things out, so I believe a little sympathy and understanding goes a long way in trying to help and understand other peoples pain, specially if their doctors arent willing to work with them, as in many cases on this forum.

    • Anonymous
      June 24, 2006 at 12:11 am

      Patricia Ann,
      My family was the worse. The Big non-believer my dad till he heard the CIDP diagnosis. He had just read about it in his medical literature. He asked my sister if I would be in a wheelchair. He won’t talk about it to me. They now can feel things are okay between us.I really try to forgive their former comments.I do try.
      Today I went outside and sat in my yard with both hands in dirt planting little seedlings. Just me, dirt and the evening breeze.
      May you have pleasant dreams.The comfort will come.

    • Anonymous
      June 24, 2006 at 12:19 am

      Patricia Anne,

      The forum is here for support and help, you are not moaning or complaining, and besides, it helps to get it out there where others do understand what you are talking about! I have moaned and felt sorry for myself, and others have just been there and listened, and when I have good days, it is wonderful to be there for someone else.


      I think the greatest therapy is working in the garden, just wish it wasnt so hot out there at the moment.

    • Anonymous
      June 24, 2006 at 10:31 am

      Thank you Ali. I feel so good when folks say things that help me get out of the hole I’m in. I almost shed a few tears when I get messages like this one.

      Patricia ๐Ÿ™‚

    • Anonymous
      June 24, 2006 at 10:53 am

      *dabs her tears away*
      .. It’s ok to cry, heck i do it all the time.. releases the negative ions… I mean don’t u feel better after a good cry?

      Get wild and come with me little girl, on a magic carpet ride.
      I once helped the band Steppenwolf load out of music city, my claim to fame.. Here they are years ago on a talk show. I hope u have a good internet speed so u can watch it.
      take care
      John Kay, the singer, has been legally blind since birth. Nashville has been their hombase for the past few years, but Mr. Kay recently moved to canada i read.

      Ain’t it good to be alive and be in Tennessee.
      Charlie Daniels said that.
      Hell yeah.
      I said that.


