Is pain normal for CIDP?
AnonymousJune 30, 2010 at 12:38 pm
I have had CIDP for a long while. When I first started out I had little if any pain. Now after about 10 years I have worse pain than ever in my feet and hands, more so in my hands. I did take Cymbalta, but it quite working after awhile and I got too sleepy with it. The only thing that helps is Vicodin, but my doctor does not want me taking it. My question is, is pain just part of the CIDP disease and you just have to cope with it? It is very hard to have a normal life when pain is involved on a daily basis. My doctor has tried to find out why I have so much pain and has tried other treatments, but no relief and no answer as to why I have pain. He did find that I had multi nodule goiters from an ultrasound, although my blood work came out normal. I know that it would not cause this pain. I know that not all CIDP patients get pain and I wonder why. I also am thinking of seeing another doctor, Dr. Richard Lewis in detroit mi. I really like my doctor and he is a good doctor, but when it comes to this pain I can’t seem to get any relief. I know there is a way to contact Dr. Lewis my email, does anyone know how to reach his email?
Clare in Michigan
AnonymousJune 30, 2010 at 12:57 pm
Pain or no Pain…I was diagnosed finally in 2005 after a 5+ year hunt. I started out with no pain, but that didn’t last too long. Right now it takes a combination of Cymbalta, Nurontin [sp?] and MS Contin to keep things under control. I can understand your problem with your doctor. It seems that many doctors have a problem proscribing narcotics for an extended period of time. They tell you to go to Pain Management and Pain Management tell you to go to your doctor. Round and round you go.
I finally found a doctor who got it right. Guess what? She is leaving and now I get to do it all over again. Hopefully, you will have better luck. CIDP is a gift that just keeps on giving :rolleyes:
AnonymousJune 30, 2010 at 4:43 pm
Hi, sorry to hear about your pain. I am one of the unlucky ones that hurts pretty much every day. When the weather changes I find the pain in my legs unbearable and sleep very little because of it. The disease is painful for me. I know others who dont hurt with cidp, but I have moderate to severe pain frequently.
I am on Tramadol, which is generic ultram. Tramadol has been found to work well with some kinds of nerve pain. Most docs dont mind giving it out because its an “opiate like” drug.
Unfortunately the old school thinking for doctors is that nerve pain can not be effectively treated by opiates, and of course as we know this is not true in our cases.
Believe it or not the medical world only recently found out opiates do relieve nerve pain in many cases.
The catch 22 is if you start taking vicodin daily youll end up eventually increasing your dose until you are maxed out and then have to go to a more powerful opiate.
In my experience Id rather feel some the pain than be a zombie like I was on the heavy stuff. It was terrible when i realized my emotions were all but gone, and all of things I missed emotionally due to being on the stronger stuff. But again thats me, and I cant judge anyone or really advise as we are all different. Different pains, pain tolerances etc.
Ive had years of experience with both non treatment for pain and treatment for pain. If I were to give any advice it would only come from my experience with me. So:
Maybe try to get some ultram, as it does work for me most of the time although my dose is like 300mg a day, which is a pretty steep dose. I helps with the pain without making me mentally numb to my surroundings.
Its pretty much just as addictive as other opiates but it is considered an opiate like substance. Basically does the same thing as opiates but the manufacturers of Tramadol initially said it was not addictive in thier marketing. They got sued for that. Anyhow Im going on a tangent here.
Now there are days I cannot get by with just the Tramadol and must use something stronger. I am lucky to have a doctor that will write prescriptions for me when the pain gets bad. I never know how much pain each day brings but I am happy to have options. Maybe a similar set up would work for you?
Good luck to you! Try staying positive about it as much as you can, and look around for a pain doctor if you have too. The truth is most doctors go by what they read in the PDR, and the CIDP info is only a short paragraph. They dont know much about it, not even the Neurologists.
Pain meds are taboo these days due to the DEA trying to bully doctors into not prescribing too many opiates. Many doctors, especially the young ones are intimidated and fear the DEA kicking thier doors in if they make a mistake prescribing opiates.
My md of 10 years wrote me my prescriptions long ago and he did so trying to help my suffering. The day came when the laws and pressures got to him and he made all of his patients on pain meds start taking drug tests each visit to ensure they are taking thier meds right, and not selling, abusing, etc.
