[boiler1993]

Hi All,
I have a question about exercise and SFN. I was previously diagnosed with non-length dependent SFN due to most of my symptoms being discomfort in the trunk area to clothing and dripping feelings in my legs - I never had the typical foot problems. Well recently I have noticed that when I wake up in the morning my feet burn slightly. It usually dissipates throughout the morning. Well furthermore I am a runner and that has never been a problem but now it seems that when I run the burning will come on that day and worse the next day - is this something that is most likely caused by the neuropathy? While I am running I have not had problems only after.

Also with the mild burning being a fairly new symptom should I be concerned that this might be progressng? I am on Lyrica and have not had very much trunk sensitivity since but the feet burning seems unaffected...why would this be?

[Sven]

Hi boiler,

Pretty new on the board but thought I would relay my experience with my PN.

My neuropathy came on last September and mostly affected my hands and slightly my feet. I am an avid runner also and continued to run throughout the experience without much displeasure or pain from running. Unfortunately this past January I started feeling more pain in my legs and feet...especially more burning on the bottoms of my feet instead of just the tops and I felt as though the running irritated or cause my neuropathy to get worse. That's just my opinion I am now doing more yoga and elliptical type training that is not so pounding on my body. I noticed if I did go for run...my symptoms were much worse That evening and also the next day. Sometimes it felt unbearable. So now I feel a little bit better on my feet if I don't do a pounding type of workout on them. I haven't run now for about two months.

My PN is idiopathic as of now...it seems to come on in attacks and I have had the initial one and then the one yhat hit my feet so hard at the beginning of the year. I miss running and hopefully it gets better and can start again someday.

My personal opinion is that running I did caused more symptoms to precipitate.

Let us know and I hope you get better and can continue the running.

Sven

[Healthgirl]

Originally Posted by boiler1993

Hi All,
I have a question about exercise and SFN. I was previously diagnosed with non-length dependent SFN due to most of my symptoms being discomfort in the trunk area to clothing and dripping feelings in my legs - I never had the typical foot problems. Well recently I have noticed that when I wake up in the morning my feet burn slightly. It usually dissipates throughout the morning. Well furthermore I am a runner and that has never been a problem but now it seems that when I run the burning will come on that day and worse the next day - is this something that is most likely caused by the neuropathy? While I am running I have not had problems only after.

Also with the mild burning being a fairly new symptom should I be concerned that this might be progressng? I am on Lyrica and have not had very much trunk sensitivity since but the feet burning seems unaffected...why would this be?

How long have you had the symptoms?
I used to do interval training and run sprints every day. I started to become weaker and have autonomic symptoms that wouldn't allow for the intensity, but just thought it was hormonal or maybe a thyroid issue until the pain set in. Mine probably took years to develop but I was always strong and healthy until about 2 years ago when it hit me hard. It got to the point that I started to notice a huge increase in pain the night and up to two days after a work out. I ignored the pain and pushed myself through grueling work outs that became more and more difficult (even the ones that used to be easy).Then it got to the point that I actually could not do reps or run. Everything just became worse week by week. It upsets me so much that I can't exercise. I try to go for walks and do light stretches and have to be very careful with my body. I feel like I am 80 years old. I'm still hoping for healing though and think if I am patient and listen to my body, this will get better. It is not as bad as it was, so that is a good sign.
I did some reading about muscle recovery from exercise when the mitochondria are sick. Supposedly it takes much longer when people suffer from CFS, nerve disease, and other illnesses for the repair and recovery of a work out than in a healthy person. I know that to be true for myself for sure.

[boiler1993]

Sven - I feel like we are similar in some ways. When I first had symptoms, I would only have pain when provoked and by provoked I mean I was rowing crew in college and whenever we did any interval sprint type training I would have an extreme electricity/stinging cover my body when I stopped (odd right) but it was very brief maybe 60 seconds and then would stop - I also had that water running down the legs feeling at random times. Then about a year later I started have sensitivity to my clothes at random times for random periods of time (could be a day, could be months). Most recently, about 8 months ago I moved from college to texas and I had A LOT of sensitivity that was relentless and that's when I went back to medication. Since then I had been doing better until recently with the burning in my feet (which is new for me), more water feelings still (this is always provoked by heat), and some sensitivity returning. I do also have autonomic involvement (tacchycardia which is controlled by beta blockers) and I have reduced sweat production in some spots (according to a QSART). I am thinking it may be time to have a second biopsy to see if what I am seeing externally with symptoms is related to a worsening in nerve fiber density -I too am idiopathic thus far but being 22 I want to find the cause if this is progressing for sure.

Healthgirl - symptoms started about 4 years ago when I was 18. First signs were actually large fiber which has since disappeared (no neuro understands why) and the water trickling on the legs feeling - I was so convinced that I used to pull up my jeans to look for what was dripping. Then I had pretty intense pain when we did interval training for the crew team. But only as soon as we would end a "sprint" my entire body would sting/feel electrocuted. Then the next year I had the sensitivity to clothing appear which would come in spurts for days or months at a time. I also have tacchycardia which is controlled by a beta blocker and reduced sweat production. On and off sensitivity the past few years and then when I moved after college to Dallas I had continuous sensitivity for months sometimes pretty uncomfortable so I started Lyrica which helped pretty well for a few months but now I am wondering if my symptoms were just in a lull as sensitivity has returned somewhat and feet burning has happened along with the water feelings when it is warm out. I said this to Sven but I am thinking it is time for a second biopsy to see if my symptoms are telling me what I think - that the nerves are getting worse/less dense. I am 22 and if this is progressing then I want to do everything I can to find out what is causing it.

