[teachermom]

Hello everyone. I am new to the forum, but not to SFN. I started having the symptoms in spring 14. 4 doctors and one year later, I was diagnosed through skin punch biopsy with non-length dependent, idiopathic sfn.

I am a runner. As a matter of fact, the symptoms began while I was training for a half marathon. It has taken months, but I am finally back to my normal miles.

2 weeks ago, I called my neuro and asked if we could try a low-dose med to help me sleep through the burning pain at night. He prescribed 10 mg of amitriptyline at bedtime. I noticed a difference immediately. I couldn't believe how much better I was feeling. However, after about a week, I became very tired and dizzy. So, I quit taking it about 4 days ago. My energy is returning to normal, but the pain is incredible. It feels like my legs are full of toxins. I haven't been able to run for a few days because of the weather and I realize this is part of the problem.

Is there anyone who has been on amit. for an extended time? If so, did the dizzy tired symptoms get better?

[Cliffman]

Originally Posted by teachermom

Hello everyone. I am new to the forum, but not to SFN. I started having the symptoms in spring 14. 4 doctors and one year later, I was diagnosed through skin punch biopsy with non-length dependent, idiopathic sfn.

I am a runner. As a matter of fact, the symptoms began while I was training for a half marathon. It has taken months, but I am finally back to my normal miles.

2 weeks ago, I called my neuro and asked if we could try a low-dose med to help me sleep through the burning pain at night. He prescribed 10 mg of amitriptyline at bedtime. I noticed a difference immediately. I couldn't believe how much better I was feeling. However, after about a week, I became very tired and dizzy. So, I quit taking it about 4 days ago. My energy is returning to normal, but the pain is incredible. It feels like my legs are full of toxins. I haven't been able to run for a few days because of the weather and I realize this is part of the problem.

Is there anyone who has been on amit. for an extended time? If so, did the dizzy tired symptoms get better?

Hi Teachermom,

Sorry I was only on the amitirpyline for a few days because it did nothing other than make me extremely tired so I won't be of much help. That said, I am curious how you can run at all with SFN because in my experience it's extremely painful. You are very fortunate. Just walking a short distance is very difficult for me. My SFN came on very suddenly after having stents to treat a heart attack. It has spread to most of my body in a short 5 months starting in the hands. The pain is extreme.

I am sure someone will jump on here with some answers for you. BTW, There are several other drugs you can try that may not make you so tired. Also, In many instances that effect often goes away given time. I hope you get back to running asap.

All the best,
Cliffman

[zkrp01]

is the generic Ambien. I have used it for a couple of years and the only caution about it is to be ready for bed when you take it as I almost didn't make it into bed a couple of times. It is habit forming as with most sleep aids. In addition, if you have burning tender skin, I got relief from using Mortons Epsom Salt Lotion on my feet. Good Luck, Ken in Texas.

[teachermom]

Originally Posted by zkrp01

is the generic Ambien. I have used it for a couple of years and the only caution about it is to be ready for bed when you take it as I almost didn't make it into bed a couple of times. It is habit forming as with most sleep aids. In addition, if you have burning tender skin, I got relief from using Mortons Epsom Salt Lotion on my feet. Good Luck, Ken in Texas.

No, I don't think it is ambien. It's an old antidepressant. It is used for pain management. But I also have tight burning muscles. It seemed to have really helped that. Not sure it's worth the trade off.

[teachermom]

Originally Posted by Cliffman

Hi Teachermom,

Sorry I was only on the amitirpyline for a few days because it did nothing other than make me extremely tired so I won't be of much help. That said, I am curious how you can run at all with SFN because in my experience it's extremely painful. You are very fortunate. Just walking a short distance is very difficult for me. My SFN came on very suddenly after having stents to treat a heart attack. It has spread to most of my body in a short 5 months starting in the hands. The pain is extreme.

I am sure someone will jump on here with some answers for you. BTW, There are several other drugs you can try that may not make you so tired. Also, In many instances that effect often goes away given time. I hope you get back to running asap.

All the best,
Cliffman

Mine came on suddenly also during a long run on a Saturday. My legs just locked up and wouldn't move the right way. That night I had crazy pain my legs. I thought it was over training. This March, a full year after onset and 4 doctors later, I finally had a skin punch biopsy. The diagnosis was a relief, as one of the doctors told me it was all in my head and another one told me it was MS---no clinical evidence to support this. My current neuro has encouraged me to get back to running. It has been a slow and painful process. For the first month, it felt like I was running with tree trunks for legs and glass inside of my feet. I could barely make it a mile of jog/walking. However it seems to be paying off. My blood pressure is back to normal. I don't feel like I'm going to pass out all of the time. My legs feel pretty good unless I'm sitting or trying to sleep.

I'm sorry that you are experiencing this. I am grateful that my pain is bearable. I have had periods of pretty intense pain. I cannot imagine having it all of the time. I realize that it could be much, much worse. I'm also thankful to have found a place where I can ask questions. I try not to talk about this much in front of my friends. They just don't get it. When I first started back running, I had mentioned to a fellow runner how awful it felt with dead legs. She said, "We all have bad runs." I learned quickly to just shut it.

