SEVERE neuropathy in both feet for past 2 years. I have tried COUNTLESS Rx (Gabapentin, Pregabalin, Cymbalta, weekly injections (now discontinued) of marcaine into my popliteal nerves, a clinical trial in 2018 with Ketamine and Lidocaine and numerous narcotics - currently on only suboxone for pain) and other therapies all now discontinued (holistic meds, chiropractor, acupuncture, laser, massage, foot tens machine, surgery - nerves exposed in lower back and electric stimulation applied directly to partially disconnect signals between brain and feet, etc...) ALL OF WHICH HAS FAILED. I had a neuromodulator device implanted in Dec/19 and it provides minimal relief at best. Is there anything else out there that works for others? DESPERATE for some relief from this mind-crushing pain. Many thanks.
SEVERE NEUROPATHY BOTH FEET - Other Tre... - Neuropathy Support
SEVERE NEUROPATHY BOTH FEET - Other Treatment Options?
Oh dear, my heart goes out to you Dwight. I sincerely hope somebody has some answers to help you. X
Thank you so much. I appreciate the response
Hi again, Out of interest did you know Statins and some anti depressants can cause peripheral neuropathy? Might be useful to be aware of this if you are taking any of these. There are alternatives so discuss with your doctor if you are.
Hi white have you tried calmar therapy with Dr D amato in Bonita Springs?
There is a clinic called the spero clinic in Arkansas where many people get healed. They specialise in nerve pain specifically. It's a 3-month programme about $60,000 but people swear by it.
I’m Canadian so with this Covid situation I couldn’t get there even if I had the resources to do so. Ironically I was a direct of pharmaceutical research on rare diseases three years ago when I had to stop working as this condition has robbed me of everything I’ve ever worked for including my career, my dream home, my cottage and most of the contents of all of the above. I’m currently trying to survive on a disability pension. What I wouldn’t give to have the opportunity to go to a clinic like the one you mentioned in the desperate hope of getting some sort of relief. I committed my entire 24 year working career to saving and improving the lives of countless others yet it seems I’m powerless to do anything for myself.
I am exactly where you are except I have been fighting it getting worse every year for 15 years. I am now trying to find a doctor for double voluntary amputation.
I requested amputation from my neurologist and he told me that would be tantamount to medical malpractice. In response I asked him what he calls doing nothing. He explained that there is a chance that amputation would not solve the issue due to phantom pain. I responded by saying that what I’m hearing is there is a chance that it wouldn’t and therefore to me amputation as drastic as it is would be worth trying. Anything is better than feeling like I’m standing in boiling water. Bottom line, I tried and failed.
I've requested amputation as well with no Joy. I already outlined it above. Research the growing market of POT products. The righjt boby stome varient for you will
1 Kill Pain and some other PN symptoms Better than Pre-Gabllin or T3's
2 Non-addictive
3 Enhances the effects of Big Pharma Pain Killers
4 Cost Effective
5 Effective Sleep Aid that usually provides entertaining dreams as a bonus.
Hi Dwight, I have a lot of empathy for you,I am in a similar situation my self with very severe PN,I Was assessed as needing a wheelchair by the NHS and I would recommend getting assessed to anyone who is extremely struggling.
You seem like you have built up a very strong mindset in order to keep putting up with this Nightmare ,and I do hope people listen to you and are empathetic and sympathetic.
Have you tried prescribed Axsain chilli cream for a little respite? It works for some but not others,like TENS.
I have Non verbal classic autism,mild intellectual disability and epilepsy and because I can’t physically show pain or make all the same noises as people do,they assume I can’t have pain at all and I have been referred to as lazy ,trying to get out of walking and not in need of a wheelchair by incredibly judgemental support staff in my care facility-they aren’t trained in needs like this and I shoud never have been placed here as it’s not for people like me.
My wheelchair assessor who has known me for years and my long time neurologist know different,and he woud love to give me the higher level of opiates but with having severe epilepsy these drugs can trigger seizures.
I am on amytriptaline,pregabalin,maximum codeine and paracetamol ,naproxen,And axsain capsaicin cream,I see this cream more as a respite From hell than quality of life changing.
On the positive side with each year they come up with something new to try whether it’s technology or drugs, i do hope they come up with something useful for you as you are being hit with hell,it really is a brutal illness,but remember there are always people going through similar things-if you are on Facebook there is a good main PN group.