    • Anonymous
      June 24, 2006 at 1:23 pm

      Hi again,

      Limekat, my mistake may have been precieving you as male. So, I wrote to you like a male. Ali, I guess, thinks we males should turn into women, and enable your emotions first and stroke your feelings and make judgements condeming doctors and hospitals without ever hearing the other side of the story, just on the little info you provided. The ‘I want to be your friend first’ syndrome. Fixing the problem can wait. And we wonder why this disease seems to take so long and go so slow. My need is to help people recover and live with this disease, and navagate a trecherous healthcare system, to speed relief up and recovery, and get doctors working for us, not aginst us. Being a friend can wait. This is just a male prespective now, and why very few males participate in forums dominated by women.
      What I tried to point out with people like us who have ligit pain not getting tottal relief from it, is that basically, we are between a rock and society in the drug area. It is very common knowledge in general society, the view and stance doctors are having to take despencing drugs these days. I’m surprised at the amount of people here who don’t realize this aspect, or refuse to acknowlege it. Does everyone know foresure that there are two factions that have control over your meds? One is the doctor, and the other is……..your insurance company. The people who have problems with pain meds getting out of control, if you were to look at the truthful eveidence, it was the insrance company that cut off the meds, not their doctor, in most of those cases. Now the government monitors a doctor’s practice or family clinic, and so do the insurance companies, keeping track of opiate based drugs being despence from there. They think the level is too high, they come in and audit the office records. Docs don’t want that headache, or reputation as a place to get drugs easier, so who is their only hope to keep in check, so they don’t have business problems? We the patient. There isn’t a doctor in this country, that when a patient who is on opiate pain relief already, when asked to up the dosage, that won’t immediately have negitive thoughts instantly. I looked in my docs eyes while I was asking, and as soon as he heard the words “I need more”, you can litterlly see the change in body language and red flashing lights going off, sirens going off, and he hasn’t returned a word yet. I already know what the doc is thinking, and that the first thought was I have a drug seeker in front of me. Then we make a second mistake, which is going into pleeding and convincing mode. Now the doc thinks he/she is getting a snow job. Very, very predictable. Keep in mind, they have probably heard stories better then any of us could produce, to get them. This is what I mean by ‘stuck between a rock and society’. Us ligit patients are behind the 8-ball before we even make the appointment. By just having a simple awareness of these things, gives a patient an oppertunity to approach doctors in a different manner. It’s still going to get anyone a hard time. Doctors these days want to do anything and everything, but prescribe an opiate drug if at all possable. Or even up a dosage once a track record is established. The very issue you have been describing, is what I took care of a year ago. I’m on 6, 5mg pills of vicoden a day to maintain my comfort level. In the scheme of things, this is a very small amount, and well within prescribing ranges. Not even close to be considered abusive. One day, I stubbed my toe on our 3 foot cat tree, and it didn’t even move it. However, because of my condition, it resulted in days of pain, one toe went completly purple, causing my body to adapt differently when walking to avoid the pain when weight was put on it, I upped my vicoden to 10 per day for 3 or 4 days until things calm back down, and that allowed me to maintain my proper adaptive position when walking, and not causing more pain elsewhere. This is a quality of life area, and where I put my emphasis to the doc on. Now, I’m going to run out before the renewal time, and I have to pay full price out of pockit, if I want them before that date. Insurance will only pay if you are on the date or beyound the date of renewal. So I went to the doc to have him up the quanity, to cover those odd days when I hurt myself and need more, and keep the insurance paying. As soon as I brought up the stubbed toe example, the first thing out of his mouth was ” These days everybody wants to run to the pills at the slightest bit of pain”. Right there, I know he doesn’t get it, and he’s putting me in the everyday box with society. Seeing and hearing these kinds of words, should influence a person on how their approach is going to work, and might be working up to that point. Might be the time to consider what’s going to come out of your mouth next. You have to give a doctor a reason in pretty much black and white analitical thinking terms, to want to help you. They have the key, now how do I get them to unlock the door for my needs. Doctors don’t respond to emotions. They respond to what makes sence. That’s why I push quality of life on them so much. I had to remind my doctor that we had a trust level agreed apon from the start, and that was, he was going to have to trust me that I know more on what my needs are then he does. That I can demonstrate control with these types of drugs and do my best to not let intake escalate so much. I had to remind him that my pain is different then most, and he can’t put me in that everyday box. He did fill my request, but his face told me he’s not really buying it and he certainly isn’t comfortable doing it. Weeks later, I stubbed my toe again, so I took pics of my purple toe, the skinned up knees from a fall compensating for the pain in my foot, wrote a letter to the doc, and said “Does this stubbed toe look as normal as a normal person’s stubbed toe would look? After a slow 3 foot decending fall to the floor, would a normal person’s kness get skinned up like this?” Then I told him to put this evidence in my med file, and I will request a copy of it in the future, to make sure you did. Now, he’s back to my side of thinking, and not his preceptions and protecting his biz and so on. It’s tough these days communicating with docs. Everything is going at lightning speed, so when cutting to the chase, words have to be used carefully. We walk in with a 45 minute disertation in our minds, but as soon as the doc comes in the room, that turns into a condenced version, and only one or two sentences come out trying to explain a very complicated issue. Often times with words that work aginst us, instead of for us. We can be our own worst enemy at times. You have a pain doctor who has you on pain meds, right? That would be the logical first stop. What did that doc say about helping you when those flareup days occur? Why isn’t he/she giving you a bit more quanity, is all that would take, it seems to me? Why go somewhere else for relief? You did nothing wrong, I’m trying to understand. I found a very simple fix for a same issue is all, and I just pass along a different approach to things, and it’s up to the person wheather they want to try something different, or continue along the same path of defeat. I pay my doctors, so they work for me. I don’t work for them. This is what I look them in the eye and tell them at first visits. Many doctors came threw me to get their cars repaired. Does that make me smarter, or god status then? Over them? I pay them to fix or maintain my machine, and they pay me to fix and maintain their machines. Just another human being no different then you or me. Don’t let them intemidate you like they like to do. Hope you find relief.

