I feel like Physical Therapy is making me worse.

Posted by laura @lauraj155, Apr 15, 2019

Hello everyone, I have been doing PT for the past three weeks for SFN. I don’t have numbness just tons of pain in both feet. I have been given stretching exercises to help with the pain and flexibility. The therapist wants me to do these exercises three to four times a day, 15 reps each and also increase my walking. My pain level has gone up significantly and I feel very frustrated because nerve pain seems to have a mind of its own. I am getting more searing pain on top of feet and more fasciculations. I feel as if I’m damned if I do and damned if I don’t move enough as well. I am asking the group if anyone has gone down this same road with PT. I really hate to stop it completely but sometimes I feel like I just have to listen to what the pain is telling me. Thanks for any advice.

Hi @lauraj155, I have not heard of PT being used as a treatment for small fiber neuropathy but I know that the PT will help slow down the muscle loss and help with the flexibility. I just don't know how it can help with the pain. I'm hoping other members will share their thoughts or experience with you. I can certainly understand your frustration and I do think we have to listen to what our body is telling us.

Are you on any medications for the pain?

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@johnbishop

Hi @lauraj155, I have not heard of PT being used as a treatment for small fiber neuropathy but I know that the PT will help slow down the muscle loss and help with the flexibility. I just don't know how it can help with the pain. I'm hoping other members will share their thoughts or experience with you. I can certainly understand your frustration and I do think we have to listen to what our body is telling us.

Are you on any medications for the pain?

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@johnbishop, hi John and thank you for your reply. I do take Gabapentin and Elavil for pain. Been on these for many years. I have been reading about the Protocol and have heard that R-ALA does help neuropathy. A few months ago I also had a high level of B6 in blood work but my PCP said he’s never had a patient with B6 toxicity. Something I will discuss with Neurologist in a couple weeks when I finally get to see him. I did order the R-ALA and magnesium. -Laura

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@lauraj155

@johnbishop, hi John and thank you for your reply. I do take Gabapentin and Elavil for pain. Been on these for many years. I have been reading about the Protocol and have heard that R-ALA does help neuropathy. A few months ago I also had a high level of B6 in blood work but my PCP said he’s never had a patient with B6 toxicity. Something I will discuss with Neurologist in a couple weeks when I finally get to see him. I did order the R-ALA and magnesium. -Laura

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Hi @lauraj155 — there is another discussion here on Connect about the Vitamin B6 toxicity that you may want to read about. Lots of info available on the problem/condition.

> Groups > Neuropathy > B-6 vitamin danger!
https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

Here's a link to a post in the discussion with a list of references that may be helpful for B6 toxicity which can cause neuropathy.
https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/?pg=3#comment-261420

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Question – I live in Houston, Texas and have been bounced around to doctors for what sounds like SFN. I have tingling and numbness in both feet, pain in my hands, some burning in one ear and tingling across one side of my face,some cramping in my feet and calves, etc. Is it worth flying to Mayo Clinic in Rochester, MN to get formally diagnosed and hopefully and treatment plan?? My internist says they are #1 in neurology and I should go. My only worry is that they'll just say take Lyrica, which I could just stay in Houston to hear. I'm hoping they will have some cutting edge treatment plan and I don't end up wasting my time and money. Has anyone gone there to be diagnosed and treated for this ? I heard someone say it can't really be treated if you don't know what caused it. Mine started 3 days after I had a simple procedure to have an amplazter occluder put in my heart to cover a hole. It was done through my groin like a stint. I suspected Plavix had something to do with it at the time, because my left arm went numb on day 3 of taking it after the procedure. I had the same thing happen when I took Leviquin for a sinus infection 2 years earlier and read that it could cause nerve damage and I got off of it and a few days later the numbness was gone. I thought maybe the Plavix was doing the same thing for some reason. However, my doctor refused to switch me to something else and after two weeks of a numb arm I told him I was not going to take any more and he finally changed me to Effient, which then pushed it to my feet. Finally, he just said I must not be able to tolerate it and just said take aspirin. I had hoped that my symptoms would've gone away, but two years later they have not and seem to be progressing. That is the only thing that I can think of that would've caused the SFN. Would that info. even be helpful in treating SFN? I am not overweight or have diabetes and so far have not tested positive for an autoimmune diseases, so I don't know what else could cause this??? Also, can SFN go into remission and how fast does it progress and does it always progress or could it just stay the way it is now? I'm 52 and thought I'd have another 20 years before ending up with some horrible disease:( I'm scared to think what I'm going to be like in another 5,10, 15 years! Would appreciate any information or advice. Thanks

