u/BellaPona

I am about 8 months post viral infection (COVID) that gave me all my current health issues. For about 3 or 4 months there in the middle Id swear I was what you would consider almost severe ME/CFS. I definitely have dysautonomia or some kind of vein insufficiency (official dx as POTS) some sort of connective tissue disorder (awaiting genetic test results), Functional neurological disorder (official dx) and recently discovered some sort of blood sugar issues. I had PEM, at least 3 big crashes that I could track and they were delayed by a few days and resulted in worsening for the next month at least in a baseline. I got to the point where I couldn’t even push myself to the bathroom in my Rollator. I still have brain fog and feel very low IQ/have memory issues. So I had my tag on here listed as severe because I fit that, with sensory overload and all. However recently I’ve made some pretty miraculous improvements. My life is still pretty small in comparison but it’s like I no longer meet the criteria for PEM? I get a POTS flair or MCAS flair but it’s no longer paired with the intense worsening. I still get nerve pain and such but I push myself and push myself and……PEM still doesn’t come. I was diagnosed with CFS without being told about it by my doctor and the only reason I noticed was because I just happened to see it on my chart while at urgent care once for a swollen finger. So of course I have to inform myself and that’s how I got here. I’m terrified to even make this post because I’m very superstitious. I don’t know what to think.

I spent years putting my hidradenitis suppurativa in to remission. I likely built up a natural estrogen dominance. Now that I have MCAS, that dominance makes me basically completely disabled from right before my period to the end of ovulation, and why I feel like a new person in my luteal phase. I got so bad that I started taking BC to skip my periods. It’s been sort of working, I still get my period but it’s not as symptomatic. However the introduction of progesterone, a mast cell stabilizer, has triggered my HS and it’s devastating my skin. I don’t know what to choose, keep taking the BC and deal with my skin being ruined and painful? Or stop the BC and try to find a different way to deal with my mast cells. It’s all a mess. Anybody else with HS and MCAS here?

I took a fluoroquinolone around the end of January, prescribed to me in a clinic, a desperate patient who just had a chemical miscarriage and was terrified I was suffering from a terrible kidney infection. If you’ve ever had double flank pain from a kidney infection, you never forget what that feels like. So I sought help immediately. Clinic gives me pills without doing any tests, since I was without insurance at the time. What a mistake that was. I take the full course, go back to the explaining I still feel awful. Did a urine test and culture. In the time it took for the tests to be completed, the kidney pain went away and the tests came back completely clear. I never had an infection. They prescribe me a different med for a yeast infection, and I stupidly took it. That’s when the symptoms got really bad. With my Marfan’s I was very lucky I didn’t have any tendon ruptures or heart involvement.

Months and months later now, I’ve since realized I had a COVID exposure only weeks before that period in which I had a bloody nose and all the other typical COVID symptoms. I had basically the perfect storm of awful things happen to my body all at once. Now I barely function. It’s at the very least very reassuring to see success stories here!

Anyone else only get blood pooling on one side? Lately for me it’s just in my right hand, my legs and right arm don’t swell up or change color.

I had my worst PEM to date over the 4th of July. It ended after about 5 days and since then I’ve been feeling like my baseline increased? I’m still mostly bed bound but I feel stronger and can handle more cognitive tasks, socialization etc. I’m still wary about testing my boundaries but it’s interesting how it feels like a sudden lifting of fog.

Edit: So glad I gained back brain cells just in time to read a post from a 47 minute old account trying to postulate on how to get this sub banned, on the other ME/CFS sub. Ah man what a great use of my spoons.

How do people go years without knowing, hanging around mild/moderate? It’s only taken me 6 months to go straight in to severe. I haven’t even had that many crashes, and I’ve spent 90 percent of the last 4 months completely bed ridden of my own choice. Yet here am not getting better with pacing. I was only mild for probably like 4 weeks. How do people go YEARS that way?

Does anybody else get really bad intense tinnitus randomly? I can genuinely feel it in my teeth.

I didn’t wear my watch for a few days to give my wrist a break since I have EDS skin. I put it on today and now I’m having an allergic reaction to it 🫩. I NEED to be able to see what my heart is doing (POTS). Now there’s Petechiae and red splotches and itching. Anybody else know how to get around this?

I just can’t eat anything that dries out my mouth anymore, doesn’t matter how much water I drink, it’s like I can feel the area under my tongue and my tonsils swell slightly and it feels like a barren waste land. Anybody relate? Before this I honestly didn’t think I suffered from dry mouth, turns out I have really bad post nasal drip from allergies that makes it so I never really notice. Now my teeth are super sensitive/hurt just from breathing with my mouth open.