The way I saw it was the DEA made him treat me like a criminal or at least a parolee, and it bothered me for the longest time even though I never went back to him and never submitted to the drug testing. I felt the indignation of the urine tests was over the line. There is little to no respect for sick folks by the government.
Sorry for the rant, but it is a sore spot with me. No pun intended 🙂
Another option is medical marijuana if you are lucky enough to live in a state where its legal. But then again if youre not in a state that doesnt have mmj legally you can just simply decide to do what you feel is best and right if it works for you. Kind of treat them with the same respect they give us as patients 😀
Again sorry for the rant, and Im getting off my soapbox now. Best of luck to you, and hang tough. Youll get it figured out.
AnonymousJune 30, 2010 at 5:30 pm
Thanks for the replies. I do take Ultram 50 – 100 mg at night when needed and sometimes it does not help, but once again my doc won’t increase it. I wish some of these doctors would have one day of the pain we get and see how soon they prescribe themselves opiates. They were made for pain and if they are soooo bad then why don’t they take them off the market. There are some people like us who really benefit from them and don’t get hooked on them. I did try a pain management place and was told to keep doing what my doctor gave me. What a rip, $200 later and after spending the whole afternoon there, they had nothing new to add. They didn’t even know what CIDP was!
Clare in Michigan
AnonymousJune 30, 2010 at 9:52 pm
In less than two weeks I’d gone from simply ‘tingly toes’ to absolute burning fire on my hands and legs… so bad that I had the ‘joy’ of spending time in the hospital, where I’d hope they’d test me? But, didn’t do much at all.
Honestly, and I wish I could give you a ‘cure’ here? Meds can cut some of the pain, but not much.
Since then, for other medical reasons, I have had strong opiates prescribed. They did very little for the medical reason for the new pains nor for the CIDP/PN pains at all. Only thing they do is make your brain dull so you just don’t care. IF you can get some good sleep in there? The kind with dreams, that IS a good thing. Good Sleep? Helps so much in our getting rest and getting stronger! Tho, it’s easier said than done.
To complicate things further? Some of us respond to some meds such as Neurontin or Lyrica. Some of us don’t. I suggest that you ask your doc to try other meds that mite help? Just don’t start them on a weekend! IF something goes wrong then? It’s the ER then Go to your doc Monday AM. Right. I try and start new meds on a Tuesday or Wednesday, then there’s enuf time to see if things are ‘working’ or not, and then to go from there….
It’s frustrating, no doubt about it! Keep faith in yourself and hope that some combo of meds can help and soon!
I can only agree with your pain, and hope you find other sources that help you deal with the pain. Not to mention the stress that the pain and it’s s/e’s cause. I view my pain as a brick wall…one I keep beating my head against at times, I’ve stopped doing that? Hurts the head too much! I just now look at that wall and want to spit at it! So, my alternative is to block it out or ignore it. Easier said than done? But it IS a way of coping. It’s working for me so far.
I wish you HOPE with all my heart! That you are able to find relief from somewhere. I truly do!
AnonymousJune 30, 2010 at 10:20 pm
I see you live near a huge city and surely it has some decent pain management doctors. I go to a physiatrist who specializes in pain treatment and have to take drug testing every visit. The drug tests cost more than seeing the doctor”’
If the pain is causing you misery than you deserve to not be in pain. CIDP can cause excruciating pain. Some where out there is a caring physician who will prescribe the necessary medications to help you find relief. Does your neurologists not prescribe pain medications? Usually neurologists or rehab/physiatrists prescribe pain meds.
The are wonderful older threads on CIDP pain so try to upload them for reading. Maybe someone on this Forum can recommend a decent doctor.
Go to “American Pain Foundation” website
-it’s a super Forum that will hopefully direct you to someone in your area who specializing in pain management. I get a wonderful free newsletter from them that is full of interesting and inspiring reports on people in pain/pain management. They also have a “nurse chat” who can answer questions/other options.
Best of luck. Without my pain meds I would not be here.
Please PM me if you want if you have any questions.
AnonymousJuly 1, 2010 at 5:49 am
I am sorry you are having so much pain. I’ve had CIDP for years now too and have found I am now experiencing way more pain than I did at the beginning.
