I have been sick for years and have the POTS diagnosis but that's all. I have many symptoms that I don't believe are technically related to POTS and I have been searching for my cause for years. I'm at the point now where I don't know what to do next. I seem to be getting worse and spend my days just laying around. Everything is a struggle. My PCP has literally thrown her hands up and told me there is nothing she can do for me. She won't refer me to any specialists and I cannot self refer due to having an HMO. I do plan to switch to a PPO at the end of this year so I can see the specialists I want to see.
I have chronic diarrhea (sorry TMI), frequent urination (at least once every 30 minutes), tingling and numbness in my feet, hands, legs, arms, and face. I have loss of feeling on my right side and seem less coordinated than the left side. I feel completely drained 24/7. I'm shaky. All blood tests come back normal for the most part. My fasting blood sugar is a bit high and I have low HDL cholesterol, as well as low lymphocytes. The problem is I cannot seem to get care no matter how much I plead. I'm told I just have to live with it. I am 100% certain that something is causing my POTS and I do not want to rest until I find it. This stupid disorder has stolen 10 years of my life and hindered my relationships with my family and friends and I cannot take it anymore.
My PCP says I have had sufficient testing, but when I look at the list of causes for POTS I haven't been tested for even half of them. So how can they be sure they aren't missing something? I feel like I will die every single day. I don't even know how I'm still here.
My initial theory was that I really was just deconditioned. I was a very active child and teen and was waitressing from the age of 16 to 23 when I gave birth to my son so I was on my feet for 10 hours a day minimum (even while pregnant). As soon as I had my son I was laying around all day as I was tired and off work. Several months later is when I started being symptomatic. So I wasn't on bedrest but my activity level was down to almost nothing. It has just continued to get worse. Could going from being that active to extremely sedentary be enough to trigger POTS? And the fact that I have never gone back to that much activity be keeping me sick? I know it's a long shot and my other symptoms would point to that not being likely. I had a better period last summer where I was actually able to exercise upright and even did a warrior dash. It knocked me down for days and was extremely difficult. That period of feeling maybe 30% better only lasted less than 6 months.
What would you guys do? Should I pursue the cause? Or should I just accept that I will be like this for the rest of my life and resort to living a life of doing absolutely nothing but being a burden? The only tests I have coming up are an echocardiogram (have had several) and an EMG due to the issues with the right side of my body and a recent MRI showing nerve compression (neurologist says the neck and spine issues are not the cause of my POTS). Up until now I have been pushing through symptoms and trying to ignore it. That hasn't proven effective. I am rapidly becoming deconditioned even more now since I am home due to covid, which is making my life even more difficult. I had planned to start forcing myself to get up again. Like if I can get up for even a few minutes every hour maybe I can retrain myself to be upright. I do ride my recumbent bike (not pushing hard at all) for about 20 minutes a day broken into 5 minute chunks.
Any advice is welcome. I have gotten so tired of trying to advocate for myself and getting nowhere. I have looked into functional medicine. Spent $300 for a consultation only to find out that it would cost me several thousand more to get the tests done that they want to do. I cannot afford that. This illness has already taken all my money. I should also note that my entire family is healthy, no issues like this or anything else really. So whatever it is I do not believe it's genetic in nature. At the moment I feel completely overwhelmed with all the information I am finding online and really not sure where to go from here.
I know there are many others who are worse off then me, but this is my life and it's unbearable. I'm sorry for ranting I just want some help and I'm desperate. I pray to God every night to help me figure this out.
Hey girl,
Very random, and personal, question.... do you happen to have breast implants?
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in Dysautonomia Discussion
Posted
Hey girl,
Very random, and personal, question.... do you happen to have breast implants?