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Hello @kklopfen, welcome to Connect. I have idiopathic small fiber peripheral neuropathy that was diagnosed by a Mayo Clinic neurologist at Rochester, MN. I've posted my story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I know it can be worrisome not knowing how the disease will progress and what you can do to improve your symptoms. I'm glad you found Connect as it is a great source of information from members who share similar health conditions. There are a couple of other discussions here on Connect which you may want to join in and post questions of other members who share similar symptoms.

> Groups > Neuropathy > Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I have no medical training or background as most of us here on Connect so I'm not sure any of us can provide a meaningful answer for your questions as much as I would like to. Each of us are different and while I believe the condition is a progressive one, it's different for each of us based on a lot of different factors including genetics, environment, diet, etc.. My best advice would be to learn as much as you can about every aspect of your health condition and keep asking questions. The more informed you are, the better questions you can ask your care team/doctors and hopefully the better treatment you will get.

My own personal opinion is that if I wanted to be sure of a diagnosis, Mayo Clinic Rochester would be a great place to come – especially since Winter is almost out of here ☺ If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

You mentioned you are afraid to think of what will happen in the next 5, 10 or 15 years. Have your doctors given you any diagnosis or run any tests?

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Laura, You absolutely should be listening to what the pain is telling you. If you hit yourself in the hand with a hammer, you would not keep hitting yourself! Your nerves are telling you that these exercises are wrong for them! These particular exercises are making them worse! That is not to say that you should stop everything, but stop what hurts! Absolutely stop! I feel for you! I really do! It is bad enough that you hurt naturally. Do not add insult to injury. Do not be a hero. Do what you can, but do not create more problems!!! Lori Renee

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@lorirenee1

Laura, You absolutely should be listening to what the pain is telling you. If you hit yourself in the hand with a hammer, you would not keep hitting yourself! Your nerves are telling you that these exercises are wrong for them! These particular exercises are making them worse! That is not to say that you should stop everything, but stop what hurts! Absolutely stop! I feel for you! I really do! It is bad enough that you hurt naturally. Do not add insult to injury. Do not be a hero. Do what you can, but do not create more problems!!! Lori Renee

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@lorirenee1, you are so right and I’m so happy that you responded! I have been thinking of you and hope that the Neurologist will offer you some help. I see mine on May 3rd. I also had a very high B6 elevation, the high end range was 125 and mine was 468! I have been off of the multi vitamin at least six weeks now. But, I’m hoping that things will calm down with time. I did order some R-ALA because I have heard that it can ease the neuropathy. Yes…I hear you about not trying to be the hero with all of this! But nerve pain is so crazy…I could take a walk and feel a little better one day but try it on a different day and I’m dying…let me know how things are going for you! -Laura

