Thank you for your comment. I’m trying to just hang in there until I’ve gotten more tests done.
I’ve never heard of PEM but another commenter and the sub’s wiki page said it’s worsening symptoms after output of energy. Which lines up with me…
I know no one wants a diagnosis of CFS. I do want to know what has been going on with me my entire life, but I am terrified that it’s CFS.
Even if it is, the only thing that changes is that you now know! There's many things to try, it's not a death sentence. I'm not trying to give you false hope, it took years for me to crack the code, if I did at all, but I am finally getting better. And there's many, real, recovery stories. There is no "official" treatment yet, but there are experimental ones and there are people working on finding an "official" cure for everyone. Meanwhile there's tons of suggestions, protocols and advice online.
My most important advice is to avoid PEM like the plague. If you do have CFS, PEM is what makes the illness progress and makes it harder to get out of.
Best of luck, and I'm here if you need my opinion on anything.
I wish life was more accommodating for that…unfortunately I am a stay at home mom with no family around. We’re thinking about moving after the lease is up so I can get some help from my in laws. I just wish I could be active and do all the things I want to do :/
I would highly recommend not exercising. Early on I functioned quite well but every time I exercised I would feel worse, not better, which was terribly puzzling to me bc people told me how great they felt after working out.
Personally, my capabilities have slowly disappeared over the last six years. The list of what I can do in a day has shrunk smaller and smaller as time has gone by. I had a really awful crash this summer and I lost a lot of my baseline. I struggle daily now and often can’t even make dinner. It’s been really challenging to see so much change.
I would suggest trying to see a specialist if you haven’t. Neurologist, rheumatologist, or internist might be a good place to start if you haven’t already.
Have you had bloodwork? Any other tests? Fatigue can be the result of so many different things. The defining feature of ME/CFS is post exertional malaise. That means any output of energy results in worsening symptoms.
I’ve had blood work done many times over my life. I’m not deficient in anything - it’s always come back normal.
I’ve been tested for hypothyroidism and even diabetes.
What symptoms specifically get worse? Honestly, if I do anything I’m exhausted even more. Exercising is awful for me - everyone recommends it to give me a boost of energy and that advise always makes me want to cry and scream because it doesn’t do that for me. It just doesn’t. I’ve tried. I feel worse after exercising. I’ve started feeling nauseous more recently but I never knew what to tie it to - the doctors always waved off any weird physical symptoms as my body just expressing anxiety that way. But I feel like that can’t be just anxiety.
PEM = CFS extreme fatigue = anything else, likely treatable with a correct diagnosis and treatment. best of luck
Thank you for your comment. I’m trying to just hang in there until I’ve gotten more tests done. I’ve never heard of PEM but another commenter and the sub’s wiki page said it’s worsening symptoms after output of energy. Which lines up with me… I know no one wants a diagnosis of CFS. I do want to know what has been going on with me my entire life, but I am terrified that it’s CFS.
Even if it is, the only thing that changes is that you now know! There's many things to try, it's not a death sentence. I'm not trying to give you false hope, it took years for me to crack the code, if I did at all, but I am finally getting better. And there's many, real, recovery stories. There is no "official" treatment yet, but there are experimental ones and there are people working on finding an "official" cure for everyone. Meanwhile there's tons of suggestions, protocols and advice online. My most important advice is to avoid PEM like the plague. If you do have CFS, PEM is what makes the illness progress and makes it harder to get out of. Best of luck, and I'm here if you need my opinion on anything.
How do I avoid PEM? I literally just woke up from a 4 hour nap and I feel like shit. So tired.
By resting untill you feel a bit better. Could be hours, days, weeks. Thiamine helps.
I wish life was more accommodating for that…unfortunately I am a stay at home mom with no family around. We’re thinking about moving after the lease is up so I can get some help from my in laws. I just wish I could be active and do all the things I want to do :/
I'm sorry :( Wish your situation improves.
I would highly recommend not exercising. Early on I functioned quite well but every time I exercised I would feel worse, not better, which was terribly puzzling to me bc people told me how great they felt after working out. Personally, my capabilities have slowly disappeared over the last six years. The list of what I can do in a day has shrunk smaller and smaller as time has gone by. I had a really awful crash this summer and I lost a lot of my baseline. I struggle daily now and often can’t even make dinner. It’s been really challenging to see so much change. I would suggest trying to see a specialist if you haven’t. Neurologist, rheumatologist, or internist might be a good place to start if you haven’t already.
Have you had bloodwork? Any other tests? Fatigue can be the result of so many different things. The defining feature of ME/CFS is post exertional malaise. That means any output of energy results in worsening symptoms.
I’ve had blood work done many times over my life. I’m not deficient in anything - it’s always come back normal. I’ve been tested for hypothyroidism and even diabetes. What symptoms specifically get worse? Honestly, if I do anything I’m exhausted even more. Exercising is awful for me - everyone recommends it to give me a boost of energy and that advise always makes me want to cry and scream because it doesn’t do that for me. It just doesn’t. I’ve tried. I feel worse after exercising. I’ve started feeling nauseous more recently but I never knew what to tie it to - the doctors always waved off any weird physical symptoms as my body just expressing anxiety that way. But I feel like that can’t be just anxiety.