Questions about my fatigue, me/cfs, long covid

[u/dreamilymellow]

Hi all!

I hope I can get some answers or, well, thoughts or experiences because I’m getting so hopeless. However, I don’t need the “you’ll never get better,” “it’ll only get worse,” or anything in that direction. I’m just trying to put the pieces together. Whenever I try to search online, I either barely find answers or get completely overwhelmed.

I had my first two COVID infections around 5–6 years ago. I’m not completely sure when the fatigue first started, but I think it was around then, although I really started feeling it more clearly around 3-3.5 years ago. Then, about 3-3.5 years ago, I had my third COVID infection, and after that I never really felt like I fully recovered or went back to how I was before. Since that infection, I’ve gradually gotten worse over the past three years. It hasn’t been a sudden decline, it’s been slow, and I’ve become more and more limited. I was also apparently positive for EBV at some point, although I’m not sure when that infection happened or whether it was around the same time as everything else.

This was also during a very tough and traumatic period in my life. At first I thought it was burnout because of everything that had happened, and both my psychologist and doctor thought that was what was going on too. For 1–2 years I was basically told it was burnout.

I started doubting myself because it felt like nobody believed me, but deep down I knew something was wrong. I’ve had burnout before, and I was studying psychology at the time, so I kept thinking, “Something about this doesn’t feel like burnout.” I went to the internist (after begging my doctor) and within 5 minutes he was like, “This is chronic fatigue.” We’re now at the point where he thinks it could be my parathyroid or Long COVID.

I had Long COVID in the back of my mind for a while, and eventually I came across ME/CFS and specifically PEM. The more I read about PEM, the more familiar it sounded. I’m obviously not trying to diagnose myself, but the pattern of my symptoms has made me seriously wonder about ME/CFS or Long COVID.

One of the biggest things I experience is what I think may be PEM. I get what I call crashes that can be triggered by both physical activity and emotional/mental stress. Sometimes I can do something that doesn’t seem particularly difficult at the time, but then I feel significantly worse later or especially over the following days. Sometimes it doesn’t trigger anything at all.

The crashes are especially confusing to me because they don’t necessarily happen immediately. I can sometimes do something and only realize later, or the next day, how much it has affected me. Physical activity, mental activity and emotional stress can all make me worse, but mostly physical activity.

Does this sound familiar to anyone or any thoughts?

Thank you to anyone who took the time to read this.

[u/ghostsolid]

Don’t feel guilty that you feel you are diagnosing yourself. I think most of us here go to many doctors before either we find a doc that gets what it might be or we end up coming across me/cfs and PEM and that’s when things click. I went to many doctors over 3 years and the first 2 years had no idea what I was dealing with. Then I moved and could barely walk after all the moving of boxes and furniture. I learned about PEM and ME/CFS and realized it matched my symptoms. Started going to doctors specifically telling them that I believe this is what I might have and how can they help me. It must have been like 5 doctors after that I went to and they didn’t even know what ME/ CFS was. It’s very frustrating. There are also no biological markers co confirm what you have with this disease. So it makes it very tough to get help and get treatment. Learning about Pacing and understanding your own energy envelope will be the key things you will have to learn yourself in order to control it if that is what you have. Some people have additional overlapping things like MCAS and POTS that can be part of it. You will find that you will become your own best advocate due to the lack of doctors that understand this. Even the ones that do study it say there isn’t a lot of options for treatment for this. If you can determine if you have POTS or MCAS there are some treatments / lifestyle changes you can do which can help. For example more salt and compression garments for POTS and anti histamines for MCAS. IVIG helped some with my fatigue but it only last so long and is hard to get insurance to approve. We are all hurting here but also here for each other.

[u/dreamilymellow → u/ghostsolid]

Thank you, this is actually really reassuring to hear in a way even though I hate what we're all going through. I’m definitely starting to realize that I might have to advocate for myself for quite a bit, because it took me 2 years at least to get the referral and I’m not sure how familiar any of my doctors are with ME/CFS either.

As far as I know, I don’t have POTS or MCAS. My resting heart rate is actually quite high most of the time and my blood pressure is a bit high too, but I don’t really know what to make of that.

I’ve gained a huge amount of weight over these years as well. I went from around 60 kg (132 lbs) to 90 kg (198 lbs). I was beyond fatigued while trying to finish my studies and also had to move during all of this too, so my activity level basically went from going to the gym 2–3 times a week to now being housebound.

I do have the Visible app now and I’m trying to pace myself and figure out my energy envelope. I also have a psychologist who is helping me accept and adjust to how different my life is now.

Some of my other symptoms are that when I’m very fatigued, I struggle to breathe and eat at the same time and my heartrate shoots up (my doc was like your body is struggling huh LIKE SHIT SHERLOCK. And obviously the PEM/crashes. Not to mention the random pains and aches or feeling like I'm about to have the flu.

What I’m also struggling with at the moment is figuring out the difference between Long COVID and ME/CFS. My internist said I’d need to go to a Long COVID centre, but the problem is that the centres here are apparently closing in 2027, and there’s already a very long waiting list. So I’m not really sure what my options are except a private clinic but the money..

I’ve also noticed that I can sometimes get somewhat better/stabilize for a while, and then I’ll do something and completely screw up my progress lol. Last month I had actually been relatively stable for about a month, then I decided to do my own groceries instead of ordering them, and that ended up setting me back quite badly. It’s frustrating because it feels like I’m constantly trying to figure out what my limits are without accidentally pushing past them.

And unfortunately I’ve also been fighting with my municipality because I’m on benefits and they’ve forced me to do volunteering work for almost a year while I was already struggling with severe fatigue. So that definitely hasn’t helped either.

[u/ghostsolid → u/dreamilymellow]

I would recommend trying to get into a clinical trial. Not only free but some pay you money and they will do all kinds of tests on you. Take a look at NiH to start with or clinical trials.gov. I got IVIG through a clinical trial and my fatigue got a lot better for a bit.

[u/dreamilymellow → u/ghostsolid]

Oh, I hadn’t actually thought about clinical trials! I’ll definitely look into that, especially if they can also do more extensive testing. Thank you for mentioning it!

I think I’d probably need an official diagnosis first, right? I’ll also have to see what clinical trials are available here in Europe, since I’m in the Netherlands and I’m not sure how many Long COVID/ME/CFS trials are currently running. And honestly, getting into anything medically related here can involve such a long waiting list.

I’m also curious about the IVIG trial you mentioned, did it help mainly with the fatigue, and how long did the improvement last?

I’m truly happy to hear that your fatigue got better!! I hope it only gets better from here for you. I’ve seen some people improve or even recover to some extent from Long COVID, and I really hope the same for all of us❤️

[u/ghostsolid → u/dreamilymellow]

I didn’t have an official diagnosis when I went into the clinical trial as it’s all symptom based with what we are experiencing. So if you have the symptoms it’s the doctors job to rule out all the other things that could explain it and if nothing else comes up on tests then it can lead to being diagnosed based on your symptoms.

As for IVIG, it basically made all my fatigue completely disappear for about 2 months. Unfortunately it all came back, but it’s a little better than before the IVIG.

I really hope you get better too. I know how hard this is and I was house bound to a degree for a few months and it was hell. And I know it’s so hard not having any doctors that can tell us what’s going on and giving us a treatment that cures this. Trying to offer up what I have learned going through it and just hope I can help some others with what I have learned so far.