AnonymousFebruary 27, 2010 at 4:28 pm
Husband is still having bad leg and lower back pain, but I can’t seem to find anything online regarding pain and GBS. Are they just clueless that this disease causes it? All the cute little web articles say “weakness, fatigue, and numbness/tingling”. None mention the freezing cold hands and feet (which if I have to turn the heat up any higher, the rest of us will suffocate – or I’ll have a heart attack when I get the gas bill!) or the awful pain. Tylox, Lortab, Oxycontin don’t make much difference.
I have done some research on the meds others are mentioning (neurontin, Lyrica, Tegretol, Topomax, etc.) and since these are originally designed for epilepsy, yet, prescribed for perphiral neuropathy – do they work better on GBS than narcotics, because they are designed for damaged nerves? We have an appointment Monday with a regular doctor – I know she is going to be hesitant to pass out either the nerve drug or a narcotic (especially since I am sure they do not believe that this hurts). The appointment with the neurologist is Friday and I hope (fingers crossed) that he will prescribe something along the lines of neurontin. I heard that neurontin can cause sleeplessness, but he doesn’t sleep anyway. Even ambien won’t make him sleep and he tried that pre-GBS. Also, as far as dizziness goes, that is almost a constant companion, along with food not tasting right and ringing in his ears.
Also, saw IVIG was supposed to be good for pain. Not sure if anyone will do again, but I will ask neuro if he thinks it will help.
[COLOR=”DarkOrchid”]So in everyone’s experience – what do you like for treatment of pain? Any tips on approaching a doubting doctor?[/COLOR] Of course, this is the same woman that sent him out of the hospital (after pneumonia – 14 days) unable to walk properly b/c she (and I quote) “had to release him because BCBS said if he could walk 150 feet, he could not stay inpatient” – but no one bothered to determine why an otherwise healthy adult who was terribly sick with pneumonia could not walk without a walker, stapped to a physical therapist…??? Don’t you love the ins company?
So really looking for any input to the questions in purple – not my entire rant since I just re-read it and it got kinda long….:D
AnonymousFebruary 27, 2010 at 5:03 pm
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
AnonymousFebruary 27, 2010 at 8:20 pm
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.
February 27, 2010 at 8:59 pm
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.
AnonymousFebruary 27, 2010 at 11:58 pm
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.
AnonymousFebruary 28, 2010 at 12:42 am
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.
Rhonda from Canada
AnonymousFebruary 28, 2010 at 10:54 am
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
February 28, 2010 at 3:29 pm
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.
AnonymousMarch 1, 2010 at 11:46 am
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.
AnonymousMarch 2, 2010 at 2:52 pm
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!
AnonymousMarch 3, 2010 at 2:53 am
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.
GBS July 2007
AnonymousMarch 10, 2010 at 8:07 am
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!
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
AnonymousMarch 12, 2010 at 10:00 am
Hi! Sorry so long in the reply. I tried to respond Friday, but for some reason, my connection would be on then off.
Anyway, just to update, we did see the neuro last Friday and he prescribed Cymbalta and Neurontin. Also, had the home health nurses come to the house for IVIG for 4 days. He indicated that if Joe did not noticeably improve, he wanted to check him into the hospital for the plasmaphereses(sp). That is so nice that there are services available to come to your house like that. He was able to watch TV or sleep while they ran the meds, I think he thought he would be in an ER type of situation for 7 hours for the treatment. The meds and the IVIG seemed to help with the legs for sure, back pain not so much.
However, we are back in the ER as of 9:30 last night (still there now, waiting on a bed in the Progressive Care Unit – PCU – step below ICU). Back for chest pain and shortness of breath. You all know, I thought the GBS must be coming back with a vengence – we had no lung involvement the first time. But now we are either having an acute sickle cell crisis in the lungs (which is also super dangerous) or just a regular sickle cell crisis and pneumonia. I almost cannot believe the irony of having minor gall bladder surgery 12/30/09 – turning down the pneumonia and flu vaccines in the hospital at that time, only to turn around and be hospitalized for pneumonia AND GBS 12 days later. I wonder, would we have avoided the pneumonia by taking the shot and got the GBS from the shot anyway?????? Frustrating…
AnonymousMarch 12, 2010 at 9:16 pm
“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.
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