Pain Meds?

Sorry to hear about your husband’s pain. When I was in the hospital and came home I would take two Oxycontin and that would help for a few hours. I was lucky and most of pain was gone within a couple of weeks after being home. As for sleeping, ambian did not work for me even taking two. I take 10 mg alprazolam and I need to wind down for about an hour no TV, conversation ( I have found listening to a book on tape works have to rewind in the morning because I have no idea how much I heard). I have been luckly my familty doctor know little about GPS but has at least read enough to be willing to help me try various options. Good Luck Remember, I am not a doctor just stating what I did. Take all with a grain of sand.
My glass is not half full or half empty. Just happy to have a glass

My experience is that most docs will not prescribe anything effective for pain, unless you are in pain management. So, try to get the primary doc to refer you to pain management. Make sure your insurance will cover the doc you are referred to. You might have better luck with pain management. It’s another appointment to drag off to, but if you can get rid of his pain your life will become more bearable, too. He almost sounds like CIDP, which is what my patient has.

Neurontin was totally ineffective for my daughter. When the neuros would prescribe that one would think they were giving us a miracle drug! Maybe helped a little with the shooting pain, but not the dogs gnawing at her legs, not the zapping pain. Methadone worked on the pain but gave her hallucinations. Diladuid (sp?) and morphine worked. The pain doc stopped the diladuid, it was oral pill form, not the IV that worked so well at the hospital. Morphine alone in pretty high doses is helpful but does not get rid of all of it. I am a little nervous now with a NEW pain meds doc who wants to do Tegretol, I have my doubts.

Bottom line, push, push to get him to pain med doc.

Hi,
Neorotnin is used often, it is for nerves. You can get up to 3600 mg. If your husbands pain is like a knawing dog, I suspect anything less might not help. The narcotics, morphine, vicodin etc. help with pain but, can be addicting, cause constipation hard on kidney’s. Lyrica and neurotnin can be taken together. And yes, tegretol is seizure med, but is used in nerve pain. We have a family member who has trigeminal neuralgia and gets great relief with neurotnin , tramadol and lyrica. Cymbalta is also good for pain as well as an anti-depressant/anxiety med. Is it possible to see a pain management doc if you are getting no where with this neuro? Or if you have faith in your primary, it might be a good idea to start a relationship with them, they could be helpful when other issues arrise and are easier to see on a as needed basis.

I see a pain management doctor. He’s physiatrist/rehab specialist.I had such unbearable nerve pain and it was so advanced before diagnosed. I’m on the Fentanyl Patch # 100 mc.
Approaching a doctor about pain. Buzz words like: “I need relief”. “I want to be comfortable”. “I need quality of life”.
Have records of diagnosed illness in hand/list of physicians you see.Always take a second person with you/its good to have a 2 nd pair of ears in the exam room.
My pain doc hadn’t ever had a CIDP patient and still doesn’t get it.To him pain is pain so whatever can be done to alleviate it so be it.
Some neurologists will/can prescribe narcotics.
Most GP/family doctors will not prescribe or at least not much stronger than Vicodin long term.
Please PM me if you want. I’ve been to doubting docs before and the experience is daunting.I’d rather not be on such strong pain meds but no other choice. It took 2 years of IVIG PLUS the Fentanyl Patch for the pain to be somewhat under control.

Neurontin(Gabapentin) works for me! I also take noratriplyine at bedtime, yes it is a seizure drug but it is also a nerve block pill.

I tried to go off gabapentin and I was crawling on my hands and knees to get to the bottle I was in so much pain!

IVIG monthly and I know when the month is almost up cause the shooting pains and electrical zaps increase

With his hands and feet being cold, you can try rice bags. I have to use them all the time or some use a heating pad.

Good luck,

Rhonda from Canada

Ivig will stop the progression of nerve damage and allow healing if his body is under attack.. You can look up information on this site..
I took some pain meds initially, but personally am not a big fan…
I had severe back pain, as well as other probs.. I don’t understand why your
doctors are unsure of treatment!
If interested you can email me or any one of several others on this site for more info…
Good luck… Deanop

I just started a new med that came out for treating nerve pain. I was unable to tolerate anything else and have been dealing with the pain for quite some time with nothing. Talk to his dr about Savella as an option if neurotin doesnt work. Cymbalta and Lyrica are supposed to be good too…had side effects really bad with Cymbalta and Neurontin so most everything is out of the question for me.

So far I am tolerating the new stuff and have found some relief. Not 100% but enough that I can function better and sleep better.

