I am 3 weeks out of rehab & the total body burning sensation is unbearable. I am taking 3000 mgs a day of Neurontin (gabapentin) & have tried lyrica & tramadol & they did not help at all. I was told the pain is my myelin sheath regenerating, but cannot take the pain. Has anyone had similar burning & did anything help the pain? I get some minor relief from Hydrocodone (vicadin) 4 hour.
That sounds awful, Larry, any relief yet? I hope the sensation goes away soon.
hi Larry, I am 11 years into CIDP and a liasion with the GBS Foundation. If you have insurance of any kind, even Medicare/medicaid you need to be taking Lyrica(Pregablin) if Neurontin isn't working. Lyrica works better, requires a lower dose and never made me feel nearly as tired and foggy as Neurontin. Ask your Neuro, it totally changed my ability to function and be pain free. Email me ■■■■■■■■■■■■■■■■■■■■■■■■ if I can help. Take care.
Sorry Larry didn't see your part about Lyrica. I had some major issues with pain and had great relief with Lyrica/Tramadol. Is there a chance the dosage was too low? Vicodin, Percoset et al had zero impact on pain and major impact on function for me.
I myself am on Lyrica and Tramadol. It works better than anything else I have tried.
Yes. I flew to Mayo Clinic in Jacksonville Florida in January of this year. Complained with electric shock, burning, tingling, and feeling sick over all. They thought most of it was mental but the truth is its physical nerve damage. They did find some neuropathy and some heart damage, along with thrpyroid, and other deficiencies. Apparently, we are rare with major problems physically. Most doctors don’t know what to do with us so they want to send us to a psychology. I struggle every day with shock and burning inside. ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
I'm so sorry you are in such pain. My husband is as well. He found greater relief with Lyrica than Neurontin (Gabapentin) but it took a few weeks to feel it's effect. He also gets some relief from prescription lidocaine patches and ointment. He has been recovering since last Sept, so not quite a year yet. I really feel for all who are going through intense pain. Best wishes.
Thank you for replying. How long were you on the Lyrica until you got some relief. Does it take the edge off or does it take most of the pain away?
Thank you,
Larry
Jerimy said:
Sorry Larry didn't see your part about Lyrica. I had some major issues with pain and had great relief with Lyrica/Tramadol. Is there a chance the dosage was too low? Vicodin, Percoset et al had zero impact on pain and major impact on function for me.
Thank you for replying. How long did it take for the Lyrica to start relieving your Burning? How long have you been out of the hospital & how long have you been on the Lyrica. I would like to get an average of how long the burning lasts. It has been two & a half months since my first symptoms of GBS & I have been home from rehab for 4 weeks.
Thank you,
Larry
lisarocks66 said:
I myself am on Lyrica and Tramadol. It works better than anything else I have tried.
Thank you for replying. I thought & was hoping that the burning (nerves regenerating the Myelin Sheath) would only last 2 or 3 months. Has your husband had the burning sensation since September? If he has does his neurologist say it is normal to last so many months?
Thank you,
Larry
S. Anderson said:
I'm so sorry you are in such pain. My husband is as well. He found greater relief with Lyrica than Neurontin (Gabapentin) but it took a few weeks to feel it's effect. He also gets some relief from prescription lidocaine patches and ointment. He has been recovering since last Sept, so not quite a year yet. I really feel for all who are going through intense pain. Best wishes.
Thank you for replying. I only tried Lyrica for 2 days. I will call my neurologist shortly about trying Lyrica again, & what to do about the Neurontin, I am at 3600mgs per day. Do I take both or stop the neuronton (I will see what he says). How long have you had the burning sensation? Do the 2 drugs take away most of the burning? I tried Tramadol 3 times & it made me very sleepy within 3 hours of taking it. The tramadol was 2 times a day,. so it was a 12 hour dose, was yours also 12 hour dose? Did it make you sleepy?
Thank you,
Larry
Jerimy said:
Sorry Larry didn't see your part about Lyrica. I had some major issues with pain and had great relief with Lyrica/Tramadol. Is there a chance the dosage was too low? Vicodin, Percoset et al had zero impact on pain and major impact on function for me.
The Lyrica really started working at about 7 days. The Tramadol dosage may be to high, I split my dosage up and take 4 small doses a day which doesn't impair me at all.
Hi Jerimy: Thank you for that information, I am still waiting for a call back from my neurologist. How long have you been having the burning sensation & using Lyrica. I am out of rehab for 4 weeks and it is two & a half months since the onset of the GBS. I am trying to figure out how long the burning sensation is going to last.
Thank you:
Larry
I also am sorry to hear about your burning, as I have had it for a year, and it seems to be getting worse. I will say that I have had relief from Lodocaine patches, and even better relief from 5% Lidocaine ointment. Call your Doctor and ask for a prescription, I hope it works for you.
