My neurologist is weaning me off the gabapentin (I was at 3300mgs a day) & I started the Lyrica today (50mg, 3x a day), so I am taking both at the same time. This is the opposite of what you were told, this scares me. I am picking up the lidocain later today, thank you. I was under the impression that the burning (nerve regeneration) lasted 2 to 3 months for the average GBS case, maybe I heard incorrectly or as you said, everyone is different. What is the amount of Lyrica you are taking, What is the max if you know?
Thank you,
Larry
Bergerhoo said:
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.
Hi: I am only 4 weeks out of rehab & I am doing fabulous except for the burning. I am totally independent. I am sorry that your pain has lasted so long. I was up to 3300mgs a day of gabapentin & had no relief & added the Lyrice today, waiting to see what happens.
das4u said:
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.
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Hi: I am glad it worked for you. I tried 5% lidocaine today on my arms & it did nothing. I really cannot see using a cream on my whole body. When it gets very bad I take Vicadin (hydrocodone) & it gives me relief for a few hours. I am in the process of reducing the gabapentin & using Lyrica instead. I am hoping the Lyrica will help. How long did you have the burning in your back?How long have you had GBS? I am trying to figure out when my burning will end.
Grammy said:
Hi Larry g,
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Hi: I am glad it worked for you. I tried 5% lidocaine today on my arms & it did nothing. I really cannot see using a cream on my whole body. When it gets very bad I take Vicadin (hydrocodone) & it gives me relief for a few hours. I am in the process of reducing the gabapentin & using Lyrica instead. I am hoping the Lyrica will help. How long did you have the burning in your back?How long have you had GBS? I am trying to figure out when my burning will end.
Grammy said:
Hi Larry g,
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Grammy
Hi Larry, I agree that it is not feasible to use the cream on your whole body, but it cured me of my terrible burning. My heart goes out to you. I was diagnosed with GBS in November 2012. I only had the burning for about 4-5 months until they tried the prescription for the cream.
Hi: At some point after the 5 months did the burning stop without the use of the cream?
Sincerely,
Larry
larry g said:
Hi: I am glad it worked for you. I tried 5% lidocaine today on my arms & it did nothing. I really cannot see using a cream on my whole body. When it gets very bad I take Vicadin (hydrocodone) & it gives me relief for a few hours. I am in the process of reducing the gabapentin & using Lyrica instead. I am hoping the Lyrica will help. How long did you have the burning in your back?How long have you had GBS? I am trying to figure out when my burning will end.
Grammy said:
Hi Larry g,
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Grammy
Hi Larry, I agree that it is not feasible to use the cream on your whole body, but it cured me of my terrible burning. My heart goes out to you. I was diagnosed with GBS in November 2012. I only had the burning for about 4-5 months until they tried the prescription for the cream.
Larry, keep with the cream if you can. I remember it not working right away for David but now it makes a difference. Also remember that you are withdrawing from the Neurontin so your pain might be greater because of that. Sadly it seems to take a couple weeks for the Lyrica to work.
Larry, Yes, the cream completely stopped my burning - that is why I called it my "Miracle Cream." The compounded cream that was prescribed for me had Lidocaine in it, but I think it may have been the Ketamine in it that helped me so much. Of course, everyone is different and what works for some may not work for another. Also, I only had the burning in my back - not my entire body. I hope and pray that you find something that will bring you relief. Grammy
larry g said:
Grammy said:
Hi: At some point after the 5 months did the burning stop without the use of the cream?
Sincerely,
Larry
larry g said:
Hi: I am glad it worked for you. I tried 5% lidocaine today on my arms & it did nothing. I really cannot see using a cream on my whole body. When it gets very bad I take Vicadin (hydrocodone) & it gives me relief for a few hours. I am in the process of reducing the gabapentin & using Lyrica instead. I am hoping the Lyrica will help. How long did you have the burning in your back?How long have you had GBS? I am trying to figure out when my burning will end.
Grammy said:
Hi Larry g,
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Grammy
Hi Larry, I agree that it is not feasible to use the cream on your whole body, but it cured me of my terrible burning. My heart goes out to you. I was diagnosed with GBS in November 2012. I only had the burning for about 4-5 months until they tried the prescription for the cream.
I am withdrawing slowly and starting the lyrica at 300mg a day, and so far the pain has not gotten worse. Does David still have pain? If not, how long did it last. If he still has the pain, how long has it been?
S. Anderson said:
Larry, keep with the cream if you can. I remember it not working right away for David but now it makes a difference. Also remember that you are withdrawing from the Neurontin so your pain might be greater because of that. Sadly it seems to take a couple weeks for the Lyrica to work.
Thanks, I am just trying to get a ball park figure on the average length of time that people with GBS have the burning. I know that everyone is different, but it would be helpful to hear from several people about the length of time their cases lasted, but I am not having very much success.
Grammy said:
Larry, Yes, the cream completely stopped my burning - that is why I called it my "Miracle Cream." The compounded cream that was prescribed for me had Lidocaine in it, but I think it may have been the Ketamine in it that helped me so much. Of course, everyone is different and what works for some may not work for another. Also, I only had the burning in my back - not my entire body. I hope and pray that you find something that will bring you relief. Grammy
larry g said:
Grammy said:
Hi: At some point after the 5 months did the burning stop without the use of the cream?
Sincerely,
Larry
larry g said:
Hi: I am glad it worked for you. I tried 5% lidocaine today on my arms & it did nothing. I really cannot see using a cream on my whole body. When it gets very bad I take Vicadin (hydrocodone) & it gives me relief for a few hours. I am in the process of reducing the gabapentin & using Lyrica instead. I am hoping the Lyrica will help. How long did you have the burning in your back?How long have you had GBS? I am trying to figure out when my burning will end.
Grammy said:
Hi Larry g,
I had a terrible burning sensation all across my back (I was not as unfortunate as you to have it in my whole body) when I was recuperating from GBS. I could not sit with my back against a chair, had a difficult time wearing clothes, and could not let anyone hug me. It was as if I had shingles in my back. After being unsuccessful with cortisone shots, my pain specialist had a compounding pharmacy make a cream for me. This is what it says on the label:
BB1-Ketamine 10% Diclofenac 3% Baclofen 2% Lidocaine 2% cream. The instructions said: Apply 3 pumps (1 pump=1 gram) to painful areas 3 times daily. Rub in well.
I went through 1 container and only used a part of the second container before a felt tremendous relief. In fact, I called it my miracle cream. Every one is different, however, and it may not be helpful to you, but perhaps you can ask your Dr. about it. I think it would certainly be worth a try.
Grammy
Hi Larry, I agree that it is not feasible to use the cream on your whole body, but it cured me of my terrible burning. My heart goes out to you. I was diagnosed with GBS in November 2012. I only had the burning for about 4-5 months until they tried the prescription for the cream.