[kazzak21]

Originally Posted by teachermom

Hello everyone. I am new to the forum, but not to SFN. I started having the symptoms in spring 14. 4 doctors and one year later, I was diagnosed through skin punch biopsy with non-length dependent, idiopathic sfn.

I am a runner. As a matter of fact, the symptoms began while I was training for a half marathon. It has taken months, but I am finally back to my normal miles.

2 weeks ago, I called my neuro and asked if we could try a low-dose med to help me sleep through the burning pain at night. He prescribed 10 mg of amitriptyline at bedtime. I noticed a difference immediately. I couldn't believe how much better I was feeling. However, after about a week, I became very tired and dizzy. So, I quit taking it about 4 days ago. My energy is returning to normal, but the pain is incredible. It feels like my legs are full of toxins. I haven't been able to run for a few days because of the weather and I realize this is part of the problem.

Is there anyone who has been on amit. for an extended time? If so, did the dizzy tired symptoms get better?

Hi there. Great to find a fellow runner. I have yet to be diagnosed with anything specific. But have had most ruled out due to blood tests. I'm awaiting some nerve conduction studies.

I'm not a doctor but a physio. Pleased check with a relevant medical professional. I have taken 10mg of amitripyline on and off for a couple of years for neck and nerve problems. You need to take it earlier in the evening to counteract the dizziness effects, I find 6.30pm is about right. Start with half a tablet if better and build to 1. It helps me sleep with the nerve stuff and is an antidepressant taken at higher levels. Please don't take my advice unless checking with Dr or pharmacist.

I too am going to get gradually back into my running. Good luck.

[teachermom]

Originally Posted by kazzak21

Hi there. Great to find a fellow runner. I have yet to be diagnosed with anything specific. But have had most ruled out due to blood tests. I'm awaiting some nerve conduction studies.

I'm not a doctor but a physio. Pleased check with a relevant medical professional. I have taken 10mg of amitripyline on and off for a couple of years for neck and nerve problems. You need to take it earlier in the evening to counteract the dizziness effects, I find 6.30pm is about right. Start with half a tablet if better and build to 1. It helps me sleep with the nerve stuff and is an antidepressant taken at higher levels. Please don't take my advice unless checking with Dr or pharmacist.

I too am going to get gradually back into my running. Good luck.

It's so great to hear from a fellow runner. My prescription was for 25 mg. I was taking 1/2 of these per night. I think taking it earlier might be a good way to handle this. Maybe I should call and ask for a lower dose.

Good luck with your running. There were many times I just wanted to quit. I often would feel "sandpaper" in my shoes and my legs felt like tree stumps, but with each run things seemed to get a little easier. I am up to 20 miles per week now. But it took about 8 months to get here. I have only ran about 9 miles this week due to the weather. I can really tell a difference. My legs and feet have been on fire.

By the way, I had to have a skin punch biopsy for diagnosis.

[Littlepaw]

Hi,

I take nortriptyline which is the metabolite of amitriptyline and thus causes fewer side effects. I have had good relief with it for CRPS burning pain. At 25 mg it made me dizzy and I did not acclimate so we just decreased the dose to a tiny 10mg. It doesn't obliterate the pain but it definitely helps!

Amitriptyline has about the worst side effect profile for its class. You might consider switching to another TCA.

Congrats on running! That is amazing and awesome.

[boiler1993]

I am also a runner with non-length dependent idiopathic SFN - so sounds like we have some things in common. I think that the non-length dependent aspect is what allows running to be possible for me but I know my symptoms are mild in comparison to most on this forum and most of my symptoms that stick around more are in my trunk area and the running actually helps the sensitivity there (maybe just because other nerves are working?). I also read somewhere that exercise helps SFN because of the hierarchy in how nerves function not sure if anyone has seen this - where the physical activity is causing the large fiber nerves to work more which can reduce the overactivity to the small fiber ones. Not sure if this is true but I do know running helps some of my symptoms (although I do think it causes some burning in my feet after the fact).

Hope you find something that works for you so you can continue to run!

[baba222]

Originally Posted by teachermom

It's so great to hear from a fellow runner. My prescription was for 25 mg. I was taking 1/2 of these per night. I think taking it earlier might be a good way to handle this. Maybe I should call and ask for a lower dose.

Good luck with your running. There were many times I just wanted to quit. I often would feel "sandpaper" in my shoes and my legs felt like tree stumps, but with each run things seemed to get a little easier. I am up to 20 miles per week now. But it took about 8 months to get here. I have only ran about 9 miles this week due to the weather. I can really tell a difference. My legs and feet have been on fire.

By the way, I had to have a skin punch biopsy for diagnosis.

Hi there,
I have been on Amitriptylline for several months. Yes, the side effects leveled off for me after a couple of weeks. I have a hard time walking. The more I exercise, the worse I feel and the pain is yes, unbelievable to all but those how suffer with it.
I was diagnosed after several months with symptoms with skin punch biopsy. I have SFN all over now with no normal sensation. It is also painful to be touched, even lightly.
I too was told by many MDs that I was crazy.
So sorry that you are suffering.
Amitriptylline is sedating for me too. I too try to take it at least a couple of hours before bed.
Hope that helps.