I was given Nortriptyline for my random, daily electric shock-like pains. I took it once, and it gave me a headache soon after. I never took it anymore. My doctor told me to take it at night. But I work graveyard shift; so that wouldn’t work. Anyway, I never heard of it being given for neuropathic pain. My doctor says in large doses, it works for depression.
Does Gabapentin make you drowsy? I will ask my doctor if this med can work for me. What time of day do you take this medication? and how often?
Those who have CIDP, can you describe your symptoms of pain so I can compare it with myself. Sometimes my legs feel like a dull kind of “pins and needles” when I am standing up.
Thanks.

[QUOTE=Brooklyn’s Best]I am in constant pain and have been to many pain specialists…[/QUOTE]

Are you on any pain meds? I take Gabapentin, without it I don’t function.
It doesn’t take all the pain away but does help a lot.

Take care and never give up the fight!

Rhonda

[B]It is very normal to have pain, all different degrees of it along with numbness. My husband had a severe case of CIDP , never recovered and for 5 yrs was in extreme pain 24/7.[/B]

Hello Pattsy-your husband’s situation sounds very much like my own and others except for 2 things….1) I was given IVIG after becoming unable to walk. 2)There was a lot of pain which became very severe and began during the awkward stage but peaked about a day after totally losing strength and after IVIG was started.
Please keep a close eye on the pain level-it usually (in my case–a 2 timer) begins in the lower back, like a regular backache, but spreads to the legs, hips and other areas and can get very severe. It requires powerful drugs and they need to be administered in the hospital. Also keep a close eye on his blood pressure as GBS can cause it to rise quite dramatically…this also requires monitoring.
Other things to watch for are constipation as well as difficulty in releasing the bladder….these problems are caused by the muscles not getting the message.
I am really hoping that because you did not mention any of those symptoms that he is actually recovering….maybe just differently than others.

good luck….Ray

Yuehan–
How does fish oil decrease pain? Does it decrease electric shocks also? How much ALA do you take and how long does it take to work? I take fish oil–but I take 1200 mg/day– for cardio health. thanks

I am sorry to hear that you are in pain.

I don’t know if it will go away as all of us experience different things as we deal with this GBS/CIDP.

I know that the IVIG has helped me but it took several treatments before I noticed a difference.

I take gabapentin for the pain, it doesn’t take it all away but does take the edge off.

Hot tub and warm baths help me

take care

Sorry to hear you are in so much pain.

Have you tried IVIG? It has really helped with my pain.

Good luck,
Rhonda

I too have severe pain, mostly because of a couple of conditions in my back. I see a pain managment dr for this & he has rxed a controlled substance for my pain I take it 3 times a day,, every 6 hrs as need for pain. I have also found that with my Lyrica, Baclofen for my gbs & the pain med also help with gbs pain as well The only downside it makes me tired at times & that is a side effect. But I still have the numbness , tingling, & twitches, But pain seems to be controlled. Especially with back !!When it gets bad I have tears running down my face even if im just sittin there.
I’m glad Nic has found a drug that helps her.
I’m thankful that these drugs our at our accesibility to help us.
I have also gotten cortisone shots ( Kenalog ) is the kind. in my back The last shot I got I got in my lumbar sacral area & it seemed to help pretty good , 2 down falls I could not do anything bent over in my wheelchair or anywhere , because I know the pain would be so severe. & the other down fall I’ve had 3 injections total & with all 3 they extended my menstral period anywhere from 2-3 weeks, this last shot it was a 3 weeker. Horrible !!
HAD to go to gyn to get progesteron for 7 days to get me back on track. I have 3 days left. we’ll see how long this next one will last. I’m hoping it should be normal since I had no Kenalog shot lately.
Bestwishes to you & nic
Ruth

HI,
My daughter experienced a lot of pain, she normally could not feel her legs and feet. We were told that this was healing of the nerves and that as they regenerate it is like when you get frost bitten and then your skin thaws, the pain tinglyl etc. will feel the same way. I am sorry you are feeling this. Heat seemed to make it worse for her she slept with no covers on her legs or feet because it was very painful at night when sleeping. I hope this helps you in come small way. Good Luck and I am so sorry you have to experience any of this.
Mom2heather

