I don’t have pain all a the time but extreme pain at night , not every night , that makes it hard to sleep and then goes away in the morning. It’s under control with pain medication that have figured when to take during the day to time it so once I am asleep the pain is mild enough that i don’t feel it. But if I am on off on my meds in the afternoon by a bit and don’t sleep on time, then it gets to be unbearable. Any body else experience extreme pain on occasion but not all the time?
Hi , I can relate to that , its all relative to the amount of activity I do during the day, I can get awful shin pain at night, I sometimes put an ice pack on my shins in bed which gives good relief. Sean
My pain comes and goes, but it is worse at night when I try to sleep. I have not figured out why this happens, it seems it has a mind of its own. I can handle the pain during the day, for the most part. However, at night when I am trying to sleep it is the worst, I wish I had some answers for you, hang in there, I hope you able to find some relief.
I was diagnosed with Neuropathy this week. Doctor suggested a medication called Lyrica; said will not cure it but would help with the extreme discomfort. Pain came on fast, but is really bad at night. Difficulty sleeping. Has anyone used this medicine and did it help?
Hello. I have small fiber peripheral neuropathy throughout my whole body. B12 deficiency. Literally from the top of my head to my toes, but yes, both legs. My calves feel like bricks and my legs feel like cement. They burn, they ache, they are heavy and continue with cold flush sensations among other strange feelings. Lyrica CR has helped the majority of sunburn feeling and pins and needles. I do not have balance issues but, to walk is to be in pain. The more I walk, the more debilitating it gets. I have to walk very slow and gingerly now. So, one could say I'm in control by IF I choose to walk or not. It's a double edged sword...on one hand I'm defiant and so help me...at age 49 as long as I can put one foot in front of the other, I'm walking! I think of the people who can't and the possibility that I may not be able to at all one day. On the other hand I'm creating my own misery. Out of my whole body's neuropathy, I must admit, these legs are really doing me in. Hands also have been one of the bigger challenges. The future scares me but, I try to stay positive and keep actively pursuing treatments. Life has come to a screeching halt and every day I continue to adapt to my "new norm". It sucks for me, my husband and my children.
Trying to keep the glass half full...cheers my friends!
Hello. I have small fiber peripheral neuropathy throughout my whole body. B12 deficiency. Literally from the top of my head to my toes, but yes, both legs. My calves feel like bricks and my legs feel like cement. They burn, they ache, they are heavy and continue with cold flush sensations among other strange feelings. Lyrica CR has helped the majority of sunburn feeling and pins and needles. I do not have balance issues but, to walk is to be in pain. The more I walk, the more debilitating it gets. I have to walk very slow and gingerly now. So, one could say I'm in control by IF I choose to walk or not. It's a double edged sword...on one hand I'm defiant and so help me...at age 49 as long as I can put one foot in front of the other, I'm walking! I think of the people who can't and the possibility that I may not be able to at all one day. On the other hand I'm creating my own misery. Out of my whole body's neuropathy, I must admit, these legs are really doing me in. Hands also have been one of the bigger challenges. The future scares me but, I try to stay positive and keep actively pursuing treatments. Life has come to a screeching halt and every day I continue to adapt to my "new norm". It sucks for me, my husband and my children.
Trying to keep the glass half full...cheers my friends!
Hi, have you looked into trying MFR, or Myofascial Release Therapy? After just 1 session I could feel a reduction in the affects of neuropathy in my feet. After my 4th treatment, I can walk for 20-30 minutes, when before it was maybe less than 10 minutes. There are self treatments as well you do at home to help loosen the fascia in between sessions or not. This has really helped me with my attitude for life after a fall down stairs in Paris in 2012.
I also highly recommend the very gentle position of laying on your back and putting your legs up against the wall, like an L. If you are not real flexible, that’s ok, even getting your butt a foot away from the wall with your legs up, will relieve pooling of blood and fluids and drains by gravity. I do it to compliment my MFR treatments. I am a true believer in MFR as I have been a very strong proponent of this therapy as I have tried pretty much everything in the book. This is truly the first therapy where I have felt good for more than a few hrs. Now it’s much longer.
Hope this helps and good luck finding what you are looking for!!
Hi, have you looked into trying MFR, or Myofascial Release Therapy? After just 1 session I could feel a reduction in the affects of neuropathy in my feet. After my 4th treatment, I can walk for 20-30 minutes, when before it was maybe less than 10 minutes. There are self treatments as well you do at home to help loosen the fascia in between sessions or not. This has really helped me with my attitude for life after a fall down stairs in Paris in 2012.