I know they aren’t very good for me and they trigger my MCAS but I’m completely addicted to potato chips, they are the only thing that satisfies that craving for salt. I drink 5,000 mg of sodium a day in just electrolytes packets, drink tons of water, take vitassium tablets, but nothing gets rid of that craving. Super salty fries or tater tots get close but I’ll still crave the potato chips anyways. I can’t eat pickles unfortunately because they trigger my MCAS real bad, I’m thinking of trying Ramen Noodle broth next to see if I can kick the craving.

So much of ME/CFS sounds like Gulf War Syndrome, from the mitochondrial dysfunction and Neuro inflammation down to the disbelief by doctors and complete disregard by the medical community. 700,000 US soldiers came home debilitated and were told for a while that they were just imaging things. MILLIONS of people live with ME/CFS and are told the exact same thing despite science suggesting otherwise. There’s still a no “cure” (affective treatment) for neither. One just got recognized by the government and VA. When will GWI’s get the funding they deserve for actual treatment options? What’s the road block?c

I’m used to sudden frustration and anger due to ADHD but typically I can employ coping mechanisms before I get to “unreasonable cyclical thinking” (iykyk) but this was……something else. I was so fucking mad! Luckily my rage mostly just amounted to tears but it was uncontrollable. I kept envisioning hitting myself with my own hands and ripping my hair out. It didn’t feel like ADHD and anger AT ALL! I only take Zyrtec right now, one a day because I can’t tolerate H2s and I don’t want to push it, so it takes a couple of hours to kick it due to slower motility before it calms the storm until I eat again at dinner.

Anybody else like to watch this show because it’s nice to think there are doctors out there that like to actually investigate what’s wrong?

I know that most of it is rare presentations for illnesses and “hidden tumors” just for the drama of the show, most of that stuff isn’t super accurate or is super unlikely. Stuff has to be a mystery, House is Sherlock, so investigating is what he does. But it’s almost laughably stark in contrast to real life. You could be bed ridden like me and unable to get past basic CBC and ANA tests. Doctors do not give a fuck. I’d 100% sign up to be tortured and pushed to the brink like House does so often in the show if it at least gave me answers. Or maybe I just really like Hugh Laurie.

Hello all, I’m new to all this. I was recently made aware that random stabbing pains that make me jump and shout are not normal. Just wondering, how does the pain present/vary for you? Anyone in here got a comorbid diagnosis of POTS/MCAS/Marfan’s and FND? I’m trying to make sense of flares and understanding just what triggers it for other people because so far I can’t tell. At first I thought I was getting the widespread pain from MCAS because it always accompanies a hive, or ME/CFS as a form of PEM, but it’s been 5 days of mild but disturbing body wide joint/muscle/nerve pains.

Im too young to have my whole life taken away, just old enough to have gotten my life started. I at least have people that love me and care about me. I got to do some fun things while I could. But their love can’t touch this darkness. I’m truly alone to go through it.

One of my best friends is getting married, something I was hoping I’d be there for at every step of the way. She asked me to be her bridesmaid. I don’t have the heart yet to tell her I probably will never leave this bed again. All I do all day is cry. I know it doesn’t help but what else is there to do? The grief feels like a terminal illness diagnosis.

I have dreams about meeting my friend’s babies, holding them in my arms and shushing them when they cry. I wanted to have a baby myself.

I must be a horrible person to have deserved this. I must have done something bad. I always thought it would be cancer I’d have to be afraid of, or death. Not a living death.

What does your guy’s pain feel like? I’m having widespread muscle and joint pain with burning skin and apparently those are all symptoms of FND but I’m having a hard time convincing myself it’s not ME/CFS.

I don’t have a diagnosis and don’t know if I have it but one thing I’ve been trying to figure out is if I have PEM. Right now it seems like I do not, I just kind of always have really bad and unpredictable orthostatic intolerance, hyperPOTS, and MCAS type reactions to everything. I don’t really experience pain very often if at all but I am still permanently losing feeling in my left hand fingers? The only “crashes” I can accurately recall are increased fatigue and neuropathic electrocution/burning while on my period. Every time I’m on my period or right before. It’s just so confusing because Dysautonomia is an energy limiting illness that can result in “crashes” or “flares” but how do you tell that from PEM? Despite all this I’ve been completely bed bound for months just out of fear but also because my HR is incredibly unstable ALL the time. Was completely untouched by beta blockers.

Anybody else seemingly bedridden by their MCAS? It’s most likely feeding really badly in to my hyperPOTS/dysautonomia and whatever other issues I have. I can’t get a diagnosis because I’m stuck with an insurance company that will not refer me to allergist, so I’m pretty much unmedicated right now. I have all the symptoms, random anxiety, weird singular hives, minor petechiae, scaly skin/skin reactions, rotating mystery pains, delayed reactions, neuropathic type pain, tingling and numbness in my face and limbs, tinnitus, interstitial cystitis, chronic sinus issue, patchy face flushing, extreme orthostatic intolerance. Yet they’ll just test my tryptase and it always comes back normal.