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Old 09-20-2018, 05:01 AM #331
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With time, I hope I will see some improvements, although I have come to accept my current state.

Welcome here. Accepting is a good step. You will see improvements, and/or better ways to cope or work "around" your condition.


As you may have read I saw big improvements. A few weeks ago I drove 1.100 km in one day (my wife did the other 350), even though 5 years ago I couldn't even drive to she nearby shop. Mind you, I do take painkilling meds, and I have to recover a few days after such a feat, so I'm far from cured or fully functional, but it's quite the difference from where I started.


The last 2 weeks I'm in pain again, but it doesn't drag me down anymore, as I know there will be good weeks as well. The condition does influence my life, but it no longer defines it.


And I still think getting sober was one of the smartest things I ever did in my entire life. Your mileage will not vary.
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Old 09-24-2018, 05:30 PM #332
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Welcome here. Accepting is a good step. You will see improvements, and/or better ways to cope or work "around" your condition.


As you may have read I saw big improvements. A few weeks ago I drove 1.100 km in one day (my wife did the other 350), even though 5 years ago I couldn't even drive to she nearby shop. Mind you, I do take painkilling meds, and I have to recover a few days after such a feat, so I'm far from cured or fully functional, but it's quite the difference from where I started.


The last 2 weeks I'm in pain again, but it doesn't drag me down anymore, as I know there will be good weeks as well. The condition does influence my life, but it no longer defines it.


And I still think getting sober was one of the smartest things I ever did in my entire life. Your mileage will not vary.
It sounds like your mind is in a good place. It is not easy to stay positive with all of this. Not letting chronic pain define you is not small feet.

Staying sober has been pretty wild. I miss having drinks, but staying sober is much more manageable than i could have imagined when I was first trying 2.5 years ago. It took a lot of work but it is paying off. The life I was living was just craziness. The drinking I miss, is what I was doing 10 years ago. The past 10 years ago I was just barely existing though.

Not sure how it is with you guys but for me my pain goes from being not too bad to just brutal. I notice interaction with people gets my endorphins going and that can help turn a bad day into a good one. I am on a high dose of gabapentin and am looking to get some help from the CBD area cause I am sick of being on meds that have bad side effects. I will report back to the group next month as I will be starting in a few weeks. I have low expectations but my neurologist is very much pushing me to drop the gaba for CBD. Thinks I should be able to have a trade off one for the other.

Also, I saw a chiropractor the other week. He was suggesting 3 weeks of therapy 2 X a week. Then evaluate if it is helping. What he did to me the first time was definitely painful. It was the first time I had anyone touching my feet and yikes. But I know there are millions of people that have to go through PT to get results every day. Waiting for me schedule to free up next month so that I can commit to the PT.

I am also trying to start to eat healthier this week. I lost a ton of weight since I stopped drinking but have put some back on. Sweets are doing it to me but I was told not to worry about them in my first year of sobriety. That makes sense for most people but with PN, i cant imagine being overweight is a good thing. Logically it would help to remove the need to support extra mass. So that's kind of the next thing to tackle.

Just tossing out random stuff here as I'm scatter brained from a heavy work day. I am very lucky to work from home. My wife last night asked me about having to go into the office and it's just not a good idea right now. Living in New York City i have lots of options transportation wise but 2 hours a day on subways is just an unnecessary challenge at this time.

Does anyone else experience restless leg type symptoms at night? That on top of the pain is really maddening.

Hope everyone is doing as well as the can be. Stay positive. Grateful that this thread exists.
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Old 09-25-2018, 12:15 PM #333
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Has anyone been officially diagnosed with small fiber neuropathy from a skin biopsy? Mine just came back positive. I also have moments where pain is manageable, but it seems to be progressing rapidly over the past 2 months. My legs and feet go from hot, to cold to just painful and I'm getting hot/cold sensations in other areas of my body. Anyone else experiencing these symptoms? Any recommendations for relief?
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Old 09-26-2018, 07:12 AM #334
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Has anyone been officially diagnosed with small fiber neuropathy from a skin biopsy? Mine just came back positive. I also have moments where pain is manageable, but it seems to be progressing rapidly over the past 2 months. My legs and feet go from hot, to cold to just painful and I'm getting hot/cold sensations in other areas of my body. Anyone else experiencing these symptoms? Any recommendations for relief?

No, in my case the diagnose was done with a nerve conduction velocity test - they send electrical signals through your nerves and measure the delay.


There are many types of neuropathy, and your symptoms sound very different from mine, so I'm not really sure what to recommend beyond the standard vitamin and nutrition tips. Hopefully someone else will chime in.
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Old 09-26-2018, 07:36 AM #335
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It sounds like your mind is in a good place. It is not easy to stay positive with all of this. Not letting chronic pain define you is not small feet.
Thanks, but it's almost a way of survival I suppose. I also suffer from tinnitus, another life-long condition that can drive you mad if you give in to it. Being stubborn can be bad, in in this case it's a life saver. I force my brain to ignore it (most of the time). Don't ask me how that works, if I knew I'd be rich!