The pain all of you are describing is exactly what my daughter describes. She is 34 and has now had 2 years of burning, shooting, zapping, dog bites, pain pain pain. Neuros give her neurontin, worthless. They act likethey are giving her some miracle drug. It does nothing. We have been through 3 pain management docs, now we have one trying tegretol. He would like to give her methadone. I know it worked on her pain but gave her hallucinations off the charts. Guys with machine guns at the end of the hall, scorpions on the bed. Can’t do that! So, along with the morphine, actually time release, she’s a combo of that and the tegretol, which is making her exceptionally sleepy and neurontin and baclofen. There are some other meds for something that is like schizophrenia, sleeping and a mild mood elevator. The one drug that works without lots of side effects is oxy, of course they’re all scared about their risk management insurance and are hesitant to prescribe on a regular basis. But it really worked. Can’t remember the dosage.

Bottom line, try to get a pain managment doc and you may need to try more than one. I have to pay out of pocket for her current pain doc, $75 a month not too bad. I also have to pay for the ms chontin, insurance will not pay for it, that’s about $120 mo now, but it was as high as $500 (Walgreens’, the independent down the street ended up being $175/mo for the same med!) The other problem I had with Walgreens is that either they did not know how to count pills or someone was getting to a few out of every bottle the ones with street value.

Life is miserable with pain, for every one. I keep saying part of a medical professional’s training should be to be locked up with a person begging for pain meds and NOT HAVE ANY WAY TO HELP. AND NOT KNOW WHEN IT’S GOING TO COME TO AN END. They all get to walk away after 45 or 30 minutes or 5 minutes. Right?

Get to pain management. Have your neuro write a referral, or your primary wrtie a referral.

Hi Ed,
I am also very sorry that you (or anyone) has to go through this strange kind of pain…, I also started out with Right leg pain (sciatica) that eventually moved to the left leg– and now is more in my hands- both feet and legs being mostly numb. I did have a ruptured L4-L5 disc and had two surgeries to correct. but the rest of the pain is not from that injury– or is it in some way related? many years of pain, but very little weakness– tests all seem to come in ok, reflexes are ok… only the biopsy of the sural nerve confirmed CIDP. Now i have nerve conduction and EMG findings to support the Dx, but for years i have suffered. They tell me I am lucky that to be strong — but the pain is becoming more and more disabling.

My advice to anyone with this disease is to keep searching for what works for you, and keep up hope that the pain will ease up with time. Never give up hope! My feet being numb is a blessing (I just have to be aware of my feet all the time to keep them safe from injury) but how could I wish that on you or anyone else?

I am asking for a trial of Rituxan, but currently being denied by my insurance co. We keep up the IVIG and methylprednisolone- and I finally had to admit that I need pain medication.

Good luck to you and to all of you out there who give me hope. Typing is difficult for me, but i read every word on this forum — THANK YOU TO ALL OF YOU FOR THE ADVICE, THE COMFORT AND THE HOPE!!

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

Hi,

I have noticed an increase in pain since getting IVIG. Thinking that the more I become able to do, the more pain I get from doing more.

Hi Claire,

Welcome to this forum, Sorry to hear you have had such pain, an interruption in treatment is scary. Glad your back on line.:)

I am one of those that can’t take lyrica for bum lab results on liver but. I do use Neurontin but it doesn’t do the pain away.:(

Codene products work for me. Vicodin, tylenol with codene or perks 5-325.:D

my theory why some people do better with the narcotics is as such::rolleyes:

I believe that not all the pain us CIDP sufferers feel is nerve pain. I believe much of the pain is from tendon stress and or tendonitis. When only certain muscles work, other pick up the duty and things get out of balance and pain comes from that.
I use Voltaren Gel just below my knee caps and on the achilles and alot of my pain vanishes.

I also take Ultram or tramadol 300mg Extended relief. Its a synthetic narcotic.
it works pretty well, doesn’t get you buzzed, although I like the buzz of codene, I am limited on how many I can take week. 2-3 tablets or the labs elevate. I only use them if I do yard work or heavy labor.

