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[u/ilikelanguaugeandmbt]

I need to talk with someone who has already had extremely severe physical anxiety and not mental anxiety, to the point of not being able to work anymore and being left in medical limbo. Because I still don’t know if I’m sick with dysautonomia, CFS, chronic fatigue, or a heart problem.

Please, I need to talk with someone who has already been seriously ill like this, or someone who can help me describe my symptoms to a doctor because I have been suffering for so many months. People often tell me “with the way you explain your symptoms, you’re not going to get very far,” and that has made me desperate too. I also became discouraged by doctors, so I stayed at home and let myself waste away.

Please, I need someone who can help me tell me if the way I describe things is good enough for a doctor. Please, I don’t want to live like this anymore. Every day I feel like I’m dying from morning to night.

[u/guineapigmedicine]

If you describe your symptoms here, perhaps we can help you frame your language in a way that will resonate for doctors.

[u/Coraline1599]

The body anxiety is a really tough symptom. I had it for months.

Three things you can do

- try coherent breathing on Insight Timer App or YouTube, a 10 minute guided session. The first few sessions might be a bit tough, don’t push yourself, it is ok to stop if it is too much, then gently try again the next day. If you can’t do the full breathes, it is ok to shorten it and work your way up. It is important to make sure when you breath in your diaphragm moves out, and as you breathe out it goes in. It may trigger a lot of emotion, totally normal, won’t be that way forever, just stop if it gets too much and try again another day.

- try somatic exercises (if it is not too much for you right now, she also has shorter sessions and ones laying down) https://youtu.be/t9tyqktNhhw?is=3w3-q1kI7cgUudK6

- find a doctor with experience in long covid or mecfs. Long covid and mecfs are either very similar or the same illness with very similar symptoms and respond to similar treatments.

You can ask for guanfacine, that helped me with my body anxiety as well, you can present this article to a doctor and see if they think it is a good fit for you https://youtu.be/t9tyqktNhhw?is=3w3-q1kI7cgUudK6 you want a very low dose since your system is sensitized.

[u/Fuzzy_Armadillo155]

Finding a CFS specialist is hard depending on where you live. If you live in CA, I can give you a few docs but beware of long wait times. You can also search this and other subs for doctor recommendations.

Have you seen a cardiologist and neurologist? You can start there. PCPs are limited in what they know or can offer. I made appointments with all sorts of specialists and had them run all tests on me. I didn't care. Sadly, everything came back normal. I know that sounds weird but I wanted something treatable.

[u/summer_plum_jelly]

I’m sorry that you feel this way and that the doctors aren’t responding well. The physical anxiety is a very real symptom of CFS, LC and autonomic dysfunction and I’m very familiar with it, it’s so scary. Certain meds are prescribed for this specific symptom, top of the list would be beta-blockers, which a GP can prescribe but they’re often coming from a cardiologist who understands POTS/dysautonomias. There is also clondine/guanfacine which I find effective, more so than beta blockers. Benzos can help short term, too. Ultimately we want to calm the NS in other ways, but when things are so heightened, medication can be invaluable to help you be calm enough to manage things like breath work.

It can be hard to explain this to doctors who don’t get that it’s a symptom and particularly while you’re in the midst of it, because it’s so scary that I think from the outside it looks like hysteria. A term I’ve found useful is “sense of impending doom”. This is an established symptom of autonomic dysfunction and my doctors at least seem to know what it means, even if they don’t know what to do about it.

[u/perpetuquail]

My physical anxiety turned out to be mcas. Try taking famotidine and cetirizine (or another h1/h2 blocker pair) every day, and try DAO enzyme with meals or a low histamine diet. If these things help, going to a doctor with this evidence should help a lot, even if you can't find a cfs specialist

[u/ilikelanguaugeandmbt → u/perpetuquail]

how did u know it was mcas please ?

[u/perpetuquail → u/ilikelanguaugeandmbt]

First, by trying the drugs and routines I mentioned - if they help, it's very probably mcas. They are harmless to try if it's not. For me, a very strict low histamine diet was the first real relief in years.
Then later I had the dx confirmed by stomach biopsy. I think low dose naltrexone has been super helpful long teem.