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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 3 hours ago | Replies (404)

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@johnbishop

Hi Don, I've had some pretty awful pain from polymyalgia rheumatica which my Mayo rheumatologist and primary care docs have been great in helping me keep in in check. I've never faced the pain of arachnoiditis so I don't think I know enough about it other than how to do research on what folks have been using for treatments. I was pretty bummed out after being diagnosed with idiopathic small fiber neuropathy and finding out from my Mayo neurologist that there are no treatments, drugs or topicals that help with the numbness that I have. I only have numbness but was faced with it continually progressing which is why I joined Connect and started searching for something to help me and learning what helps other members. I think the best advice I can give is to learn as much as you can about your condition and arm yourself with better questions when meeting with your doctors and specialists - which will hopeful help them come up with a better treatment plan.

I'm tagging @jenniferhunter who has a lot of experience and knowledge on spine issues and hoping that she can share her thoughts with you.

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Replies to "Hi Don, I've had some pretty awful pain from polymyalgia rheumatica which my Mayo rheumatologist and..."

Many topical ointments that works.. CRYODerm roll on.. Amish Origins Deep Penetrating Ointment, Willow Bark Cream.. Magnesium lotion for Small Fiber Neuropathy and AA..

@donfeld @johnbishop I waited to answer so I could ask my physical therapist about this if myofascial release could help. She said that diet is important in reducing inflammation because inflammation makes tissue sticky which is the problem with AA. She said that there are some dural glides and craniosacral work techniques that can help and a therapist who knows how to do myofascial release will know how to do these techniques. I looked over the documents of Dr. Tennant and that makes sense to me. A lot of diseases start with inflammation. For example, hardened arteries start first with inflammation within the wall of the vessel itself, and later plaque and calcification attach to that on the inside surface and begin to clog the blood flow. Reducing inflammation goes a long way toward preventing a lot of disease. This is the way we all should eat anyway with lots of vegetables, quality proteins, and heart healthy fats and avoid the carbs and sugars. Here is or discussion on MFR. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/ You can search for a provider at https://myofascialrelease.com/find-a-therapist/

I am a cervical spine surgery patient and prior to my surgery, my therapist was using a Dolphin Neurostimulator on the nerve roots in my neck to block the neurotransmitters for the pain signals. This did reduce pain for me and relieve muscle spasms for about a week. Also, there are other pelvic alignment issues that could add to the problems, and physical therapy can help physical alignment. Here is a link with information in case there is more to the issue. https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/