A mix between venting and asking for tips.
Since I'm lying here with a shitty cramp flareup I thought I'd use my time to write a post here. I'm 27, with a very debilitating mix of Endometriosis and ME/CFS (with hypersomnia and mild OSA as side dishes cause why not...). Both were diagnosed late - got an Endo diagnosis after 8 years of pain and unsuccessful treatments, and got a CFS diagnosis just recently after more than 2 years since symptoms started (could be even more, I remember starting to have serious fatigue at the age of 17 and it slowly worsened). I'm at a point where I'm on a cocktail of strong painkillers I need to take every other day (while taking pills nonstop), yet my pain is still debilitating. On the CFS side of things, my PEM is so bad that even doing the dishes can send me to hours in bed and it includes intense pain, especially in my legs. And of course, both illnesses feed on each other and make all symptoms worse. My PEM often includes Endo cramps, and when I wake up from cramps it worsens my fatigue and thus makes my already low availability of energy even lower.
I've been experiencing a rapid deterioration in symptoms in the past few months, and it just keeps getting worse. I need to sleep 12-19 hours a day, every day. I can barely walk now - just yesterday, a trip to the nearby grocery store (which should take 10 minutes) took me almost an hour due to how slow I had to walk, and I got stuck for 20 minutes in the middle of the stairway of my building because I just physically couldn't keep going. I've started using a cane recently but at this rate I'm afraid it won't be enough. Sometimes I need my cane just to walk inside the house. And of course, the pain and PEM afterwards are absurd.
I have an appointment with a new pain management doc today, one that has a lot of experience with Endo patients. I hope she can somehow help with my CFS too, cause right now I can't even consider some treatment options for Endo because of my CFS. Surgery, or even changing my pills, are likely to cause a longer recovery period than usual due to CFS, and it can make an unrecoverable worsening of CFS symptoms, and that's without even taking into account the fact that they might not even work for the Endo symptoms. It's a tangled mess...
Also can we talk about the fact that Endo and CFS have a high potential for comorbidity, yet NONE of my doctors, even the Endo specialists, knew to point me towards CFS when I was complaining about extreme fatigue that worsens after any type of exertion?? I got diagnosed when I went to a pain management doc cause I thought I might have Fibromyalgia (and to get better pain meds from her), and she ruled Fibro out while diagnosing me with CFS. It's not the doctors themselves' fault, it's the fact that CFS is still highly misunderstood to this day and remains painfully under-researched. I love having not just one, but TWO invisible, severe, under-researched illnesses! Fuck my life ಥ‿ಥ
Does anyone else here deal with this kind of Endo+CFS mix or something similar? Did you manage to get at least some mobility and quality of life back? ;-;