Chronic Pain members - Welcome, please introduce yourself

Hello, I contacted the hospital a while ago for help for Adhesive Arachnoiditis. The response was a general one. I need help because my situation is getting worse and worse. The more that is done the worse you become. What I would like is someone in the medical profession who will acknowledge A.A.. It is an International Disease that is just about ignored. Funny, easily found on the internet. When I called I could not find the Dept's to speak with. Lots of transferring. There is no place that I know of that is doing research or trial. Would you have any information who I can contact? If not I understand.

In fact it is listed under the National Organization for Rare Disorders (NORD). And I believe recognized under Neurology and seen in Radiology. Mayo has posted some research on it. Because there is no cure and is inoperable I believe it is mostly falling under Chronic Pain Management. Because only Pain Mgmt seems to deal with it. I will be having to mention it next week and will see if they have any leads for me. Personally I believe there is a connection between AA and NPH But dont quote me. Am not a doc. Living with both for years now is my only rationale. NPH has to do with problems with flow of CSF, and AA can cause obstruction of CSF. That’s the only connection I see but makes so much sense to me. Will see what Mayo evaluation tells me. Am open to all ideas that can help.

@summertime4 Here is Mayo's information about Morton's Neuroma. Since this might involve tight tissue around the nerves, it's possible that Myofascial Release could help. Here is our discussion with lots of information in MFR.
https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/symptoms-causes/syc-20351935
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter Thank you so much. I will go to that link very shortly but wanted to thank you right now.

@summertime4 I have had surgery for them in 2012. My foot has numb areas now and some parts very sensitive and feels like being stuck with a needle. I had a recurrence of pain in 2016.. while walking it felt like I stepped on a sharp stone. Just like the first time. I got I don't know how many injections. I finally went to another town to see a different doctor. He ordered a mri and it showed another small neuroma. He suggested physical therapy. I got to the referral and unfortunately the young lady did not know much about foot therapy.. but she knew who did. A man that had helped me with many other times. I have known him now for 13 years... sometimes hard to keep up with where he works at. He has amazed me with his constant seeking of knowledge to help his patients. He did severals things but what helped me most was he used pins... similar to acupuncture and he attached a tens machine to them. A strange feeling. Pins were not painful. He also told me take any arthritis pain rub that works for me and to massage it into just the top of my foot nightly. (I use the equate version of aspercreme). I am not totally pain free, but I can walk and stand on my foot for a while now. I will have to do repeats of the therapy sometimes, but hopefully I can avoid another surgery.

@fourof5zs Thank you How long did it take before it was decided to do surgery? How many shots did you have? Were they cortizone and did they hurt like really bad? I have neuropathy on top of this so I don't know if numbness is neuropathy or neuroma. All I know is pain.and swelling. Even at night when in bed. I am going back on gabapentin and pray that helps at least with the neuropathy. I wi be going for acupuncture soon.

@summertime4 I had the surgery in 2012. My memory is about shot... so much other stuff has happened in between then and now. .. a lot of anesthesia that caused some memory loss. My best guess is 4-6 injections over about 3 month period... I think they were DEPO-MEDROL (methylprednisolone acetate), but not positive. Most of them not painful. It got to where I could barely walk a few feet. If I had known about physical therapy back then I would have tried it before surgery. It took about six months to recover from surgery. After surgery for such and such time you cannot put any weight on your foot and then it is like 10 minutes allowed so many times a day. Sitting with foot elevated is just no fun. I had to use my recliner and a couple of pillows under my leg.. I slept in my recliner for a while. I am a get up every 30 minute and move around person.. hard for me to sit still.

With this last neuroma I had more injections than I can remember over about a 9 month period .. with promises of an mri ordered from my podiatrist... before I gave up and went to a orthopedist that gave me the worst injection ever.. so gave up on him and found a very good podiatrist in another town. (it pays sometimes to ask friends for recommendations... especially a nurse)

No more injections... just getting to the correct physical therapist. In addition to the pins with tens machine attached he also used some torturous looking tools to help stretch out the muscles that had tightened with the pain. I had already had some numbness in my outer side of foot from a herniated disc in my back in 1993. My middle toe has no feeling except for the very tip.. really weird. The rest if my foot I feel. Sometimes I have the pin and needle sensation throughout my foot.. especially if I forget to put the cream on the top of my foot at night. I plan on keeping up the PT as needed and a and surgery as long as possible.

Hi,
I’m only 41 years old mom with 2 daughters who has finally after years of being used has a pin cushioned been diagnosed with chronic pain, idiopathic small fiber neuropathy, inflammatory neuropathy, depression and anxiety. I have suffered from pain the last 5 years on my own until I found a MD who believed me that I was in so much pain and I couldn’t do anything with my daughters, go to the park to play and there question was why I couldn’t be like the other moms. I didn’t know how to answer that question, now I’m getting help, but my husband and I just lost our jobs and no health insurance. Just has I was getting things in order we lost our insurance. I’m on Lyrica which so expensive, pain medication, anxiety, etc. where do to turn to because Lyrica I need to ween off of? Just too expensive anyways that is my story and they still don’t know where the neuropathy is coming from, oh, on to of it, I have RLS.

@2013pain Welcome to Mayo Connect. We are glad you found us. We are not doctors here, nor can we diagnose. We do offer our support, experiences and knowledge to fellow patients and caregivers, covering a wide range of topics. I am glad that your conditions were finally diagnosed, but so sad to hear about the loss of income and insurance. Is there a county facility that you can go to? Have you checked with the MD you found, to get his suggestions on where to turn to? Have you checked with the manufacturers of Lyrica to see if they have a program you can qualify for?I hope you will come back and let us know how things turn out. Will you do that? We care here.
Ginger

@2013pain I'm sorry you lost your insurance for all you need. I had to call manufacture one time when I was on Lyrica they gave me a discount card ,also there is GoodRx its a good card for medicines. I never used it so don't know how it works go to its website goodRx The Dr. may have samples . Even before my Cholesterol went generic I had to get a card from Astra Zeneca the manufacturer