Mayo Clinic Connect
I am on a constant quest for shoes that don’t kill my feet due to the neuropathy. I find that Spencos and Wolky shoes seem the best. Are there any other suggestions? Shoes can be just crippling for me. Horrid.
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@retiredteacher @lauraj155 Hi ladies, I went to my neurologist today, and got some promising news, I hope. First, and most amazing, is that according to my EMG results, it is highly unlikely that I have Neuropathy!!! What I do most likely have, is radiculopathy of the L5, S1 Lumbar Spine. In Layman's terms, a pinched nerve of the nerve roots within this particular area of the spine. (The very lower back). This part of the nerve roots of the spine directly controls the balls of the feet and toes where my pain is so severe. I am already scheduled for lower back strengthening exercises at Physical Therapy and will be getting a Steroid shot into the L5 S1 Lumbar Spine, so that my feet won't hurt, God willing. Surgery could also be down the road, but very premature to even think about. Laura, thoughts rolling in my head……too much B6 in your system causing your feet problems???? Carol…with enough time that has passed…..is your husband any better? Any change with your feet? By the way ladies, last time I wore my Spencos, they hurt. Now that is crazy. Just plain crazy. So that is it……Never a dull moment in this life of ours. I could use some dull ones. Lori Renee
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@lorirenee1 @retiredteacher, Ohh Lori – this sounds like such a better scenario!! I actually have a friend who was having burning pain in her feet and thought it was neuropathy and it turned out to be lower lumbar, I believe S1. She has gotten epidurals a couple times and her feet pain is gone!! However, the doctor is telling her that she may require surgery somewhere down the line. But she has been symptomatic for five months since her last epidural. Does your lower back hurt at all?? Sometimes it doesn’t have to hurt but you can just get the symptoms in your feet. I am really happy for you that it is not crappy neuropathy!!
Ok, my story today…I was sent to Pain Specialist and he is glad I’m going to Neurologist in a couple weeks. However, he was palpating my feet and on my left foot, the big toe is quite painful in the joint and feels I need a steroid injection which I will have to get from the Podiatrist. At least it’s something I can try.
My EMG that I had back in 2005 was also normal so I am hoping to know what the heck is going on now. I digress…happy about your news though… Laura
@lorirenee1 I'll see my endocrinologist and let him know. He'll tell me what he wants me to do. Doctors here are very territorial. He is in charge of my diabetes, so he will tell me if I need to see a neurologist. When I go for my next appointment, we'll discuss it and go from there.
No other reason than that.
Sounds good! Lori Renee
Hi Laura, I did not realize you have not had an EMG since 2005! So you are not even sure you have neuropathy?! God! And your feet hurt so bad! The steroid shot will help your toe, for sure. I am so glad you are seeing your neuro doc. It is so important. Here in Illinois, you can wait three to four months to see a neurologist. They are booked solid. Mine is from a really prestigious teaching hospital and I was so glad to see her. It has taken one year to finally get what seems like what might be a diagnosis. That is because you wait and wait to see a doctor, get results of a test, etc. As far as back pain, I have none. That is why I was so amazed by this. My first EMG done six months ago, did not show this, but the current one did. I changed neurologists and she ordered new tests, etc. I believe in always trying new doctors if you are getting nowhere. My pain is excruciating a lot. Anyway, please let me know about that toe of yours, your appointment, your exercise, etc. Be good to yourself, and only do what you can do. We are both in a lot of pain. Not for the faint of heart. Be kind to yourself, and I wish you well. Talk soon…. Lori Renee
@lorirenee1, Waiting to see a specialist can take months also. I think it may be just the way our health care system is run now, a lot of it being for profit. I’m glad that you have been such a strong advocate for yourself and were able to see the new Neurologist and get the exact diagnosis. Will they also need an MRI on your lumbar spine as well?
I had a normal EMG in 2005 and I saw so many different specialist all telling me a different diagnosis. The only thing that really helped was a very low dose of oral hydrocortisone. That tells me right there it is coming from an autoimmune condition. I had a positive Scleroderma test back in 2014. I don’t have symptoms but my doctor said I have some kind of autoimmune condition going on but I have a negative ANA. At my age now I really don’t want to give steroids another try due to the side effects and one of them being Osteoporosis. I already have osteopenia, even in my feet. I see the Neurologist on May 3rd and have been waiting for a couple of months for that appointment. I just hope that they can determine this time what this flare up is about. Believe it or not I was hiking in the mountains last October!! All we can do is keep trying!! Take care and hope you are feeling well today!!
