1. < Chronic Pain

Cyclic burning foot and leg pain EVERY OTHER DAY

Posted by steve6447t @steve6447t, Aug 16, 2023

I have struggled for 5 years with burning pain in my feet and legs. That may seem somewhat common but the pain is cyclic EVERY OTHER DAY. Has anyone experienced this. Is there a body or brain or nerve rhythm that could explain this?

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 23, 2023

Hello @steve6447t and welcome to Mayo Clinic Connect. To help other members who may have similar experiences like yours, would you be comfortable sharing a bit more detail about your experience? Have you had your foot and legs checked out by a provider and if so, what did they say? Other members on Connect have talked about burning feet that was related to neuropathy but that is something a medical provider would need to check for. Have you had this ruled out?

REPLY
1 reply
steve6447t | @steve6447t | Aug 25, 2023
In reply to @JustinMcClanahan "Hello @steve6447t and welcome to Mayo Clinic Connect. To help other members who may have similar..." + (show)
@JustinMcClanahan

Hello @steve6447t and welcome to Mayo Clinic Connect. To help other members who may have similar experiences like yours, would you be comfortable sharing a bit more detail about your experience? Have you had your foot and legs checked out by a provider and if so, what did they say? Other members on Connect have talked about burning feet that was related to neuropathy but that is something a medical provider would need to check for. Have you had this ruled out?

Jump to this post

NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023
Prior to my back surgery October 30 2018 for L5/S1nerve impingement , I started to have cold sensation on bottom of both feet. This only happened occasionally and was not real severe. I mentioned it to Dr Kremer (my neurosurgeon) who did my back surgery. (L5-S1 MIS-TLIF surgery) . The back surgery was successful. My back pain relieved 100%. - But the nerve issue (or whatever it is) in both feet and now both legs has gotten progressively worse since November 2018. Now, 60% of my days are very painful. Here is how it happens:
I wake up in the morning feeling fine. No cold feet no leg pain. I never have this pain when I wake up. About every other day, sometime in the morning to early afternoon, my feet start to feel cold. They are not actually cold and feel warm to touch. As the pain begins, It continuously feels like I am standing on a block of ice with bare feet the rest of the day. Anywhere from ½ hour to 5 hours later, I feel burning pain start up my legs (both legs at the same time in the same location). The pain radiates slowly up the back of both calves and eventually include the front of both legs. It slowly, over a period of maybe 2 hours, continues up both legs at the exactly bilaterally . At first toward the back of both legs. Recently it also wraps around the top of my foot and up my shins. The back of my legs feel like I am sitting with both legs in an inch of scalding water. All this pain takes me “out of the picture” physically and socially for the rest of the day.
No OTC pain meds have any benefit. No position, exercise or stretching will relieve the pain. By the afternoon, the pain is almost paralyzing both physically and socially. I go to bed at night, often after taking Oxycodone and eventually fall asleep if I add a Melatonin or Restoril. I wake up in the morning feeling relatively fine, go off to exercise and walk for 30 – 45 minutes, do a few stretches. Occasionally a day will be pain free – the next, as I described above. On my good (pain free) days, my feet feel unusually but pleasantly warm and my lower legs feel like I am wearing tight stockings to the knees. – But no pain.