Thank you for your replies

[DHCKris]

Boiler1993, my symptoms also started when I was young, about 21 and I'm 24 now. I don't have a diagnosis yet (no biopsy) but I was telling myself it can't be SFN like my doctor thinks because I'm too young. Now I have to admit I'm a little disheartened by your story, knowing that I can no longer tell myself that, but I also feel less alone, so hey, maybe that cancels out. I'm still not convinced it's SFN though because I do not have pain, only tingling, numbness and twitching, and it actually seems to improve when I run.

I am extremely scared and I would love to hear if you ever figure out what's wrong. There's gotta be something making us have this at such a young age.

[caroline2]

Maybe the body doesn't like running and this is telling you something. I exercised all my life into 60s and I'm 78 soon but never a runner. Could never understand all that running and beating up the body. I did enough with what I did and now payiing big time. Bodywide OA starting at 18, so a long time.

[teachermom]

Originally Posted by boiler1993

Hi All,
I have a question about exercise and SFN. I was previously diagnosed with non-length dependent SFN due to most of my symptoms being discomfort in the trunk area to clothing and dripping feelings in my legs - I never had the typical foot problems. Well recently I have noticed that when I wake up in the morning my feet burn slightly. It usually dissipates throughout the morning. Well furthermore I am a runner and that has never been a problem but now it seems that when I run the burning will come on that day and worse the next day - is this something that is most likely caused by the neuropathy? While I am running I have not had problems only after.

Also with the mild burning being a fairly new symptom should I be concerned that this might be progressng? I am on Lyrica and have not had very much trunk sensitivity since but the feet burning seems unaffected...why would this be?

I am a runner and per my neuro's advice, I am continuing to run. When my symptoms first started I also had another health issue that kept me from running for several months. I noticed that my autonomic symptoms are/were far worse when I don't run. My SFN is progressive whether or not I run. Unlike you, I actually have fewer symptoms at night when I have ran that day, except for my thighs, which are always on fire. Mine started with severe spasms all over, the burning came later.


I hate that you are so young and experiencing this.

[onebeed]

Running? OMG. That's all I can say.

[boiler1993]

DHCkris - I will definitely let you know if I ever find a cause. I definitely had the same mind set as you - I am TOO young to have idiopathic neuropathy! Somtimes I still don't believe it. Please do the same and let me know how you are doing! My first skin biopsy was kind of a mix of normal and abnormal so I am considering a second to see how it compares (you have prob seen past posts about how 2 biopsies in so much better info wise than 1 - it is still not my favorite test though as I hate needles). I definitely get the alone thing - you don't happen to be located in texas do you? Then we wouldn't be so alone after all. The running probably helps because as my doc says "the normal sensations over power the abnormal ones".
If you don't mind me asking - where do you experience your pain and what kind of pain/how painful is it? I only ask because I am looking for similarities between us as it seems to be rare in young people.

Caroline2 - It along with tennis are my two favorites.I know it is demanding on the body but for me it is my time to mentally relax and let go. It is very good for stress and I think that when it doesn't cause my feet to burn it actually does help with the clothing sensitivity for me (although this probably has more to do with running's stress relieving properties)

teachermom - I remember your first post because I was excited to see someone else asking questions about running! I do often feel better overall when I have been running as I said to Caroline I think for me it is because it helps with any stress from that day. Yes for me this way never a problem until my feet started to bother me. And I think that I have a large variety of symptoms but for the most part my level of pain experienced is much lower than many on this site - the fact that I can still run is probably a testament to that. Do you have any foot pain at all? Or it it all upper leg?

onebeed - Haha like I said I will try to maintain it as long as possible. Unfortunately (before I had ever had ANY problems with running) - I signed up for a marathon (my first) and I am so excited...now I a hoping this doesn't get worse before then

[DHCKris]

Boiler1993, I'm in New York, not Texas, unfortunately. What's good though is I recently learned that Weill Cornell Medicine in NYC has a whole Neuropathy Center with some of the best doctors for diagnosing and treating neuropathy. I made an appointment for June.

I'm still not convinced that what I have is neuropathy though because I really don't have pain at all. I have body-wide tingling and fasiculations (twitching). My eyes, groin, chest, ribcage, buttocks, thumb, toes, ankles all twitch.

The tips of my big toes are numb (I've lost about 90% of feeling) and I get little tingling and "shock" feelings through my toes, heels, ankles and left knee and thigh. It's like a tingle that jumps around these areas. Honestly I probably wouldn't notice it or think it was abnormal if it weren't for the toe numbness, so I would say that's my main symptom. The tingling can get pretty intense, but it's never PAINFUL. My feet get sore easily around the numb parts, but it's like a normal "sore foot" feeling, not like a burning sensation, though I do get very slight burning/cold feelings in my feet and legs sometimes too.

I have quite severe scoliosis but my doctors feel confident there is no nerve impingement or CNS issue that's causing this, or anything related to my spine. Still though, I can't help but wonder if scoliosis is the culprit in an indirect way - like it definitely messes with the alignment of my legs, since my hips are slightly askew, and it alters my balance and my gait. I wonder if many years of walking "funny" with a crooked back has caused nerves in my feet and legs to get compressed. My doctors think it's plausible but they told me I should see a neuro who specializes in neuropathy to do a biopsy, so that's my next step.

I know I should consider myself lucky to not have pain, but I want to avoid this progressing if it truly is SFN. I'm terrified of that happening because I'm so young and because my life is really great otherwise right now. New job, new living situation. Plus, I have a lot of health anxiety and tend to obsess over these things, which isn't good. As soon as I noticed my toes were numb it triggered health anxiety that has yet to go away. Really, I would say the anxiety is my worst symptom, but I'm getting that under control too, thankfully. I just want to feel like a normal person again! I'm sure you feel the same.