It is difficult & it changes who you are. I was an on the go person & I would push thru difficult things. I have to know now that it's a different phase of my life. I do find when I do something, my pain is less, especially when it's meaningful. I have led a group called Hopekeepers for years and, like this group, we know what we mean when we say we have pain. I do other volunteering too. But when I hit the wall (can't do anything) I rest. The first 10 years were the hardest - not that the pain was worst but I had to figure it all out. You can't help feeling like you don't want to go on some days but I think it's important to find something you can do & take baby steps.
Appreciate your perspective. I'm still in the "figuring out phase" with about 6 years on this journey. It can be so debilitating when you hit the wall and are forced to rest and regroup over and over again. Baby steps…!
Only using Acetametaphin occaisionally. No other pain meds. They have many side effects so I manage without. Some days, hours or minutes are worse, but at least we aren't using lots of pain (addictive) medication.
I mostly put up with it. Was using lots of Gabapentin but have gotten off of that now..
Hello @growyourflow, welcome to Connect. You did pose an interesting question. I have had small fiber peripheral neuropathy for over 15 to 20 years. I do take a lot of supplements and one that I take sodium stablized Alpha Lipoic Acid mentions helps with blood flow. I don't have a medical background or any training but have done a lot of my own digging and searching for answers. I only have numbness with my neuropathy - no pain. The one thing I've found is that all of the drugs for neuropathy only address the pain...and they do that by masking it and not really fixing anything.
I did do a search on http://scholar.google.com which does give you the ability to refine the search so you can look for the latest information on your topic, etc.. I used the search phrase - increase blood flow for neuropathy and it found quite a bit of info:
I ,too, have Peripheral Neuropathy with increasing numbness but no pain for 6 or 7 years. I feel that the best thing I can do is keep up my muscle strength and circulation in order to deal with the problem. So, I too take a lot of Shaklee Supplements and go once a week for a massage on my feet and legs. I'm 95 and in good health other than the Neuropathy.
Hi John, You told your doctor that "statins make neuropathy worse". I have stopped taking lipitor since July 4th with great results in cycling after about 5 weeks. Rode like 3-7 years ago. Now 9/20 its back to being way behind the group going uphill. Seeing my cardiologist Friday who will say its all normal changes with neuropathy and has nothing to do with the statin. Back to your statement that I still agree with. Did you read that somewhere - where or was it your experience. I need some ammunition.
Hi Bob (@downhillbob), There is not much doubt in my mind but I think it's always a good idea to do some research. Here are the links I found when I was researching the long term affects of statins.
I'm sure there are more if you want to do a search. I would recommend Google Scholar (https://scholar.google.com/) as you can locate the newest information by clicking on the year 2017 link at the left of the list of links it finds on your search terms.
Hello @growyourflow, welcome to Connect. You did pose an interesting question. I have had small fiber peripheral neuropathy for over 15 to 20 years. I do take a lot of supplements and one that I take sodium stablized Alpha Lipoic Acid mentions helps with blood flow. I don't have a medical background or any training but have done a lot of my own digging and searching for answers. I only have numbness with my neuropathy - no pain. The one thing I've found is that all of the drugs for neuropathy only address the pain...and they do that by masking it and not really fixing anything.
I did do a search on http://scholar.google.com which does give you the ability to refine the search so you can look for the latest information on your topic, etc.. I used the search phrase - increase blood flow for neuropathy and it found quite a bit of info:
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@johnbishop Yippee another coconut oil fan!!! Thanks, I needed to lighten up. Currently using lemon oil as I need a cleansing.
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2 ReactionsAppreciate your perspective. I'm still in the "figuring out phase" with about 6 years on this journey. It can be so debilitating when you hit the wall and are forced to rest and regroup over and over again. Baby steps…!
Only using Acetametaphin occaisionally. No other pain meds. They have many side effects so I manage without. Some days, hours or minutes are worse, but at least we aren't using lots of pain (addictive) medication.
I mostly put up with it. Was using lots of Gabapentin but have gotten off of that now..
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1 Reactionwould exercise help? I am sometimes off balance
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2 ReactionsHello @homdee3041 - I think exercise is always a good thing if you are able to do it. Here are a few links that may help:
National Institutes of Health - Benefits of exercise intervention in reducing neuropathic pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983517/
Foundation for Peripheral Neuropathy - Exercise & Physical Therapy for Peripheral Neuropathy
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/
Balance Exercises for Neuropathy:
https://www.sitandbefit.org/balance-exercises-neuropathy/
John
Thank you very much for the information. I will read all and hope to be included in and future conversation.
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1 ReactionI ,too, have Peripheral Neuropathy with increasing numbness but no pain for 6 or 7 years. I feel that the best thing I can do is keep up my muscle strength and circulation in order to deal with the problem. So, I too take a lot of Shaklee Supplements and go once a week for a massage on my feet and legs. I'm 95 and in good health other than the Neuropathy.
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1 ReactionHi John, You told your doctor that "statins make neuropathy worse". I have stopped taking lipitor since July 4th with great results in cycling after about 5 weeks. Rode like 3-7 years ago. Now 9/20 its back to being way behind the group going uphill. Seeing my cardiologist Friday who will say its all normal changes with neuropathy and has nothing to do with the statin. Back to your statement that I still agree with. Did you read that somewhere - where or was it your experience. I need some ammunition.
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1 ReactionHi Bob (@downhillbob), There is not much doubt in my mind but I think it's always a good idea to do some research. Here are the links I found when I was researching the long term affects of statins.
STATINS MAKE PN WORSE
The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8
I'm sure there are more if you want to do a search. I would recommend Google Scholar (https://scholar.google.com/) as you can locate the newest information by clicking on the year 2017 link at the left of the list of links it finds on your search terms.
John
Good for you. That is wonderful. I will check into Shaklee Products and foot message, Thank you
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