Laura, Don't you just feel like you have been through the "ringer" after awhile? I cannot believe you have had various diagnosis. That is so much to deal with. Having scleroderma being positive without symptoms is actually a good thing. Who wants symptoms? Oy, enough already. You have to let me know what happens May 3rd. As far as me, yes, I may have to have an MRI of the lumbar spine. My last one six months ago showed arthritis in the area that now has a pinched nerve. I do have an appointment for an assessment of the area, and hopefully, the doc will give me an epidural. If I manage to be pain free afterwards, I am going to have a party. And I'm not kidding!!!!!! I have been in severe pain for a year. I hope you are Ok today, and my thoughts are with you. May 3rd will come soon. Maybe some answers…. Lori Renee
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I found a great pair of winter shoes at Orthofeet.com that are designed specifically to help with neuropathy. For summer shoes I found two different styles of Brooks sneakers that are very comfortable.
@lorirenee1, Lori, I hope you are having less painful days with your feet. Sigh….I feel like I know what’s been going on with my feet more than the doctors do that I have seen so far. I have been trying to figure this out off and on since 2005. I have researched like a mad woman and my gut tells me I have CRPS. I really hope to heck that I am wrong. I have taken pictures of my feet this past week for documentation. Most of the time they feel cold to the touch and hurt the most in cold, damp weather. If I dangle my feet down and leave them in that position for a few minutes they turn a dusky purple color and get very cold. This brings on a lot of nerve pain. I also have pics of when they feel quite warm and turn red and look swollen. This happened 14 years ago when I had a slight ankle sprain and the pain was very disproportionate to what was only a minor injury. Then soon after the pain spread to my left foot. I saw many doctors who all had a different diagnosis and no one could really figure it out. I quit seeking treatment out of frustration and disappointment. My PCP was very kind and tried to get a referral to go to Mayo but of course it was denied by my HMO plan. I just lived with it and gradually through many, many years it got progressively better until this past January when my big toe started getting sore and soon all the crazy nerve, burning and all other symptoms erupted again. My Podiatrist was perplexed because my X-ray of left foot showed slight osteoarthritis and MRI looked pretty normal as well. I see the Neurologist on Friday and I will bring in these pics I took and I hope these will help In getting a definitive diagnosis. Let me know how you have been doing! -Laura
Hi Laura, I just read your message several times, to try to get a clue as to what is wrong with you. I also read about CRPS. One thing that strikes me that you do not have CRPS, is that I do not have a sense that it goes away. I could be wrong. Leaving for years and coming back is unusual for CRPS? Pain spreading from an injury, to an area not injured at all, does sound like it. Pain much more severe than what has happened with the injury itself does sound like it. The change of color in your feet due to weather makes me think you should check for Raynauds Syndrome, although I do not know if there is nerve involvement with Raynauds. I know you can be in intense pain, and that is so awful that my heart goes out to you. I am so glad you are going to the neuro doc. He will run a lot of blood tests and checking auto immunity for sure. Did something happen to you that you think may have triggered the return again? So stinkin' hard. As far as me, I live around my feet. Shoes on, shoes off, licocaine patches, CBD salves and drops, gabapentin, etc. My neuro doc made a compounding cream. Three hundred bucks for an ounce. Not that impressed. It does help my toes feel like they are not being yanked out of their sockets. Always a good thing. But my twenty five dollar salve works as good for the rest of the foot. Feet are decent today. Yesterday, I could have screamed most of the day if I were a nut job. They hurt like hell. Used all ammunition I had. Nothing worked too well. What can I say? FEET RULE. I don't.
