Hello Charlotte @charlie807, Welcome to Connect. You are right, it is scary and difficult when you are in pain and nothing seems to help. Unrelenting pain, cold and hot feet along with many other awful symptoms is something that a lot of Connect members in the Neuropathy Support Group can relate to and know what you are feeling. The best thing you can do to help yourself is to learn as much as you can about your condition and what treatments are available that might provide some relief. The following neuropathy sites are really helpful for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
It sounds like your neuropathy started following a surgery? Do you mind sharing a little more about your diagnosis?
In 2010 I had surgery on L5-S1 and right leg was numb after surgery, not before. Pain still there sent me too PT for a few months nothing helped at all. Then I started back to pain clinic for the same relief I had , had prior to surgery and none of the injections helped either. After 2 years my right leg still numb, pain still bad I changed doctors. Day 1 the new doctor in 2013 told me that the screws were on my nerves chewing the nerve up and I needed surgery to repair L5-S1 revive , so in Jan 2014 almost to the day I had my new surgery. I learned from the new doctor that if a patient wakes up with a numb leg after surgery that wasn't numb before they should have done surgery right away to fix. And no I didn't sue, I'm still asking myself why I didn't. I'm still in a great deal of back pain and the foot pain is off the charts. I take pain pills mostly for back. I take Lyrica and cymbalta for feet also pain pills I also get RAN injections and I have a pain stimulate in my back. And still have pain. Since 2010 I've tried a great deal of things acupuncture for feet, shots of vit 12into my feet ouch I tried creams and lotions holistic doctors. I currently see a neurologist that also has the same condition and he is most worried about my feet numbness. Charlotte
In 2010 I had surgery on L5-S1 and right leg was numb after surgery, not before. Pain still there sent me too PT for a few months nothing helped at all. Then I started back to pain clinic for the same relief I had , had prior to surgery and none of the injections helped either. After 2 years my right leg still numb, pain still bad I changed doctors. Day 1 the new doctor in 2013 told me that the screws were on my nerves chewing the nerve up and I needed surgery to repair L5-S1 revive , so in Jan 2014 almost to the day I had my new surgery. I learned from the new doctor that if a patient wakes up with a numb leg after surgery that wasn't numb before they should have done surgery right away to fix. And no I didn't sue, I'm still asking myself why I didn't. I'm still in a great deal of back pain and the foot pain is off the charts. I take pain pills mostly for back. I take Lyrica and cymbalta for feet also pain pills I also get RAN injections and I have a pain stimulate in my back. And still have pain. Since 2010 I've tried a great deal of things acupuncture for feet, shots of vit 12into my feet ouch I tried creams and lotions holistic doctors. I currently see a neurologist that also has the same condition and he is most worried about my feet numbness. Charlotte
Welcome @teddyjoe, I have thought about one of the near infrared therapy saunas to see if it would help but I didn't get one, mostly due to cost. There are a couple of discussions you might find helpful.
This clinical trial was terminated due to unable to enroll enough patients - Near Infrared Light for the Treatment of Painful Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT00125268.
You can search for other clinical trials here - https://clinicaltrials.gov/. Can you share what LED treatment you were reading about?
I went to a chiropractor,turns out he in peddling LED red light and some pills for a little over $4,000 You can google led for for nephropathy.most places talk about red led. One place mention blue. Some chiropractors are selling acupuncture. I have never heard sauna . All are vague about results. I regret that I didn't keep a list of web-sights that I visited.
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Good evening @charlie807, Welcome to Connect. It appears that you are coming to this group with lots of experiences to share. And that's what we try to do well here........share! You have a great start and I am anxious to learn more about your condition.
However, right now, the message at the top of my list for you is about MFR, myofascial release therapy. There is simply no way I could hold on to exist without my MFR sessions every week. I was diagnosed with small fiber neuropathy (SFN) about 9 or 10 years ago. The journey can be a bit rugged. I will share a Connect link with you as an introduction. And by the way.....did @johnbishop tell you why he doesn't use MFR. That is because he has no pain with his form of SFN (small fiber neuropathy).
@jenniferhunter will undoubtedly be looking to greet you. You can surprise her by having already visited her page in Connect about MFR. Since it was posted, a lot of folks have added to her comments. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
When you say that your foot pain is off the charts....I actually know what you mean. In addition to the pain, the bottoms of my feet feel like leather. This started with a few toes on one foot. And, eventually the other foot. Now it seems like the pain in each foot is in a race to get to my knee. Actually, at this point, I have to have the MFR therapists work on my feet twice a week just so I can drive myself to therapy.
Please let me have some feedback after you have had a chance to absorb our Connect welcomes.
May you be free of suffering and the causes of suffering.
Chris
Hi my name is Jerrilyn and I have non disabilities neuropathy and am in a lot of pain sometimes in my legs and feet I’m on gabapentin 600mg 2x daily sometimes it helps and sometimes it doesn’t I would like to know what other are doing to help with the pain if you would like to share I’m interested ❤️🌼
Hi my name is Jerrilyn and I have non disabilities neuropathy and am in a lot of pain sometimes in my legs and feet I’m on gabapentin 600mg 2x daily sometimes it helps and sometimes it doesn’t I would like to know what other are doing to help with the pain if you would like to share I’m interested ❤️🌼
Hi Jerrilyn @jlf2, I only have the numbness along with some tingling but others with neuropathy pain have shared their story in other discussions that you might find helpful.