    • Anonymous
      June 24, 2006 at 2:10 pm

      I gave my primary my letter from Scripps, giving my dx got from there. Poor doc (he is usually quite nervous anyway and spills his thoughts to the patient even when he should not have). He blurted out shouting “YOU HAVE CHRONIC INFLAMMATORY DEMYALIZING POLYNEUROPATHY as though a bomb was smoking atop his desk. [He’s kind of cute when he does that–but I’m 73–We are allowed to think such thing that at 73.] He looked scared to death.

      I have been on crutches off and on. Mostly off. And I have a wheelchair. And a walker. I hate to use them around people that know me because they say things like “are you having trouble with your back again, dear”?
      No one can deal with the real truth. I think people (1) Don’t know what to say; (2) Don’t want to be involved with anyone with a condition like this. (3) Can’t face it. I hate, really hate it when someone tells me “there are worse things that you have, dear.” I [guess not as bad as leprosy.] I hate to be patronized that way. So I don’t do it to others. But . . .
      ๐Ÿ˜€ ๐Ÿ˜€
      sorry. Here is a Polyanna-ism.
      There is a woman in our church who comes every week to meeting. Her wheel chair is the most complicated that I have ever seen. She cannot move. There are 2 extensions, one on each side of her head–she steers by touching one or the other of those with her head leaning slightly to the touch. One day she bumped into a door. It was worse than terrible. She tipped to one side, and here eyes were wild. I will never forget it. ๐Ÿ™

      Be well, take care

    • Anonymous
      June 24, 2006 at 3:19 pm

      Hi Pat,

      Those head array powerchairs are difficult to menuver, and take a long time to get used to. I used one for almost 3 years. I’ll never forget practicing after work hours in the hospital hallways. The first thing that I realized when passing my PT gym windows flying down the hallway in a straight line, is you don’t want to get distracted and turn your head to look in them. That’s when I took a sudden right turn into the wall. Your head doesn’t have to touch the headrest to get direction changes, which I forgot about. ๐Ÿ™‚ You are correct in the preceptions people have. A lot won’t even look a person in a chair in the eyes. They look over the person, and talk to the pusher behind you. I had one guy at the hospital come up to me, didn’t even make eye contact, then asked my wife if it’s ok if he talks to me for a moment. I said you can ask me if you like. I hate the ‘there’s worse things that could have happened’ too. Each person knows their history, and if this disease is the worst thing that ever happened to you, then it is the ultimate worse. Might not be to me, but to you it is, because that’s the only real adversity you know. I know that GBS can take a person to depths that none of you here ever experianced. I feel, based on medical fact, and recovery facts, that I went to a deeper depth, or had a greater degree of damaged caused by the disease then most. If I had the recovery 90% of the people on this forum have had so far in their cases, I’d be back to work full time and life as I always new it. Only because I came out of a deeper hole. Had harder struggles to overcome to get to a recovery point that exceeds lesser damaged GBSers. From learning and experiancing, often times everything but the disease is holding recovery up. Life does get in the way. I’m no better or worse then any GBSer. I do know how far this disease can take a person though, which many, thankfully, hadn’t experianced. You felt similar things and had similar expeiances, but the degree is different. Each case, for each person, is the worst. That’s all they know, and the doctors told everyone of us that it’s the worst case they have ever seen. So therefore, each of us have the worst case of GBS on record I guess. When there’s no cure, after treatment, it’s all about having to live with the residual damage the rest of a life. That’s where we come in. How do I live with this as easy as possable, with as little difficulties as possable. That was my steep learning curve in the beginning, and what I give to these forums. Ways to live with it and get along with it. Just putting thought and choice out there for people to see and think about. Every step in this is a choice made by the person, not the disease or circumstance making decisions. How many out there have ever had to think this before you take one step forward, which is, how am I going to get back? Anytime I have to, or want to, go more then 50 yards, I have to consider that thought. Yet I’m walking farther and managing my energy better, or fatigue, better then lesser effected cases that I see here. This is an example of degree is all. My frustration comes knowing I went to deeper depths, but so far in most cases, I’ve recovered more, so that tells me something went wrong in their recovery process, which is usually therapy, or mental state, and they didn’t get what I figured out works for GBSers, not stroke patient therapy that’s the standard. In other words again, it’s not the disease stopping you. It didn’t take me long to realize that the healthcare system that most of us face forever now, will be the top headache, or stumbling block, all along the way. That’s where most of the time will be spent over the years. Knowing all a doctor can do is treat the symptons, or residuals, then the disease takes a back seat, and pain for instance, is now top priority. Get that under control, then move to the next issue. All a person can do really.

