1. < Neuropathy

I feel like Physical Therapy is making small fiber neuropathy 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.

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debjay | @debjay | Apr 16, 2019
In reply to @kklopfen "Question - I live in Houston, Texas and have been bounced around to doctors for what..." + (show)
@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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John, Volunteer Mentor | @johnbishop | Apr 16, 2019
In reply to @debjay "Hello @kklopfen I just want to say that I also live in the Houston area, have..." + (show)
@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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laura | @lauraj155 | Apr 16, 2019
In reply to @dancermurphy "Have you had a brain MRI ? Mine is tomorrow and it will be my last..." + (show)
@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!!

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@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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lorirenee1 | @lorirenee1 | Apr 16, 2019
In reply to @lauraj155 "@lorirenee1, I looked up the fatty acid that you are taking and it looks like you..." + (show)
@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

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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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2 replies
laura | @lauraj155 | Apr 17, 2019
In reply to @lorirenee1 "Laura, Not having a good foot day at all today, so God knows what works and..." + (show)
@lorirenee1

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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@lorirenee1, how are you doing? I hope today is much better! I still think it sounded like you were doing better overall. I think the bad days are to be expected but it’s tough when it hits us like a ton of bricks! A little like one step forward and two steps back at times...Hope to here what your NEURO says to you this week. Hang in there!!! -Laura

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lorirenee1 | @lorirenee1 | Apr 17, 2019

Hi Laura, Hi! I am much better today. There is utterly no rhyme or reason to these feet. How are yours today? Would you have ever imagined a life revolved around feet of all things? More specifically with me, toes? And with you, it sounds like the tops of the feet, where I have utterly no pain. It all depends where the nerve damage and death is. A real crap shoot. I wish you the best day you could have. My toes don't hurt, aren't feeling pulled out of their sockets; it's a good day! Lori Renee

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sharka | @sharka | Jul 26, 2022
In reply to @lorirenee1 "Laura, Not having a good foot day at all today, so God knows what works and..." + (show)
@lorirenee1

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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Lorirenee, are you using cbd only or thc as well?

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pnman | @pnman | Jul 26, 2022

Tell your therapist that due to the pain, time required etc., that you would like to target three exercises most valued for your condition. I was overwhelmed by the balance exercises I was given so asked my PT for the three she thought most essential. Focussing on those, my balance has improved and I find it unnecessary to do the exercises regularly. I think exercises must be individualized. There is no "one size fits all." A therapist should take into account such things as patient condition, tolerance, time available, etc. "Don't quit."

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jchet | @jchet | Jul 26, 2022
In reply to @johnbishop "Hi @lauraj155, I have not heard of PT being used as a treatment for small fiber..." + (show)
@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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Right now I just have swelling and numbness so I’m going to try PT to see if it will help eventually. Thanks for your comment.

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jchet | @jchet | Jul 26, 2022

Has anyone stopped taking their statin drugs to see if their Neuropathy improves. Some Drs. think that statins can cause N in some people.

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