Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

waterobics. i have been doing it for 30 years because i just can't function without it.

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@amomynous
I was thinking that was the way to go as I have CRPS in both feet, left knee, and left butt. I also need 90 degree water. Have PT script for 2-3 xs per week. How often do you go?

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I had that in my right foot extremely painful, I had 2 steroid shots in it (2 different times) then therapy
It did not get any better, we heat our home with wood so during cold season it does fine. Also use a tens unit on it that helps too. Try heating pad also. Hope this helps you.

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@lizzyisme

Sorry to hear about your health issues with CRPS, I too was diagnosed about 4 month ago. I had a TKR and developed CRPS in the knee area. I have had granular shots in the knee and use a cream and patch when nerves are active. This has helped very much. The concern for me is that I am starting to feel nerve pain on the opposite knee and breast. Did yours start in one place and spread?

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Yes, mine spread to other hand. Needles have caused permanent pain.

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@rsnowflake

Do you know what they r from?

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No clue

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In reply to mam14. Oh you poor dear. How difficult to have this pain over and over every day and no real answers. I have had some strange disease for eight years and still no definitive diagnosis, so I can understand so much of your frustration. I used to be a biochemist so I have done much research and there are a few things I can share: First of all, eat the very most nutrient dense foods that you can afford. Cutting out wheat really helped with inflammation. Cutting out processed foods is essential. If you cannot afford all organic foods, at least do the organic dairy and butter--because the toxins are in the fats. Stay away from vegetable oils (except olive oil) and other rancid fats. Feed your poor nerves with clean healthy fats so you can make healthy myelin sheaths. Eat wild salmon and take EFA, Vitamin D and Hyaluronic Acid. These are critical to your nerves.

I have an autoimmune disease so I eat good food to feed my microbiome in hopes it will knock off the bad guys! I got my disease after being given a series of rounds of Cipro and I believe it killed off all my good bacteria and the bad ones took over and the neurotoxins they produced may have caused my disease state. I use a product called Flora-Pro with Phage Technology by Life Extension and various soil based probiotics hoping to reinstate my original flora. I believe you will find that much current research is directed to the study of disease caused by neurotoxins produced by unfriendly gut bacteria. I sure don' t want any bad bugs putting out neurotoxins in my body! These neurotoxins wind up all over the body and even in the brain. The microbiome is an area of study that we will hear a lot more about in the near future.

Another thing that is very important is Magnesium. Beware of the cheapie stuff with Magnesium Oxide, etc...it causes diarrhea and it is not that well absorbed. Magnesium Threonate is very good and crosses the blood brain barrier and could very well help but the one that is proven to work for nerve pain is Magnesium Glycinate. It is not terribly expensive and worth a using. Magnesium is required for about 300 different chemical reactions and since most Americans are deficient, you probably are too. Also, take R Fraction Alpha Lipoic Acid and and Benfotamine, a better form of thiamine for nerves.

A third one that I do believe is helping is Palmitoylethanolamide. I actually get this one from Life Extension also. I am reading more and more about it on scientific abstracts from Google Scholar. It seems to make the brain less sensitive to pain signals and is not known to have any side effects. It is a natural product made by your own body, but greatly reduced in various pain states...It is neuro-protective and can stop reaction cascades before they cause damage. It also reduces IL-6, an inflammatory chemical. I take the Comfort-Max Double Action Nerve Support, which also has Honokiol (magnolia extract) in the night capsule. Honokiol is an anxiolytic which can help with sleep, but do not overdose on it as it could be toxic in large amounts. They also sell plain palmitoylethanolamide (P.E.A.) To read about PEA, may I suggest that you just google it in and read the Wickipedia article.. It is not too complicated and gives a good overview.

My best regards and prayers. JS

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@jsalsbery

In reply to mam14. Oh you poor dear. How difficult to have this pain over and over every day and no real answers. I have had some strange disease for eight years and still no definitive diagnosis, so I can understand so much of your frustration. I used to be a biochemist so I have done much research and there are a few things I can share: First of all, eat the very most nutrient dense foods that you can afford. Cutting out wheat really helped with inflammation. Cutting out processed foods is essential. If you cannot afford all organic foods, at least do the organic dairy and butter--because the toxins are in the fats. Stay away from vegetable oils (except olive oil) and other rancid fats. Feed your poor nerves with clean healthy fats so you can make healthy myelin sheaths. Eat wild salmon and take EFA, Vitamin D and Hyaluronic Acid. These are critical to your nerves.