    • Anonymous
      June 24, 2006 at 4:43 pm

      racer 13

      Thank you for sharing. I don’t even know this disease yet. I have had a couple of mornings hardly able to move but no pain with that. I do have lots in my back and arms neck and head. I can’t do much because if I try I get that pain again.

      My dad died a quadroplegic from some undiagnosed neurological problem. First the stocking and glove thing. Then numness in and his lower leg muscles and they were shruncken away. Then it went up his thighs, first numbess, then muscles gone. Then in his hands, then arms were gone and he couldn’t move his four limbs. He was in a lot of pain. I had thought it was from laying in fox- holes days at a time in wwII, for years.

      I read that CIDP is not thought to be genetic. Now that I started with numbness all over (I put my hands into a pan full of boiling water–then removed them.) No pain. Kind of a worry though. But now, years later my arms and legs don’t work well. Can still walk but my legs are ready to give way–sometimes they do.

      I read on a websight that if it’s sensory, it’s CIDP. If it’s motor it’s GBS. If it’s both it’s ALS. I’m sure that is an understatement. One of my neuros said it sounded like my dad had ALS. but there was never a diagnoses. He told his doctor when it was happening and was told “Why don’t you stop complaining and grow old gracefully like the rest of us do.”? Dad never looked into it after that.

      My fear is that it is genetic. I have 4 children, 18 living grandchildren and 5 gr. grand children and a couple more in the works. If I pass this on to them. . .

      I know that fear does not help. I try to shake it off but then I cry. (Girl thing) Thanks again for sharing.


    • Anonymous
      June 24, 2006 at 5:29 pm


      As far as I know you cannot amend your hospital records. That’s againist the law. Maybe try contacting the hospital administrator and see if you can get a letter in your file explaining your illness and the need for pain meds.

    • Anonymous
      June 24, 2006 at 5:47 pm

      Hi Pat,

      First, let me say I only speak to GBS as far as the diseases go, because that is what I know and live with. CIDP is a different ballgame, and I only know what I’ve picked up here on the other. We both live with same things and feelings, but you have an ongoing treatment option, which GBSers don’t have. I would hope that your doctor has mentioned getting IVIG intervals estsblished to bring your strength and function back up after it starts slipping again. Which sounds like you have been going through. The CIDPers can shed more light on that then I. It has been establish that GBS/CIDP isn’t genitic. However, some here have had family members, and distant relitives contract the same disease. Then through being related only, it’s thought to be genic without considering any other plausable explanation. Just because. There’s a tiny spot in my brain where I save ‘the jury is still out’ on this one though. You never know, but right now, it’s not worth any emotion investment in my opinion. I have a daughter getting married next month, and I will admit that prospect had crossed my mind too. I don’t know what website told you that, but my GBS residuals can be classified as cronic, motor, sensory, axonal neuropithy. Both GBS/CIDPers can experiance some or all of these things at some time, or at the same time. Nothing to do with ALS. Dear old dad, like many who served our country up to Viet Nam, were sprayed with all sorts of unknown chemicals. The agent orange used by the military to kill folage on trees and jungle in Nam, brought out all sorts of wierd neuropithies in our solders that were exposed to it. Just like your dad had. An unknown reaction to something, and of coarse, nobody thought to go back and tie in that part to exposer during war. Now, soldiers are wising up and making that connection. In the ’91 gulf war as an example, our wise military leaders did it again. Remember seeing all those pictures and film footage of Iraq’s military convoy columns all destroyed and blown up stung out in a mile or two long line? After that destruction, a team of our soldiers were sent to inspect damage, make sure there’s no hidden life ready to attack again, then they had to clear and clean up the mess. Six months later, radiation poisening starts to show up in some solders, then we find these guys were all on that clean up duty. Well, we destroyed everything there with uramium tipped projectiles. That’s called armor piercing stuff. Then we sent the boys in with T-shirts on and kacky pants in 100 degree heat to clean it up. You would figure that when using stuff like that, that someone should know radiation exposure is a side effect, but opps, who would have thought?

