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Posts (61)

Mon, Jun 22 6:22pm · Living with Neuropathy - Welcome to the group in Neuropathy

Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands. I also have complex regional pain syndrome in both feet and left leg. I just asked my primary care about muscle cramps and he told me to get magnesium citrate which I haven't done yet! I can also relate to laying down and the pain in my calf and thigh and butt. Have had injections in sciatic nerve that have helped for a while.. I find neurologists useless and was told the same as you IAIYH. I have been seeing a pain management doctor for eight years now who is absolutely brilliant. I have had a spinal cord stimulator for eight years and find it helpful, more so for some areas than for others. My foot pain is the worst. A botched foot surgery by an orthopedic surgeon caused my complex regional pain syndrome (CRPS). My pain management doc is very knowledgeable about CRPS. Perhaps someone near you knows more about CRPS than most. It might be a place to look. If there is more you'd like me to share, I'd be happy to. Blessings, Barb

Sat, Jun 6 11:26am · Living with Neuropathy - Welcome to the group in Neuropathy

My small fiber neuropathy was dx by two biopsies – one in the thigh and one lower in the leg. I started with intense burning in my feet followed by numbness but not numbness to pain unfortunately, just to sensation.. It has traveled up to mid-calf and also in my hands. I have lost sufficient feeling in my hands that I drop things frequently. In addition to SFN I also have Complex Regional Pain Syndrome in both feet and left leg. It is hard to distinguish one from the other. Like Jim, the balls of my feet are very painful but I believe that is the CRPS for me. I have shiny, red skin in my feet as well as edema up to just above my ankles. The balls of my feet are so painful I use a power chair in my house to get around and only shop where there are mart carts. I do have a Boston Scientific stimulator implanted that I keep on 24/7. It works well for my back, legs, and knees and fair for my feet. I do not see a neiurologist, simply haven't had good luck with them. For the past 8 years I have been seeing a pain management doc rather frequently as I have a very painful body. I have RFA done to eliminate my occipital headaches, low back pain, and sciatica problems. They can last for up to two years for me. I hate headaches and am happy I am without for that period of time. I enjoy gardening and try to be as active as I can. It's amazing what pain I can endure just to have some fun, creative time in the yard. I also use Lidoderm pain patches and lidocaine prilocaine cream to help limit pain and when I have had it extended release oxycodone. .Hope this helps you understand some of this stuff. Get back to me if you have questions on anything I wrote about.

Sat, Feb 22 9:49am · undiagnosed movement disorder in Brain & Nervous System

I have suffered with peculiar movements for years now. I have been to Boston and New York City and the National Institute of Health only hearing you have a Psychogenic movement disorder. I knew that wasn’t so because it was triggered by touch usually around my right shoulder, trapezius muscle area. It started after my second concussion and was just in my right shoulder, arm, and hand. After my third concussion, it went body wide. The contractures are painful and last a long time rendering me incapable of moving. I went to an appt with Core Therapy where PTs use manual therapy. When my body started very quick jerking I asked what he thought it was. He told me my nerves were hyperactive. A short while later while working on my neck and right shoulder area everything stiffened in position, my right hand in a claw position. The contractures went down my whole right side. Again I asked for an explanation. He said my nerves were super sensitive. He felt they could be calmed but it will be along, slow process. I looked up info – http://www.keystonensc.com/downloads/epa-nerve-hypersensitivity-syndromes.pdf and after reading that I went to -https://naturalsolutionsforahealthyyou.com/using-diet-to-balance-the-sympathetic-and-parasympathetic-nervous-systems-part-2-of-3/
Here’s a good explanation if you have been told like me you have dysautonomia or autonomic dysfunction – https://www.linkedin.com/pulse/symptoms-overactive-sympathetic-nervous-system-you-headed-chad-oler/
Reading all this has made me hopeful that with their help at Core Therapy I will make some forward progress no matter how slow.

Tue, Feb 18 6:56pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I have pudendal nerve damage from giving birth to a frank breech baby vaginally..Fecal incontinence occurs when stool is not sufficiently solid. Things have progressively become worse as the 45 years since that birth have passed. Several years ago a doctor wanted me to go to Philadelphia to have a trial sphincter implanted. Didn't go. Has anyone experienced this nerve damage?

Thu, Feb 6 7:07pm · CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD in Neuropathy

Thank you so much for your kindness and sharing about your journey. It is truly the most difficult time in life in some ways and in other
ways there is also hope for the future. My husband's last four years were tough on him, especially with the dementia and the fear, the unknown, the not understanding where he was, who I was. He was in a home hospice program and I was the main care giver. I had prayed probably four days before he died that God would have mercy on both of us and bring him home. It was so painful to watch and painful for him to go through. Being Christians we know heaven is our home and I felt joy for him and sadness for me.

Thu, Feb 6 9:17am · CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD in Neuropathy

Mobility is getting more painful and slower.. I use a power chair around the house for doing a lot of things. I haven't been elevating and resting as much as directed so pain level is not decreasing. Driving is becoming painful since I did something to cause peroneal tendinitis. My husband died last month and I have been having a tough time with everything. Hopefully I will get it together in the not too distant future. Thanks for referring this over.

Wed, Feb 5 7:02pm · CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD in Neuropathy

Have just been dx with Cavovarus foot deformity, which often results from an imbalance of muscle forces, is commonly caused by hereditary motor sensory neuropathies. This dx came when some how I injured myself and I don't know how or when and ended up with ridiculous pain and swelling in the peroneal tendon. I looked up the term cavovarus and that reminded me of what I saw growing up. I believe my mother, her cousin, and aunt all had Charcot Marie Tooth simply first of all by appearance and then by increasing weakness and loss of muscle in both legs.
I have also been dx with small fiber neuropathy by two biopsies, as well as CRPS in both feet. I drop things on a regular basis without realizing it until the object is on the ground. I need to hold a pen and write daily or writing is not legible.

I am most concerned about my 16 yr old granddaughter as I feel she has inherited this. I have already spoken to our PCP, a very talented DO, about this and have an upcoming appt. I would love to hear from anyone who has any experience with this.

Mon, Jan 20 7:42am · undiagnosed movement disorder in Brain & Nervous System

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.