Flare ups, COVID & medication changes

[Cassi0]

Mostly just a rant for me to get stuff off my chest - feel free to skip haha.

A few weeks ago, I came down with COVID, for the second time this year. This time round was worse I found, I was out of breath and exhausted for longer, stopped all my hobbies, and completely lost my appetite. It's been a few weeks now, and I still feel like my body is recovering.

I'm trying to keep track of my daily symptoms because I'm struggling to identify what's causing my current flare-up. I travelled at the weekend to see my friend in London (via Megabus cause I can't afford the train haha) - I know travelling can cause my symptoms to flare up a bit but the pain this time was almost unbearable. I think the worst thing is feeling like I lost all independence. The pain is terrible and I'm mentally struggling - what upset me so much, and I know it's a silly thing to get upset about, was my journey back. I was struggling to walk and carry my suitcase (tubes in London are crap when it comes to accessibility) and I basically got stuck trying to get up the stairs, and a very nice lady helped me get up and carried my bags up for me. It was very nice of her and I really appreciated it, and I know it's not a big thing but at that moment I felt like such a lost cause, I felt hopeless and angry that I couldn't do something basic that I've always been able to do. I felt embarrassed and frustrated. The logical part of my brain is telling me it's fine, I just need to take it easy and not over do it, and it will get better, but the rest of me feels like a lost cause. I can't stop thinking this pain is going to be forever. The rest of my life.

I've been trying out various medications from the doctor - most recently nefopam which I didn't think was doing much more than paracetamol, so I stopped it. Before that was amitriptyline, which I stopped because it was making no difference, except now I've stopped it, my sleep patterns seem worse off? Like, For I never used to wake up so much in the night, but now I'd be lucky to get 5 hours of sleep. I've started getting nightmares again and had a false awakening nightmare, which hasn't happened to me in years and was terrifying. I woke my dad up from the next room over cause I was screaming in my sleep apparently. I can't tell if my sleep disturbances are due to come off the medications, my poor mental health or my pain flare-up. Maybe it's all 3, I have no idea. I don't know what other medication options there are, I know it's probably limited to me too since I can't take anything addictive, I just wish there was something that worked. I am tired of trying to explain to people what I'm going through, there are no support groups in my area and no one around me has these problems and I don't wanna be a broken record, complaining about stuff to friends and family constantly.

I don't really have a question or answer, just needed to rant.

[Hazel_Angelstar Administrator FMA UK Staff]

Sending some hugs, and sorry to hear that you are struggling so much. I know that after I had covid, my fibro symptoms flared quite a bit, so that will likely be contributing to your flare up.

It can be difficult to accept that we need help sometimes - and more often than not it is simply our own pride that creates the issue.

A lot of support groups are now offering online support - even if there is not a group in your area, there might be one in a neighbouring area that you could make contact with (drop me an email to [e-mail] with your postcode if you would like me to check)

[Cassi0 in reply to Hazel_Angelstar]

Thank you, I'll send over my postcode now

[Hazel_Angelstar Administrator FMA UK Staff in reply to Cassi0]

Thanks - I'll get it tomorrow x