@lorirenee1, what kind of salve did the compounding pharmacy make for you? I was going to see about an Amitriptyline and Ketamine compounded cream. I spent 136.00 for the strongest cbd/thc salve. It helps maybe just a bit. My feet never really got all the way better but definitely they became very manageable and I was able to be pretty active. I always had to wear certain shoes and changing to a different one was always a pain. Who knows…I’m just hoping I can get some answers from the neuro doc. I know it just takes time and trying to be patient. Meditation helps…I’m glad you are getting a few pain free days!! -Laura
Hi Laura, I really have to say that I do and don't like the compounding cream I have. It costs 300 bucks for an ounce, and I would never buy it again. There are about 12 ingredients in it, including ketamine, gabapentine, lidocaine, and I have no idea what else. All of my pain is in the balls of my feet and toes. That is it. The compounding cream makes my toes very stiff, which I don't like, but takes pain away. It is very good for pain in the ball of the feet. I have a CBD salve for 25 bucks that works better. My salve is fabulous for my gnarly, achey, toes. It makes them feel human again. Please, if you want info on the salve, let me know. I swear by it, but everyone is so different. I have had a revelation today, but it may change, because it seems nothing is consistent with neuropathic pain. It seems that shoes trigger either a good or bad day. If a shoe sets off pain, I am in trouble off and on, all day. Today I am wearing a pair of very open sandals. Sometimes I cannot even wear this shoe!!! God in heaven. You have just a few days before you see the doc. Did you have a catalyst that got your pain started again, after it was manageable? Let me know how it goes Friday. I cannot wait to get my epidural on the 15th. If I wind up without pain, I am throwing myself a party, after I stop crying….
@lorirenee1, yes I forgot to answer your question about how the pain began again. I started having a dull pain in big toe and under the ball of big toe. The Podiatrist took an X-ray and thought I had sesamoiditis. They put a large Metatarsal pad in my shoe along with some Superfeet orthotics. That really set everything into a huge raging flare. I could never wear orthotics or most shoes without stirring up pain before any of this happened. The Podiatrist ordered an MRI which said the sesamoid bones were “unremarkable”. The Podiatrist was on the fence concerning a CRPS diagnosis so he sent me to the Pain Specialist and the Pain Specialist is glad I requested from my PCP to get a referral to the neuro. Although the Pain guy doesn’t feel I have CRPS…I feel like I’m reliving the past going around and around again with doctors. They never performed a skin biopsy for sfn so that could be done as well. I had a herniated lumber L-3/4 disk when I was pregnant with my second son. After he was born I had an injection they did back in the 80’s called chymopapin which was derived from a papaya enzyme to shrink it. It is no longer done because in some cases that enzyme not only dissolved the disk but also nerves. Thankfully that did not happen! So, who knows, maybe there is a lumber spine issue. I had an MRI in 2005 of spine which was ok…God, I hope you feel a lot better on the 15th after that epidural!! You would definitely be experiencing tears of relief!!! It makes sense that it may help being that your toes and balls of feet are involved. My entire feet both hurt up to ankles with an added ball of foot and big toe pain. Thanks for listening and all of your sage advice! I appreciate it! -Laura
Please let me know about the CBD salve, my ball of my right foot and toes are always in severe pain along with both of my legs clear up into the thighs. I've had to teach myself to drive and deal with the pain. But I would love to get some kind of relief. Right now I'm on pain meds, lyrica and other meds but still in major pain. Please help me out.
Hi, @nanashelly – I'm sorry to hear that the ball of your right foot and toes are always in severe pain, along with your legs up to the thighs. If you are interested in a more expansive discussion of CBD and neuropathy, you might check out this thread on Mayo Clinic Connect https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy
Hi Laura, When I read what you just wrote, I really think you should get a brand new MRI of your lumbar spine, and an EMG. The EMG can pick up things about your spine that the MRI cannot pick up. I wonder if MacKenzie lower back exercises might help you, also. They consist of flexion and extension exercises for the lower back. Each of these kinds may feel differently to your feet, or you may feel nothing at your feet at all from doing them. Maybe research MacKenzie lower back exercises on youtube, especially after you get results of a new MRI and EMG, if that is what your neuro doc orders. In theory, MacKenzie exercises are for pain that radiates to legs and feet. You are just like me in not handling shoes at all. I was barefoot all day, till Physical Therapy this afternoon. Shoes can trigger horrific pain. I have to be very careful. Anyway, your appointment is 2 days away. Maybe answers will come. My very best to you. My Physical Therapy felt very good. I have been pain free for a few hours. Only time and prayers will tell….God Bless…..Lori
Nanashelly, I have two CBD products that I think are quite good. One is salve, from a company called anandahemp. They sell only one salve for 25 bucks, and it takes the pain in my feet away, and relaxes my contorted toes. It ships quickly. Go to anandahemp.com The other product is CBD drops you put under your tongue, from a different company. I get them from CBD distillery.com I use two different strengths of drops. The 2500 and the 1000 mg. drops. I get the ones that have a bit of THC in them. (The legal amount of marijuana that can be used in the CBD drops.) I find them very helpful to just relax me and take my brain away from pain. I use both the drops and salve at the same time. They are an incredible relief. My best to you., Very hard to have pain. Lori Renee
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