I have an autoimmune disease so I eat good food to feed my microbiome in hopes it will knock off the bad guys! I got my disease after being given a series of rounds of Cipro and I believe it killed off all my good bacteria and the bad ones took over and the neurotoxins they produced may have caused my disease state. I use a product called Flora-Pro with Phage Technology by Life Extension and various soil based probiotics hoping to reinstate my original flora. I believe you will find that much current research is directed to the study of disease caused by neurotoxins produced by unfriendly gut bacteria. I sure don' t want any bad bugs putting out neurotoxins in my body! These neurotoxins wind up all over the body and even in the brain. The microbiome is an area of study that we will hear a lot more about in the near future.

Another thing that is very important is Magnesium. Beware of the cheapie stuff with Magnesium Oxide, etc...it causes diarrhea and it is not that well absorbed. Magnesium Threonate is very good and crosses the blood brain barrier and could very well help but the one that is proven to work for nerve pain is Magnesium Glycinate. It is not terribly expensive and worth a using. Magnesium is required for about 300 different chemical reactions and since most Americans are deficient, you probably are too. Also, take R Fraction Alpha Lipoic Acid and and Benfotamine, a better form of thiamine for nerves.

A third one that I do believe is helping is Palmitoylethanolamide. I actually get this one from Life Extension also. I am reading more and more about it on scientific abstracts from Google Scholar. It seems to make the brain less sensitive to pain signals and is not known to have any side effects. It is a natural product made by your own body, but greatly reduced in various pain states...It is neuro-protective and can stop reaction cascades before they cause damage. It also reduces IL-6, an inflammatory chemical. I take the Comfort-Max Double Action Nerve Support, which also has Honokiol (magnolia extract) in the night capsule. Honokiol is an anxiolytic which can help with sleep, but do not overdose on it as it could be toxic in large amounts. They also sell plain palmitoylethanolamide (P.E.A.) To read about PEA, may I suggest that you just google it in and read the Wickipedia article.. It is not too complicated and gives a good overview.

My best regards and prayers. JS

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@jsalsbery Welcome to Connect. You've shared a lot of good information. Magnesium is important for detoxification and most of us are deficient in it. You can also soak in an epsom salt bath to absorb magnesium through your skin. Reducing inflammation is so important to prevent disease. Cutting out inflammatory foods helps tremendously. Food really is medicine if you eat the right things.

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@jenniferhunter

@jsalsbery Welcome to Connect. You've shared a lot of good information. Magnesium is important for detoxification and most of us are deficient in it. You can also soak in an epsom salt bath to absorb magnesium through your skin. Reducing inflammation is so important to prevent disease. Cutting out inflammatory foods helps tremendously. Food really is medicine if you eat the right things.

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Good advice

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@jsalsbery

In reply to mam14. Oh you poor dear. How difficult to have this pain over and over every day and no real answers. I have had some strange disease for eight years and still no definitive diagnosis, so I can understand so much of your frustration. I used to be a biochemist so I have done much research and there are a few things I can share: First of all, eat the very most nutrient dense foods that you can afford. Cutting out wheat really helped with inflammation. Cutting out processed foods is essential. If you cannot afford all organic foods, at least do the organic dairy and butter--because the toxins are in the fats. Stay away from vegetable oils (except olive oil) and other rancid fats. Feed your poor nerves with clean healthy fats so you can make healthy myelin sheaths. Eat wild salmon and take EFA, Vitamin D and Hyaluronic Acid. These are critical to your nerves.

I have an autoimmune disease so I eat good food to feed my microbiome in hopes it will knock off the bad guys! I got my disease after being given a series of rounds of Cipro and I believe it killed off all my good bacteria and the bad ones took over and the neurotoxins they produced may have caused my disease state. I use a product called Flora-Pro with Phage Technology by Life Extension and various soil based probiotics hoping to reinstate my original flora. I believe you will find that much current research is directed to the study of disease caused by neurotoxins produced by unfriendly gut bacteria. I sure don' t want any bad bugs putting out neurotoxins in my body! These neurotoxins wind up all over the body and even in the brain. The microbiome is an area of study that we will hear a lot more about in the near future.