Best of Luck to you.–tim–

Welcome to this site and this on-line family. There are many discussions of pain medications on this site. the most important point is that neuropathic chronic pain is different that surgery or trauma associated acute pain and that sometimes it needs a different approach including different medicines. the ones most used are gabapentin (Neurontin) or its newer, fancier, and more expensive version Lyrica. These help the burning, crushing pain sometimes better than methadone or other narcotics. Sometimes people need both, but it is definitely worth asking your doctor about neurontin or Lyrica.
WithHope for a cure of these diseases

hello tina my name is jim and i got gbs in aug 05 but due to probs with nerve damage.i am un able to work but good luck with docs i live in richmond ind and i have to go to indy to doc. it is hard cause legs go numb after 15/ 20 min into drive and the pain .i hope you have better luck cause every thing they gave me didnt work. only thing i take is percets and they dont really work . i guess my system is real screwed up but telling disability this is another . i,ll pray you find what you need cause i sure didnt in richmond. and now lost medicade so i may be getting sick from pain cant pay docs or meds sorry for rambiling jim.:(

hi my name is jim. i live in ind and in aug 05 gbs got me. i did,nt have to be on ventalation and didnt have total paralisis. but it got pretty bad and still is only meds im on and can take is perciset 10s. nothing else worked tryed every thing you would have thought i was guenee pig or somthing. only thing that help with pain was those. and i hate la la land all the time. but at lest i can function some with out to much pain. and some times it dont work i just think nerve damage so bad that this is only way unless god heals you/ me. so i just have to deal with. if you dont have ask your doc for them. all other stuff didnt come close for me. so maybe this will let you have some pain free mobility for a little bit. and not take so many other pills is a plus in my book any day.so hope this helps. jim

I meant also to say that it is virtually impossible to be hopeful when you are in significant pain, so advocate for her for optomizing pain management. Lots of people with GBS have terrible pain and the “usual” pain medicines do not always work so well because the nature of the pain is “neuropathic”. You can find discussions on pain in GBS in which people talk about use of gabapentin (Neurontin) or Lyrica. These are not the only medicines that can help. It is really common for people to not get enough gabapentin to really stop the pain or to get started on one dose and it does not get changed. This is a medicine that it is best to start at a somewhat lower dose and then go up as the body gets more used to it. The important points are that if someone is started on a dose that is “too high” for them, they get really sleepy or perhaps dizzy. People adjust to this when on the medicine. The second point is that you need to keep increasing the dose until the pain is tolerable.
WithHope for a cure of these diseases

One thing that might help is better pain control. Have you tried neurontin? I was started on cymbalta a month ago and it has made a lot of difference in pain. This medicine also can help the nerves in the brain with sadness as well as the nerves in the periphery with pain. I saw you have been on steroids. this can help the CIDP, but sometimes also affects the strength of muscles and, as others mention, lead to trying alternative therapies for better control of the disease and to limit side effects.

I understand very much the anguish that happens with not being normal or who you once were. I am sure you want so badly to be able to enjoy your little girl and have the strength to care and play with her. Hold tight to the joy of fatherhood which has much more to do with love than with what gets done.

With Hope for cure of these diseases.

Hello Dick,
If you need advice in getting a group going you should get in touch with my friend Pat. She’s not a member of this forum because she does not have GBS or CIDP, but she does have a neuropathy that causes chronic pain. She started a support group in her church but can no longer run it because she will be moving to a new home soon. Now, you are doing a good thing to deal with pain by starting your group. I admire Pat because she deals with pain by “working for Christ”, busy hands, busy mind and busy spirit.

PM me and I will give you her email, address and phone number.

First off, I think it is a wonderful thing you are doing through your church. I personally know of two people in my area who have committed suicide because of chronic pain. I guess I would have to say that what helps me most for pain are drugs: Neurontin (Gapapentin) for the nerve damage I have. I also take 3-4 Advil when my lower back gets too bad, at night I will take half a Lortab to sleep, if sleep doesn’t come within an hour.

