Dakota15
Senior Member
- Messages
- 311
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- Midwest, USA
I think that's indicative of the bigger picture with this condition - unique stories/symptoms/triggers all across the board.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I was in good physical shape when I got sick and I have seen what deconditioning does to patients. To me, its a survival strategy to exercise, and it promotes mitochondrial biogenesis, e.g. more mitochondria to make energy, plus brain derived neurotropic factor, and other things that are beneficial.
I've lifted weights for over 30 years and know what I am doing. I am careful and work within my energy envelope, and my workouts have included 3-4 naps on the gym floor, stopping when I got dizzy and crashed. I was able to lift weights during the period I was sleeping 16 hours a day.
At this point, though I've improved a lot, I'm still about 70-75% of normal. I am not capable of working full time - I work 12-20 hours a week, mostly less than 5 hours on any one day. If I work more, I get PEM.
I've found that though I've gotten stronger, its pretty impossible to set any goals. Its better if I just do the best job I can given how I feel on any day, and I don't exercise if I feel slammed... I listen to my body and exercise at about 80% of what I think my limit is.
Aerobic - if I do 15 mins I am OK. Anything above that and I tend to struggle with heart palps and fatigue afterwards.
Lifting heavy stuff can only be a few minutes and for days after I ache all over and feel fatigue.
However, I find that if I do the same weights (I have 35lb dumbells) week after week then my body seems to get attuned to them. I do bench press, pullovers etc. These produce no PEM now. My body gets used to them but if I do something "different" then I feel it next day.
What is trt, please?You have probably told me before but are you also on trt? Myself i found being on trt greatly improved my recovery from lifting weights
Trt is testosterone replacement therapy, hrt for men.What is trt, please?
Hegh high did you have to go on Testosterone to get an improvement? Do you have labs and know your typical before and after trt levels? What form of testosterone did you use?Trt is testosterone replacement therapy, hrt for men.
Your profile i see your female so probably not relevant ??
Ah...actually, my doctor and I have found the DUTCH test to be be very helpful. I take small amounts of pregnenolone, hydrocortisone, DHEA, testosterone, estriol and progesterone. And T3 and T4.Trt is testosterone replacement therapy, hrt for men.
Your profile i see your female so probably not relevant ??
Hegh high did you have to go on Testosterone to get an improvement? Do you have labs and know your typical before and after trt levels? What form of testosterone did you use?
I
Mestinon. I also take creatinine, BCAAs, glutathione, NAD+, and hydrocortisone which help my body cope in different ways.!
I found Mestinon alone spiked my blood pressure, which was bad in my case. If you have low BP, it could be a benefit.
The dysautonomia specialist I see has me taking it with propranolol 3x a day, in small doses of both (5mg propranolol and 10mg pyridostigmine), which has improved my symptoms of dizziness and crashing.
what source of pregnenolone do you use? i have not had good experiences with it and I tried a source lauded to be very pure (health natura's). It was expensive and also I had put a lot of mental eggs in the basket of it working. maybe the dosages were too high.Ah...actually, my doctor and I have found the DUTCH test to be be very helpful. I take small amounts of pregnenolone, hydrocortisone, DHEA, testosterone, estriol and progesterone. And T3 and T4.
They do help.
do you know what the cause of the high bp is? Is it any of the drugs you're on? I have been running slightly high and can't tell if it's due to anxiety, naltrexone (which acts sort of like a corticosteroid), or some CFS-caused cardiac issueThanks for pointing this out. Mestinon can change blood pressure. It has warnings for patients with low blood pressure and heart rate. Propranolol can lower both as well.
I trialled propranolol for 3 weeks, then pyridostigmine for 2 weeks. My BP spiked, so I stopped, and consulted with my doctors, who decided I should try both together and adjusted the doses.
The pharmacy kept flagging the interaction between the drugs of potentially dangerously low BP and heart rate. In my case, as my heart rate and BP ran high, this was actually desirable.
I'd definitely suggest being closely monitored by doctors if one is on either of these medications. Propranolol may also affect levels of calcium, magnesium, potassium, and CoQ10.
I believe its multiple factors, including genes (ACE deletion), low nitric oxide, and POTS antibodies.do you know what the cause of the high bp is? Is it any of the drugs you're on?
Anxiety would be a chemical imbalance - fixing methylation or trying GABA, glycine, taurine, or theanine might help.I have been running slightly high and can't tell if it's due to anxiety, naltrexone (which acts sort of like a corticosteroid), or some CFS-caused cardiac issue
Pure Encasulations 10mg.what source of pregnenolone do you use? i have not had good experiences with it and I tried a source lauded to be very pure (health natura's). It was expensive and also I had put a lot of mental eggs in the basket of it working. maybe the dosages were too high.