I just started 2 hour infusion I have had one treatment ivig. So far nothing has helped . I tried alph lipoic ,nothing.
has anyone tried anything that relieves the pain?
I’m taking a four hour infusion of IVIG every other month along with immunotherapy for a blood cancer. The treatment works but I haven’t felt any improvement of my neuropathy.
Hi @solobeee1
My Ivig which is for something else, took at least six months to make a difference. It has not cured my neuropathy, but it is not worse. I have done light therapy, Shockwave treatments , diet, exercise, and not sleeping on my back. My neuropathy has improved, I have absolutely great days, and then a not so great days. To me the Shockwave has been great, my very wet Berner just sat on my bare feet, not so great, but my fault.
JFN
I just started 2 hour infusion I have had one treatment ivig. So far nothing has helped . I tried alph lipoic ,nothing.
has anyone tried anything that relieves the pain?
I have gotten the most leverage out of PT (as long as it’s with someone who understands chronic pain). My PTs use a “pain neuroscience” approach to influence how the brain perceives pain. A Mayo PT recommended the app, Curable, which has a subscription but there’s a free trial or books that cover similar material.
In PT, we also used an approached called Graded Motor Imagery (GMI), beginning with right/left discrimination with the app, Recognise. The app annoyingly has a cost (but it’s a one-time cost), and you can look up GMI to learn more about it. It’s an approach used for neurological conditions such as CRPS, phantom limb pain or stroke, but it helped me, we think because when you have pain for a long time, it changes how your brain relates to the painful body parts. I used the Recognise app for feet and knee because my neuropathy is mainly in my lower body.
I like the above because none are medications and all are evidence-based.
Hi @solobeee1
My Ivig which is for something else, took at least six months to make a difference. It has not cured my neuropathy, but it is not worse. I have done light therapy, Shockwave treatments , diet, exercise, and not sleeping on my back. My neuropathy has improved, I have absolutely great days, and then a not so great days. To me the Shockwave has been great, my very wet Berner just sat on my bare feet, not so great, but my fault.
JFN
Not sleeping on your back? I started sleeping on my back when my hands started going numb and tingly. I was always a side sleeper. How did that make a difference?
Sorry to hear about the side effects but thanks for keeping us posted.
Do they have you taking anything prophylactically like Benadryl to help with the reactions? Then again, that might cause the drowsiness.
When my NP and I discussed it, she said slowing the infusion rate could help minimize headaches but then that would make it take even longer which you may not want.
Not sleeping on your back? I started sleeping on my back when my hands started going numb and tingly. I was always a side sleeper. How did that make a difference?
I was told that sleeping on my back compressed the nerves in my heels. I also here not to side sleep, for my neck. Which is worse? I will have a Shockwave for my feet this week! I do have issues with my neck, working on that too, strengthening the core.
I was told that sleeping on my back compressed the nerves in my heels. I also here not to side sleep, for my neck. Which is worse? I will have a Shockwave for my feet this week! I do have issues with my neck, working on that too, strengthening the core.
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I just started 2 hour infusion I have had one treatment ivig. So far nothing has helped . I tried alph lipoic ,nothing.
has anyone tried anything that relieves the pain?
Hi @solobeee1
My Ivig which is for something else, took at least six months to make a difference. It has not cured my neuropathy, but it is not worse. I have done light therapy, Shockwave treatments , diet, exercise, and not sleeping on my back. My neuropathy has improved, I have absolutely great days, and then a not so great days. To me the Shockwave has been great, my very wet Berner just sat on my bare feet, not so great, but my fault.
JFN
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I have gotten the most leverage out of PT (as long as it’s with someone who understands chronic pain). My PTs use a “pain neuroscience” approach to influence how the brain perceives pain. A Mayo PT recommended the app, Curable, which has a subscription but there’s a free trial or books that cover similar material.
Their blog explains it better: https://www.curablehealth.com/blog/chronic-pain-more-than-mechanical
In PT, we also used an approached called Graded Motor Imagery (GMI), beginning with right/left discrimination with the app, Recognise. The app annoyingly has a cost (but it’s a one-time cost), and you can look up GMI to learn more about it. It’s an approach used for neurological conditions such as CRPS, phantom limb pain or stroke, but it helped me, we think because when you have pain for a long time, it changes how your brain relates to the painful body parts. I used the Recognise app for feet and knee because my neuropathy is mainly in my lower body.
I like the above because none are medications and all are evidence-based.
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1 ReactionThank you so much-will print this and keep it to look into!
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1 ReactionHello, So far my only problems are a really bad headache and my mouth breaking out. It makes me sleepy.
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1 ReactionNot sleeping on your back? I started sleeping on my back when my hands started going numb and tingly. I was always a side sleeper. How did that make a difference?
Sorry to hear about the side effects but thanks for keeping us posted.
Do they have you taking anything prophylactically like Benadryl to help with the reactions? Then again, that might cause the drowsiness.
When my NP and I discussed it, she said slowing the infusion rate could help minimize headaches but then that would make it take even longer which you may not want.
Hi @jan64
I was told that sleeping on my back compressed the nerves in my heels. I also here not to side sleep, for my neck. Which is worse? I will have a Shockwave for my feet this week! I do have issues with my neck, working on that too, strengthening the core.
Just hearing about Shockwave-what can you tell me about it? Thanks!!