I find the electrical type pain I experience the worse… it travels down my spine, arms and legs. I cannot settle with it…I become quite restless as every nerve in my body seems to be misfiring and even my muscles become tense and don’t seem to relax…they just remain rigid. It’s ‘always’ worse after physical activity…so, I know what to expect if I do too much…pain!
AnonymousJuly 3, 2010 at 7:42 pm
I knew I had something wrong with me for decades. The weirdest sensations and tremors and paresthesias/uncontrolled movements were hitting me and I looked up every word every doctor told me and I kept coming up with MS. I had been previously diagnosed with Fibromyalgia/Chronic Fatigue Syndrome/Chronic Pain Syndrome. about 1990 give or take a few. I believed with all my heart it was MS because I had trouble with seeing, walking, balance, paresthesias all over my body, and also the really hard increasing burning pain mostly in my legs but really all over at times with the stabbing and stinging and the feelings that bugs were all over me. My joints were cycling with weakness and pain all over my body. I took NSAIDS all the way up to Naproxen and got a nice little ulcer before they let me take Tramadol. Then they had to give me 10 Darvocet’s, a month for when it was really bad. (I mean that is all they would give me) untill finally I demanded that they just give me more Darvocet, and my patience had really wore out so they finally did. It does not stop my pain, but it does take the edge off some of it. I worked 27 years with the last 15 in major pain and at times I couldn’t even talk right, reason right, or stand straight up.
My Cognitive problems went through the roof and I ended up in the hospital from pain in my side. Nobody would diagnose me but I had 4 possibles. They would admit I had had Optic Neuritis and that my vision loss was because of it. I can see blurry everything but cannot read at all out of my left eye so I am legally blind in that eye and it is getting worse. It appears things move that are stationary so I guess it is a different kind of Nystagmus from the jerking one I have. I tell doctors and they just kept saying uh huh, and then blew me off or told me they were sorry for my slight peripheral neuropathy but they did not think much wrong with me. The last 20 years have been so hard. But finally this doctor says it is C.I.D.P. he is sure of it and also maybe MS. I gave him my cd of my MRI’s from 2006 and because he wanted to treat the C.I.D.P. with IVIG and of course the insurace company gave him a hard time so he had lower spine MRI’s and he did the only EMG test on me that hurt. They others did not hurt like that. I was saying OW! a lot in shock that it hurt. While he was stabbing and shocking me I asked him about my MRI’s and had he seen the Dawson’s Fingers one doctor had changed a record to say I did have. He said yes. I asked him if he saw the lesions, demyelination and gliosis on my brain also because these were brain MRI’s we were talking about. He said yes. So I asked him what he thought. He told me I had MS too. He is a man of few words but he gave me the most truth and the most hope I have had since I don’t know when,
I am on IVIG Gamunex 40mg 1 day about every two weeks. I had never heard too much about this treatment. He said hopefully it would make me feel much better. I have only had two so far, and nothing has improved that I can be sure of. I am still hopeful.
Are many on this forum that have both MS and C.I.P.D.?
AnonymousJuly 5, 2010 at 7:12 pm
Why? Because you still have some nerves alive! IF you have NO pain? It means either it’s not affecting nerves OR your nerves are DEAD. Which is why I’ve learned what little there is to know about ‘pain, pain definitions, pain diagnosis, and pain treatments’. Pain, in and of itself is NOT clearly defined, outside of those ‘happy-face’ charts. Definitions are even more vague, definitions vaguer still, and treatments are a BIG BUSINESS. BTW? I don’t do happy-face charts, they are meaningless in MHO.
Do research on ‘how nerves die’ and ‘how nerves regenerate’ and wade thru a lot on slugs, worms and toads or the like before you find any real research on HUMANS! Very, very little.
Still, I have pain, yes, but AT LEAST I have PAIN! To me? That means there is hope in the future ‘fixing’ of that pain. Since my onset? It’s gone from horrid to simply being as if I’m attached or plugged into a low voltage outlet. As long as it’s low voltage? I can and have gotten used to it. Don’t forget? Pain is VERY subjective… How you describe a pain, mite not be how I describe it. This goes part and parcel with the difficulties of our getting diagnosed? HOW DO DOCS ASSESS PAIN? What are their standards? Do we know? We are constantly like blind people fumbling around in the dark for orientation. Somehow we don’t fall, let’s not even think of falling!
