Arachnoiditis: Looking to talk with others

Is hip pain a AA symptom. Knew low back was. My low back and legs hurt.

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.

Thank You so much Joan, I am desperate. I am in-touch with Tennant also. I really thought my Dr. would follow his Protocol. My called today left message about the Clindone reaction. May I ask you the Dr's name you will be seeing at Mayo, State? If not it's OK. We are our best Advocates, have to be. I think the Dr. you mentioned in UK last name I think, Smith? I wish I had know about Dr. Antonio Aldrete. I read about him, found out he retired also. Tennant is so kind. I am very disappointed in my Dr.! I realize he not that familiar with AA. I wish good luck and if you feel comfortable letting me know how Mayo appt. went. I'm trying to get Patients together, Advocates to go to the Legislature to bring this Disease to the Public. To the the Doctor's know their surgeries are in question. Why do they keep saying, I can help when it only gets worse! Thank You for listening Joan.

@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/

@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/

Each person is unique, but I found that myofascial release aggravated my inflammation but that craniosacral and deep tissue massage helped it. I also use an infrared heating blanket, reflexology and essential oils which helps alot. I have also been vegan all my life so my blood work always comes back high in nutrients, and no evidence of clogged arteries. I eat alot of vegetables and healthy fats with no sugar without a lot of complex carbohydrates.It also keeps my weight stable which helps with my pain. Fortunately I spent my career as a nutritionist so I knew that was the best way for me personally was to continue to eat this way having an inflammatory process to deal with. Each person has to try what works for them. It is good to be able to share what works for us with others who suffer as we do and understand what our struggle is.

Each person is unique, but I found that myofascial release aggravated my inflammation but that craniosacral and deep tissue massage helped it. I also use an infrared heating blanket, reflexology and essential oils which helps alot. I have also been vegan all my life so my blood work always comes back high in nutrients, and no evidence of clogged arteries. I eat alot of vegetables and healthy fats with no sugar without a lot of complex carbohydrates.It also keeps my weight stable which helps with my pain. Fortunately I spent my career as a nutritionist so I knew that was the best way for me personally was to continue to eat this way having an inflammatory process to deal with. Each person has to try what works for them. It is good to be able to share what works for us with others who suffer as we do and understand what our struggle is.

Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By an eminence in ARACHNOIDITIS. Am currently at Mayo JAX for amazing program of Pain Rehabilitation. This program is also available in other Mayo locations. But it is very intense and am in my final week so have no more energy right now. We get a lot of homework in the way of Planning for how we will carry out the principles and tools learned once we get home.

Take care all. It’s a long learning process. Keep the faith.
Joan

PRC is great for getting off of opioids which they did that for me which I can bless them for. Today I am not on opioids any longer and I'm trying to find alternative options such as I mentioned to you. I wish you all the best with your classes but the hardest thing is after you leave trying to keep up with their formula which I found it extremely difficult in my way of life. I wish you all the best and let's keep in touch

Don. I agree about the getting off opiods. But do you also remember Version A Version B. And VErsion C? We can never go back to Version A. Referring now to golfing. Assume that was in your Version A?
I want to find way for private messages. John. Can you help me?

Going into class now. Consider me one of your Support Persons. If you wish. And in Private.

I hate to hear of a PRC graduate lost in the stresses of life. As a fellow Arachniac I do understand you. Best to you today. Closing phone now