Added to my misery it has become painful to sit due to pain now also in my buttocks. (again bilateral) This is continuous,- 24/7. It is a different type of pain and is sensitive to pressure. I cannot sit for more than a few minutes and I cannot lay on my back as the pain gets unbearable. From what I have been able to research, I believed this may be piriformis syndrome so my family Dr prescribed therapy(basically stretches) at Tamarac. That had no appreciable effect on the pain. I have had 3 double injections of steroids in bilateral piriformis. That dulls the piriformis pain for a few weeks.
• EMGs done at Barrow, Mayo, Spectrum and at Dr Groff’s (Grand Rapids Neurolgist) office
- NO FINDINGS – indicating neuropathy issues? .
• Visit pain clinic - 4/12/2019 –subscribed massive doses of Gabapentin.(2700/day) – NO RELIEF. Since then, I have visited a neurologist at Spectrum GR (Dr. Mundwiler) who ordered MRI of C and T spine. I have a narrowing of C 5 – C7 spinal cord resulting from a 1964 football injury but they did not know if it contributed to my issue.????? He also prescribed Gabapentin to be an indicator if this is a peripheral nerve issue . . I increased dosage until I was taking 2700mg per day with NO PAIN IMPROVEMENT but bad side effects.
• I have tried Lyrica , Nucynta , Nortriptyline , Welbutrin and even Solumedral Infusions – NO RELIEF.
------------------------------------------------------------------------------------------------------------------------------------
• I have engaged neurosurgeon Dr Lowry (who took Dr Kremers place after Dr Kremer performed my MIS TLIF surgery) to explore as a second opinion. Eventually he suggested Javery Pain Institute for injections and further study because Gabapentin had little to no benefit and bad side effects. I want to find the location source so several injections were administered in my from lumbar to cervical spine, as a process of elimination- NO RELIEF
• Pre Covid, I was in Arizona so made appointments at Barrow Neurological Institute. EMG, SSEP and complete blood work were done there. No conclusive findings although, due to the Covid Pandemic, I had to come home before all testing was complete.
• Spent 3 days at Mayo Clinic (Rochester, Mn) 2021. Tested for neuropathy and several other possibilities. No conclusions. EMGs , Sweat Test, SSEP showed basically no nerve damage.
• Made an appointment with Dr Grof, Neurologist in Grand Rapids Mi. He scheduled another MRI and X-rays May 2020. Eventually : SEE ATTACHED referral letter to Mayfield Clinic in Ohio. Insurance OKed 6 visits but Mayfield clinic would not accept an appointment with me unless I started with full spectrum of therapy. I declined since it was 6 hour drive from home.
• Recently – CBD, Cold packs, heating pad, Massive doses of B12, massage, TENS unit for feet and legs. –Lately applying Capsaicin and Tumeric paste to back of legs(home remedy) trying desperately to find relief. So far no success.
• Late October,2021 – several sessions of Physical Therapy at Spectrum Health (Tamarac PT) because Dr DeWeerd (my GP)wanted to eliminate Piriformis Syndrome as possible cause of my leg and foot pain. No results from several therapy sessions.