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@kklopfen

Question – I live in Houston, Texas and have been bounced around to doctors for what sounds like SFN. I have tingling and numbness in both feet, pain in my hands, some burning in one ear and tingling across one side of my face,some cramping in my feet and calves, etc. Is it worth flying to Mayo Clinic in Rochester, MN to get formally diagnosed and hopefully and treatment plan?? My internist says they are #1 in neurology and I should go. My only worry is that they'll just say take Lyrica, which I could just stay in Houston to hear. I'm hoping they will have some cutting edge treatment plan and I don't end up wasting my time and money. Has anyone gone there to be diagnosed and treated for this ? I heard someone say it can't really be treated if you don't know what caused it. Mine started 3 days after I had a simple procedure to have an amplazter occluder put in my heart to cover a hole. It was done through my groin like a stint. I suspected Plavix had something to do with it at the time, because my left arm went numb on day 3 of taking it after the procedure. I had the same thing happen when I took Leviquin for a sinus infection 2 years earlier and read that it could cause nerve damage and I got off of it and a few days later the numbness was gone. I thought maybe the Plavix was doing the same thing for some reason. However, my doctor refused to switch me to something else and after two weeks of a numb arm I told him I was not going to take any more and he finally changed me to Effient, which then pushed it to my feet. Finally, he just said I must not be able to tolerate it and just said take aspirin. I had hoped that my symptoms would've gone away, but two years later they have not and seem to be progressing. That is the only thing that I can think of that would've caused the SFN. Would that info. even be helpful in treating SFN? I am not overweight or have diabetes and so far have not tested positive for an autoimmune diseases, so I don't know what else could cause this??? Also, can SFN go into remission and how fast does it progress and does it always progress or could it just stay the way it is now? I'm 52 and thought I'd have another 20 years before ending up with some horrible disease:( I'm scared to think what I'm going to be like in another 5,10, 15 years! Would appreciate any information or advice. Thanks

Jump to this post

Have you had a brain MRI ? Mine is tomorrow and it will be my last test after EMG , neck and lumbar MRI ‘s and many blood test . They have to rules out MS and if it is not they will link it back to my neck surgery . I am doing PT , massage , Reiki to calm me down which has helped. I have it all over my body and makes me very sad as I am very fit 61 year old . I had my first cbd brownie and it helped me go to sleep . I was taking a few muscle relaxer ‘s and did not want to get addicted to those as they are addicting . I am on gabapentin time release called Horizant . One pill at night helps me not forget all day because it is not a good time if I do . I wish you peace and know there are a lot of us searching for answers!!

REPLY
@lauraj155

@lorirenee1, you are so right and I’m so happy that you responded! I have been thinking of you and hope that the Neurologist will offer you some help. I see mine on May 3rd. I also had a very high B6 elevation, the high end range was 125 and mine was 468! I have been off of the multi vitamin at least six weeks now. But, I’m hoping that things will calm down with time. I did order some R-ALA because I have heard that it can ease the neuropathy. Yes…I hear you about not trying to be the hero with all of this! But nerve pain is so crazy…I could take a walk and feel a little better one day but try it on a different day and I’m dying…let me know how things are going for you! -Laura

Jump to this post

Hi again, Laura, One thing I have learned; there is no rhyme or reason to neuropathy. I cannot count on a shoe being consistently comfortable, my feet pain feeling consistently the same way AT ALL…..so many things. I know it has gotten where my life revolves quite a bit around my feet, and I try as best I can to just keep busy. One thing I am taking that is helping, but it may be premature to talk about is the fatty acid palmitoylethanolamide (PEA) for short. It is taken for pain, does not interfere with meds, and you have to take it for about a month before you feel results. I have taken it about 3 weeks, and the last week, my pain is definitely less, but not consistently less, so I am giving it more time, and then will post to everyone. I take PEA CURE. You buy it on amazon. I am praying I get less pain on a consistent basis. Maybe give it a try. What is R-ALA? Never heard of it. Anyway, I go to my neurologist this Friday. I just had an abnormal EMG, so I look forward to talking to her. This all is just so hard. Anyway, do not do anything that makes things worse. You have enough to deal with. Please keep in touch. Let me know how your neuro appt. goes. Walk when you can. Don't when you can't!!!! God bless…..Lori Renee

