AnonymousJanuary 13, 2013 at 9:58 pm
I’m 6 years out with CIDP. A re-check last year at the Mayo Clinic verified that I have permanent nerve damage in the legs.
I have been taking oxy, gabapentin, and amitriptyline for most of that time. I have cut back the gabapentin to 100-200 mg per day, as the analgesic effect isn’t particularly strong and I really dislike the zombiness of it. Last spring, I visited my hospital’s pain clinic again. The pain doc is also a pharmacist. She thought that I had been becoming increasingly tolerant to the oxys, so switched me over to Methadone. It works somewhat well, but I still take several fast-acting oxys each day, too. I don’t have my pill bottles with me right now, and I just don’t want to get up and walk into the other room, something some of you may related to. This is one of my biggest issues with pain, the way that I avoid even small acts of walking to another room, upstairs to my office, driving and getting into and out of the car, and even having to prepare a sandwich at the countertop, only to realize that I have to turn around and walk two feet to get the mayo out of the refrigerator. Cleaning dishes in the sink, I often don’t finish up doing the same level of cleaning that I started with, causing my wife to criticize the way that I wash dishes. I start strong, but have to finish as quickly as possible due to the pain.
Activity causes pain the next day, and sometimes beyond. In December, I had been a little more active than usual, and soon paid the price. I tried to manage this by taking a couple of extra oxys. When I have done this in the path, I know that I will be running low by the end of the 30-day prescription. But I don’t really mind that too much, and I kind of enjoy the challenge of toughing it out and seeing how it feels. I was surprised, though, that I bothered me more than usual this time. Basically, I wound up doing a taper of both the oxy and Methadone, running very low in the last few days.
I had to spend those 3 days in bed, and could walk only with great difficulty, leaning heavily against the wall. I am no stranger to pain, of course, and I have learned to focus on my work as a composer and professor. I have cried several times, even sobbing when my wife is not around. She has never seen me cry and I don’t want to burden her with my pain more than I have to. She can always tell when it is bad though, because my face looks drawn and tight. The last two days before my refill found me screaming into my pillow, something I have never done before. This happened 4-5 times each day, for 5-10 minutes each time. At the end of the second day, I couldn’t prevent it, so my wife heard me loud and clear.
Suicide is something I have never, ever considered under any circumstances. I enjoy life and doing my work. I love working and love my wife and my mom and sibs. There is no way that I would ever do such a thing, for those two reasons as much as anything else.
But the pain and screaming really threw me. I don’t know what I would do if I became bedridden and in such a level of pain on a daily basis. It was nearly unbearable. I could not understand how I could justify living the rest of my life in such a condition. Even though I am taking the meds again and am able to work on my music in my upstairs studio, and not screaming, I feel very, very weird. I have nightmares about the pain, and I awaken frequently with a start.
Do any of you scream in pain? Are any of you bedridden?
AnonymousJanuary 13, 2013 at 11:29 pm
Took me 3 tries to log in…geez.
I wanted to know if you were in current treatment for your CIDP?? Having IVIG regularly ?? Steroids? For me having IVIG 4 times a month helped control the nerve pain (demyelination). If you are not getting treatment for CIDP then why not?? I wear the 72 hour Fentanyl Pain Patch 100 mc. It helps with 24 hr pain control and I take Vicodin for break thru pain.
Before I was correctly diagnosed with CIDP (semi-bedridden) and started aggressive IVIG my nerve pain was so horrid I would go to my back bedroom and scream till I no longer could. My best friend said my pain was the bad she would understand if I chose to no longer life. The awful non stop pain noise that wouldn’t go away. I’ve been where you are. It made me afraid of returning pain of any kind.
I have found most pain docs don’t get CIDP…they just don’t understand the intensity of our nerve pain. Since you are running out of pain meds by the end of the month this is a big indicator you need more pain control. Your pain doc needs to help you handle your pain because you deserve it. If she can’t or won’t you need to find someone who will.
Please take your wife with you to your next pain doc appointment and please please let your doctor know what you just wrote?? OK?? I am so sorry you are in this kind of pain. You do deserve to have a quality of life without pain.
AnonymousJanuary 14, 2013 at 12:34 am
My main purpose in going back to the Mayo Clinic last year was to see if I could have more IVIG treatments. Initially, I had them 2-4 times a week in the hospital. On returning home, I had 2 a week for a month, the 1 a week for another month. That was it. I also took Prednisone for 8 months, tapering down.
At the Mayo Clinic (my doc’s name escapes, but he is mentioned frequently in this forum; not older fellow or his son), I asked about more IVIG. After some nerve conduction studies, he gave me his conclusions. First, he said that I had made the greatest improvement of any CIDP patient he has had. Second, since I hadn’t had any more attacks in the five years since my first one, he predicted that I wouldn’t have any more. Third, he said that further IVIG treatment was not indicated. He mentioned the Hippocratic concept of not doing more harm, saying that there is a risk inherent with that treatment which outweighed any possible benefit.
When I was taking a higher dose of oxy several years ago, I didn’t use a cane. When I went to academic conferences, I could easily walk around all day, sometimes walking 5 or so blocks to lunch.