    • Anonymous
      June 24, 2006 at 7:12 pm

      racer 13

      I had my first bout 1n 1985, Dx 1987. That was the end of it then. We were concentrating on chemical senstivity–I certainly had that. It sort of went away over time. Doctors sort of noted it and backed away. I moved back to CA 3 years ago and we were all giving 100% to my late husband who was in the last stages of alzheimers. Including me.

      I was having a lot of pain and my doctor tried different pain meds. He ended giving fentanyl patches. I had a stroke and my dr happened to be working that day. Asked my if I still had a headache. I said yes so he upped the fentanyl from 25 to 50. ( I don’t know the units.) Then I did not know that is a class 2 drug, 80 times as strong as morphine. The literature with it said it was for patients tolerant to morphine. At that time I didn’t know what that meant. Yes, I said. The headache was gone.

      I had a post-stroke apointment with my neuro. I was sick from the drug and we I suggested I was getting too much medicine. He agreed so I quit 4 kinds including the fentanyl all at once. No problem. So I have that pretty much that fixed with darvocet. Pain is part of life and at 73 I am OK with as long as it isn’t too bad. Usually it isn’t.

      When I had cancer in my sinuses I got out of this world headaches. He gave my morphine every 8 hours around the clock and was to take percocet in addition as many als needed to be pain free because there was NO tolerance to pain if I wanted to live. Set the alarm so you don’t miss my dose. So I did and I did. Cancer free.

      I don’t think we used chemicals in WW2. My dad would have known. I think the Japaneze did. We were able to get some lifesaving information before we attacked Japan and it gave us information where all their secret booby traps they had set up for us. It saved countless lives. My dad was privy to that

      About the genetic thing, first I have my dad, then my nephew with MS, and me with CIDP. I have 2 sisters who have neuropathy: a sister with post polio syndrom and another with a potfull of related symptoms. That gives my worry energy when I think about it. I don’t want to energize my worrying.

      Hope you have one of your better days.

    • Anonymous
      June 24, 2006 at 11:47 pm


      Maybe I can help clarify a few things like genetics, CIDP sensory, motor, etc.

      CIDP is an autoimmune disease. Your immune system goes a bit haywire and attacks the myelin that protects your axons. The axons are the pathways that transmit nerve impulses. When the immune system starts the attack on the myelin, the immune system begins to notice just how much myelin there is in the body, and begins a replicating process to destroy all of the “invaders”. There is a myelin coating on sensory nerves as well as nerves that serve muscles. CIDP’ers have sensory loss, muscular loss, but do not as a rule have autonomic losses. CIDP is a peripheral neuropathy, it attacks the peripheral nerves. In Multiple Sclerosis (another autoimmune disease) the attack is on the Central Nervous System. The demylelination occurs there. Symptoms are very similar, but the damage happens in a different way. ALS (LOu Gehrig’s Disease) is also an autoimmune disease, and once again the attack pattern is different and the result is different.