Lately a Spinal Cord Stimulator was surgically placed. That along with Oxycodone 10-325 takes the edge off somewhat. Pain level of 5-6 still remains. I don’t want to stay on Oxycodone long term so now looking for help.

HELP!!!!! I am at my wits end and have lost 5 nearly years of my life to this pain!!

REPLY
2 replies
jilliemo12345 | @jilliemo12345 | Aug 26, 2023
In reply to @steve6447t "NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023 Prior to my back surgery October 30 2018..." + (show)
@steve6447t

NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023
Prior to my back surgery October 30 2018 for L5/S1nerve impingement , I started to have cold sensation on bottom of both feet. This only happened occasionally and was not real severe. I mentioned it to Dr Kremer (my neurosurgeon) who did my back surgery. (L5-S1 MIS-TLIF surgery) . The back surgery was successful. My back pain relieved 100%. - But the nerve issue (or whatever it is) in both feet and now both legs has gotten progressively worse since November 2018. Now, 60% of my days are very painful. Here is how it happens:
I wake up in the morning feeling fine. No cold feet no leg pain. I never have this pain when I wake up. About every other day, sometime in the morning to early afternoon, my feet start to feel cold. They are not actually cold and feel warm to touch. As the pain begins, It continuously feels like I am standing on a block of ice with bare feet the rest of the day. Anywhere from ½ hour to 5 hours later, I feel burning pain start up my legs (both legs at the same time in the same location). The pain radiates slowly up the back of both calves and eventually include the front of both legs. It slowly, over a period of maybe 2 hours, continues up both legs at the exactly bilaterally . At first toward the back of both legs. Recently it also wraps around the top of my foot and up my shins. The back of my legs feel like I am sitting with both legs in an inch of scalding water. All this pain takes me “out of the picture” physically and socially for the rest of the day.
No OTC pain meds have any benefit. No position, exercise or stretching will relieve the pain. By the afternoon, the pain is almost paralyzing both physically and socially. I go to bed at night, often after taking Oxycodone and eventually fall asleep if I add a Melatonin or Restoril. I wake up in the morning feeling relatively fine, go off to exercise and walk for 30 – 45 minutes, do a few stretches. Occasionally a day will be pain free – the next, as I described above. On my good (pain free) days, my feet feel unusually but pleasantly warm and my lower legs feel like I am wearing tight stockings to the knees. – But no pain.
Added to my misery it has become painful to sit due to pain now also in my buttocks. (again bilateral) This is continuous,- 24/7. It is a different type of pain and is sensitive to pressure. I cannot sit for more than a few minutes and I cannot lay on my back as the pain gets unbearable. From what I have been able to research, I believed this may be piriformis syndrome so my family Dr prescribed therapy(basically stretches) at Tamarac. That had no appreciable effect on the pain. I have had 3 double injections of steroids in bilateral piriformis. That dulls the piriformis pain for a few weeks.
• EMGs done at Barrow, Mayo, Spectrum and at Dr Groff’s (Grand Rapids Neurolgist) office
- NO FINDINGS – indicating neuropathy issues? .
• Visit pain clinic - 4/12/2019 –subscribed massive doses of Gabapentin.(2700/day) – NO RELIEF. Since then, I have visited a neurologist at Spectrum GR (Dr. Mundwiler) who ordered MRI of C and T spine. I have a narrowing of C 5 – C7 spinal cord resulting from a 1964 football injury but they did not know if it contributed to my issue.????? He also prescribed Gabapentin to be an indicator if this is a peripheral nerve issue . . I increased dosage until I was taking 2700mg per day with NO PAIN IMPROVEMENT but bad side effects.
• I have tried Lyrica , Nucynta , Nortriptyline , Welbutrin and even Solumedral Infusions – NO RELIEF.
------------------------------------------------------------------------------------------------------------------------------------
• I have engaged neurosurgeon Dr Lowry (who took Dr Kremers place after Dr Kremer performed my MIS TLIF surgery) to explore as a second opinion. Eventually he suggested Javery Pain Institute for injections and further study because Gabapentin had little to no benefit and bad side effects. I want to find the location source so several injections were administered in my from lumbar to cervical spine, as a process of elimination- NO RELIEF
• Pre Covid, I was in Arizona so made appointments at Barrow Neurological Institute. EMG, SSEP and complete blood work were done there. No conclusive findings although, due to the Covid Pandemic, I had to come home before all testing was complete.
• Spent 3 days at Mayo Clinic (Rochester, Mn) 2021. Tested for neuropathy and several other possibilities. No conclusions. EMGs , Sweat Test, SSEP showed basically no nerve damage.
• Made an appointment with Dr Grof, Neurologist in Grand Rapids Mi. He scheduled another MRI and X-rays May 2020. Eventually : SEE ATTACHED referral letter to Mayfield Clinic in Ohio. Insurance OKed 6 visits but Mayfield clinic would not accept an appointment with me unless I started with full spectrum of therapy. I declined since it was 6 hour drive from home.
• Recently – CBD, Cold packs, heating pad, Massive doses of B12, massage, TENS unit for feet and legs. –Lately applying Capsaicin and Tumeric paste to back of legs(home remedy) trying desperately to find relief. So far no success.
• Late October,2021 – several sessions of Physical Therapy at Spectrum Health (Tamarac PT) because Dr DeWeerd (my GP)wanted to eliminate Piriformis Syndrome as possible cause of my leg and foot pain. No results from several therapy sessions.

Lately a Spinal Cord Stimulator was surgically placed. That along with Oxycodone 10-325 takes the edge off somewhat. Pain level of 5-6 still remains. I don’t want to stay on Oxycodone long term so now looking for help.

