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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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With Fibromyalgia, pain improves with gentle exercise.
In CFS alone (or CFS + secondary Fibromyalgia), all symptoms worsen with exercise.
Fibromyalgia is just the tender points really. The other symptoms are optional.
So, the fact that i couldn't get up after a busy day and eating gluten is PEM? If not, when must i expect to get PEM?
I agree with redrachel76 that exercise does help with fibromyalgia symptoms, and exacerbates the CFS symptoms. When I'm in "fibro mode," not only can I exercise but it helps (as does meditation and yoga). When I was in my worst CFS mode, even raising my arm to brush my hair set off the characteristic weakness/fatigue that I knew so well. For me, it seems to be one extreme or the other.
Thank you for your inputs. I have an aunt that has been living with fibromyalgia for 20 years, and she's got sjogrens and other health issues but not cfs. So, I guess that fibromyalgia runs in my genes.
I understand also that the main symptom in cfs is PEM, but I'm not sure if i have that one. Let me give you an example and you could tell me if this is PEM: one week ago i went to Moskow to visit a friend, the first day that i arrived i was able to rest enough, but the second day she took me all around the city, and she made me eat gluten because her mom had cooked a very special meal with soy sauce! Anyway, that night i went to bed around midnight, i sweated all night and i couldn't get up until 2 pm the next day. Then i got dressed and went out until very late. The next day i was out all day without problem, and the day after that i travelled from Moskow to UK without any issue. Yes, when i arrived i was tired but not exhausted. Also, some days the temperature dropped to -16 degrees and even though i'm not very fond of the cold weather i was able to resist.
So, the fact that i couldn't get up after a busy day and eating gluten is PEM? If not, when must i expect to get PEM?