Mayo Clinic Connect
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.
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waterobics. i have been doing it for 30 years because i just can't function without it.
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?
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.
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.
Do you know what they r from?
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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Thank you so much for all of the wonderful advice. I am having a difficult time for sure. I will try these things.
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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Hi. My name is Dana. I am 43 and dont have words for the amazing similarities I have been finding in the posts of those fellow CRPS sufferers. I have to even resort to the microphones to type my messages because the pain it causes me to type with my fingers. I haven't put much about my story and what I've experienced with CRPS because it's just downright can be too physically painful. However I see how so very important it is that we reach out to each other in support and simply For the Love of our fellow men and women. I would be glad to share any details of my testimony and experiences with the hopes someone else May learn and mostly share encouragement that we are not alone. I am open to even phone calls or texts so we can get a better perspective. My name is Dana Stewart I am a 43 year old mother of a 12 year old and 6 year old. I live in the Atlanta Georgia area. Your contact or contact from anyone that shares our same disease is welcomed….
Hi Dana and welcome to Connect.
Thank you for all the support and information you are offering. Please note that I removed your personal email and phone number from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option. I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
Dana, you mention that you use voice activated technology to write your message because typing causes too much pain. What tool do you use? Your message has virtually no typos. I find the voice activated software to be quite unreliable and would like to know what you use.
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I didn’t know there is a ribbon for CRPS awareness. Thanks for sharing, and I hope you have more pain free days.
Hi I was wondering about the bone pain with the CRPS they believe I've had CRPS for the last 11 years but I just got diagnosed two and a half years ago the nerve pain is extremely bad but what I really can't stand is the ongoing bone pain it feels like somebody's literally chiseling away my phone in my right arm that's where my CRPS started and now I can feel it on my right side of my rib every breath I take in is extremely hard I have to take short breaths because if I take in a deep breath my ribs feel like the crumbling I've tried seeing doctors about the CRPS I live in Massachusetts and due to the major opiate epidemic he will not put me on medication I have tried everything under the sun to not be on narcotic pain medication but nothing has worked I am completely housebound and bedridden I cannot take a shower and get myself dressed I need help with everything I just got out of the hospital for suicide thoughts I am struggling really bad if anybody lives in Massachusetts when they are Rhode Island I've been trying to look for support groups in some type of doctor if anyone knows any I'm scared and suffering I'm only 36 years old and I have no quality of life if somebody knows of any support groups or anything that would be able to help can you please get back to me thank you so much
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