The two meds aren't taken at the same time. So my husband had to stop the Neuronton (also known as Gabapentin) and then start the Lyrica. The pain got worse, sad to say, as he weaned off of the one and waited for the other to build up. I am thinking it took a couple weeks maybe. But the pain relief with Lyrica is better (for him - your mileage may vary). The other thing is the Lidocaine ointment - that really helps him. He had to have it custom mixed at a compounding pharmacy and it was prescribed by the Mayo Clinic in Rochester, MN. It does not get rid of the pain, no. It makes it more bearable.
I am so sorry.
Hi: I am still waiting for instructions from my neurologist, phone calls were missed yesterday. When I took the Lyrica for 2 days a couple of weeks ago, I stopped the Neurontin for 2 doses & the pain got worse. I cannot handle any increase in the pain, so I will wait for the doctor's instructions. Is your husband's dosage of the Lyrica 50mgs 3 times a day? How long has he had the burning sensation? Does his neurologist say how long this usually lasts? I cannot get an answer from mine, I am out of rehab for 4 weeks now & it has been two & a half months since the onset of the GBS. Did you have to go to the Mayo Clinic to get the ointment prescription? Sorry for so many questions.
Thank you,
Larry
S. Anderson said:
The two meds aren't taken at the same time. So my husband had to stop the Neuronton (also known as Gabapentin) and then start the Lyrica. The pain got worse, sad to say, as he weaned off of the one and waited for the other to build up. I am thinking it took a couple weeks maybe. But the pain relief with Lyrica is better (for him - your mileage may vary). The other thing is the Lidocaine ointment - that really helps him. He had to have it custom mixed at a compounding pharmacy and it was prescribed by the Mayo Clinic in Rochester, MN. It does not get rid of the pain, no. It makes it more bearable.
I am so sorry.
Hi: I just called my neurologist & I am waiting to hear if he will prescribe the ointment. I will be in touch. How long have you had the burning? I am only home from rehab for 4 weeks & want to know on average how long the burning lasts. Is it your understanding that the burning is caused by the myelin sheath regenerating? How long have you had the burning?
Thank you,
Larry
Bergerhoo said:
I also am sorry to hear about your burning, as I have had it for a year, and it seems to be getting worse. I will say that I have had relief from Lodocaine patches, and even better relief from 5% Lidocaine ointment. Call your Doctor and ask for a prescription, I hope it works for you.
When I switched from gabapentin to Lyrica, it was a very difficult 2 weeks pain wise. You can’t take the 2 together, but it felt like the gabapentin stopped working right away, and the lyrica took 2 weeks to kick in. The lidocaine ointment can be obtained at any pharmacy, but needs a prescription. It really helps me.
As for how long it lasts, everyone is different, but healing is slow. The when responding to that question of healing time, the Mayo drs said that it hadn’t even been a year yet!
I know it’s frustrating not having clear answers, but with neuropathy there are none as I am to understand it; everybody heals differently.
I was prescribed warm water therapy which was very helpful. Hot tubs bring me relief.
I hope you get relief soon, no matter the source. You’re in my thoughts and prayers.
Larry, Bergerhoo is my husband so he's got firsthand info for you. When we went to Mayo they prescribed a lidocaine compounded cream - had to go to a special pharmacy for it. Prior to that his neuro had prescribed lidocaine patches, avail from any pharmacy. But what he says helps the most is just a plain lidocaine ointment, prescribed by your dr, avail at any pharmacy. (not the over the counter stuff, this is strong) As to your other question about dosage of lyrica, I know he's on the max amt.
We were told that he needs to learn how to live w/pain. This doesn't mean that it won't improve but that it could take a very long time. He was diagnosed in early Sept last year so probably got GBS in late Aug. It is frustrating, I know. There doesn't seem to be a whole lot of info out there. The Mayo doctors did say he had Small Fiber Neuropathy in addition to the GBS because (they said) GBS mainly causes weakness not this much pain. It's hard not having a lot of information, isn't it? But you aren't alone. And like David said, water therapy helps. He's involved in Courage Center in the Twin Cities where there is a pain treatment program. He isn't doing the full program, just the water therapy. Tai Chi might also help, other Eastern arts, to learn to put your focus elsewhere. Good luck Larry, we are praying for you too.
Come October, it will be my 4 year anniversary. I still suffer from the pain and burning in my legs. Although not as bad as it was. I’m not saying that this is the way it is, just the way it is for me. I have found, for me anyway, that stretching and eating healthy helps ease some of the symptoms. Everyone heals differently and no two cases are alike. So please do not give up hope. I’m on gabapentin, 1200 mg. a day. Going to my neuro on Wednesday to see about lyrica, Botox, and marinol. All have proven relief for neuropathy, but it varies between patients. Praying that everyone finds some kind of relief.