Pain Anyone???

Even though I’ve only been fighting this fight for a few months, I’ve learned quickly that doctors, especially neurologists, should NEVER say “never”. In my opinion, it shows either a lack of education or a “I haven’t got time for this today” kind of rush to judgement.

I’ve got early CIDP, but I’ve also had enough spinal issues for ten people. With leg pain, especially that just came on, there are a LOT of other things to rule out. I would assume they probably did after two days in the hospital, but have you consulted an Orthopedist? Does the pain stay in the lower legs, or does it run throughout your entire leg? Does it radiate, say into the hips, pelvis, etc? Do certain things bring it on or exacerbate it? Can you “cause” it to flare? All that said, it’s probably NOT skeletal, because you seem to state that it’s symmetrical, which is rarely the case with pinched nerves, disc problems, etc.

My first thought was that if it isn’t neurological, it’s probably vascular. Did they check out those possibilities in the ER?

Buy any new shoes lately? 😉 Actually, that was a joke, but it made me think of something…have you ever had shin splints? I’ve had them a couple of times in my life, and they are EXCRUCIATING!!! With me, it was always both legs, from the calves down, and would get worse throughout the day. By day’s end all I wanted to do was crawl, so I wouldn’t have to put weight on my feet and ankles. Just a thought.

Good Luck,

Elmo

I have experienced lots of nerve pain that has manifested in different ways. two days before the original so called “gbs” I had what I cal frost bite like pain. it felt like the deep ache you get when you get too cold and you thaw out, all over my body.
I get cramping that feels like i need to eat bananas for potassium.
I have had cramping pain behind my eyes
I get this diffuse rotten pain that feels like a body migrain
I have had flank pain that feels like I have a kidney stone and then radiates up to my neck
I have had a boaring pain in my neck that ran up the back of my head and down my shoulders
I have had pain that feels like a knife in my trapezius
I have had the kind of pain that shoots down my arms and feels like somthing is pulled too short.
recently I have been getting joint pain but I doubt that is neuropathic
I have only been diagnosed with gbs not cidp yet but I have heard many diagnosed people talk about pain on this site so it is part of this disease.
Oh and there is some boaring pain that makes me weaker too

Amy,

I have CIDP and YES there is PAIN!!!!

I use gabapentin to try to control the pain. It helps quite a bit.

I use hot rice bags at night to put on my feet cause the pain is so bad.

Just today after being out for a couple of hours I had to come home and get into a warm bath to try to help the feet and leg pain.

I find that lying on the couch with my legs elveated for a couple of hours every day helps the pain as well.

I also am dealing with many health issues…I take 23 pills a day plus 2 shots of insulin!!!

Hopefully you will get some relief from your pain,

Rhonda from Canada

I had lots of pain before I was treated for CIDP. I haven’t needed anything for pain for a year. My doctor is weaning me off prednisone.
It’s important to get treated as soon as possible and to keep up the treatments for CIDP otherwise the nerves will never heal properly.
There are quite a lot of individual variations in the course of CIDP, but the right doctor is the most important and if left untreated a lot of damage can occur. Most doctors including neurologists have never seen CIDP in their lifetime because the disease is so rare.
I am also taking alpha lipoic acid, a nutrient, which has been used in Europe for years for Diabetic neuropathy to help with pain and healing. It’s good quality and affordable compared to other companies.
You might need another opinion with a neuro who knows CIDP and I know that you can never neglect or turn your back on this insidious disease.
CIDP is a serious autoimmune inflammatory nerve disorder that demands proper medical treatment. Pain meds are needed, but these meds only treat the symptoms and do not control the ravaging damage of the CIDP. The longer it is left untreated or diagnosed the greater the damage.
I am praying that you will receive the best medical attention and I hope you will feel better and stronger.

That blanket statement your neurologist said is just plain nutty. Some people do not have pain, many people do. I do not understand how he can think there is no pain with CIDP when your nerves are mangled and the signal gets misdirected when it hits a demyelinated area. Nutty – or perhaps not that familiar with CIDP and all it’s various manifestations… I went through 3 neurologists before I found one who had experience with CIDP. All had HEARD of it but without experience they were falling back on information that is out of date, to say the least. At least one was graceful enough to admit it and sent me to Hopkins… it is SO worth the trip to have a neuro who not only has heard of CIDP but has other patients as well. We are all different with this disease – its not like Pringles potato chips where they all come out looking the same – we’re a mixed bag of chips, all unique.