REPLY
@lorirenee1

Hi again, Laura, One thing I have learned; there is no rhyme or reason to neuropathy. I cannot count on a shoe being consistently comfortable, my feet pain feeling consistently the same way AT ALL…..so many things. I know it has gotten where my life revolves quite a bit around my feet, and I try as best I can to just keep busy. One thing I am taking that is helping, but it may be premature to talk about is the fatty acid palmitoylethanolamide (PEA) for short. It is taken for pain, does not interfere with meds, and you have to take it for about a month before you feel results. I have taken it about 3 weeks, and the last week, my pain is definitely less, but not consistently less, so I am giving it more time, and then will post to everyone. I take PEA CURE. You buy it on amazon. I am praying I get less pain on a consistent basis. Maybe give it a try. What is R-ALA? Never heard of it. Anyway, I go to my neurologist this Friday. I just had an abnormal EMG, so I look forward to talking to her. This all is just so hard. Anyway, do not do anything that makes things worse. You have enough to deal with. Please keep in touch. Let me know how your neuro appt. goes. Walk when you can. Don't when you can't!!!! God bless…..Lori Renee

Jump to this post

@lorirenee1, I looked up the fatty acid that you are taking and it looks like you can take it with ala, an antioxidant, together for a synergistic effect. Alpha Lipoic acid is targeted for neuropathy caused by diabetes, which I don’t have but thinking it may be good for the pain. I am interested in finding anything I can consume naturally. That is great news that PEA may be helping you. It does take a bit of time to notice the effects with both of them. I will keep in touch! Laura

REPLY
@kklopfen

Question – I live in Houston, Texas and have been bounced around to doctors for what sounds like SFN. I have tingling and numbness in both feet, pain in my hands, some burning in one ear and tingling across one side of my face,some cramping in my feet and calves, etc. Is it worth flying to Mayo Clinic in Rochester, MN to get formally diagnosed and hopefully and treatment plan?? My internist says they are #1 in neurology and I should go. My only worry is that they'll just say take Lyrica, which I could just stay in Houston to hear. I'm hoping they will have some cutting edge treatment plan and I don't end up wasting my time and money. Has anyone gone there to be diagnosed and treated for this ? I heard someone say it can't really be treated if you don't know what caused it. Mine started 3 days after I had a simple procedure to have an amplazter occluder put in my heart to cover a hole. It was done through my groin like a stint. I suspected Plavix had something to do with it at the time, because my left arm went numb on day 3 of taking it after the procedure. I had the same thing happen when I took Leviquin for a sinus infection 2 years earlier and read that it could cause nerve damage and I got off of it and a few days later the numbness was gone. I thought maybe the Plavix was doing the same thing for some reason. However, my doctor refused to switch me to something else and after two weeks of a numb arm I told him I was not going to take any more and he finally changed me to Effient, which then pushed it to my feet. Finally, he just said I must not be able to tolerate it and just said take aspirin. I had hoped that my symptoms would've gone away, but two years later they have not and seem to be progressing. That is the only thing that I can think of that would've caused the SFN. Would that info. even be helpful in treating SFN? I am not overweight or have diabetes and so far have not tested positive for an autoimmune diseases, so I don't know what else could cause this??? Also, can SFN go into remission and how fast does it progress and does it always progress or could it just stay the way it is now? I'm 52 and thought I'd have another 20 years before ending up with some horrible disease:( I'm scared to think what I'm going to be like in another 5,10, 15 years! Would appreciate any information or advice. Thanks

Jump to this post

@kklopfen My thoughts are since your pain started after a surgical procedure, it could be related to internal fascial scar tissue that is connected to a surgical scar. All surgeries will cause tight internal tissue. You can explore that with a physical therapist who does myofascial release work and see if it helps. I do a lot of MFR work. I am a spine surgery patient and also have thoracic outlet syndrome which is an entrapment issue. There can be places in the body where nerve entrapment is a physical problem that causes pain and sometimes it is positional in how it brings on the symptoms. Here is a discussion where there is some detailed information about MFR. You can stay in Texas and try this.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@kklopfen