I sure hope he gets relief. Pain is no fun and trying to just deal with it is hell.

Can you go to a different doctor? My coworker says that if the doctor is not working out for you, move onto another one. Life is too short to waste time with doctors that don’t understand and don’t help you. I was having a frustrating experience and her comment helped me move onto another one. Unfortunately, I didn’t gel with that one and stuck with her for a while, but I am moving on again, exploring other options.

I am brand new to this forum, as I have only recently found you. I was hospitalized with almost total paralysis on 12/25/09, and just released from the hospital last week. While there my pain was closely monitored and managed very well.

I am currently taking Neurotin (gabapentin) every 6 hours. At 6 AM, !2 noon, and 6 PM I take 600 mg. At 12 midnight I take 800mg. I have found that when I am inactive the pain is much worse, hence the higher dose at midnight.

I also take Baclofen a drug no one has mentioned yet on the same schedule. That is 5 mg each time. This drug helps with the awful muscle cramps that come with the pain and tingling.

If I am late taking my meds I am in awful pain and cramping, so I know they are working.

My current PCP is willing to continue to prescribe the above meds so I have no problem. The 2 hospitals I was in have very high reputations, as do my physicians who took care of me so I am lucky to not have a physcian who dismisses this as no big deal – and I am glad, since I gather I am going to have a long time recovering.

I have no problem sleeping with the meds. Good luck in your quest!

Cathie

Hi Lost wife and welcome! I know what your husband is going through…Most doctors that I had to deal with never really addressed the pain that I had prior and after my diagnosis with GBS in July 2007 either. The back pain was hellish (for lack of a better word). Most narcotics would take the edge off, but not eliminate it. Others who have posted on here are probably more knowledgeable than me regarding Neurotin (gabapentin), etc, as I was not prescribed anything other than hydrocodone for pain. It took quite a while (2 months+) before most of the numbness/tingling resolved. You husband needs to be aware that when he does regain feeling in areas of his body, he may experience what I call “over sensitivity” in those same areas. When I could finally “feel” my feet, hands, etc., they were overly tender to the slightest touch and itched like crazy. I attributed that to the nerves healing. I was like Jack Nicholson in the movie, As Good As It Gets… I couldn’t step barefoot on the smallest crack! The sleep problems, dizziness, and taste problems should also lessen as time goes on. Tell your husband GBS really [B][I]does[/I][/B] mean “Getting Better Slowly”, and to take each day one at a time. I know it’s frustrating for both of you right now, BUT HE WILL GET BETTER! Good luck to you both and keep us up to date.
Paula
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GBS July 2007

Hello! GBS can be so painful!! And this is not to diminish your husbands pain, this is just to tell you what worked for me. When I came home from the hospital, after receiving IVIG, I still had a lot of sharp pains in my legs (all over, but most noticeably in my legs!).

Due to a random conversation w/a stranger, I decided to take sugar and carbs out of my diet. I started my new diet by eating green beans and cottage cheese for a few days, and then added foods one by one.

I felt better immediately AND discovered I was allergic to c o r n (which is in everything!!).

Once I got corn out of my diet, I no longer had any pain and needed no meds (including neurontin and ibuprofen! *also see Yoga info below).

I had been home from the hospital (and in pain) for about 4 months when I realized this.

Occassionally I’ll ache, expecially when there is a low pressure storm coming through. Too many “taxes” on my system determine how bad I feel. When I take care of myself (eat healthy, NO sugar, walk, and rest when my body tells me to do so) determines how good I feel!

Sugar tastes sooo good, and I still eat it, but the more I eat, the worse I feel!!

*One more tip: A friend of mine, who teaches yoga, taught me some restorative yoga poses. They also helped diminish pain. If I were in a restorative pose long enough (20 minutes), any pain I had went away. It was like a miracle. (Restorative poses are not hard, nor should they be. Only go to a yoga specialist who knows what they are doing!!) A yoga person will also help people w/breathing techniques, which help with relaxation. Good practice for the GBS person as well as the caregiver!!

Best of luck and health to you and yours!! Don’t forget to take care of yourself!! Being the caregiver of someone w/GBS has its own set of issues!

Sending positive messages your way!
Gale
Hospitalization in Jan, 2008
onset began Dec 2007 w/tingling in hands and feet
21 days later was in hospital for IVIG
did not need respirator

“Lyrica” seemed to work the best for me during the day. At night nothing seemed to help except prayer and finally a miracle.

Also, on my ” GBS re-occurrance” a year after my first hospitalization, it was amazing how fast the Ivig helped my body recover from paralysis.