More Pain

I wish i could offer you advice, but i am new to the gbs thing. I do want to tell you though, that we all are here for you. Do you have somene to talk to? Are you satisfied with your doctor? Have you tried a “Pain Clinic”, massage, acupuncture, etc.? I haven’t been able to do anything for my illness because im pregnant, so i understand (in a way) your frustration. I have only been going through this for 7 months though. Maybe you could send a private message to Jerimy, or another senior member, as they are very knowledgible. If there is anything i can do, please let me know – even if it is just to talk, pray, anything. Keep your chin up;)

Take Care,
Jamie

George,
I have CIDP but my pain comes and goes as well. You didn’t say what dosage of Lyrica you get. It might not be a full dose yet. Don’t give up. No one should have to live in pain. Jamie had a lot of good suggestions as well. I know it took me over 6 months to get my drugs in order. Personally I take Cymbalta and neurontin. This combo doesn’t work for everyone. I guess what I am trying to tell you is sometimes its trial and error as to what works but once you find it you will be glad you tried. Take Care.

Dear George,
I am just a mom, so take my post with a grain of salt. First, sorry you are feeling so bad. Next, one of our wonderful members who has recently passed (lymphoma) used to always give a number of 32-3600 mg a day of neurotnin. You are there. Perhaps you could increase the Lyrica, as it is for nerve pain. Sometimes the Lyrica works better than the neurotnin. Those two drugs as well as oxycotin would be quite a cocktail, I agree with you.
Here is the grain of salt part. You mentioned your doc feels this is not a relapse, but to go to the er if it gets worse. You also mentioned he checked your reflexes, which were 0 to begin with, and he said they are not worse than they were. If they were 0, it would be hard to measure worse, only better would be measureable. You have been increasing the pain meds and the pain is worse and now you use a walker. Have you been doing more than usual these past weeks? Do you feel you have been resting enough? If your activity has not increased and you are resting, you may want to consider a repeat ncv/emg to see diagnostically if there is any change. I am not trying to be irresponsible by suggesting my next statement, just pro-active, as my 11 y/o was in this same position. We thought for 7 months that his pain and inability to do things were gbs residuals, but it turned out to be cidp. We could have gotton ivig sooner to stop any additional damage, but we tried to wait and see if it was just residuals. Finally a repeat ncv/emg told the story and regular ivig was resumed. IVIG is not like a tylenol, just pop a pill, so waiting and being sure it was not gbs was something we had to do, but at the very least, get a repeat ncv/emg to see if you are worsenning. Worse case, you put yourself through the test and you did not need to because it is gbs, or best case, it is cidp and you can start treatment and feel better. If you do do the repeat ncv/emg, try to get the same doc to do it and bring your old one so the same nerves can be tested and compared. Good luck to you and maybe if you decide not to pursue a cidp dx you could ask the doc to increase the lyrica. Best wishes.
Dawn Kevies mom

George,

I don’t want to discourage you in any way. However, if I have learned anything over the last 25 years of GBS it is to expect the unexpected. I am 25 years out and having a critical time right now with pain. I understand what you are expereincing and for me I thought I was done with GBS and here it comes again…nosing it’s way into my life. ARGHH!! I saw a neurologist in November and was put on Neurontin but it caused a severe weight gain for me and I can’t afford to gain any more weight, healthwise. So I took myself off it about four weeks ago. Big mistake!!! As time is going on things are getting worse, so I guess I need to make a decision about what is important to me. I am away working next week so can’t go back on it until I get home (side effects when starting it are awful—drunk feeling, tired and can’t stay awake). I am doing some research and have found out that it lowers your metabolism so if you can get the metabolism working you can avoid the issues with weight gain. I am hanging in there and encouraging you to do the same. Seek a neuro who understands this disorder and gives you what you need to be pain free. I am looking at ways to help myself and am hoping for a brighter tomorrow.

I am on this forum because I needed to feel validated for what I am going through and who better than those who are walking my walk. I felt I wouldn’t get any support at first because it is so long ago that I had GBS but I have found little bits and pieces that I can put together and they are improving my quality of life. I pray the same will happen for you. Take care and keep us posted.

George,

Hang in there, many things can cause an increase in nerve pain, such as doing to much and sometimes even a cold or flu or other sickness can cause a flareup. I also take Lyrica and it has worked much better for me then Neurontin did, and has less side effects. See if your Dr. would consider raising your dosage some more, or perhaps space taking your pills out more/differently. Good luck and message me anytime, I am here to help if needed. Take care.

