Getting a Diagnosis
I have not been diagnosed with anything physically wrong with me and I didnt know anywhere else this post would go, so here I am.
For over two years now, I have had a lot of different physical issues. Theyre mostly not too bad, but Im also a runner, and they have affected that (Im a long distance runner, and the last 200 meters of a run, I occasionally start seeing stars and feeling nauseous. When I finish my runs, there are times where I have had to lie down on the floor for hours and have trouble taking a shower because of my vision going black when I sit or stand up. Ive run for years, and know the feeling of being out of shape, and this is not that. I eat enough and drink plenty of water.) This past year, I found out what POTS was, and it turns out that I have almost every single symptom. Random episodes of extreme fatigue have probably affected me most in the sense that they cause issues in my day to day life. The doctors Ive gone to have all suggested that its anxiety at some point during the conversation (with the exception of my psychiatrist, who treats me for generalized anxiety disorder). I know that its not anxiety. They feel different. My anxiety often makes me very irrational, and this doesnt do that. I live in a relatively rural area, so there arent any POTS specialists here. To those who have gotten a diagnosis: is it worth going to a specialist and getting one? Do you have any suggestions? Im pretty discouraged.
@Rainbows43
It can be very frustrating to have things going wrong and not have any clear answers. Neurological issues can be tough to diagnose. I have neurological problems myself. Sometimes doctors find it helpful if you document your symptoms, and every detail that might help, the date and time and what activities you do and what you eat if you want to go that far. It is also helpful to educate yourself, as I see you are already doing. Good for you. Diagnosis limbo is not a fun place to be; I am delighted you came here for support. What sorts of things do you do to cheer yourself up when you feel discouraged?
@BlindGrapefruit when Im frustrated by not being taken seriously, I usually try and think about how I will take concrete steps so that that doesnt to happen to future patients of mine (Id like to become a physician). I know that theyve probably been taught (whether implicitly or explicitly) that there are a lot patients that are just attention-seeking, so although I get angry, it tends to be more at the attitudes surrounding mental illness and sexism. I do try and record symptoms everyday, but I usually wait until the evening to do so, so I may be missing things. I have been trying to take pictures (my hands and feet will turn blue or purple sometimes) but its not consistent. Part of me thinks Im just making everything up because Ive been told its anxiety so many times, but I also know that that is probably not correct. And right now, Im not even sure I should pursue a diagnosis, because there isnt much that could be done if its POTS. Im just worried my fatigue will interfere with my coursework in the fall, which I cant have happen (Im taking a lot of courses that are very important to do extremely well in).
I think it's often helpful to have a diagnosis, as it can be confirmation what it's not - which in of itself can be really helpful.
Even if there aren't treatments yet, there may be in the future and getting the diagnosis beforehand can spead up the process of getting access. There is also the documentation aspect - accomodations, specific supports, etc. and even if one diagnosis alone doesn't qualify, if new things come up the combination might make a difference.
I do understand though how difficult it can be, so it comes down to looking at the benefits vs the costs and making that judgement based on your own circumstances.
