Listen to your “new normal” baseline. I was also doing the push yourself crash cycle for 1.5 years. It was through this support group that I learned the condition that fit with my symptoms -post exertional malaise. I wasn’t nuts! It’s a real thing. Before that I was just lost. And I did a lot of research, as much as I could and relearned what my body could do.
Combined with that I finally saw a hematologist. After 1.5 years of bloodwork, X-rays, cardiologist tests, mri scans for lung blood clots, getting a pulmonologist to be diagnosed for asthma for the first time, more blood work, emergency room visits… etc… yall know what I mean, I finally got some answers. What other doctors saw as a white blood cell count that was marginally elevated but within normal limits, the hematologist did more expansive bloodwork and found I wasn’t absorbing and storing iron. Put me on oral supplements, to see if they worked. It didn’t. So eventually got an iron infusion. LIFE CHANGING! It was like I came out of a groggy fog. Within a week I was able to do more - still pacing myself of course. But I did t have to take a nap on my office floor multiple times a day. And sleep all night.
The referral to the hematologist was on a whim by my pulmonologist. I just kept asking, “What else do you think? Who else might have answers?”. And she was like… “Well, your bloodwork is a little off with elevated white blood cell counts. I don’t think it’s anything but let them see if they can see more.”
And now I have returned to being a field biologist. I was able to accept a demanding field-based job. I would t have been able to take my dream job if I hadn’t received the infusion when I did.
Also - the infusion I got was fully covered- partially by my insurance and the rest by the drug company. They had a program to cover all out-of-pocket costs. And I got that just because I asked, after getting the initial quote, if there were any other options that might not take me out of work for as long and cost so much. And the doctor had their team find out.
This support group was a game changer for me: mentally and physically. I am not back to where I was, but I feel like I am able to move forward.
Next stop is a neurologist for addressing the internal vibrations….. the healing continues.
Wishing everyone well. Sending hugs to you as you fight for your health and a return to normalcy.
Hi Jessica,
Thank you for sharing your experience and what’s helped!
I too have been in a complete crash cycle for over a year now because I kept pushing myself with exercising and dieting that just kept making me swell and gain weight. Every doctor I talked to just kept shrugging at my increased body weight and pain, they said I probably had metabolic syndrome and to manage my diet and exercise more. (I already exercised a lot, I’d walk/hike 1-2 hours 4x/wk, and do yoga and gardening 3-4x/wk), then I added weight training and plyometrics and my body crashed HARD! Palpitations, racing heart nonstop 24/7, no sleep, constant flushing, like I was on adrenaline 24/7 for months, full body swelling, brain fog so bad I couldn’t play any type of game or follow conversations. It’s been over a year now and I’m praying I can get back to being able to just walk again.
Showering and getting dressed cause me to crash now… I’m severely limited.
But I’m learning. I have to see pacing, not as a way to level up, but as a way to NOT crash! I never looked at it that way before, I kept hoping I was better and then would try and live a normal life (exercising isn’t even an option for me, I’d like to do just normal stuff like showering and cooking and errands), but each normal day of living turns into a crash for days.
After reading more about PEM, I’m finally realizing I HAVE to NOT crash in order to recover. I lose hope sometimes when I’m back on the couch for days after being able to participate in life again. I think the hardest part is not knowing what I need to do to keep from crashing.
I’ve been taking Paxlovid off label which has helped me a lot! My brain fog is basically cleared, and my swelling has decreased by 60%, my crashes are still there, but I’m able to shower without crashing (unless I do too much cleaning or errands).
And now that I know I’m not supposed to try and level up, and that rest, rest, rest is the way to recovery, maybe I’ll stop crashing at all 🙏🏻.
It’s good to hear success stories like yours. It gives me hope that I too could have a life again!
Just curious what your hemoglobin and hematocrit were prior to blood transfusion? And what your hematologist ran for you that’s not part of normal CBC?
Thank you for sharing your journey and I’m so happy to hear you’re back to living and able to manage work!