AnonymousJuly 6, 2010 at 8:33 pm
I had some pain in my lower left leg for about six months before I was diagnosed with CIDP. It got fairly bad – I would describe it as a similar to a severe toothache, but in the leg. I also had some numbness and tingling in that leg and foot.
I eventually got referred to a pain management specialist, who diagnosed it as a pinched nerve. He said that the only thing that surprised him was that I only had pain in one leg. Like clockwork, within a few weeks I began to have pain in the other leg as well. I went through a series of steroid shots in my back, that had little or no effect. Then, I started going to PT, which seemed to help.
Now, I am beginning to wonder if it wasn’t really caused by the CIDP all along? I know that numbness and tingling are also symptoms of CIDP, which seems to fit.
I still have the pain, but it has been at a much lower level since I have been treated for CIDP, which also makes me think it might be part of my CIDP experience.
So, my question for those who have had pain is: what kind of pain did you experience? (Mine was a deep-seated ache that seemed to originate within the bone itself.) Or is there even a characteristic type of CIDP pain?
By the way, I got pretty good response to a medication called diclofenac, that my family doctor prescribed. The downside is that it takes about an hour to really kick in, but then it really takes the edge off. Didn’t totally eliminate the pain, but made it much more bearable.
AnonymousJuly 7, 2010 at 7:15 pm
I don’t know about others? For me, it started out as numb feet, then buzzy feet, then plugged in feet, then the same progression to the hands …within two weeks I’d gotten to the point that I had not slept more than two hours on any of the four days prior to the hospital, due to the ‘plugged in’ pain. I called my GP and was told to go to the ER. I actually thought they’d do something like ‘tests’? to diagnose me. A basic x-ray of the spine and simple CBC and urine were the only tests I’d gotten. A PT evaluated me for walking safety and I was sent home… There were times as the pain progressed up my legs and arms that I almost considered amputation as an option! But, the thought of ‘phantom pain’ told me that some pain mite go away? But, lots of it would still remain. So, nixed that quickly.
Pain definitions? They vary…. but for me? When the pain doesn’t let me sleep or want to eat or do anything? Well, then I call my neuro and go:Help! I’ve only done it once since I found a neuro who works with and for me.
After lots of reading on anything free on the web? Sorting out the good from the ads…. I found that my long bout of pneumonia a few months before, was my ‘catalyst’.
As for the ‘bone ache’? Likely you are on a lot of pain meds, and neuro-meds that IF you read the side effects of them [web up the med name + full prescribing information] in all the fine print, you can find that calcium depletion is common. Start on a good quality ‘calcium citrate + vitamin D + magnesium’. You need the combo to properly asorb the calcium. And, likely need the others too. I’ve found this combo has been diagnosed essential for me by docs and I try to take them religiously. They not only help with the bone aches? But the ‘muscle trembles’ too. However, it takes about 3-4 weeks to take effect. Be patient? What else have you got to do? Besides walk funny and hurt? :confused: Keep faith and hope…. Don’t give up ever!
AnonymousJuly 10, 2010 at 10:01 pm
Is pain normal?
I think most CIDPers get along without a lot of pain meds. Or at least not needing Rx drugs. I have not been that lucky.
I started out as a sensory diagnosis, I was basically numb in areas. Pain was not as issue. Then I developed what I thought was plantar fascitis, a painful inflammation in the plantar fascia tendon of both feet. I battled this condition for 2 years before seeking treatment. I used home remedies and exercise. nothing helped. I should have known that since it was in both feet, it probably was not PF.
The I thought it had something to do with heel spurs, which I have 6. Then my ability to walk was diminishing, the CIDP was getting worse, etc, etc, etc.
Now I think it is a combination of failing muscles that caused the tendons to draw up which causes constant tendonitis in every joint below the knee. My choices are very clear. I can walk if I have pain meds. Without them I would sit in a wheelchair. I can tolerate the tendonitis, stretching, muscle pains, joint pains, etc with the meds. Without them I would not have a mobile life.