Best wishes!
My heart goes out to you. I have tried capsaicin and countless other creams including custom compounded creams containing several narcotics at a cost of around $400 all of which has failed. I do however appreciate the recommendations.
Hi Dwight, try homeopathy pills, I take these and hve some pain relief, I tried taking the mentioned drugs but they gave bad side effects like blurred vision, felt like my body being electrocuted esp at night so stopped meds. And soaking feet in cold water wn thy get burning hot, applying gehwol foot cream also helps me with sleeping at night
Hi Dwight67 you really have tried to cope and control this awful condition.
I wish there was something we could use. My feet are awful and walking is impossible out side on my own. My hands shake as well and are sore and stiff. I really hope you have or find some kind of relief.wish you well and kind thoughts.
Quit drinking (I hope you drink because often its the elephant in the room) its one of the issues most often associated with successful treatments. Supplements for Diet, Vitamins and Amino Acids are important. I have had all the experiences you list and eliminating Drinking has been the 1st, step to visible rehabilitation that I found in 3 years of pain killers and anti depressants.
I don't drink, never have. What supplements and amino acids?
Talk to a Health Food expert. Branch Chain Amino Acids are necessary to protect bones, joints and tendons in your feet that PN destabilizes. Others Vitamin A for bones, B6 and B12 (old story), testosterone producing supplements and CoQ10 for heart Artery maintenance is a start.
Hello ! I am so sorry about your pain.
I have full body burning too.
I am in the U.S. and thinking about trying medical marijuana. It supposed to be great against neuropathy.
I wish you less pain and less pain and more solutions for eradicating pain for all of us.
Hopinggh
Hi ! Hopinggh here again after 3 years since the above post . (I've had neuropathy for countless years) tried medical Marijuana a few years ago. Didn't help . Lately, neuropathy worse. Waking up in stronger pain. On my feet much more and hope I'm not forcing progression of this disease.
Every day, a test of endurance.
Good luck to all !
Unfortunately nothing has worked for me so far. Pharmaceutical treatments that have been tried and failed were gabapentin, pre-Gabalin, Cymbalta, Oxy, morphine (gave me seizures), Marijuana with high CBD content. Currently taking only a fourth line narcotic called Suboxone. Non-pharmaceutical therapies have also failed. Feels like I’m standing in boiling water ankles deep and so far nothing provides any relief. Feeling a bit hopeless unfortunately.
Have you tried all the vitamins that various responders to you query suggested? I would go the vitamin and diet change route before anything else. Best wishes for some success.
Hello.!
Thank you for your message. I'm so, so sorry to hear that.
I started with pain 30+ years ago. The last five years are so unbearable . The nagging pain started to really bother me 10 years ago. It is consuming my entire life at this point. I keep laying down after every single thing i do. My feet are the worst also. This is such terrible agony and i wish there will soon be something for us.
When that day comes, it will be a miracle!
Maybe we need marijuana with higher THC ratio? Try other formulas of marijuana?
If i find anything worthwhile, I will definitely post about relief.
I hope you are sleeping ok. Im taking Cbd , .5 mL full.spectrum with P.E.A., two 400 mgs a little while before sleeping. I try to not walk around much before sleeping so my feet are not so enraged to keep me up longer. Its a constant struggle.
Im telling myself now to think of the pain like breathing. When it stops, its all over, accept it like breathing for your life...
Miracles still happen. It can still happen.
Have you tried far infra red light therapy ? I bought a small lamp and only used it once. I will go back to it and give it a better chance. There is very good info on it online.
Take care.
Hanging on too,
Hopinggh
Hi Dwight
Sorry for the suffer you are passing.
My little suggest would be:
1 Do not eat fried food!!!!specially food fried on very little oil. Preferable avoid anything fried.
2 Try to limit animal food. Specially chicken and cow.
I have myself cidp poly neuropathy for many years 11 years.
Many years suffered from extreme pain in the feet’s. What helped me was first massage and diets as mentioned.
Sincerely
Hi Dwight
Try Methadone it’s a life saver for people with sfn
What’s your cause? ldn can help certain conditions
Um... methadone is addictive. I have a friend who was addicted to heroin. Then he went on methadone. He became addicted to methadone.
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