I also highly recommend the very gentle position of laying on your back and putting your legs up against the wall, like an L. If you are not real flexible, that’s ok, even getting your butt a foot away from the wall with your legs up, will relieve pooling of blood and fluids and drains by gravity. I do it to compliment my MFR treatments. I am a true believer in MFR as I have been a very strong proponent of this therapy as I have tried pretty much everything in the book. This is truly the first therapy where I have felt good for more than a few hrs. Now it’s much longer.
Hope this helps and good luck finding what you are looking for!!
Hi and thank you for your reply! Yes, I actually have completed 6 sessions of myofacial release therapy. Because of multiple problem areas, my therapist is rotating throughout my body. I'm going twice a week and every other visit is for my legs. I have heard alot of good feed back from this forum which helped me decide to try it however, most success has seemed to be from people with foot neuropathy. My left foot is fine but, my right big toe has pain. Mainly my legs. I'm so impressed (and a little jealous honestly) that people have had relief with one session on their feet. That's awesome! I'm not there yet but I'm going to keep at it because for the most part it feels nice and my body deserves that. I do end up with pain in certain areas so he has to pull back and I have to communicate. Im high maintenance, I guess. Haha!
Hi, have you looked into trying MFR, or Myofascial Release Therapy? After just 1 session I could feel a reduction in the affects of neuropathy in my feet. After my 4th treatment, I can walk for 20-30 minutes, when before it was maybe less than 10 minutes. There are self treatments as well you do at home to help loosen the fascia in between sessions or not. This has really helped me with my attitude for life after a fall down stairs in Paris in 2012.
I also highly recommend the very gentle position of laying on your back and putting your legs up against the wall, like an L. If you are not real flexible, that’s ok, even getting your butt a foot away from the wall with your legs up, will relieve pooling of blood and fluids and drains by gravity. I do it to compliment my MFR treatments. I am a true believer in MFR as I have been a very strong proponent of this therapy as I have tried pretty much everything in the book. This is truly the first therapy where I have felt good for more than a few hrs. Now it’s much longer.
Hope this helps and good luck finding what you are looking for!!
Hello. I have small fiber peripheral neuropathy throughout my whole body. B12 deficiency. Literally from the top of my head to my toes, but yes, both legs. My calves feel like bricks and my legs feel like cement. They burn, they ache, they are heavy and continue with cold flush sensations among other strange feelings. Lyrica CR has helped the majority of sunburn feeling and pins and needles. I do not have balance issues but, to walk is to be in pain. The more I walk, the more debilitating it gets. I have to walk very slow and gingerly now. So, one could say I'm in control by IF I choose to walk or not. It's a double edged sword...on one hand I'm defiant and so help me...at age 49 as long as I can put one foot in front of the other, I'm walking! I think of the people who can't and the possibility that I may not be able to at all one day. On the other hand I'm creating my own misery. Out of my whole body's neuropathy, I must admit, these legs are really doing me in. Hands also have been one of the bigger challenges. The future scares me but, I try to stay positive and keep actively pursuing treatments. Life has come to a screeching halt and every day I continue to adapt to my "new norm". It sucks for me, my husband and my children.
Trying to keep the glass half full...cheers my friends!
I admire your reality and willingness to keep putting one foot in front of the other. I wish I didn’t relate but I do! This very moment pain is spasms with a electric charge that should bring me to my knees but my knees won’t bend!
I have nothing to offer,no ideas no medical revelation I take solace in reading the journey of others and prayer which often turns to pleading for a some respite.
You keep moving and embracing your newnormal people love you and breathing helps.
Take care
Hi and thank you for your reply! Yes, I actually have completed 6 sessions of myofacial release therapy. Because of multiple problem areas, my therapist is rotating throughout my body. I'm going twice a week and every other visit is for my legs. I have heard alot of good feed back from this forum which helped me decide to try it however, most success has seemed to be from people with foot neuropathy. My left foot is fine but, my right big toe has pain. Mainly my legs. I'm so impressed (and a little jealous honestly) that people have had relief with one session on their feet. That's awesome! I'm not there yet but I'm going to keep at it because for the most part it feels nice and my body deserves that. I do end up with pain in certain areas so he has to pull back and I have to communicate. Im high maintenance, I guess. Haha!