Jerimy

Hi George: I am three years out and the burning pain in my feet is definitely worse now than ever before. I have chronic pain in my legs as well-I have found that there are many different kinds of pain in GBS-burning, sharp stabbing pain, deep aching pain, cramping pain, etc. There are different medications for each type-for the burning only neurontin has helped me and I am at 4800mgs per day-amount and spacing of the drug is important. I get no relief from the deep aching pain except from oxycontin- 30 mgs a day. My pain doctor tells me we can increase the dosage of the oxycontin quite a bit though I hope not to, and though we can’t increase the neurontin very much there are other ways to help. Every one of us is different and reacts differently to meds and pain-my advise is not to accept it as a fact of life but try everything you can until you get as much relief as possible. The truth is you can stay on oxycontin if that works for years if necessary or even the rest of your life. Living a life of constant pain is awful-acceptance is a good thing but not surrender. Keep on looking for the thing that works for you and go for it. Believe me, I and a lot others on the forum know about pain and understand how you feel. Good luck. Jeff

Just checking in to see how our guy is doing with his pain. So, FRED…I hope you are doing well. ive been thinking about you every day. I’m going to keep sending good vibes your way;)

Hang in there George. I know it sucks and makes life hard to bear but it is worth the struggle-for your son and for yourself. Looking at what you describe as your meds you could up your neurontin, as well as try the oxycontin. Don’t worry about getting hooked-worry about getting well and pain-free. You turned down the narcotics but I would recommend you rethink that since your pain is not getting under control at all. As I said it was the only thing that brought part of my pain under control-the other was the neurontin. I have the most agonizing pain in my feet-burning like the fires of hell-and only the maximum amount of neurontin brough me any relief. You have a lot of room to operate with-don’t wait-ask for the meds that might bring you some relief. Jeff

George, have you tried going to a pain management technician/clinic? There are so many options available for us to help alleviate the pain. Please, please, get to a doctor and get help with something stronger. You need to be there for your son. Take care and I will send a prayer your way.

Hey George: Let us know how you are doing. Jeff

What is Lyrica? Is it just the newer version of neurontin? I’m taking 300mg of neurontin 3X/day, and my foot pain is still really bad. I’m over two years after a severe case of GBS. I can walk again, but it is really painful.

Hi David,

Welcome. Yes Lyrica is the newer drug which came after Neurontin.

You are on an extremely low dose of Neurontin. I was still on 3600mg a day after 1 year. I believe some take even more then that. I switched to Lyrica because that high dose of Neurontin made me lethargic and I slept all the time. Lyrica has worked well for me, I am coming up on 5 years this November and my foot pain is minimal and only happens when I do too much. Ask your Dr. about Lyrica, or at least a higher dose of Neurontin. Take care and nice to meet you.

Jerimy

Thanks Jerimy,

I thought that was the case with Lyrica. You’re 5 years out .. how long did you have the pain? It does get worse the more I’m on my feet, and sometimes it hard to sleep. What dose of Lyrica are you on?

Hi David: Ia m three years out and still at 4800mgs of neurontin to control my leg and foot pain. I would recommend you raise your dosage before switching unless neurontin bothers you. We all have different reactions to meds and what works for one may not work for another, but you are on a very low dose so you might want to try raising that before trying a new med. I personally don’t have much of side effects with the neurontin.

George: time to get a new doctor. If your neurologist won’t listen to you and your symptoms of pain he is not doing his job. Get someone who will. As some suggest you might try a pain management clinic or doctor but you should do something soon. If you have a partner or caregiver ask them for help in finding a doctor who will help you control the pain. Jeff

So sorry that you are having such a tough time. Your scenario of passing out while going to the bathroom jogged a memory from a lecture in one of my pathophysiology courses. Although most often in the elderly, when a person is having to strain too hard to have a bowel movement it causes them to have a “Valsaulver manuever”, not sure on the spelling. Basically, you can strain so hard to have a bowel movement that your heart can stop beating momentarily. It usually restarts on its own and the patient is unaware of what happened and just wakes up on the floor. When I was first starting to “teach” myself how to have bowel movements again, I can remember straining so hard that I would get dizzy. Only later did I learn what I was so close to having happen. I am in no way a doctor, it just makes sense because I know what it feels like and have learned the basics of what can happen. So, if you feel yourself start to get dizzy, take a break and let your body calm down a bit.

As far as the vision not keeping up with your head movement. That sounds just like the veritgo that I also had to deal with. Any time your body is stuck in one position for an extended period of time, especially being down on your back, your senses start to think that the ceiling that you are staring at is in front of you, as if you are standing up and looking at a regular wall. It will take time to readjust to being up and around. I took some over the counter meclizine for the vertigo and it helped a bunch. I don’t know what else you are taking so talk to your Doc or Pharmacist and make sure that is an option for you.

I too am fighting the pain just to get through the day, I am sorry anyone else has to feel this way. Keep pushing your Doc to adjust or change your meds until you can get on top of the pain.

Keep Fighting!

Stoney

George,

Get yourself to a dr. Do you have emergency rooms where you can walk in for help or are there walk in clinics you can go to? Maybe going when you are at your worst will get you the attention you need to get help with all this.