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Old 09-09-2018, 10:12 AM #1
Mercifully Mercifully is offline
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Join Date: Sep 2018
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5 yr Member
Mercifully Mercifully is offline
Newly Joined
 
Join Date: Sep 2018
Posts: 1
5 yr Member
Default Hello! Glad to have a diagnosis.

Hello,

I am a 53 yo female that has been suffering for 21 years. When my first child was born, something was triggered. I had muscular pain and muscle tightness all over my body. I was diagnosed by a rheumatologist with fibromyalgia. She told me to try to keep moving, but there were no drugs suggested back then.

I was miserable. As the years passed, I picked up other symptoms...wheat intolerance (was tested for celiac via blood test), various digestion issues, massive chronic cramping of legs, feet, then lower back.(should have bought stock in a pickle factory) As the years progressed, upper back spasms, weakness, heaviness of legs, pain in my feet that was described as 😂walking on potatoes and legos as I tried to explain it to my friend. I would bring a list of my symptoms to whatever doctor and I could tell that they were frustrated. Some treated me like I was a drug seeker. Others said that because I had fibro, it was the fibro and I just had to keep moving. Take ibuprofen. Blood tests revealed "nothing" is wrong. You're low in B-12 and D. Here's some pills for the low D. The pills made me hurt even worse, increasing cramps, tightness and lower back pain.

This summer, I was blessed to have an over lapse of insurance. Having a primary and secondary, I decided that this was my summer. I went to a gastroenterologist, a rheumatologist, neurosurgeon, two Orthopedic doctors, and a Pain Management physician. Nothing significant was noted. In a last ditch, almost end of the double insurance summer, I went to a neurologist. He performed a test that sort of zapped the muscles in my lower legs. He diagnosed me with small fiber neuropathy and put me on gabapentin. It took the max dose of 4 300mg pills, 3 times a day to get significant relief. I also vape CBD oil and smoke some weed (discovered that worked this summer. I was in so much pain that my son came to me and told me to try it-I was so angry that it's illegal. so many years of suffering....) As far as side effects, I experienced some headaches on the first few days of an increase. What's amazing is that so many of my symptoms that I brought to all of the other doctors went away. The lower back pain, cramping, tight muscles, most of the foot pain. Even digestion problems. I now sleep like a baby. What remains are feet that swell and sweat, dizzy moments, I can now feel the weakness, numbness and tingling on my feet, legs, lower back/hips, hands, behind my ears/neck that were not noticeable over the pain. I'm going to start walking around the block (I've not been able to move more than the minimum...being a teacher takes all my spoons) I wonder if I need to have a cane to keep me a bit more steady. Whew, if you made it this far, thank you for listening. He knows it's not autoimmune. He's still trying to figure out the cause. Nothing in the blood tests jumped out other than low D and low B-12. I have found my dr. He is interested in my case and tells me that he is going to address everything. After 21 years.
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Old 09-09-2018, 04:17 PM #2
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kiwi33 kiwi33 is offline
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kiwi33 kiwi33 is offline
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Default

Hi Mercifully

Welcome to NeuroTalk .

I am glad to read that you have finally got a diagnosis of SFN.

The peripheral neuropathy forum (https://www.neurotalk.org/forum20/) is very active so I am sure that if you post there you will get lots of support and helpful suggestions from other members.

All the best.
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