But there other things that do help me with the pain I suffer throughout my body. Water aerobics helps me greatly to keep my shoulders & arms more mobile, but it does tend to weaken my legs afterwards. Rest, such as taking an afternoon nap and/or getting 11 hours of sleep at night. Time, or just getting used to it after all of these years. Prayer is comforting, although I am almost always praying for someone other than myself. Elevating my legs on a recliner at night helps, especially now with a sprained ankle. I am sure I will think of others later on.

BTW, sex definitely does not help us relieve pain, something disastrous usually happens to one or the other, LOL!

Dick,
It is good to see you posting, but I am so sorry about your severe pain. I also find that when I walk a lot, or get extremely fatigued, my pain is worse. I took a fall at our cabin on July 22nd & probably sprained my ankle. But since we were going to be up there for 10 days, I compensated by using my right leg more & worked through the pain to enjoy myself. The day after I got home I fell in my livingroom (I think I was just exhausted) & this time my entire left foot & ankle was very bruised & sprained. After 10 days in the wheelchair, I noticed that I no longer had my lower back pain. My entire body felt totally rested overall. I think I knew this all along…

But I am like you, I refuse to give up walking. It just means such a difference in my quality of life. I have fallen 3 times in the past 3 years where I have broken bones in my feet. I have been told by radiologists that read my foot X-rays that I have the bones of an 80 year old, also full of arthritis. But fortunately I have diminished feeling in my feet, so I don’t feel all of the pain. Neurontin really does help me tremendously with the nerve pain. At night I now take half a Lortab for the other pain (muscle pain mostly.) I have the attitude of “live for today” & I don’t worry down the road.

Even here in MN we have had brutally hot weather this summer. Heat does zap my strength, but I am stubborn & spent a lot of time at our cabin, where we ran the generator & used fans to keep cool at night. During the day we either stayed in the lake water, or cruised in the boat to stay cool. But I can’t imagine the kind of heat you must have had down there. When I was at home I was lucky we have central air, which is actually pretty rare in this area. I even do the hot tub after my water aerobics at the YMCA. I know it is bad for me, but it feels good at the time. I no longer work, so if I get tired, I take a nap.

Basically what I am saying is that somehow you need to get the pain under control. I remember back to when my foot pain was unbearable, I would just lie in bed & cry. I used to have worse muscle pain also, I took Lortab as needed. Take whatever you need to control the pain. I will usually spend the morning in my power chair, as I use it for the computer & to read the newspaper. The rest of the day I walk, but not as much as a normal person would; more as needed. Try a little of booth each day & good luck, my friend, in finding some relief from your pain. As Liz always says, your pain is our pain…
Blessings, Pam

Hello Kim,
If Adam’s doctor feels that IVIG is the best treatment, it might be just the BRAND that he is reacting to. A different brand could be tried to see how he reacts to that, otherwise do look into PlasmaPherisis for him. I was told that PP works the same but is just an alternative when you have a severe reaction to IVIG.

It sounds as though your wife is really doing quite well at the one year mark. If she has pain is it nerve pain, muscle pain, or joint pain? Because if most of it is in her feet, most likely it is nerve pain & neurontin (gabepentin) or Lyrica will help a lot with that. Even at small doses the effect is extremely helpful & the side effects are really mininal. She still has another year or two of recovery ahead of her, but I would try to make it pain free if it is possible.

Does anyone get new added symptoms? Kevin has had burning in his feet for the last two days. They actually are warm, we rest his feet on top of ice packs, it seems to help. I gave him tylenol for the pain and aleve for the burning since I assume the burning is inflamation. Does anyone have any other advice? Dawn Kevies mom

Dick,
What dose of gabapentin are you on, are you sure it is enough? It can be hard to find just the right balance, enough for the pain, not too much to cause brain fog. I agree with you on Lyrica, heard that a very long time ago. I think it was from Brandy, so I never bothered switching over. I also get the muscle & joint pain, when it gets bad enogh I use vicodin (lortab), but only at night as it knocks me for a loop. I always say to my family I can deal with the disability part of this illness, it is the fatigue & pain that are the hardest to tolerate.