Another thing that is very important is Magnesium. Beware of the cheapie stuff with Magnesium Oxide, etc...it causes diarrhea and it is not that well absorbed. Magnesium Threonate is very good and crosses the blood brain barrier and could very well help but the one that is proven to work for nerve pain is Magnesium Glycinate. It is not terribly expensive and worth a using. Magnesium is required for about 300 different chemical reactions and since most Americans are deficient, you probably are too. Also, take R Fraction Alpha Lipoic Acid and and Benfotamine, a better form of thiamine for nerves.

A third one that I do believe is helping is Palmitoylethanolamide. I actually get this one from Life Extension also. I am reading more and more about it on scientific abstracts from Google Scholar. It seems to make the brain less sensitive to pain signals and is not known to have any side effects. It is a natural product made by your own body, but greatly reduced in various pain states...It is neuro-protective and can stop reaction cascades before they cause damage. It also reduces IL-6, an inflammatory chemical. I take the Comfort-Max Double Action Nerve Support, which also has Honokiol (magnolia extract) in the night capsule. Honokiol is an anxiolytic which can help with sleep, but do not overdose on it as it could be toxic in large amounts. They also sell plain palmitoylethanolamide (P.E.A.) To read about PEA, may I suggest that you just google it in and read the Wickipedia article.. It is not too complicated and gives a good overview.

My best regards and prayers. JS

Jump to this post

Thank you so much for all of the wonderful advice. I am having a difficult time for sure. I will try these things.

REPLY
@jsalsbery

In reply to mam14. Oh you poor dear. How difficult to have this pain over and over every day and no real answers. I have had some strange disease for eight years and still no definitive diagnosis, so I can understand so much of your frustration. I used to be a biochemist so I have done much research and there are a few things I can share: First of all, eat the very most nutrient dense foods that you can afford. Cutting out wheat really helped with inflammation. Cutting out processed foods is essential. If you cannot afford all organic foods, at least do the organic dairy and butter--because the toxins are in the fats. Stay away from vegetable oils (except olive oil) and other rancid fats. Feed your poor nerves with clean healthy fats so you can make healthy myelin sheaths. Eat wild salmon and take EFA, Vitamin D and Hyaluronic Acid. These are critical to your nerves.

I have an autoimmune disease so I eat good food to feed my microbiome in hopes it will knock off the bad guys! I got my disease after being given a series of rounds of Cipro and I believe it killed off all my good bacteria and the bad ones took over and the neurotoxins they produced may have caused my disease state. I use a product called Flora-Pro with Phage Technology by Life Extension and various soil based probiotics hoping to reinstate my original flora. I believe you will find that much current research is directed to the study of disease caused by neurotoxins produced by unfriendly gut bacteria. I sure don' t want any bad bugs putting out neurotoxins in my body! These neurotoxins wind up all over the body and even in the brain. The microbiome is an area of study that we will hear a lot more about in the near future.

Another thing that is very important is Magnesium. Beware of the cheapie stuff with Magnesium Oxide, etc...it causes diarrhea and it is not that well absorbed. Magnesium Threonate is very good and crosses the blood brain barrier and could very well help but the one that is proven to work for nerve pain is Magnesium Glycinate. It is not terribly expensive and worth a using. Magnesium is required for about 300 different chemical reactions and since most Americans are deficient, you probably are too. Also, take R Fraction Alpha Lipoic Acid and and Benfotamine, a better form of thiamine for nerves.

A third one that I do believe is helping is Palmitoylethanolamide. I actually get this one from Life Extension also. I am reading more and more about it on scientific abstracts from Google Scholar. It seems to make the brain less sensitive to pain signals and is not known to have any side effects. It is a natural product made by your own body, but greatly reduced in various pain states...It is neuro-protective and can stop reaction cascades before they cause damage. It also reduces IL-6, an inflammatory chemical. I take the Comfort-Max Double Action Nerve Support, which also has Honokiol (magnolia extract) in the night capsule. Honokiol is an anxiolytic which can help with sleep, but do not overdose on it as it could be toxic in large amounts. They also sell plain palmitoylethanolamide (P.E.A.) To read about PEA, may I suggest that you just google it in and read the Wickipedia article.. It is not too complicated and gives a good overview.

My best regards and prayers. JS

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Hi @jsalsbery and welcome to Connect.
I got a notice that you wanted to share a link with information for @mam14. JS: You will be able to add URLs in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.

"Article on the Palmitoylethanolamide https://neuropathie.nu/crps-dystrofie-/how-to-use-pea-in-crps.html. It is Dutch I believe....I am still using it and I think it helps a lot. Will send more info if I find anything food. JS"

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