HELP!!!!! I am at my wits end and have lost 5 nearly years of my life to this pain!!

Jump to this post

I’m so sorry for your suffering and do understand the relentless pain you are enduring.
I’ve had intermittent episodes of pain in my legs and feet, numbness, burning and cold and restlessness that prevents me from sleeping that compounds day after day.
Have any of your doctors suggested antidepressants?
The toll that the day after day suffering can cause depression that may compound the discomfort, antidepressants might give you some relief .
I wish you the best in finding a solution to lessen or stop your suffering and pray you will.
Sincerely, jill

REPLY
1 reply
suecutuli | @suecutuli | Aug 26, 2023

I have no help. I’ve been trying for 16 yrs. All my practitioners always thought it must be this or that. My constant search was exhausting and depressing. I’ve been on and off Norco this whole time never wanting to have the dependency, but I cannot
Live in this pain either. Mine is very similar to yours with the burning and leg
Pain. I just got bad from a 2 week vacay with no therapy and actually I don’t feel that much worse. My newest thought is
I’m going to a grieve therapist. I think I finally ready to accept that I’m not getting better . In addition my hips have
Been very painful and I m probably going to have to get Prolotherepy or hip replacement. I see SO MANY of
Us suffering with these weird symptoms that nobody understands! Good
Luck - I never thought I’d quit
Looking for
Help but I’m exhausted, as I know you are.

REPLY
dablues | @dablues | Aug 26, 2023
In reply to @steve6447t "NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023 Prior to my back surgery October 30 2018..." + (show)
@steve6447t

NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023
Prior to my back surgery October 30 2018 for L5/S1nerve impingement , I started to have cold sensation on bottom of both feet. This only happened occasionally and was not real severe. I mentioned it to Dr Kremer (my neurosurgeon) who did my back surgery. (L5-S1 MIS-TLIF surgery) . The back surgery was successful. My back pain relieved 100%. - But the nerve issue (or whatever it is) in both feet and now both legs has gotten progressively worse since November 2018. Now, 60% of my days are very painful. Here is how it happens:
I wake up in the morning feeling fine. No cold feet no leg pain. I never have this pain when I wake up. About every other day, sometime in the morning to early afternoon, my feet start to feel cold. They are not actually cold and feel warm to touch. As the pain begins, It continuously feels like I am standing on a block of ice with bare feet the rest of the day. Anywhere from ½ hour to 5 hours later, I feel burning pain start up my legs (both legs at the same time in the same location). The pain radiates slowly up the back of both calves and eventually include the front of both legs. It slowly, over a period of maybe 2 hours, continues up both legs at the exactly bilaterally . At first toward the back of both legs. Recently it also wraps around the top of my foot and up my shins. The back of my legs feel like I am sitting with both legs in an inch of scalding water. All this pain takes me “out of the picture” physically and socially for the rest of the day.
No OTC pain meds have any benefit. No position, exercise or stretching will relieve the pain. By the afternoon, the pain is almost paralyzing both physically and socially. I go to bed at night, often after taking Oxycodone and eventually fall asleep if I add a Melatonin or Restoril. I wake up in the morning feeling relatively fine, go off to exercise and walk for 30 – 45 minutes, do a few stretches. Occasionally a day will be pain free – the next, as I described above. On my good (pain free) days, my feet feel unusually but pleasantly warm and my lower legs feel like I am wearing tight stockings to the knees. – But no pain.
Added to my misery it has become painful to sit due to pain now also in my buttocks. (again bilateral) This is continuous,- 24/7. It is a different type of pain and is sensitive to pressure. I cannot sit for more than a few minutes and I cannot lay on my back as the pain gets unbearable. From what I have been able to research, I believed this may be piriformis syndrome so my family Dr prescribed therapy(basically stretches) at Tamarac. That had no appreciable effect on the pain. I have had 3 double injections of steroids in bilateral piriformis. That dulls the piriformis pain for a few weeks.
• EMGs done at Barrow, Mayo, Spectrum and at Dr Groff’s (Grand Rapids Neurolgist) office
- NO FINDINGS – indicating neuropathy issues? .
• Visit pain clinic - 4/12/2019 –subscribed massive doses of Gabapentin.(2700/day) – NO RELIEF. Since then, I have visited a neurologist at Spectrum GR (Dr. Mundwiler) who ordered MRI of C and T spine. I have a narrowing of C 5 – C7 spinal cord resulting from a 1964 football injury but they did not know if it contributed to my issue.????? He also prescribed Gabapentin to be an indicator if this is a peripheral nerve issue . . I increased dosage until I was taking 2700mg per day with NO PAIN IMPROVEMENT but bad side effects.
• I have tried Lyrica , Nucynta , Nortriptyline , Welbutrin and even Solumedral Infusions – NO RELIEF.
------------------------------------------------------------------------------------------------------------------------------------
• I have engaged neurosurgeon Dr Lowry (who took Dr Kremers place after Dr Kremer performed my MIS TLIF surgery) to explore as a second opinion. Eventually he suggested Javery Pain Institute for injections and further study because Gabapentin had little to no benefit and bad side effects. I want to find the location source so several injections were administered in my from lumbar to cervical spine, as a process of elimination- NO RELIEF
• Pre Covid, I was in Arizona so made appointments at Barrow Neurological Institute. EMG, SSEP and complete blood work were done there. No conclusive findings although, due to the Covid Pandemic, I had to come home before all testing was complete.
• Spent 3 days at Mayo Clinic (Rochester, Mn) 2021. Tested for neuropathy and several other possibilities. No conclusions. EMGs , Sweat Test, SSEP showed basically no nerve damage.
• Made an appointment with Dr Grof, Neurologist in Grand Rapids Mi. He scheduled another MRI and X-rays May 2020. Eventually : SEE ATTACHED referral letter to Mayfield Clinic in Ohio. Insurance OKed 6 visits but Mayfield clinic would not accept an appointment with me unless I started with full spectrum of therapy. I declined since it was 6 hour drive from home.
• Recently – CBD, Cold packs, heating pad, Massive doses of B12, massage, TENS unit for feet and legs. –Lately applying Capsaicin and Tumeric paste to back of legs(home remedy) trying desperately to find relief. So far no success.
• Late October,2021 – several sessions of Physical Therapy at Spectrum Health (Tamarac PT) because Dr DeWeerd (my GP)wanted to eliminate Piriformis Syndrome as possible cause of my leg and foot pain. No results from several therapy sessions.

Lately a Spinal Cord Stimulator was surgically placed. That along with Oxycodone 10-325 takes the edge off somewhat. Pain level of 5-6 still remains. I don’t want to stay on Oxycodone long term so now looking for help.

HELP!!!!! I am at my wits end and have lost 5 nearly years of my life to this pain!!

Jump to this post

I'm dealing with feet, leg burning pain every night. I was told I had peripheral neuropathy after taking a Shingrix Vaccine and the second dose gave me that. My feet feel fake. I took massive Vitamin B12 and the fakeness of my feet went away but my feet feels like the muscles and the bone separated. Don't know if I'm explaining this right but I tried Rife machine, Red Light Therapy, TENS nothing is stopping it. It only happens at NIGHT and my whole body goes numb and wakes me up and I have to get up to make it stop. Orthopedic told me it was a neurology problem, but testing in 2019 said I had neuropathy and gave me cream. Doesn't work. I know my neck, spine, etc. is not in good condition and I have a feeling that is what is causing it but no one wants to do anything. Now my feet turn in when I lay down. Can't keep them straight. My right leg now if I try to keep it straight I get pain in the part of my leg. I can't stand it no more. I'm going in circles!