Dick,
I am also sending big hugs your way, I am so sorry about all of that pain. Last week on Monday I couldn’t walk on my right ankle, by Tues it was the right foot. No rhyme or reason to it. Yesterday it was my lower back? Are you taking anything for the pain at all? If it is nerve pain, you should at least try Neurontin, Lyrica, or Cymbalta. If it is muscle or joint pain, maybe some vicodin or even 4 Advil?
Don’t try to just tough it out like most men. My husband had two back surgeries last year, didn’t make the greatest recovery, yet he won’t take even an Advil for his pain. He has slept in his recliner the past few nights because of shoulder pain. We are a fine pair for our ages, LOL. It hurts me more at times watching him, just wish men weren’t so stubborn, & I know you are like that!
Best wishes, Pam

Stacey,
I haven’t been able to feel or move my toes for over 5 years now & they are not curling up at all. I do wear AFOs, & make sure that I buy my shoes longer than normal. As for the neurontin, it went generic a year or two ago & the generice form, gabapentin, is pretty reasonable. Some believe it makes you gain weight, but I know now that the 80# I gained back in 2003-2004 was caused by the steroids I was on then. And by using Weight Watchers, I was able to get back to my pre-CIDP weight. I know what you mean about complaining to others about CIDP, as no one but the people on this forum can really understand what you are going through.

My husband is an only child & his mother now has dementia, so we are the sole caretakers for her, although we have managed to keep her in an apt. She has a cleaning woman, Meals on Wheels, we call in her Rx, pick them up & fill her pill container, etc. It is so hard to care for all of her needs. We also have a son living in an apt. 4 blocks away who is a paraplegic, so my husband must take out his garbage, take him grocery shopping, etc. I try to get over there & help him get his wash done, vacuum, wash dishes, dust, etc.

Then there is my 82 year old mother living 4 blocks from us, still in her house. In two weeks time, her pipes froze, her water heater went, her valves under her sink had to be replaced, & her TV set went. We had to help her with all of it. Normally she is pretty self-sufficient, but Feb was just a terrible month for her. She has been a widow for 30 years, & my two siblings don’t live nearby. Sometimes it is all so overwhelming for us. My husband just retired, but we spend the majority of our time taking care of others.

I hate when people say, “Why don’t you go south for the winter?” The are so clueless, especially of the fact that I am ill. If they only knew how much sleep I need. Anyways, I so understand what you are going through! That is why I come to this forum, where people understand what it is like to have CIDP, & we can vent. But I do stronly recommend you get on gabapentin ASAP, I could not live a day without it. BTW I am only 53. Just hang in there, things will get better when you get the right pain meds; and please get lots of rest.
Blessings. Pam

First off I haven’t been able to move any of my toes for almost 5 years now, but it doesn’t prevent me from walking (with AFOs.) As for pain, I don’t believe it is from the IVIG at all, as it has been too long since your last infusion to have the kind of flu-like symptoms that Jermimy is describing. I would guess that first off you have nerve pain, which needs to be treated by either Neurontin (Gabapentin), or Lyrica. You should be on at least 1800-3600 mg of Neurontin a day.
The second kind of pain I tend to have is what I call my muscle pain, it tends to come on suddenly & the only thing that touches it is Vicidin (Lortab.) If I get it during the day, however, I try to get by with 3 Advil, as even taking half a Vicidin knocks me for a loop. The kind of relief you need you will not get from ibuprofen, as the pain from CIDP is too intense. This is a very serious illness/syndrome & you should never be accused of seeking pain meds with CIDP, or your doctor is no good. Please ask for the help you need without feeling like you are drug-shopping…

I just had my first IVIG last week for CIDP. 2 days went ok but the doctor on Friday wanted me off the Gabepentin. So I went off…what a nightmare. I too was in so much pain all night. I finally got up and found the bottle of Gabepentin and took 2. I also took 2 at lunch today. I think I need to call Dr and tell him IVIG doesn’t take the pain away. It did help and I have not had any electrical shocks or shooting pains since the IVIG but without pain management and sleep I am useless.

