CFS symptoms suddenly got worse

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I've arrived at the diagnosis of CFS in quite a roundabout way. I was first diagnosed with chronic pain syndrome at 14, I was diagnosed with POTS at 24, and my GP just recently, at 26, told me that all my symptoms fit with CFS. This was quite a relief in some ways because I knew there was something wrong with my body but all the tests I do always come back totally normal and most doctors just assume all my symptoms are due to stress.

Because of the chronic pain and the chronic fatigue (which I always assumed was because of the pain) and the POTS, I never was fully functional but I did have a manageable life. I worked 1 day a week, went for walks and could do some activities. About 3 months ago that changed and I don't know why.

Three months ago my symptoms all just got worse. I started to have really bad headaches almost every day, my heart rate was constantly high instead of just when I stood up, I started to have muscle twitches which have just become worse since, I had really intense stomach pains after dinner a few times a week, I had PEM after doing stuff I could do easily before this. I would do the laundry over the weekend and just be exhausted the next 3 days. I can't go to work anymore, can't do the groceries anymore, I can't even sit and watch tv in my own living room or read a book in my own garden for more than an hour without my heart pounding and my head killing me. The brainfog is way worse too.

My doctor has no idea what's wrong. I had blood work done which was all negative (with the exception of low blood sugar but the doctor said that wouldn't explain the symptoms). My doctor now assumes I'm depressed again (even though I'm not and I've told her this many times) and she wants me to go see a therapist. She did prescribe me beta blockers which do help keep my heart rate down, but they don't help with any of the other symptoms.

I'm quite new to the world of CFS and I don't know what's normal or what I can do to help. My normal coping strategies just don't cut it anymore. Is it normal for symptoms to just become worse all of a sudden? Is there anything I can do to make it go back to the way it was before? I haven't been ill and nothing really changed when my symptoms suddenly got worse. I'm really struggling to find a way back to normal so I can at least function a little bit again. Any advice would be greatly appreciated.


I don't know if this is a common thing with CFS but I have also noticed over the past few months that I get startled by almost everything. And I mean like with a full physical response (Heart jumping, involuntary movement, etc). And it's not big sudden sounds or anything. If someone is preparing food in the kitchen I can get startled every time their knife hits the chopping board so to say. Is this something that happens with CFS or is this just some weird issue I have?

Thanks in advance for any help!

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Thanks for your help!

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