Hi Rwinney. Great to hear you got some relief in your feet. And other parts of your body. When you mentioned that you still have pain in your right big toe, so do I ! I developed an autoimmune disease called Complex Regional Pain Syndrome, or CRPS. I have tried so many different therapies and treatments, epidurals, finally needed a spinal fusion at S5-L1, and about 2 weeks after that surgery, I developed this nonstop throbbing pain in my big R toe. It was like someone is standing on your foot 24 hrs a day. That’s when my Dr advised that I had CRPS, and another Neuro Dr agreed. I can’t sleep with a sheet touching my toe - its that sensitive. I have a sheet lift that fits on your bed. That’s when my life changed forever. I’m on several meds to relieve some of my misery: -with my PN, -nerve pain that goes down my thighs, as though nails are shooting out from within them- I get stabbing pain, like a poker
stick that shoots out from my tailbone into my lower back where my surgeries were, and other back and hip issues.
Have you talked to neurosurgeon or neologism about the nonstop pain? It’s so hard to diagnose that once it has, the nerves seem to be too damaged to repair itself. I even had a Neuro stimulator implant but didn’t help so had it removed 14 months later.
I do the leg lifts a couple times a day. Sometimes I can actually feel tingling and spasms as the gravity moves whatever it is down back to my body.
Re MFR- Communication is king !!!
During your sessions, I, and hopefully you, tell your therapist what your body is saying as therapy is being done. Telling her where it tingles, spasms, hurts, numb, whatever, I blurt out what my body is doing and she can help find where there is a lot of tension that needs to be released. It really helps my therapist to know what to try next. Your body deserves it !!!
My MFR sessions are weekly, and my therapist has found so much tightness in most areas that she works on one area each session. I leave feeling more relaxed and my body does better after the treatment. I’m a long ways away from being ‘normal’. But at least I can almost plan an event. Before it was hit or miss. She works on my R toe every session. Painful but necessary!
Sorry that I rambled on but I wanted to let you know about my constant toe pain as well.
And to keep with it, and try legs up. At least 5 minutes at a time. Don’t stretch your hamstring too tight. Just a suggestion.!!
Together we will keep up the MFR and we will each make progress. Time will tell.
Good luck.
Good to hear you are moving and exercising. Are you able to walk enough to help the old heart rate up and help stimulate your internal body weapons to help in your journey? Any movement is good movement. It can help breakdown or loosen the fascia throughout the body. It’s also helped me with my stamina which has been very limited.
Hang in there. I’m sure I can say - we wish you the best- from this discussion group.
Hi , I can relate to that , its all relative to the amount of activity I do during the day, I can get awful shin pain at night, I sometimes put an ice pack on my shins in bed which gives good relief. Sean
My pain comes and goes, but it is worse at night when I try to sleep. I have not figured out why this happens, it seems it has a mind of its own. I can handle the pain during the day, for the most part. However, at night when I am trying to sleep it is the worst, I wish I had some answers for you, hang in there, I hope you able to find some relief.
Didn’t work
Hello. I have small fiber peripheral neuropathy throughout my whole body. B12 deficiency. Literally from the top of my head to my toes, but yes, both legs. My calves feel like bricks and my legs feel like cement. They burn, they ache, they are heavy and continue with cold flush sensations among other strange feelings. Lyrica CR has helped the majority of sunburn feeling and pins and needles. I do not have balance issues but, to walk is to be in pain. The more I walk, the more debilitating it gets. I have to walk very slow and gingerly now. So, one could say I'm in control by IF I choose to walk or not. It's a double edged sword...on one hand I'm defiant and so help me...at age 49 as long as I can put one foot in front of the other, I'm walking! I think of the people who can't and the possibility that I may not be able to at all one day. On the other hand I'm creating my own misery. Out of my whole body's neuropathy, I must admit, these legs are really doing me in. Hands also have been one of the bigger challenges. The future scares me but, I try to stay positive and keep actively pursuing treatments. Life has come to a screeching halt and every day I continue to adapt to my "new norm". It sucks for me, my husband and my children.
Trying to keep the glass half full...cheers my friends!
Hi, have you looked into trying MFR, or Myofascial Release Therapy? After just 1 session I could feel a reduction in the affects of neuropathy in my feet. After my 4th treatment, I can walk for 20-30 minutes, when before it was maybe less than 10 minutes. There are self treatments as well you do at home to help loosen the fascia in between sessions or not. This has really helped me with my attitude for life after a fall down stairs in Paris in 2012.