      The best information I have at this time (from several sources) is that the tendency toward AN autoimmune disease follows families, but there is not a link to any ONE SPECIFIC autoimmune disease. In my family several people have autoimmune diseases, but none aremore prevalent than any other. My sister has Graves Disease, I have CIDP, my brother and an uncle have had multiple myeloma, another has rheumatoid arthritis. On my wife’s side, there is Chron’s disease and probably some others. I have talked with my kids about this(now ages 19, 17 and 15). I told them about a tendency towards autoimmune disease, but that I didn’t know IF they would get one, and if they did, WHICH one it would be. Knowledge is key, and awareness is all I can offer. I hope that helps.

      With CIDP in particular, you will find people here with sensory loss as well as muscular loss. Some people with CIDP have very little pain, some suffer greatly. Most people (80%) of CIDPers have a relapse-remitting cycle. They suffer an attack cycle, and then recover somewhat. During the recovered period, before the next relapse, there may be little or no pain- – depending on residuals. CIDP varies greatly from patient to patient. Social Security Admin. does not view CIDP as disabling just because you have it. You need to prove it is disabling in your case. I don’t know if there is any rhyme or reason about who gets sensory loss, or who suffers muscular loss, or both.

      In my particular case, I started with sensory loss alone. In fact, the first nine or ten years my symptoms were completely sensory and were only a minor nuisance. I didn’t get a diagnosis until I was 11 years into CIDP. Since 2002, my symptoms worsened. I started with little pain, and now am in constant pain. I used to walk fine, and now need a powerchair for anything longer than a football field. I used to be on my feet all day every day, and now can barely stand 20 minutes before needing to sit own. I used to have a job (Golf Pro). I am now disabled.

      As far as pain goes. My neuro referred me to someone else for pain management. We talked at length and worked something out. Vicodan, oxycodone and the like don’t touch my pain. I have finally settled at methadone, daily. I have been on that for almost two years. If I take enough to get my painwell under control, I am nearly dysfunctional. I keep my methadone levels lower, and am able to deal with my pain levels and still be able to drive, think, and function in the world. Occasionally my pain becomes brutal. I deal with it as best as I can. That is my life with CIDP. It could be worse. I am happy for so many things.

      How good is your relationship with your Pain Management Dr.? I had a very open, frank relationship from the start. They wanted to see me out of pain, as much as possible. I was an active learner, and we came to some understandings. Between my neuropathic pain meds, and my overall pain treatment, I am under control. You should have something for continued pain relief, as well as your neuropathic pains. And then something for breaklthrough pain. If you can keep your use within their recommendations, and then are still in pain, they will probably help. You probably have regular pain management appointments, if you don’t, it would be important to have that relationship. If they see that you are trying to deal with your pain, they will help.

      It sounds like you have had a long history, and many challenges along the way. I hope things start to turn to the better for you. If I can be of any help CIDP information wise, please don’t hesitate to PM me, or ask right here. I only want to help. We all deal with enough crap all day long, at least here we can share ideas, and discuss our CIDP.

      Take care
      Dick S

    • Anonymous
      June 25, 2006 at 12:20 am

      Dick S, thank you so much. I have tried to search CIDP on the net and that’s the only resource I have. I live in the country in a small town. We have 1 hospital, several pharmacies.

      Your explanation makes the best sense I’ve come across. We do have a lot of neurological problems among our families. Autism, MS, CIDP (me) Something like ALS undiagnosed, Post polio syn., severe allergy damage, and, would you believe my grandparents are first cousins. So you could say we came by it honestly.

      I’m glad you posted that information. I don’t have a pain managing dr. I don’t think there is one here but I will ask my doctor. I have a new one who has spoken with me for about 10 minutes. My former one gave up his practice and moved away. I still have my neuro. I will bring that up. I hate being on drugs. I still remember the fentenyl haze. I am trying to get on the headache forum but am having trouble. My headaches are daily, either severe or mild. I wake up in the night with a hard occipital headache that grows worse if I don’t get up. I tell this to my doctors and they just stare at me. ๐Ÿ˜ก

      I worry about the CIDP and dream about controlling the migraine. I’m 73. Maybe I won’t have to put up with these miseries for too many more years.:)

      Thanks so much. You’ve given me something to think about.