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"Dents" in leg muscles

Neuropathy | Last Active: Aug 2, 2023 | Replies (109)

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@confused1955

I also popped into this conversation. I DO have problems with gait. I would fall but I always manage to fall into things or grab onto others. Also I went from 168 to 89lbs in 18 months without change in eating. But was diagnosed with celiac disease and have gained back 19lbs. Prior to April 10 2017 I had sciatica, scoliosis, osteoporosis, osteoarthritis. Then I woke up on the 10th and had lost the use of my right hand and the pain felt like my hand was in boiling water. 10 days later I woke up with the same thing in my left hand. 1st neurologist said PARSONAGE TURNER SYSNDROME and said she would send a letter to my family Dr. When I went to see family Dr. Her words exactly were. I have never heard of this disease YOU WILL HAVE TO GOOGLE IT. I did, it didn't sound like my symptoms. 48 hours after the test where they poke you full of holes I had a heart attack at home whilst having a BM. 2nd neurologist said no it couldn't be PTS. he said was MONO NEURITIS MULTIPLEX. MNM family Dr said. SAME DEAL YOU WILL HAVE TO GOOGLE IT. SAME DEAL it didn't sound like my symptoms.
I went back to my old family Dr. He's not likely to tell me to Google it. He sent me to a different neurologist, the 3rd. When we got there she had gone through all the previous tests done by the others. She had made herself totally knowledgeable of my symptoms. She was what you hope for in a Dr. However yes you guessed it 3rd diagnosis. CHRONIC REGIONAL PAIN SYSNDROME. She explained every detail, no waiting to get results from family Dr. However the news was not good. It is nicknamed the suicide disease. There is no cure and no treatment. Just 24/7 pain. I am on gabapentine. I didn't think it worked until I miss a dose. Also long acting diladid and 2mg fast acting for break through pain. They don't work either. So I cry out in pain I scream in pain. My best friend is sleep and I'm very fortunate that my evening meds do their job and I sleep well. Then I wake up. It's still there. It will always be there. I will never have anything to look forward to again. I'm only 64. I worked all my life now I've lost that. My husband is drifting farther and farther away. I have zero quality of life. I know why it's nicknamed the suicide disease because I fantasize about not waking up. Having a massive heart attack. Because my death is not imminent I'm not eligible for MAID. The thought of living like this for another 2 weeks is hell but 20 years. Will not happen. I will be a statistic. Part of the over 60% that choose to end their life. I pray no one on here has this horrible disease. It breaks my heart that children can get this disease.

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Replies to "I also popped into this conversation. I DO have problems with gait. I would fall but..."

Hello @confused1955 -- You mentioned you have been diagnosed with Chronic Regional Pain Syndrome. You may be interested in another discussion here on Connect so that you can meet others sharing your symptoms. Have you found any treatments or therapy that gives you some relief from CRPS?

> Groups > Chronic Pain > CRPS
-- https://connect.mayoclinic.org/discussion/crps-2/

Have you tried heavy metal detox with Zeolite? Have they tested you for heavy metals? My dad was in chronic pain, maybe not as insanely horrible as you are, but massive pain none the less. The doctor did a heavy metal test and he was extremely high in aluminum and some others. He did a heavy metal detox and his pain went away. I'm not sure it will help, but I have seen it help so many first hand. It can't hurt to try. I am sorry you have to go through this. Really.

I noticed your post is dated 2019. I just read it today 2/2023 and am wondering if your pain is any better? Are there any stronger pain meds that help? I,too, have pain from several sources, most of them are related to post Covid. I am thinking of you.