I also highly recommend the very gentle position of laying on your back and putting your legs up against the wall, like an L. If you are not real flexible, that’s ok, even getting your butt a foot away from the wall with your legs up, will relieve pooling of blood and fluids and drains by gravity. I do it to compliment my MFR treatments. I am a true believer in MFR as I have been a very strong proponent of this therapy as I have tried pretty much everything in the book. This is truly the first therapy where I have felt good for more than a few hrs. Now it’s much longer.
Hope this helps and good luck finding what you are looking for!!
Hi and thank you for your reply! Yes, I actually have completed 6 sessions of myofacial release therapy. Because of multiple problem areas, my therapist is rotating throughout my body. I'm going twice a week and every other visit is for my legs. I have heard alot of good feed back from this forum which helped me decide to try it however, most success has seemed to be from people with foot neuropathy. My left foot is fine but, my right big toe has pain. Mainly my legs. I'm so impressed (and a little jealous honestly) that people have had relief with one session on their feet. That's awesome! I'm not there yet but I'm going to keep at it because for the most part it feels nice and my body deserves that. I do end up with pain in certain areas so he has to pull back and I have to communicate. Im high maintenance, I guess. Haha!
...and I will try the leg excercises. I find stretching my calves and elevation helps. Thanks!
I admire your reality and willingness to keep putting one foot in front of the other. I wish I didn’t relate but I do! This very moment pain is spasms with a electric charge that should bring me to my knees but my knees won’t bend!
I have nothing to offer,no ideas no medical revelation I take solace in reading the journey of others and prayer which often turns to pleading for a some respite.
You keep moving and embracing your newnormal people love you and breathing helps.
Take care
Hi Rwinney. Great to hear you got some relief in your feet. And other parts of your body. When you mentioned that you still have pain in your right big toe, so do I ! I developed an autoimmune disease called Complex Regional Pain Syndrome, or CRPS. I have tried so many different therapies and treatments, epidurals, finally needed a spinal fusion at S5-L1, and about 2 weeks after that surgery, I developed this nonstop throbbing pain in my big R toe. It was like someone is standing on your foot 24 hrs a day. That’s when my Dr advised that I had CRPS, and another Neuro Dr agreed. I can’t sleep with a sheet touching my toe - its that sensitive. I have a sheet lift that fits on your bed. That’s when my life changed forever. I’m on several meds to relieve some of my misery: -with my PN, -nerve pain that goes down my thighs, as though nails are shooting out from within them- I get stabbing pain, like a poker
stick that shoots out from my tailbone into my lower back where my surgeries were, and other back and hip issues.
Have you talked to neurosurgeon or neologism about the nonstop pain? It’s so hard to diagnose that once it has, the nerves seem to be too damaged to repair itself. I even had a Neuro stimulator implant but didn’t help so had it removed 14 months later.
I do the leg lifts a couple times a day. Sometimes I can actually feel tingling and spasms as the gravity moves whatever it is down back to my body.
Re MFR- Communication is king !!!
During your sessions, I, and hopefully you, tell your therapist what your body is saying as therapy is being done. Telling her where it tingles, spasms, hurts, numb, whatever, I blurt out what my body is doing and she can help find where there is a lot of tension that needs to be released. It really helps my therapist to know what to try next. Your body deserves it !!!
My MFR sessions are weekly, and my therapist has found so much tightness in most areas that she works on one area each session. I leave feeling more relaxed and my body does better after the treatment. I’m a long ways away from being ‘normal’. But at least I can almost plan an event. Before it was hit or miss. She works on my R toe every session. Painful but necessary!
Sorry that I rambled on but I wanted to let you know about my constant toe pain as well.
And to keep with it, and try legs up. At least 5 minutes at a time. Don’t stretch your hamstring too tight. Just a suggestion.!!
Together we will keep up the MFR and we will each make progress. Time will tell.
Good luck.
Good to hear you are moving and exercising. Are you able to walk enough to help the old heart rate up and help stimulate your internal body weapons to help in your journey? Any movement is good movement. It can help breakdown or loosen the fascia throughout the body. It’s also helped me with my stamina which has been very limited.
Hang in there. I’m sure I can say - we wish you the best- from this discussion group.