Living with Neuropathy - Welcome to the group

bustrbrwn, my husband has sciatica and finds the only thing that helps is daily stretching and physical therapy. He has had 2 previous back surgeries and the sciatica never completely goes away but is much less severe and often. An MFR specialist could possibly help also. Helen

Good morning, @helenicola. I am very interested in your husband and his experiences with sciatica. I agree with your conclusions. I, too have had two back surgeries and now turn to my MFR therapist to keep me at reasonable levels of discomfort.

I also have a small rubber top like accessory which I lie on a couple of times a day. You may also be able to sit in a comfy chair and position it appropriately. Takes the pain away for a couple of hours. And I too, do not want any more surgeries or replacements. Because of my SFN (small fiber neuropathy), it is difficult to imagine adding post-surgery pain and rehab requirements. Sometimes surgery can set the rest of you back a bit. Another shared decision to be made with your clinicians and providers.

May you have contentment and ease in your day.
Chris

@bustrbrwn22 Jen, I get the hammer pounding on the bottom of my feet. Perfect description of nerve pain. Too perfect. Terrible. Only thing that works for me is Kratom. I know you need too much of it, and wind up with bad side effects. Really a shame. Is the myofascial stuff doing anything at all to help? This is all too much. LoriRenee1

@bustrbrwn22 I looked it up, Jen, and it's actually a sulfa drug that treats nerve pain as well. I know that I had a bad reaction to sulfa very long ago, so I could never take it. I have never heard a word about it on this forum. If you take it, let us know how it works. Lori

Good morning @lorirenee1, First of all, I want to tell you that I notice your consistent and very positive support of other members.....not a long tirade....not some automatic reply.......just a genuine acknowledgment of their issues, in words that show compassion, a calm acceptance of self and a respectful focus on what is true for you.

I also note that you have had bad reactions to sulfa.....some time ago. I was given sulfa by a Rheumatologist 20 years ago. I ended up rolling on the floor because of the itching and pain. I ended up in ER where more of my body parts were complaining about the sulfa. I wonder how long one should wait before trying it again if ever.

May you be pain-free and at peace today.
Chris

@bustrbrwn22 @lorirenee1 and others - here is some information from 2015 on Zonisamide but it doesn't mention that it is very effective for pain relief. I would run any alternative treatment by your doctor or a pharmacist to make sure there are no interactions or side effects with medications you are already taking...just my two cents.

Zonisamide for neuropathic pain in adults - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6485502/

Hi Chris, my husband developed sciatica after his 2nd back surgery. It was never that bad, just would show up randomly for a few minutes and disappear. He decided to see a P/T to try to get rid if it permanently and he feels it has improved but is not that big of a problem compared to the pain he was experiencing prior to his surgery. I’fe seen a John Barns- trained MFR therapist twice for my neck and hip; he is excellent and is the only one to have helped with my neck pain, I will see him at least once again but insurance doesn't cover it and it’s costly. I’ve also been doing some MFR exercises at home and am waiting for John Barns’ book which I ordered from Amazon; the science is very interesting. Stay well, Helen

Hey there Helen, @helennicola. I am so glad you have had good results with your MFR sessions. I haven't revealed this yet.....but I am realizing that my quality of life is deteriorating rather rapidly. Even with medical cannabis for pain control, I find I need more to control the discomfort so that I can jump into living. I never quite got to the very rich THC at 100% that you use for sleep. Even with the 1:1 and my 1:3 tincture, I am spending more time resting and even sleeping.

Only on MFR days is the pain relieved enough for me to sit and play cribbage or take a ride in the countryside. And I know the pandemic fatigue and restrictions have taken their toll. Here is what I want to do.......increase my MFR to 2 sessions a week and reduce the amount of cannabis so I can stay awake until bedtime.

The issue of course is the cost. Medicare does cover bodywork done by OT's when there is a back to work objective. And it follows that supplements will follow the policies of Medicare. And if there is no insurance then here's the plan.......I am completing my Tymlos for osteoporosis in December and that is and has been quite costly. I want to earmark those $$$ to a 2nd MFR session.

Then...I am working on my Santa letter. If you add up all the children, grandchildren, and other family members.....who probably are wondering.....what in the world do we get TuTu?

There could be hope.

I am glad your husband has been able to see improvement in his sciatica. At least...we know where to send these husbands when they need help. Do you still have a cannabis regimen? Anything new to report?

May you have joy today......
Chris

Hi again Chris, I’m so sorry to hear that you are suffering, pain is insidious. I’m glad you have lots of family near, that is so important. I must have mislead you about my ThcCBD-I did purchase a tincture and a salve while in Ca. but have not yet used either. The gabapentin I take at bed continues to put me to sleep luckily, occasionally I have a night when I can’t get to sleep but not from pain. I have hesitated to try the ThcCBD also because the non-thc CBD i have used in the past brought back my dizziness so I’m afraid to try the stronger until I really need it. I hope you enjoy writing your letters to Santa, he should enjoy reading them as much as I enjoy your posts. Best always, Helen

Dear Chris,
I read about your reaction to sulfa and I'm very sorry you had to go through that.

I worked in healthcare for 20 years and also had a sulfa rash myself although nothing like you did.

I'm almost positive this was a legitimate allergic reaction and that you should not have this drug again. I think the doctors probably flagged your chart as having an allergy to this drug. They should have.

If I were you I would call the pharmacist at your doctor's office or clinic, and explain exactly what happened to you when you were given the drug in the emergency room. They will either flag your chart as having a sulfa allergy and/or talk to your doctor about it.

Once it is in your chart at your doctor's office, they should also make sure it appears in the hospital chart where this reaction happen to you. This step really isn't necessary because the medical institutions have access to patients charts now online but in my experience they are not always updated so in that case it would be a good idea just to be sure because this was such a huge reaction.

Take good care of yourself and I wish you all the very best!

Many blessings, Sunnyflower