I appreciate the efforts of my family care doc. But he doesn’t seem completely up to speed about pain. For example, for a couple of years, he kept saying that I should get off the opiates, as those have been known to actually cause pain. I read what I could find on that subject, and it sure did not seem to apply to my situation. When he suggested another visit to the hospital’s pain clinic, I asked the doc about this. She said that, first of all, this is a very controversial subject. Secondly, this did not fit my profile. Under that scenario, a person would feel an increase in pain very soon after ingesting the pills. Furthermore, the pain would be felt all over the body. In my case, the pain always decreases after taking the pills, usually after 40 minutes. Additionally, my pain has always been below the waist, never, ever above. Usually most severe in the toes, feet, and lower legs, below the knees. When the pain gets very severe, then it rises to the thighs and quads. The intensity is greater the lower in body it is. Additionally, it is highly symmetrical, with the only exception being the flashes and intense freezing/burning in my feet. In these situations, I have flashpoints about the size of a quarter in different areas of the foot and toes.
During the last two days, it felt like I was sitting on top of a cliff or gorge. My legs were being pulled into hell, below me and blue in color and cold. A demon had his claws in my feet and was chomping on my toes with his fangs. What was interesting about this, was how different it was from before. For several years, I envision my pain in the form of a 3-4′ old, hairless person/alien who wrapped his arms around my legs. He needed my pain, which I allowed him to cause, as it made him happy. I am sure that the reason for this little story was that it gave me control, in allowing this person/alien to feel good, as he was obviously very unhappy and needed this. Needless to say, I don’t tell many people about this, including my doc.
I am afraid that I will lose my job and that my career is over. I sacrificed a lot to get where I am, and I cannot bear the thought of hanging up my hat 10 years before I am ready.
AnonymousJanuary 14, 2013 at 3:56 am
Unless you are in complete remission I wonder why the neuro doc would say no to further IVIG?? This perplexes me. One year ago you had a full neuro workup for CIDP?? Was a possible second condition ruled out?? Have you thought of a third neuro opinion? Do you feel you are over doing it activity wise unknowingly exasperating the pain?
I used to use intense visualization to think I was shoveling snow on my burning limbs. The IVIG is helping me but my CIDP is still progressing (but slowly).
There is the controversy on using opiates but we have a disease that can cause unbearable pain.
It does concern me your pain has gotten worse and it would be awful if you did lose your job because of it. When pain sucks the life out of you something needs to be done. I have my break thru pain meds and I think you should have extra meds also to help you on the super bad days. My non-professional opinion to have a long chat with your pain doc and see what magic can be worked out for you to stay working and enjoy life. I don’t think anyone should suffer when there is a chance their pain can be better controlled.
January 15, 2013 at 3:51 am
Larry, was the IVIG helping with the pain ? If so, maybe you could find another dr who could get you back on it.
As for the mayo in MN, i went out there too. In my opinion–they are good at diagnosing but not so good at treating.
Have you considered applying for the sct–there was a person on there who was in significant pain and it helped with her pain.
Don’t just accept the pain, nobody should have to suffer with that. If you can’t get in with a Dr soon, go to a hospital with a reputable neurologist on staff and plank yourself in the ER until they get a DR to help with the pain. Lori
AnonymousJanuary 30, 2013 at 2:31 am
So much of what you wrote could have been written by me. I remember the loss of mobility and how pain utterly colors your world. I had a severe case of quickly moving CIDP. I went through a SCT – and it was afterwards that the real pain kicked in. It seemed like as my function returned the pain increased to a point where it was utterly crushing. At my worst – I was on 3000mg day of Gabupentin, Lyrica, Disapramine, Prednisone, methadone augmented by Norco “kickers” along with Atavan and Ambien to relax me and help me sleep. They say it is because I had sensory predominent CIDP. For a variety of reasons I feel fairly sure that in my case it was the high dose cytoxin (given as part of the SCT chemo regime) that interacted with the frayed sensory nerves – like dipping them in acid. The pain finally ebbed about 18 months post sct. At the same time – I basically went cold turkey on all my meds. I will say that I think with the pain meds – i never felt addicted – but I did notice that when I was on them – as soon as they started wearing off the pain increased enormously. After I went off of them – that didn’t happen – of course the nerves were probably healing as well. I also had alot of chest pain – unrelated to any heart issue – there is a large bundle of pererphial nerves under the breast bone – that in my case were impacted. The effect between that and my feet resulted in a “whole body” ” ringing pain” that radiated through my body. Stress seemed to induce it – and if I walked on my feet – the pain of the walking induced stress and that would trip off my chest – and pretty soon my whole body was clanging like a discordant bell from all the pain. One thing that would help calm it down was soaking my feet in ice water for 10-15 minutes and taking a norco – that produced a calming effect on the whole body.
Iam a big advocate of the SCT. I went from 100% bed bound with breathing difficulty and maybe 2-3 months of life left – to 100% recoverd – except for the pain which now is a low enough level that I can work around it. 2 days ago I walked for 6 miles – something unfathomable to even think about before.
I hear you about the pain – it changes your world. If you would like to talk about it – I would be happy to speak to you!
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