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Staying sober has been pretty wild. I miss having drinks, but staying sober is much more manageable than i could have imagined when I was first trying 2.5 years ago. It took a lot of work but it is paying off. The life I was living was just craziness. The drinking I miss, is what I was doing 10 years ago. The past 10 years ago I was just barely existing though.
A very good point. Although I feel good about having escaped the madness, I'll never forget that a big part of the motivation was because drinking just didn't work anymore... So yeah, the "10 years ago" touches the right snare for me. There was this short period of time when it was fun, when it didn't go too far, when it had no direct consequences. Luckily, I know there's no going back there; starting again would be where I left off + worse.


Quote:
am looking to get some help from the CBD area cause I am sick of being on meds that have bad side effects. I will report back to the group next month as I will be starting in a few weeks. I have low expectations but my neurologist is very much pushing me to drop the gaba for CBD. Thinks I should be able to have a trade off one for the other.
I hope it works for you. I have experimented with it - high quality CBD oil - and sadly it didn't do much for me. Maybe I should have given it a longer try, but in the weeks that I took it I felt no difference. (then again, neither did gaba)


I also experimented with different kinds of weed & hash (legal-ish over here). I did notice that different strains have very different effects, and one of them indeed did temporarily reduce the pain to almost zero. Problem is: it was temporarily, and I wouldn't want to go through life "baked", nor do I want to replace one addiction for another one.

But, I guess I'm trying to say that there are many types of weed and oils, and it may be a case of finding the right one. Some of the weed just made me feel sleepy, others made me feel agitated and paranoid, and even the one that works against the pain made me feel uneasy. I just don't want to take any chances anymore, and value feeling "clear" over not feeling any pain. However, I would urge you to try it for yourself and give it a real shot. I know that for some people it's a half miracle, so just take my info as "n=1".

Quote:
I am also trying to start to eat healthier this week. I lost a ton of weight since I stopped drinking but have put some back on. Sweets are doing it to me but I was told not to worry about them in my first year of sobriety. That makes sense for most people but with PN, i cant imagine being overweight is a good thing. Logically it would help to remove the need to support extra mass. So that's kind of the next thing to tackle.
Eating healthy and losing weight (after 6 years I weigh 32kg less...from 128 to 96 being 6'7") worked very well for me, and seriously reduced the pain. But I only started tackling my weight after 9 months sober and feeling "solid" about sobriety. There's only so much we can do at the same time. But if you feel up for it; yeah, it works.

Quote:
Does anyone else experience restless leg type symptoms at night? That on top of the pain is really maddening.
Not anymore, but I did have that for 2 years before it turned into PN.


Don't worry about the scatterbrain thing BTW, most of us have been there. PN messes with your life, and getting sober is also a huge thing, so feel free to keep asking questions. Talking about it, and knowing there are others who deal with this helps. At least, it did for me!
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Old 09-26-2018, 09:42 AM #336
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No, in my case the diagnose was done with a nerve conduction velocity test - they send electrical signals through your nerves and measure the delay.


There are many types of neuropathy, and your symptoms sound very different from mine, so I'm not really sure what to recommend beyond the standard vitamin and nutrition tips. Hopefully someone else will chime in.
Did the nerve conduction pick up large fiber neuropathy in your case? My NCS & EMG were clean, the skin biopsy found small fiber damage.
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Old 09-27-2018, 02:20 AM #337
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Did the nerve conduction pick up large fiber neuropathy in your case? My NCS & EMG were clean, the skin biopsy found small fiber damage.

Yes, it did. In both legs it started about 10 cm below the knee right down to my toes. The doc was like "uh oh, almost no connection at all there sir". I know from reading here that in a way I was "lucky", as it's not as clear with most people - and with some even the skin biopsy doesn't show anything, and yet they do have all the symptoms of PN.


Yet I'm able to walk without anyone noticing. Don't ask me how that works, it beats me.
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Old 09-27-2018, 06:12 AM #338
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Yet I'm able to walk without anyone noticing. Don't ask me how that works, it beats me.
That is still my biggest gripe. I still walk with a bit of a gait (I walk on my heels). Even after all that dabbling in PT, balance exercises, etc....
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Old 09-27-2018, 05:26 PM #339
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Yes, it did. In both legs it started about 10 cm below the knee right down to my toes. The doc was like "uh oh, almost no connection at all there sir". I know from reading here that in a way I was "lucky", as it's not as clear with most people - and with some even the skin biopsy doesn't show anything, and yet they do have all the symptoms of PN.


Yet I'm able to walk without anyone noticing. Don't ask me how that works, it beats me.
Glad to hear you are doing better these days. Did you ever have pain or symptoms outside of your legs/feet? Sounds like for the most part your feet pain has decreased?
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Old 09-28-2018, 05:25 AM #340
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That is still my biggest gripe. I still walk with a bit of a gait (I walk on my heels). Even after all that dabbling in PT, balance exercises, etc....

I can imagine how that is not fun at all to live with. You probably - from previous conversations - have less pain than I have, but I can at least "hide" the whole thing to outsiders. (except when I have break-through pain, then I walk like a 104 year old...)



Did you completely stop the balance exercises?
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