January 15, 2016 at 3:46 pm #946emyemyemyyyParticipant
Hi, this is my first post, not totally sure if I’m in the right section… (: So I’ll introduce myself, my name is Emy I’m almost 21 and I’ve been sick for 7 or so years, POTS, EDS, neuropathy, AAG, you know the drill, I won’t go into it all.
So I wanted to start a discussion about this because I hardly ever see anyone talking about it, especially in a more professional setting, but whenever I do bring it up to other spoonies everyone agrees and has their own experiences to share. I have developed HORRIBLE anxiety due to my illnesses and just being sick in general. As an example, it took me almost an hour to get into my bed the other night because I was having full blown panic attacks over the physical action of GETTING INTO BED. That’s just one example and I don’t have the spoons to go into it all right now, but I just want to know if anyone else has experiences like this? To add onto my bed thing,I feel like I spend so much time in there feeling awful and have had, honestly, completely traumatizing experiences in there (I don’t think there’s any way for being unable to sleep because you’re at a 9 on the pain scale and feeling so immensely sick you honestly think you’re going to die can NOT have some type of mental repercussion) that I have a ton of bad feelings attached to it. I deal with anxiety about leaving the house, going certain places, showering, all kinds of normal life stuff, and it all always comes back to my disability and my body. Also, a lot of anxiety about doctors and feeling like a science experiment all the time, always putting creams on and taking pills and my entire life revolves around my body, and I don’t have much of a say. I would LOVE to see a doctor talk about this or honestly anyone talk about it, anyone?January 16, 2016 at 3:46 pm #5795Dr. DianaKeymaster
Hi and welcome! I’m so glad that you brought this up! So many are afraid (and rightly so) of being labelled with a psychosomatic illness if they discuss this. I experienced this when my inflammation skyrocketed (video is called “MCAS card” on the front page of the forum). I couldn’t even look at an ipad if there was a photo of someone on a high ledge! As I got the inflammation under control, it went away (it took many months — ugh). If inflammation is at the heart of your anxiety, sometimes reducing the resulting oxidation with N-acetyl cysteine can be hugely helpful (it was for me — I even kept it by my bed and took it if I woke up in the middle of the night).January 19, 2016 at 9:17 pm #5803iamjamjarParticipant
I feel exactly the same and have had so much treatment for anxiety and depression but because they don’t know how to treat my POTS and EDS. They keep coming back. It’s so draining telling people I am anxious about everything, including going to the cardiologist to go over the same symptoms, for me to then feel like they are not listening when I say how utterly exhausted I am or how my migraines make me want to pull my head off not to mention my other symptoms. I hate that you feel the anxiety too but I hope you can take some comfort in not being alone in feeling this way.
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