I am a fellow sufferer of non-diabetic PN. 300mg pf Pregabalin + 300mg of Oxcarbazepine helps take the edge off. Another helpful hint is doing controlled breathing in a darkened room or in bed. It helps calm the system.
Breath in deeply for count of 7 , hold it for a count of 5 and then breath out slowly. Do this multiple times until you feel the calming affect.
Lastly, I feel it very important to j=keep moving as much as you can tolerate. Otherwise, you've resigned yourself as allowing PN to rule your life.
Hi, I too have pin and have the burning, tingling pain somewhat under control with pregabalin, two before bed, no pain at all and ok all night, then two in the morning. However, does anyone else have terrible pain in the soles of your feet when walking more than a few steps. It literally stops me dead, I can walk for a bit, then stop, pain subsides somewhat, but severe when I resume walking. Also, legs from the knee down feel like they are made of cement or something heavy, I do have osteoarthritis in knees, but doctors cannot make a connection, any thoughts?? Thank you Terry
I am paying out of pocket too!! Balance is terrible-am going to work on that. Let's keep in touch as I am being scheduled for the implant also-pain specialist likes using Boston Scientific. My friend, who was a nurse, is really frightened for me to do it because if it fails, there can be bad consequences to live with forever; but, I don't see but two choices, live with the pain or take the risk. Are you taking gabapentin or progabalin and what mg and amount per day and when-I really am having trouble with brain fog if I take it in the morning.
The first medication my pain doctor prescribed was Gabapentin but right away I felt depressed. He replaced it with Pregabalin 100 mg. 4 times a day. Then in April 2022 I fell (not related to meds or even to neuropathy), fractured my hip, and since then have been taking 100mg. Pregabalin with 50mg. Tramadol. This has been a very good combination (no side effects). He actually prescribed the Tramadol 4 times a day but I don't find the 4th dose necessary. Last summer I developed RLS (restless leg syndrome) and am also taking Ropinirole HCL 0.5mg. at night - it worked from the very first night. I try to take the Pregabalin/Tramadol combination about 6 hours apart - so, morning, late afternoon, and night. The device my pain doctor would implant is Abbott's ProclaimXR. The reason your nurse friend shared with you is precisely why I am reluctantly proceeding. (One can back out at any time). Since it doesn't improve my imbalance, I'm not sure if the outcome is worth the risks. My only problem with the Pregabalin is that it is still expensive even after Medicare pays into it.
Neuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.
I have not seen a neurologist yet. Will be seeing one soon. From there I have to take a test. I believe it is a Test for nerves damages for all over my body I think. Then I have a appointment with an neurologist afterwards. Its been crazy trying to seek answers for what I am going through. No one is listening to me.
I have periphera l neuropathy too-I see a pt specialiizing in neuropathy and have learned 5 exercises to do 3 x a day and take Effexor half pills every 12 hours-it will be a struggle all our lives but wont kill us my dr says-hope this helps you Mike
I have periphera l neuropathy too-I see a pt specialiizing in neuropathy and have learned 5 exercises to do 3 x a day and take Effexor half pills every 12 hours-it will be a struggle all our lives but wont kill us my dr says-hope this helps you Mike
I have neuropathy (numbness only no tingling or pain) resulting from monoclonal gammopathy of undetermined significance. Does anyone else have this? Does anyone know of treatments that will help? Thank you.
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What time do you take the Pregabalin? How much in the morning at bedtime etc. do you take any in the morning. Does it make you sleepy?nauseated? Etc
I take Pregabalin together with the Oxcarabzepine in the AM and then again in the evening. I tolerate it very well without side effects.
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1 ReactionHi, I too have pin and have the burning, tingling pain somewhat under control with pregabalin, two before bed, no pain at all and ok all night, then two in the morning. However, does anyone else have terrible pain in the soles of your feet when walking more than a few steps. It literally stops me dead, I can walk for a bit, then stop, pain subsides somewhat, but severe when I resume walking. Also, legs from the knee down feel like they are made of cement or something heavy, I do have osteoarthritis in knees, but doctors cannot make a connection, any thoughts?? Thank you Terry
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2 ReactionsThe first medication my pain doctor prescribed was Gabapentin but right away I felt depressed. He replaced it with Pregabalin 100 mg. 4 times a day. Then in April 2022 I fell (not related to meds or even to neuropathy), fractured my hip, and since then have been taking 100mg. Pregabalin with 50mg. Tramadol. This has been a very good combination (no side effects). He actually prescribed the Tramadol 4 times a day but I don't find the 4th dose necessary. Last summer I developed RLS (restless leg syndrome) and am also taking Ropinirole HCL 0.5mg. at night - it worked from the very first night. I try to take the Pregabalin/Tramadol combination about 6 hours apart - so, morning, late afternoon, and night. The device my pain doctor would implant is Abbott's ProclaimXR. The reason your nurse friend shared with you is precisely why I am reluctantly proceeding. (One can back out at any time). Since it doesn't improve my imbalance, I'm not sure if the outcome is worth the risks. My only problem with the Pregabalin is that it is still expensive even after Medicare pays into it.
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1 ReactionWhat is iVIG? I have been seeing a neurologist but she put me on pregabelin which has proved to be not very effective.
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1 ReactionI have periphera l neuropathy too-I see a pt specialiizing in neuropathy and have learned 5 exercises to do 3 x a day and take Effexor half pills every 12 hours-it will be a struggle all our lives but wont kill us my dr says-hope this helps you Mike
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1 ReactionHi @bryce49, There is another discussion on your question here:
-- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
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2 ReactionsThank you so much
Life is like a Box of Chocolate
your very welcome-Mike Storman from e sac ca
I have neuropathy (numbness only no tingling or pain) resulting from monoclonal gammopathy of undetermined significance. Does anyone else have this? Does anyone know of treatments that will help? Thank you.
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