In 2010 I had surgery on L5-S1 and right leg was numb after surgery, not before. Pain still there sent me too PT for a few months nothing helped at all. Then I started back to pain clinic for the same relief I had , had prior to surgery and none of the injections helped either. After 2 years my right leg still numb, pain still bad I changed doctors. Day 1 the new doctor in 2013 told me that the screws were on my nerves chewing the nerve up and I needed surgery to repair L5-S1 revive , so in Jan 2014 almost to the day I had my new surgery. I learned from the new doctor that if a patient wakes up with a numb leg after surgery that wasn't numb before they should have done surgery right away to fix. And no I didn't sue, I'm still asking myself why I didn't. I'm still in a great deal of back pain and the foot pain is off the charts. I take pain pills mostly for back. I take Lyrica and cymbalta for feet also pain pills I also get RAN injections and I have a pain stimulate in my back. And still have pain. Since 2010 I've tried a great deal of things acupuncture for feet, shots of vit 12into my feet ouch I tried creams and lotions holistic doctors. I currently see a neurologist that also has the same condition and he is most worried about my feet numbness. Charlotte
2 years ago I had Numbness in both Feet. I had Treatment Called Sansex that sent electrical current to Nerves in legs. Been 2 years Numbness still gone. This was covered by Medicare but not anymore. It was 24 sessions. Also helped my legs.
Hi Jerrilyn @jlf2, I only have the numbness along with some tingling but others with neuropathy pain have shared their story in other discussions that you might find helpful.
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In 2010 I had surgery on L5-S1 and right leg was numb after surgery, not before. Pain still there sent me too PT for a few months nothing helped at all. Then I started back to pain clinic for the same relief I had , had prior to surgery and none of the injections helped either. After 2 years my right leg still numb, pain still bad I changed doctors. Day 1 the new doctor in 2013 told me that the screws were on my nerves chewing the nerve up and I needed surgery to repair L5-S1 revive , so in Jan 2014 almost to the day I had my new surgery. I learned from the new doctor that if a patient wakes up with a numb leg after surgery that wasn't numb before they should have done surgery right away to fix. And no I didn't sue, I'm still asking myself why I didn't. I'm still in a great deal of back pain and the foot pain is off the charts. I take pain pills mostly for back. I take Lyrica and cymbalta for feet also pain pills I also get RAN injections and I have a pain stimulate in my back. And still have pain. Since 2010 I've tried a great deal of things acupuncture for feet, shots of vit 12into my feet ouch I tried creams and lotions holistic doctors. I currently see a neurologist that also has the same condition and he is most worried about my feet numbness. Charlotte
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4 ReactionsI'm wondering if the following discussion might provide another option for relief from your pain.
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Have you heard of or tried Myofascial Release Therapy?
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1 ReactionHi, no I have never heard of this procedure. Did you have this procedure and did it help you.
I haven’t tried MFR but it has helped others like @artscaping and @jenniferhunter.
I went to a chiropractor,turns out he in peddling LED red light and some pills for a little over $4,000 You can google led for for nephropathy.most places talk about red led. One place mention blue. Some chiropractors are selling acupuncture. I have never heard sauna . All are vague about results. I regret that I didn't keep a list of web-sights that I visited.
.
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3 ReactionsGood evening @charlie807, Welcome to Connect. It appears that you are coming to this group with lots of experiences to share. And that's what we try to do well here........share! You have a great start and I am anxious to learn more about your condition.
However, right now, the message at the top of my list for you is about MFR, myofascial release therapy. There is simply no way I could hold on to exist without my MFR sessions every week. I was diagnosed with small fiber neuropathy (SFN) about 9 or 10 years ago. The journey can be a bit rugged. I will share a Connect link with you as an introduction. And by the way.....did @johnbishop tell you why he doesn't use MFR. That is because he has no pain with his form of SFN (small fiber neuropathy).
@jenniferhunter will undoubtedly be looking to greet you. You can surprise her by having already visited her page in Connect about MFR. Since it was posted, a lot of folks have added to her comments.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
When you say that your foot pain is off the charts....I actually know what you mean. In addition to the pain, the bottoms of my feet feel like leather. This started with a few toes on one foot. And, eventually the other foot. Now it seems like the pain in each foot is in a race to get to my knee. Actually, at this point, I have to have the MFR therapists work on my feet twice a week just so I can drive myself to therapy.
Please let me have some feedback after you have had a chance to absorb our Connect welcomes.
May you be free of suffering and the causes of suffering.
Chris
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Like -
Helpful -
Hug
6 ReactionsHi my name is Jerrilyn and I have non disabilities neuropathy and am in a lot of pain sometimes in my legs and feet I’m on gabapentin 600mg 2x daily sometimes it helps and sometimes it doesn’t I would like to know what other are doing to help with the pain if you would like to share I’m interested ❤️🌼
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Helpful -
Hug
1 ReactionHi Jerrilyn @jlf2, I only have the numbness along with some tingling but others with neuropathy pain have shared their story in other discussions that you might find helpful.
--- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
--- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/
2 years ago I had Numbness in both Feet. I had Treatment Called Sansex that sent electrical current to Nerves in legs. Been 2 years Numbness still gone. This was covered by Medicare but not anymore. It was 24 sessions. Also helped my legs.
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2 ReactionsThank you John for the information I will chec this out have a great day 😀
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