They say you can often identify the condition you have by its most unusual symptom, the sensitivity to pressure just seems so weird, but i have no idea what to call that symptom.
Sounds like you found something to call it, which makes sense. Hypersensitivity many times is a nutrient deficiency or imbalance.
It might be a deficiency of B vitamins (particularly B1, B2, or B12), vitamins C, D, or E, calcium, magnesium of omega 3s.
I mean I definitely experience PEM and other things typical of CFS but I'm still holding out some hope i can find some alternate cause of my illness instead of having to wait till whenever it is the cure for CFS is found. But your definitely right, the nature of the symptoms can make the overall condition much harder to manage.
This is a complex, multi-organ system disease, typically with a number of factors driving it. Like you, I am not patient enough to wait 30 years for a magic bullet, and gave found that breaking out treatable problems snd treating each one with both functional and conventional medicine has gotten me far.
I've worked with functional medicine doctors for years and have had the nutreval done as well as having a GDX labs amino acid test and organic acid test done before i had the nutreval. The nutreval was done at a weird time, I was on the SCD diet, and the results of the nutreval weren't focused on as thoroughly as they could have been but most of the stuff the nutreval recommends I've taken at one time or another, really many of those those things have been taken all at once at different points in time, the vitamins, probiotics, antioxidants, EFAs, etc. have been used consistently for a while when working with functional medicine doctors. I tried all the amino acids the tests recommended without any noticeable change, at least on the first one, the profile of the second amino acid test, the one that was part of the nutreval, had results that were very different than the first
I've used a systematic approach, doing the NutrEvsl every 9-12 months since 2011. I've correlated it with other tests and have seen it among many other patients' tests and it is a credible, very useful test. I recently ran a Great Plains OAT test the same week as a NutrEvsl and the results correlated very well
My results today look much different than in 2011. The results have changed over time as I've made various interventions, and the thing I like I can see what the various pathways are doing and know what interventions to make..
It's critical to get the physicians Copy of the results, with the 12 pages of explanatory text, rather than just the brain dead patients Copy with the little supplement recipe on page 2, which I find is more of a suggestion to go up or down in supplements that I already take, rather than a recommended dose - in many cases, I take many times the recommended dose because it says I'm deficient in something I've already been taking.
As for amino acids, I've learned a lot. For a couple of years, all my aminos came back pretty low, and then the ME/CFS research showed that ME/CFS patients tend to run low in various amino acids and I found mine fit the pattern well and I realized I needed to up my protein intake to 1.6-1.8g/kg to become sufficient. Beyond that, I've run out of tyrosine, correlated with my low dopamine. I ran out of methionine, causing my homocysteine to go down to 3. I ran out of asparagine, which caused old mito content to build up, which returned to my baseline with supplementation.
I've also found that running a plasma amino acids panel sling with the urine panel in the NutrEval is helpful, comparing what I'm short of with what I'm dumping. Oddly, taurine is off the charts high - I think I'm making it from cysteine and methionine to mop up oxidative stress as I'm not taking any.
I don't find that fixing any one nutrient usually makes much difference in symptoms. They all need to work together, and my goal is to normalize all the out of whack values, and feel better over time, which I have.
I also have found that though this approach is essential to s comprehensive program for ME/CFS, it is not a substitute for getting rid of mycotoxins or heavy metals.
Or in addressing infections, immunodeficiency, autoimmunity (POTS and MCAS) which were not responsive to done excellent functional medicine solutions because my immune system was so bad. It has taken some heavy duty pharmaceutical Interventions by conventional doctors (Valcyte, IVIG, Rituximab, POTS and MCAS meds) to make headway, and until I did this, I spent a lot of money on things that weren't as effective as I'd hoped, even though there was sound science to make them worth a try. But the nutrient interventions helped fix the damage done by the infections and my misbehaving immune system.