Rhonda

I’m on opiate pain management– don’t know if I could survive without it. Nothing else even touches the pain– and I can’t tolerate/get any relief from Neurontin, Lyrica, Cymbalta, nortriptiline, amytriptiline, blah blah blah (and won’t be wasting any more miserable months being EXTRA-miserable giving these drugs a fair shake, either– my existence is tough enough! My pain specialist isn’t worried about the big doses of the painkiller, so neither am I. I take Avinza for my long-acting (time-release, take it every day no matter how I feel) and Dilaudid for any breakthrough pain– and I’m NOT supposed to tough it out, either. Chronic pain is a different animal, and I’ve learned that toughing it out is truly not worth it over the long haul.

I’m lucky in that the pain medication doesn’t make me drowsy, in fact just the opposite– although it can crank me up so much so that it disrupts my sleep. My doctor prescribes something to help me sleep then, and also– for when the fatigue is overwhelming– Adderall (mixed amphetamine salts), to help keep me awake if I have to drive or stay awake for whatever reason. I was nervous taking that at first, and waited for when I had plenty of time in case I didn’t react well to it. Well, I FELL ASLEEP and slept through the first dose, haha! It does help me stay awake as needed, and does not affect my ability to sleep later because it wears off pretty quickly (I do NOT take the XR– time-release– formula!) You might consider talking to your doctor about it.

For most of my life I was one of those people who never even took an aspirin. Now I’m a veritable pharmacy– but at least there are tools that help somewhat, and new things coming on the market all the time. Keep trying things– everyone’s different, and what works for you will only be discovered through trial and error (hopefully minimal error, haha!)

hi jeff. i still get pain in my arms and legs when i over do it. (and if memory serves correctly, you’re probably over doing it). i tend to push myself too much too and pay the price afterward. please rest and the pain will ease up. i’m over 5 years post gbs and i have to try to slow down. i know it’s easier said than done, but please try to rest. it’s really important. feel better.
deb

I use gabpentin and morphine slow released at nite , also I got a electric blanket to keep my legs warm and that works too.. I have had no problem with my Dr. giving me what I need to keep the pain at bay , but I fiqure I will probally have IVIG sometime in the next two months…

hi bill. maybe you should print out some of the postings from this website, including jerimy’s medication suggestions and it will prove to your primary that most of us have moderate to severe pain from our residual gbs. i take vicadin when i can’t stand it anymore and i am 5 years post gbs. let us know what your primary gives you for the pain. stay well. 🙂

i try to live with the pain. my hands are the worst and sometimes they feel like they’re on fire. i just (flushed) some out dated darvocet. wasn’t working anyway. now i have vicodin. i only use it when i just can’t stand the pain anymore. i am 5 years post gbs and also have autoimmune hepatitis, so the pain meds. aren’t good for my liver. believe me, i feel your pain. i hope your doctor can find something for you that’s non addictive and will give you some relief. being on percocet for so long is really not a good idea. good luck.

I remember blankets, any touch at all — was off the charts painful. Have you tried experimenting by placing a cardboard box, carved out in such a way that it allows your son’s legs clear passage, but holds the blankets up off his skin? This suggestion is in addition to what others have said. I hope this helps.

I remember blankets, any touch at all — was off the charts painful. Have you tried experimenting by placing a cardboard box, carved out in such a way that it allows your son’s legs clear passage, but holds the blankets up off his skin? This suggestion is in addition to what others have said. I hope this helps.

Molly thank you for the update, I have a clearer picture now, I was as disabled as your husband two years ago, I can now feed myself, use a straw for drinking and attend to my own washing, and most of dressing; so take heart. Your husband is in geat pain, this is called neuropathic pain and is part of neuropathy for several of us. It tends not to respond to the usual pain relievers, but there is neurontin (Gabapentin), with a starting dose of 300 -600mg a day ( In divided doses if pain persists through the 24 hours) Increasing to as much as 3,600mg a day. The side efect of drowsiness usually gets less. It is specifically for neuropathic pain. If not tolerated there is its modern cousin, Lyrica (Pregabalin) or the older one Tegretol (Carbamazepine). DocDavid