I’m sorry for your pain – I do understand and I hope you can get some relief soon. 🙂

I agree with the “nutty” neurologist diagnosis … (lol). 😀

Yes I experience pain. My pain comes and goes and it presents differently. My feet ALWAYS feel like they’ve been stone bruised. 😮 Mostly my pain is just a burning sensation. Periodically I get awful deep aches. Sometimes, infrequently, (thankfully) I get a shooting stabing pain. I didn’t experience any of this pre-CIDP.

As one reads the posts and the stories shared pain (and pain management) is a recurring theme. Hunt around for the pain management threads, other’s experiences may give you encouragement, wisdom in possible pain management techniques for you, and a sense that you’re not walking this pathway alone.

May God ease your pain …

Gary

Yes, the pain is definitely real. The pain is what caused me to seek more treatment. I’m currently on gabapentin to help block the pain. It works OK for me, but does not help me 100%. My pain started out as feelings of needles and cramping, now it’s a burning pain on my arms and legs. My feet are on fire from the pain. I’d keep looking for a better neuro if he/she isn’t listening to you.
– Buck

Yes there is pain lots of pain. Ryan has pain all the time. He takes 3600mg of neurotin daily and 60mg of cymbalta daily to manage his pain and its still isn’t enough. I stretch him constantly throughout the day and he uses a heating pad. he said all teh pain meds just take the edge off the pain it never goes away.
I don’t know how he does it. I pray all the time that God would take all that pain away so he wouldn’t have to suffer so much.
Plz find a neuro who knows about CIDP and have them perscribe u some pain meds to take on a daily basis and you also need to have treatment on a regular basis like IVIG or plasma pheresis or some kind of treatment. If you are going without treatment except when your in the hospital then your neuro knows nothing about CIDP. YOu need regualar treatment.
Good luck to you and I will be praying that you get the pain meds and regualr treatment that you need.

I have very good doctors, that try to keep the pain away.
-I have gabapentin, (Neurontin), that helps control the “electric shocks”.
and “burning sensations”.
-I have Vicodin when the pain is bad.
-I have Hydrocodone 7.5 when the pain is very bad.
-And I have Marinol, (the pill form of Marijuana), when the nausea is bad,
appetite is very poor, plus really makes me “feel good” with the euphoria
effect.
-I also have Baclofen and Valium to help control the bad muscle spasms
and contractures.
-And I take Indocin that wards of migtaines, which I haven’t had for years
now, since taking two Indocin per day.
—
Yes, pain is definitely involved with this ugly disease. But you need good doctors to support you in this, and prescribe correct meds as no one should be in any type of pain, with all the meds around to assist with pain relief!!!
Ken
(KEDASO)

[I have experienced lots of nerve pain that has manifested in different ways. two days before the original so called “gbs” I had what I cal frost bite like pain. it felt like the deep ache you get when you get too cold and you thaw out, all over my body.
I get cramping that feels like i need to eat bananas for potassium.
I have had cramping pain behind my eyes
I get this diffuse rotten pain that feels like a body migrain
I have had flank pain that feels like I have a kidney stone and then radiates up to my neck
I have had a boaring pain in my neck that ran up the back of my head and down my shoulders
I have had pain that feels like a knife in my trapezius
I have had the kind of pain that shoots down my arms and feels like somthing is pulled too short.
recently I have been getting joint pain but I doubt that is neuropathic
I have only been diagnosed with gbs not cidp yet but I have heard many diagnosed people talk about pain on this site so it is part of this disease.
Oh and there is some boaring pain that makes me weaker too]

Tara I think you are living in my body!!:(

I am also still not diagnosed. I just returned from seeing a reknown doc at the University of Miami. My neuro has his report per his nurse and will call me later today. I know he is going to recommend oral steroids and another EMG because he told me that much. He thinks I have more than one problem. Spinal cord damage, transverse mylenitis; and some kind of autoimmune disorder. Aren’t I lucky:rolleyes:
He does not think I have CIDP. I hope to know more later today.
Sue

Did you list Charcot Marie Toothe? (CMT). I was mis-diagnosed as CMT for about 6 months before getting it straightened out to be CIDP only.