Question – I live in Houston, Texas and have been bounced around to doctors for what sounds like SFN. I have tingling and numbness in both feet, pain in my hands, some burning in one ear and tingling across one side of my face,some cramping in my feet and calves, etc. Is it worth flying to Mayo Clinic in Rochester, MN to get formally diagnosed and hopefully and treatment plan?? My internist says they are #1 in neurology and I should go. My only worry is that they'll just say take Lyrica, which I could just stay in Houston to hear. I'm hoping they will have some cutting edge treatment plan and I don't end up wasting my time and money. Has anyone gone there to be diagnosed and treated for this ? I heard someone say it can't really be treated if you don't know what caused it. Mine started 3 days after I had a simple procedure to have an amplazter occluder put in my heart to cover a hole. It was done through my groin like a stint. I suspected Plavix had something to do with it at the time, because my left arm went numb on day 3 of taking it after the procedure. I had the same thing happen when I took Leviquin for a sinus infection 2 years earlier and read that it could cause nerve damage and I got off of it and a few days later the numbness was gone. I thought maybe the Plavix was doing the same thing for some reason. However, my doctor refused to switch me to something else and after two weeks of a numb arm I told him I was not going to take any more and he finally changed me to Effient, which then pushed it to my feet. Finally, he just said I must not be able to tolerate it and just said take aspirin. I had hoped that my symptoms would've gone away, but two years later they have not and seem to be progressing. That is the only thing that I can think of that would've caused the SFN. Would that info. even be helpful in treating SFN? I am not overweight or have diabetes and so far have not tested positive for an autoimmune diseases, so I don't know what else could cause this??? Also, can SFN go into remission and how fast does it progress and does it always progress or could it just stay the way it is now? I'm 52 and thought I'd have another 20 years before ending up with some horrible disease:( I'm scared to think what I'm going to be like in another 5,10, 15 years! Would appreciate any information or advice. Thanks

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Hello @kklopfen I just want to say that I also live in the Houston area, have been bounced around to doctors for several years and still do not have a diagnosis after much genetic testing. My Neuromuscular doc has suggested Mayo in Rochester. Message me if you want to compare notes – perhaps we have both been tossed around among the same doctors.

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@debjay

Hello @kklopfen I just want to say that I also live in the Houston area, have been bounced around to doctors for several years and still do not have a diagnosis after much genetic testing. My Neuromuscular doc has suggested Mayo in Rochester. Message me if you want to compare notes – perhaps we have both been tossed around among the same doctors.

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Hi @debjay, welcome to Connect. Thank you for posting and joining the discussion. It really helps when members with similar symptoms and conditions can share their personal experience. Have you also been diagnosed with small fiber neuropathy?

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@dancermurphy

Have you had a brain MRI ? Mine is tomorrow and it will be my last test after EMG , neck and lumbar MRI ‘s and many blood test . They have to rules out MS and if it is not they will link it back to my neck surgery . I am doing PT , massage , Reiki to calm me down which has helped. I have it all over my body and makes me very sad as I am very fit 61 year old . I had my first cbd brownie and it helped me go to sleep . I was taking a few muscle relaxer ‘s and did not want to get addicted to those as they are addicting . I am on gabapentin time release called Horizant . One pill at night helps me not forget all day because it is not a good time if I do . I wish you peace and know there are a lot of us searching for answers!!

Jump to this post

@dancermurphy, I’m so sorry for everything you have been through and it sounds like you are working very hard to find relief. You said that your pain may have been caused by your neck surgery. I had a lumbar herniated disk when I was in my late twenties and after that ordeal I hurt in many areas and was told later that it was Fibromyalgia. That condition is helped very much by massage for me and swimming, especially in a warm pool. I wish you the very best and so hope your pain will calm down soon!! -Laura

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@lauraj155

@lorirenee1, I looked up the fatty acid that you are taking and it looks like you can take it with ala, an antioxidant, together for a synergistic effect. Alpha Lipoic acid is targeted for neuropathy caused by diabetes, which I don’t have but thinking it may be good for the pain. I am interested in finding anything I can consume naturally. That is great news that PEA may be helping you. It does take a bit of time to notice the effects with both of them. I will keep in touch! Laura

Jump to this post

Laura, Not having a good foot day at all today, so God knows what works and what does not. Feeling very discouraged. Maybe tomorrow will be better again. Thank God for my CBD drops. This is not an easy things. Just not easy. Later….Lori Renee

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