Is this ME/CFS?

[millie7084]

Hi everyone,

I’m trying to figure out if I might have CFS (Chronic Fatigue Syndrome) or if this could be something else. For context, I had Long Covid a while back and dealt with symptoms like heavy arms and legs that felt like they were full of cement. Thankfully, those symptoms went away for a while, but now they seem to be back.

Here’s what I’m experiencing:

• Heavy limbs: My arms and legs feel incredibly heavy, like they’re weighed down with cement, especially when I’ve overdone it physically or mentally.
• Anxiety/impending doom: If I’ve pushed myself too far, am really tired, or even after having coffee, I get this overwhelming sense of anxiety or a feeling like something bad is about to happen.
• Fatigue link: The symptoms seem to worsen if I overexert myself, though I’m not sure if it’s consistent with post-exertional malaise (PEM).

I’m curious if this sounds familiar to anyone with CFS or other conditions like dysautonomia or post-viral syndromes. Does this sound like CFS to you? If you’ve experienced anything similar, I’d love to hear your insights as I am so so scared about this one. I'm in training college for the army and will most likely have to drop out if it is CFS.

Thanks in advance!

 

[ilivewithcfs]

It sounds like cfs to me. If your symptoms started with viral infection and include PEM and fatigue, it's very likely that it's cfs.

 

[almost]

I’m curious if this sounds familiar to anyone

Yes, sounds familiar -- all three points. I'm sorry that you are dealing with this, and understand the fear of the impact on your future plans. Your goal orientation will help you.

 

[Mary]

@millie7084 - it sounds very much like it could be ME/CFS. I'm calling it ME/CFS instead of just CFS because the name "chronic fatigue syndrome" or CFS has caused so much harm to the patient community - it's trivialized a very serious illness and contributed to it not being taken seriously - "everyone gets tired", etc., or "yuppie flu".

ME stands for myalgic encephalomyelitis, which was the original names of this illness.

Unfortunately we don't have a recognized biomarker for ME/CFS, but I think it would be a good idea to operate on the assumption that you do have ME/CFS, or Long Covid, which often seems to morph into ME/CFS. I suggest this because if you do have ME/CFS, then it's very important to learn to pace - to stop pushing yourself when you don't have the energy. A normal person can get away with this, but with ME/CFS we can't. Pushing beyond our limits can decrease overall functioning. Here's a good summary: https://me-pedia.org/wiki/Pacing

If you do start pacing and stop pushing, I think it can increase your chances of recovery. It sounds like you haven't been sick that long compared to many and thus have a greater chance of recovering.

You might have to drop out of training college for the army. It would be great if you could find a knowledgeable doctor to work with but as you may know, they can be very difficult to find. This subforum might be helpful in finding one: https://forums.phoenixrising.me/forums/me-cfs-doctors.32/

Also, you can create a thread in that subforum asking about doctors in your area.

There's a lot of ME/CFS-related research happening now, particularly since Long Covid appeared. Different treatments are being tried - this forum is a good place to come to for latest research etc.

 

[southwestforests]

I'm in training college for the army and will most likely have to drop out if it is CFS.

If you have access to them, see about having military doctors evaluate you for ME/CFS.
I've not been in the service and therefore do not know how medical things work at the training college stage.

In early/mid 1980s my Dad was one of the first and I think actual literal first US Navy retirement with ME/CFS after 28 years of service, with the disease diagnosed by military doctors in Virginia in the early 1980s.
And way back then 40 years ago the military physicians and psychiatrists he encountered were well aware that the disease was no mere mental condition, and that it was documentably a physical thing.

And get your heart thoroughly checked out, independently of the ME/CFS question.

 

[kushami]

@millie7084 , as you mentioned dysautonomia, have you done an orthostatic intolerance test?

https://batemanhornecenter.org/assess-orthostatic-intolerance/

This link gives very detailed instructions for diagnostic testing, including how to prepare, but you can try it yourself at home without going through all of the prep. Just don’t wear compression garments, chug a large drink of water beforehand, etc.

OI is often worse in the morning, so best to test then, unless you feel your symptoms are worse at a different time of day (quite possible).

How do you fare with large meals, hot showers, standing in queues? Do you often feel lightheaded or faint?

OI is often a part of or comorbid with ME/CFS (nobody quite knows the relationship), so it’s worth checking for any case of chronic fatigue.

 

[andyguitar]

If I’ve pushed myself too far, am really tired, or even after having coffee, I get this overwhelming sense of anxiety or a feeling like something bad is about to happen.

The caffeine from the coffee can cause some people anxiety and the feeling that something bad is going to happen. So can stopping drinking it (caffeine withdrawal). This is often put down to adrenaline levels fluctuating.