Many people with CIDP do not suffer great pain. Some do. (me being one) I don’t think that the nerves themselves hurt, but their dysfunction causes other things, muscles draw up, tendons tighten, walking hurts. Hands tire quickly and get sore, pain. If you do too much, everything hurts.

Pain is real. I doubt I would have it without CIDP.

Dick S

Tara, you are the first person that has described the type of pain i have and have had, especiallly the pain that hits the base of the neck and radiates up the back of the head. The Dr.s never knew why I had that pain, and still do after 11 yrs. It comes and goes now, but the back of my head is hypersensitive to touch, like if I sit in a chair and my head touches the back of the chair, my head starts burning and then I feel nausous. I can’t lay down and watch tv or my head starts burning, it’s insane. I have to lay very level when I go to bed, my pillow has to be very thin so my neck isn’t angled in anyway.

I do not take any pain meds, probably should. I am afraid of them as I get physically sick. Now I am having more problems with leg pains (due to walking with drop foot in both feet). The winter months my feet and hands burn constantly from being so cold. I live in Michigan so it’s cold here in the winter.

I want to start taking neurontin, but am afraid of side effects, I would like to hear how it helps other people. I also heard a lot of people gain lots of weight from neurontin.

I was originally diag. with GBS then after 2 relapses it was changed to CIDP, although I have never hand another relapse in 11 yrs. , but was left with a lot of nerve damage.

Someone also mentioned pain that is similar to migranes, I have that and I feel it is leftover from when the original attack hit my eyes, I was left with double vision for about 10 months, so it’s possible the nerves didn’t heal properly as my pupils still dialate differently.

This is interesting that Dr.s still say there is no pain involved, that’s what they told me as well.

I’d not had much pain.. a bit in my face, and occasionally in my wrists (not like carpal tunnel, but what felt like pain in my arm bones)

And now post nerve biopsy I’ve got pain in my left foot.. (which makes me want to hack my foot off at times)

I don’t take anything for it, cause I’m just not sure what could help with the pain.
I’d taken Gabapentin in the past, and it amplified the pain strangly.

Blah.
(written as my foot feels like its being poked with pins):(

Pain is anything that make you uncomfortable.

Tara described lots of different pains.

My neuro told me that the achey dull toothe ache is active CIDP.
I have that all the time. Its inflammation pain in my case.

The less pain meds the better because it hides what your feeling. I was
doing 35mg codene at one time and was probably relapsing and didn’t know it.
when i come down off the codene, I was about screaming in pain. so therefore
it got worse and I didn’t know it cause I was so doped up.

Sometimes when your healing you may feel the pain of something else. Like
I am starting to feel meniscus pain. I was told I have a moderate rt meniscus
tear and have never felt a thing. Now as I get better and better, I am feeling
what they told me I have, a torn Meniscus.

Unless you have had you entire body MRI’d or xray’d some pains may be from other
issues like disc, spurs etc. I have had my entire body MRI’d so I know whats going on
at every joint. and why I may feel issues in different locations.

I also have three bad disks in my neck two bulging one blown out. so I understand the pains
associated with that. I have arthritis in one great toe, so pain from there is expected. etc.

I have a heck of a time trying to figure out what is from what. Drivin me Nuts.

I can’t imaging what the moms and dads of CIDP kids do to know their child and what they are feeling. Some probably develop Que’s to know when they are having relapse and such.

At the end of the day its about treating the pain and knowing if your relapsing so adjustments can be made. We are all like snowflakes. No two are the same.–tim–

I am one that doesnt have alot of pain with CIDP.
Diagnosed three years and four months now. I had pain initially…weird radiating pain that didnt stay in one place. It was a sharp dull ache if that makes sense.

I have had some severe bouts of pain in my hands tho and an EMG later showed what my Dr called “active” CIDP.
Funny to me b/c my CIDP is always active…it’s very slowly active. That must have been a flare.

