Hi, new to posting here, but not new to this illness. I have the pain in my lower legs as well, and it is pain. It feels like it is the bone that hurts, it is worse if I am standing or walking on them for even short periods of time this symp. started in 2008. But, I had been dealing w/ other issues well before this. I was very active biking 12-20 miles a day or every other, worked full time, and had an active social and hobby life. I had also went back to Uni. and got my BS degree, that is when I noticed things were not right, that was spring 2004, kept going back to the Uni. Dr. but nothing was found, except sinus infections, put me on antibiotics, and I felt much better, then once they were out of my system, I was back to not feeling good, sleep issues, no dreaming/REM sleep, just felt tired and had no go/pep whatsoever. I knew something was wrong, but didn't know what.
I was off & on antibiotics dozen times for 2+ yrs, had an allergic reaction to Penicillin, then, so those were out. I moved home to lower my stress level, as I had moved to a metro area after graduating, but the next yr the pain in lower legs started. Dr. tried sev diff. things, Tramadol was first, and that made it much worse, tried something else, then hydrocodone and doxycycline(was on this for 2+ yrs at the time, as Dr. thought Lyme might have been an issue, and I did better on it). I have been to 2 CFIDS specialists, I have high titers for HV-6 & 7, CMV, and one other I can't remember. I posted to my group list at the time and was told to add Xanax w/ the hydro. as the 2 together worked better for the pain. Tried it, and it did make a difference, he also had the lower leg pain. I still take both for it now, but it is just a crutch, it does not help if I overdo it, or if the weather is really changing. My cats also sleep on my legs, and it does help immensely, I too think it is the pressure more than anything. I cannot have legs down, as they hurt more and swell. My arms have also started swelling up w/ hotter temps in 2010, they look as if I had lifted weights for hours, the veins all bulge, and swell to about 2x normal winter size, leg veins do the same thing. They also hurt really bad w/ minimal usage. So I do what I can when I can, avoidance has become req'd. for many things. I alos am losing weight since last summer, down from 172, today I am 147. Dr. is not sure what is going on. But we are watching it closely. I also get very hot very easily, cold is also worse.
So here is my question/s what should I be doing that I am not? I have tried many things, including D-ribose & l-carnitine, D3, but I did not have a sig. benefit in pain levels. This is what I currently take:
Hydrocodone 325(was 500 before) 3x day, Xanax .5 mg 3x day, Ambien 10mg before bed.
Multi-Vitamin, Bee Pollen, B complex, L-lysine 1000mg, and just added Biotin 10,000 mg all 1x day.
I read on another thread about the Metafolin? but have not read about what I need to do before I take that, any help is greatly appreciated. I know we are all different, and I have never done any of the methylation stuff, I do watch what I eat, and try to only eat fresh w/ chicken breast, no beef, limit carbs and overly processed foods and low amts of dairy/gluten. This is hard to do, and reading about all the things, it gets very confusing very quickly, so I get overwhelmed. Thanks in advance, R