REPLY
deedeedavidson | @deedeedavidson | Aug 27, 2023

I’m so sorry for your pain! It’s hard to describe to others the toll chronic pain can take on a person.
I had XLIF (Extreme Lateral Interbody Fusion) surgery for spondylolisthesis. Legs were aching and waking me up at night, but I didn’t have back pain. The minute I woke up after surgery my lower legs were so hyper sensitive the light pajama bottoms I was wearing felt like torture. Since then I developed osteonecrosis in both knees and had two total knee replacements during Covid. The pain that I lived with for over two years from the osteonecrosis was debilitating! And there were no doctors here who caught it. They all just gave me cortisone and hyaluronic acid shots. Finally I found out the best knee doctors in So. Calif., and Dr. Penenberg immediately caught the osteonecrosis and replaced these knees. Everything healed from my surgeries. But the pain increased. Along with that, poor balance (several falls), poor sleep, and discouragement.
Fast forward SEVEN YEARS. The pain since surgery has been so difficult! At this point I have pain in my right arm and it starts at my hips and goes down to my feet. I’ve been on Tramadol and Gabapentin since 2016. I’ve had nerve tests ( inconclusive), MRIs, CTs, physical therapy off and on for years. Last year I decided I was going to go at it with everything I could find.
A few years back we had a UCLA annex open up here in the suburbs and I found a great PCP. Now that I’m 70 I need a ‘quarterback’. He eventually sent me to a rheumatologist, a pain management specialist, etc. after a TON of testing they landed on greater trochanteric pain syndrome and fibromyalgia ( which I somehow thought was a made-up psycho disease- apparently not!). So I am still on Tramadol, Gabapentin, and now, a few weeks ago, a low dose milnacipran (Savella). Sleep has been so illusive, as it seems it has for so many others on this blog! I finally found a CBD w/ THC sleep tincture that has really helped me get more sleep which improves everything. I have also started water exercise and CBT- cognitive brain therapy. Apparently the mind/ body connection is so strong you can actually calm things down by changing your thinking. I am using an APP for this- Curable- and I am getting a whole new perspective about pain. I have an incredible physical therapist who works with me one-on-one for my entire hour 2x/week and has educated me so much about pain. The years I lived with pain as well as the after-surgeries pain have basically reset my central nervous system and kept it on high alert, therefore chronic pain.
As of today, three weeks out since the start of milnacipran, I believe I am doing better. I feel like the pain has dulled down a bit. This medicine is an anti-depressant which was discovered, in low doses, 12.5 mg. to start, to help fibromyalgia. I have a little hope for the first time in so very long! And just having it figured out has helped me immeasurably.
So don’t give up- be your own advocate. I was reading so many studies I think it exacerbated my pain because I was so concentrated on it! But I found the right people to help me, and I have some hope. It still flares up, and I still get worse after about 3pm. But it’s not as acute, and that’s amazing.

REPLY
steve6447t | @steve6447t | Aug 29, 2023
In reply to @jilliemo12345 "I’m so sorry for your suffering and do understand the relentless pain you are enduring. I’ve..." + (show)
@jilliemo12345

I’m so sorry for your suffering and do understand the relentless pain you are enduring.
I’ve had intermittent episodes of pain in my legs and feet, numbness, burning and cold and restlessness that prevents me from sleeping that compounds day after day.
Have any of your doctors suggested antidepressants?
The toll that the day after day suffering can cause depression that may compound the discomfort, antidepressants might give you some relief .
I wish you the best in finding a solution to lessen or stop your suffering and pray you will.
Sincerely, jill

Jump to this post

Thanks for your repy. Yes, I've been on several antidepressants!. Non of them touched the pain and had terrible side effects. I am trying another one next week. I hate to give up and start treating the symptoms but I have lost so much of my late years under pain, i'll try anything now.
Steve

REPLY
shelbyblue | @shelbyblue | Apr 12 12:58pm

Hey, I’m new here. I just got home from my XLIF surgery, I previously had an open back surgery in 2015 for lower lumbar areas. This surgery has been so do much better than cutting through back muscle, way less pain. I am able to walk pretty good just soreness in my left leg and back but night and day compared to the past surgery. Feeling great actually just one day in the hospital. I had a Great doctor Dr. David Vincent here in Virginia Beach. Hope the healing goes quick. Good luck to all of you.

REPLY
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