I would still need a drug for the shooting nerve pains that I experience daily, hourly, etc. Unfortunately, pain is a major part of my life.
AnonymousJuly 13, 2010 at 2:17 am
I was diagnosed with CIDP a year and a half ago, and until the last 2 or 3
months, the pain was mild, and infrequent, and always a burning sensation
in the tops of my toes, and the front of my lower legs. It felt like it was on
the surface. I have been having serious pain in the upper thigh, sometimes
in the front, and sometimes on the inside, and sometimes, the whole thigh
throbbing, for the past two months. There is no pattern of time of day,
intensity, or length of pain. I can’t connect it to anything I am doing, like
going up, and down stairs, or stretching in a certain direction. An MRI, and
X-rays don’t show anything significant to be causing the pain. My doctor
said, that pain can be caused by healing, and he said, he likes to be posi-
tive, so I don’t get a lot of information about, what to expect with the
CIDP symptoms. The last few days, the pain is much less in the thigh, and
more often in the knee, and sometimes, the lower front of the same leg. It
is always in the right leg, which is most affected by the CIDP. Some doctors
have told me, that pain is not usual with CIDP, so I am puzzled by so many
reports of pain. My pain is never steady, always pulsating, or the result of
putting weight on the leg. When I sit down for about five minutes, the pain
will often go away. It varies greatly in intensity, and frequency. Is there
any treatment, other than pain pills for CIDP pain? I am taking a mild form
of tramadol, but it affects my appetite, and causes dry mouth. Sometimes,
the pain over rides the tramadol. I stopped all exercising, when the pain
intensified, thinking, the exercise might be aggravating it, or even causing
it. Does CIDP pain ever go away, once it starts?
July 15, 2010 at 11:30 am
I also have had CIDP for a year and half. My first issue was not weakness or anything related with feet, legs or hands.Mine was pain in the bladder,stomach.I get up each morning and struggle to the couch. I take my 50mg of Tranadol once a day and then manage fairly well. After reading so many post the one thing I have learned through this organization of people is the varity of ways this stuff effect each and seems to change daily.
AnonymousJuly 16, 2010 at 2:24 am
Sorry to say this because you say you like your doctor, but he/she is a numbnut!Who in their right mond would say pain is NOT part of CIDP? That is infuriating!!!:mad: Talk about being dismissed!! Get a new doctor. What kind of dr is this anyways? That license needs to be revoked! AAAHHHH!!! I can’t stand it!!!!! Pain and loss of feeling or 2 of THE MOST PROMINENT SYMPTOMS of CIDP!!! Sensory neuropathy means it attacks your senses, ie, feeling. Motor neuropathy affects your motor skills, ie, balance, movement, strength…………….
Stop seeing that quack and get yourself a neurologist. Go in your insurance book, close your eyes and point. Waalaaa, a new doctor. That would be better than the idiot your seeing. Don’t stress about getting in touch with Dr. Lewis. He is not going to have any personal interest in you because you are not a patient yet. Emailing him directly might just **** him off. Make an appointment with any neuro, ask for a nerve conduction velocity test to be performed so you know where you are medically and how much damage has come about in the last 10 years of not being treated by the idiot. Discuss options with the new dr about pain meds. You can let he/she know that you have taken vicodin in the past and that it seemed to work, but if you go in asking for meds right off the bat, they are going to think you are a junkie looking to score.
If your other dr didn’t think that pain was part of CIDP, why the vicodin? For what diagnosis was that prescribed for if pain “isn’t an issue” in his/her opinion. Also, if that dr is a neurologist, I would report them to the medical board. Make some sort of noise to rattle that cage. Patients with CIDP SUFFER!! The last thing we need is another quack out there, giving their 2 cents about a disease they know nothing about! We need to protect one another. Think about doing it for the next patient who will be told to suck up the pain.
AnonymousJuly 17, 2010 at 12:57 am
Sorry to hear about all the pain stories here. It makes me aware how lucky I really am without any pain at all. It sounds weird. My neurologist told me my symptoms are as bad as they’ll ever be. I’ve been in a power chair for the last two years. My feet are 100% numb and my hands maybe 50%. I can’t balance without falling. My CIDP started in 2001 and I’ve gone downhill ever since. I have mostly sensory damage and some motor. Treatment like IVIG and Rituxan did not help at all, probably because mine is a CIDP variant. But I think nerve damage is nerve damage. Why don’t I have pain? Not a clue.
