on MTHFR protocol, still have muscle pain, what am I missing????

[larisa]

I have been symptomatic for 11 months. The pain presented VERY suddenly, almost night and day. Started with joint pain and tight muscles and then one day I woke up with pain everywhere.
There have been times (mostly if I'm on vacation) when the pain dissipates magically, but it always comes back. If I'm remotely stressed it is aggravated, so I try to meditate a lot, do yoga, etc.

I have most of my symptoms under control except for the pain. WHAT AM I MISSING?

Supplements I am currently taking:

• Metanx (L-methylfolate: 3 mg, P5-P 35 mg, Methylcobalamin: 2 mg) (dosed increased very slowly up to this point)
• Vitamin D emulsion (6,000 IU--I am pretty deficient)
• Magnesium (as magnesium bis-glycinate) 200mg
• Mitochondrial restore (zinc, Acetyl L-carnitine, L-ornithine, Alpha Lipoic Acid, NAC, Quercetine, Arginine Alpha-Ketoglutarate, L-Citrulline, L-Methionine, Resveratrol, Co-Q10)
• L-Glutamine (1500mg)
• Strong Probiotics
• vitamin C
• Vitamin E
• Did a really intense 10-day detox cleanse with a colonic a day. (was pain-free for 2 days after the cleanse, but has since returned more intensely--maybe stirred up some toxins?)

Have taken in the past and did not help:

• Ribose Powder
• fish oil (high quality)
• Neuro-transmitter support that contained:
  • Choline Citrate....................100 mg
  • L-Methionine.......................400 mg
  • Taurine..............................300 mg
  • Trimethylglycine (TMG)........500 mg
  • Methylcobalamin..............1000 mcg
  • Magnesium..........................100mg
  • Phosphatidyl Serine.............100 mg
  • Huperazine A.....................200 mcg
  • Niacin (niacinamide)............500mg
  • Inositol Hexanicotinate........500mg
  • P-5-P (Vitamin B6)................10 mg

Why do I still have muscle pain???? What am I missing?

I am homozygous:

• MTHFR A1298C (under treatment for)
• BHMT-08
• CBS A360A (which is weird because I have low ammonia, didnt have trouble on methylfolate protocol and/or sulfur supplements like NAC)

Heterozygous:

• COMT V158M
• COMT H62H
• VDR Bsm
• VDR Taq
• MAO-A R297R
• BHMT-02

 

[SOC]

Are you pacing appropriately for your level of illness? I had to cut WAY back on my physical activity before I was without ME/CFS muscle/joint pain and stiffness. Cymbalta helped with that kind of pain, too.

 

[larisa]

Are you pacing appropriately for your level of illness? I had to cut WAY back on my physical activity before I was without ME/CFS muscle/joint pain and stiffness. Cymbalta helped with that kind of pain, too.

When I was healthy I worked out 5x a week. I haven't exercised in the 11 months I've been down. I am very in-tune with my body, and I can just sense that it would not be a good idea. Especially when my fatigue was really bad. I fear the muscle pain will get in the way of enjoying exercise as much as I used to.
I really wish I could exercise, it was a joy in my life and made me feel so healthy. It's taken a lot of patience to not work out.
Im curious about using Cymbalta for pain. I was prescribed Cymbalta like 8 years ago and had very bad reactions. I wonder if it works for pain because it up's serotonin? I added 5-HTP to my protocol this week and wonder if it would have similar effects.

 

[SOC]

When I was healthy I worked out 5x a week. I haven't exercised in the 11 months I've been down. I am very in-tune with my body, and I can just sense that it would not be a good idea. Especially when my fatigue was really bad. I fear the muscle pain will get in the way of enjoying exercise as much as I used to.
I really wish I could exercise, it was a joy in my life and made me feel so healthy. It's taken a lot of patience to not work out.
Im curious about using Cymbalta for pain. I was prescribed Cymbalta like 8 years ago and had very bad reactions. I wonder if it works for pain because it up's serotonin? I added 5-HTP to my protocol this week and wonder if it would have similar effects.

It's possible you may have to cut back your activity even further to avoid the ME/CFS muscle/joint pain and stiffness. I had cut way back, plenty far enough I thought. It wasn't until I did a CPET to find my AT and stayed below it that I started to get some relief from the pain. I had to go down to about 10% of my pre-illness activity before I wasn't causing PEM and the associated pain.

Some people don't respond well to Cymbalta. Just one of those things, I guess.