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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New here, and already found help

Messages
11
Location
Fulton, NY
I am new to this forum (first post) and for that matter, relatively new to the world of this wide-spread muscular pain and debilitating fatigue. In the last four years or so, I've been seen by so many doctors and tested for so many different things. I may even have in my medical record a misdiagnosed clinically determined dx of Myasthenia Gravis. Granted, the fatigue part has only become a major part of the picture in the last 18 months. Before that, my biggest complaint was extreme muscle tightness. And I wonder now, if what I would have always desribed as tightness, others would desribe as pain. And the moments that I am feeling normal just seem to complicate things as I, even now, ask myself is this for real?

Anyhow, just wanted to expess my joy in finding this thread and the wealth of associated informative content. Even if I discover that my health issues are not exactly related to ME/CFS, I am sure to find some worthwhile information here. Thanks to the information I found on this page,
http://phoenixrising.me/treating-cf...nding-a-chronic-fatigue-syndrome-mecfs-doctor
I discovered that I live only about eight miles from a Fibromyalgia & Fatigue Center. I can't remember the last time I actually looked forward to the next day as I will certainly be calling them tomorrow.

Lastly, I do realize there are those who go years and years feeling like their life is in a downward spiral with no end in sight with an illness like this, and I promise to pray for you.
 
Messages
11
Location
Fulton, NY
Thank you, SOS. As it turned out the Fatigue Center was closed down. :( There are alternatives about 3-4 times the distance away. But with the family schedule and only one vehicle, and the trouble I have driving longer distances, I'm leaning more toward just finding a rheumatologist near me.

Time to act on it soon I suppose, as today brought about way more pain than tightness in my muscles. 99% of it (be it pain, or be it tightness) is all in the upper half of my body. Is that common? I've always had a pronounced weakness in a select muscle group of the shoulders/neck and chewing while at the same time very strong (and high endurance) muscles of the legs. I was an avid cyclist for over 25 years.

Thought I'd ask here. Might not have a chance to ask all that's on my mind when I get to see the doctor.
 

maddietod

Senior Member
Messages
2,856
I have good luck with extreme muscle tightness by supplementing with potassium. RDI for potassium is 4700mg which is hard to get if you don't eat a lot of vegetables. RDA is 2400.......I totally don't understand why they're so different.

I seem to need massive quantities of potassium when I take B12, but only then.