What is infuriating is the attitude of many doctors not wanting to prescribe opiates. My wife has osteoarthritis with pain reaching an 8 sometimes running into the same obstacles. What is wrong with this society? My daughter is an ER doc and encounters a lot of drug seekers. But she can always refer to a primary doc. But why in the world can’t many of the docs tell the difference between a drug seeker and a person who has serious chronic pain. Why submit them to demeaning drug testing? It’s a shame.
My wife is so intimitated that we make drug runs to Canada to get over-the-counter acetaminophen with low dose codein. She is worried about causing damage to her liver with too much acetaminophen (tylenol). She won’t ask for opiates after one doctor insisted on drug testing. It makes me mad.
AnonymousJuly 17, 2010 at 10:47 am
With a prognosis of TERMINAL, they are trying to keep me as comfortable as possible.
For the spasms, I am on Baclofen 4 times daily, and with each dose of that, I take 6 mg of diazapam. If the spasms increase, the increase the mg of those meds.
For the pain, I am on Opana ES, 20mg every 12 hours, (morphine estended relaease), and Hydrocode 7/325 every 4 hours for when the pain gets too bad. I also have Lidoderm patches which I need on my Pelvis area, which help greatly, but only last for about 12 hours, and must wait until the next day before I can put another one on.
And for the neuro pain, I am on the Neurontin.
I also have for PRN, Marinol, but don’t like to use that, as I get high with that, (pill form of Marijuana).
To beat the great fatigue with CIDP, I take Ritalin at 6am and 11am, so I am not bed-ridden yet. I DOES work well, and I can make it to 4pm or 5pm before I have to ge to bed.
I have WONDERFUL doctors, who try to make me as comfortable as possible, giving me nerve blocks, as well as steroid shots. The CIDP increased my osteoarthritis and the joints have become more sore fastly.
And from being on Cytoxin for so long, gave me osteporosis in my spine with, (oh-I’ve gone blank here-can’t think of what the called it), but that is why the give me nerve blacks, as well as they give me shots in the nerves in my spine that dulls the pain in the nerves there.
Basically, if I develop more pain, they take care of it right away–they just have to wait for the two weeks to get the insurance approval, (I am on an HMO).
At this point, it doesn’t matter if I become addicted to anything, since I am dieing anyways. They want me out of pain, and as comfortable as possible.
But to mention to you, I have great pain in my legs when I wake up in the morning, from the CIDP, and must take the hydrocodone immediately.
And from the foley catheter I have, caused ulcerations in my urethra, which avery painful, and now next week, will have an operation for a super pubic catheter, which is a catheter directly into the bladder, so I won’t have the ulcerations anymore.
And since I have been losing at east 10lbs every month, and am down to 155lbs, my PCP said when I hit 150lbs, he is going to arrange foe a feeding tube.
And since the CIDP hit my autonomic system, it hit my phrenic nerve, which contols the diaphragm, so I must be on Oxygen 24/7, with the help of a BiPap as needed.
And the most embarrassing part, is the I must wear diaper, (depends), due to no feelling/control “down there”.
And the CIDP hit the nerves controlling my eyes, which gave me Strabismus, (seeing double), so I now have special glasses with prisms in it. But when I am too tired, I still see double, even with the glasses.
The worse part of this, is that I have a full mind, while I watch my body deteriorate.
No pain by way of all the treatments and drugs, as I say goodbye to this world. But I am fully of mind as I watch it all happen to me.
So, to those looking for help with the different problems:
-Spasms: I find the Baclofen helps very well. My doctor added the diasepam if they get worse, increasing the dose until the spasms stop.
-Pain: Being on the extended-release morphine (Opana ES) helps alot, and using the Hydrocodone for break-though pain is a good way to do this.
Using the Marinol makes you “forget” about the pain, but you cannot live being “high” all the time, so I don’t like to use it that much.
Using the steroid injections and spine treatments helps alot, too.
All the best,
You must be logged in to reply to this topic.