That pain was just like my hands were set in a skillet of hot deep frying grease. A type of pain that I would not be able to tolerate on a daily basis.
It came only at night and went away as fast as it came. So severe that I really and truly couldnt live that way.
Many prayers must have been heard…my own sister prayed in church for the first time in years for me b/c of that…I havent had the pain as severe since.

I get occasional…very occasional shocks. I guess to let me know “hey, I’m in here and I’m screwing up your body”…as if I didnt already know that by the cane I have to carry and the tennis shoes I have to wear b/c my feet dont lift properly.

Amy…I know all about the tennis shoes issue…and I hate it, too ! I did find some boots…havent worn them anywhere but home yet…but hopeful.

Whether we are chips or snowflakes…yes, we are different…but we seem to all be the same in that we suffer…somehow…be it shoes, lack of mobility, or pain… every day.

well wishes and I hope everyone has a great weekend !

Stacey

My physical therapist recommended a brand of shoes called PW Minor. This company makes shoes especially for people with foot problems, including shoes with extra depth so that AFOs can fit in them. Are they comfortable? I don’t know because I don’t have any sensation in my feet, but neither do I have any new problems with them. Their website is at [url]www.pwminor.com[/url] .

When I first went to the neuroligist 12 years ago the pain in my thighs was unbearable. It felt like someone was sticking red hot knives in my legs and they just throbbed. That was along with the massive fatigue and pins and needles in legs and hands. After all the nerve tests he couldnt diagnose CIDP but just said I had a sensory motor disorder and wouldnt prescribe anything so I went home and read up on different disorders. I found someone receivedrelief from Vitamin B tabs, so I started using the Mega ones. It relieved the pain and I still take them now when need be. I relapsed 3years ago and was then diagnosed with CIDP. I often wonder what I would be like now, if diagnosed then. I should have gone for a 2nd opinion but thought I was just over reacting. Go to an other neur. Good luck Cheers Jet

As others have stated, I have a LOT of pain. But, I’ve determined that I have different types, from differing causes.

I relate to what Tim said about “Tooth-achy” pain…that’s what I’ve most often associated with this neuropathy that I’ve got going on. It’s horrible. Just a constant, nagging pain that is so intense it keeps me from being able to focus my thoughts when it’s at its worst. My wife knows when it’s REALLY bad, because I can’t stand for the TV to be on, or any distraction…I just lie in bed, awake, and focus on something else. I’ve actually incorporated several of the pain techniques we learned in birthing classes to dealing with my pain…focal points, breathing techniques, etc.

Then there is the pain from skeletal issues, like others have. Those, for me, are completely different…the stabbing, bone-on-bone types of pain.

Neurontin hasn’t done a thing for me; the only thing that works is opiates…either Lortab or Percocet. I guess I shouldn’t say that…Ibuprofen and Aspirin also seem to work at times, too. I’m convinced that simple Aspirin is still one of the wonder drugs out there that too many people forget about. Need to be careful with it, but it’s pretty potent for something so common and easily accessible.

I appreciate everyone’s input on this thread…helps me put things in perspective when trying to get further down the diagnosis path.

Elmo

Since I have been regularly getting my IVIG treatments my pain has improved
greatly. I can really feel for you though and all of us who have suffered. When if first got Cidp all I had was numbness and tingling and loss of balance
then I went to Dr. Quack and waited a year to see another Neuro., by then
the pain was an everyday thing. Deep pain in legs, and arms, cramping at
night. Legs hurt when I walked too much and hands hurt when I drove or
typed, even when I held the phone!, and weakness too. About 2 wks. ago
I actually went for about 6 wks. pain free, but now it’s coming back. I take
Vitamins E, D, and B12. IBprofin for pain. I can’t take strong med. cause my
stomach gets all screwed up. I keep telling the doc it feels like my bones are
hurting all the time. Good Luck and Don’t Ever Give Up!

Ms. Judy
Cidp with anti-mag
Dx: March 2009

Hi just thought I would add my two cents. Yes I feel pain..and lots of it!! Sometimes it is worse than others. Last night was bad..up half the night!! I take Baclofen for the pain it ussually helps but nerve pain is hard to medicate.
I sleep with a pillow between my legs. Sometimes I will take a sleeping pill so I can sleep through it..doesn’t always help….Good luck getting some relief from the pain..my thoughts and prayers are with you

Sonia