Central Sensitivity Syndrome | A Survivor's Guide

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Methylenetetrahydrofolate Reductase Deficiency

On August 4, 2020, Posted by , In Uncategorized, With No Comments

I finally received my Whole Genome test results (https://sequencing.com/?rfsn=4541759.8a2bfe). It’s a wilderness of variants. I’m putting my best doctors in the driver’s seat to help interpret the results at length. However, there is one major likely candidate that “could” explain all of “my” CSS symptoms in one if severe enough,…

Dantrolene Cured My Myofascial Pain Syndrome

On April 3, 2020, Posted by , In Uncategorized, With No Comments

I recently underwent some genetic testing for certain types of rare neuropathies. One of the mutations was in my RYR1 gene, which suggested that I may have some symptoms of Central Core Disease. Looking at some of the known symptoms I realized that I did indeed have some of those…

Treating Medication-Induced Cognitive Decline & Mental Exhaustion – SOLVED

On November 4, 2019, Posted by , In Uncategorized, With No Comments

I’ve been on Flexeril/Cyclobenzaprine for nearly 20 years. It’s the only muscle relaxer that has ever worked for me, and I have tried seemingly everything; prescription, and supplements/herbs. Without it, all my muscles are so tight I can bearly move, the spasms are frequent, and one subtle wrong move and…

Dementia Like Brain Fog

On September 26, 2018, Posted by , In Uncategorized, With No Comments

It was getting so bad. I felt like mind mind was slowly disappearing more everyday. I was so easily jumbled and confused on a regular basis that I was looking into assisted living. I just didn’t feel safe and competent anymore. I couldn’t see images in my head anymore, if…

A Brief Review Of Topical Pain Relievers

On September 23, 2018, Posted by , In Uncategorized, With No Comments

I have tried a fair amount of topical pain relieving substances over the years, both prescription and non-prescription. These are of course only for localized pain, which for me, is typically due to a flare up where 1-3 locations are far more painful than the rest and oral medications just…

Constant or Occasional Itching

On July 31, 2018, Posted by , In Uncategorized, With No Comments

People with high phosphorus levels in their diet can experience a great deal of itching. This seems to be somewhat common with those with central sensitivity, and is either an electrolyte sensitivity, a result of diet alone, or the result of a genetic issue.  You can try cutting out high…

Milk, Irritable Bowel, and Central Sensitization

Since as long as I can remember, milk has been my enemy. At first it was just bloating, which in a skinny little rail of a child looked rather odd. However, by age 9 I was having severely distressing irritable bowel attacks. Whether I was screaming and moaning at home…

Weight-Loss Plan for The Housebound Disabled

This plan combines a few different methods for losing fat and gaining muscle. Each method helps a little, but combined together they help immensely. I’ve been primarily housebound for 17 years, and I’m on 22-hour bedrest on average for the rest of my life. One thing you gain quickly with…

3 Levels of Cognitive Impairment

On February 26, 2017, Posted by , In Uncategorized, By , With No Comments

There are 3 Levels of Cognitive Impairments outlined below. Most with CSS in their day-to-day only experience Level I. For those who overdo it, by the end of the day they may experience Level II. This level is also often experienced when woken up in the middle of the night…

Scoliosis and Numbness

On February 26, 2017, Posted by , In Uncategorized, By , , With No Comments

If you have CSS and scoliosis, you are experiencing episodes of numbness, and are concerned it may be something more than the CSS, there is a quick and easy way you might be able to determine the cause. I’ve had scoliosis since I was little. It doesn’t seem to cause…