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tiredalot

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  1. Hi everyone, I haven't posted in a very long time. Had devastating symptoms last year that made it near impossible for me to function or even walk down the street without sitting down to rest. Prior to getting ill, was very fit and ran at least an hour a day. Was extremely concerned that I couldn't exercise anymore as exercise was an integral part of my life. As symptoms progressed not only could I not run, but even shopping or walking minimal amounts was challenging. Gained more than 30 pounds, all the doctors I saw blamed my symptoms on "deconditioning" . Saw approximately 9 doctors and had a large goiter along with auto-immune thyroid disease that I basically had to ask for the tests to be done and then diagnosed myself because I could not find the proper medical care or dx. Sounds familiar right? Anyway, finally made it to the Mayo Clinic and got the hyperadrenergic POTS diagnosis, and they also thought the POTS was due to deconditioning, which I knew was not the case, (I got deconditioned as a result of the POTS, not the other way around) and by the time I went there, my goiter was so large that a decision was made to remove my entire thyroid gland. I had nodules on both sides, which were growing, so instead of waiting to see what would happen with the other side, they just removed the entire gland. All my doctors, even those at Mayo were fairly confident that I would not get much relief in terms of the dysautonomia symptoms by having the thyroid removed, but I "knew" that the thyroid was making me very sick and getting it removed, caused an almost immediate relief in many of the symptoms. However, then I had a rather long struggle with getting my thyroid medication regulated, and having my body adjust to life without a thyroid gland. So about 6 months after my surgery I started having severe, and I mean severe abdominal pain, felt like my insides were being torn apart. I had never been to the ER before but basically had no choice the pain was so severe it brought me to the ground crying in agony. Had a bad experience at the ER - again, no surprise right. They did a CAT scan thinking it may have been appendicitis and sent me home with some pain killers and muscle relaxants. The pain was so bad that the pain medication wasn't helping, and by the next night I went back to a different ER and got a doctor who seemed to know what was wrong. He said I most likely had an abdominal nerve entrapment, and injected some numbing medication directly into the nerve that was supposed to "block" it for a few hours, along with some different pain medication and muscle relaxants. Several hours later after the medication "wore" off, I was in agony again, on the floor and hoping that even an amputation of my upper leg and lower torso would be better than having the excruciating pain that I felt. And I don't say that lightly, normally, I'm such a research person, and intent upon finding the solution etc, but the pain was so severe that it was just "unlivable" and as I was on the floor this time and unable to get up, an ambulance was called and this time I went back to the ER where they promptly were going to give me a shot of pain medication and send me back home again. I demanded to see a neurologist and said I wasn't leaving until they got me some type of relief, that I couldn't just take pain medication for this issue and the pain medication wasn't helping anyway. So the neurologist when he finally came found out about my history and that I had had a positive paraneoplastic test from Mayo (no cancer was ever found) but I had a positive test, anyway the neurologist decided that I must be admitted and asked why I didn't tell anyone earlier about this. I told him I had told all the ER docs about this, but obviously they didn't know what it was, or didn't care... Anyway, so then they spent the next 4 days re-scanning looking for cancer again, and keeping me on pain medication pretty much around the clock until finally the pain somewhat lessened and was at at least a manageable level. No cancer was found, thank goodness, but I now have permanent numbness on one side in the lower abdomen and spreading into the groin area. It will also flare up sometimes where it is painful as well, but nothing that I can't manage, thank goodness, and since no one was able to really pinpoint why it was so severe or why I am permanently numb I try to just ignore it as much as possible. I refuse to take any pain medication for it, and just live with it now. Whew, so that's a summary of my medical history. Ok, so the good news is that after all those dealings with doctors, I did get some tips that helped, ie: increasing salt, increasing fluids etc, and once my thyroid meds were regulated, almost like magic the weight dropped off. So now, docs can't look at me and just say I'm overweight as I'm not anymore (and wasn't before this happened either) It's amazing how one gets treated even worse with a weight issue and how the medical profession "assumes" you're just sitting at home eating bonbons or something when that's not the case. Oh, well. Ok back to the good news. So I basically came up with my own "rehab" treatment and have stayed away from doctors since the nerve pain issue. But, I am able to exercise again, some days an hour a day, on other days, total sometimes I actually do an exercise class and a one hour walk. I can't run solid like I used to for an hour, but I can run downhill for close to 2 miles which is huge for me given that a year ago I couldn't make it down the street without sitting down. My heart rate is still pretty darn high when exercising when going downhill it stays at about 184-192 or so, and in the class that I take sometimes I have to slow down during certain hard parts for a minute or so as my heart rate will get up to about 200 at which point sometimes it is hard to breathe. Anyway, I know they say to keep one's heart rate at 70-80% of maximum, but if I do this I would only be able to walk and at this point I would rather have a life filled with some type of exercise as I feel it is the only thing that helps me be able to function with shopping etc, then not. I feel as if I am a "marathoner" compared to how I was feeling an functioning last year, so I know that it was the right thing to do to remove the entire thyroid. I had very high antibodies and Hashimotos which in my opinion was just the straw that broke the camel's back with regards to the POTS. Anyway, so now I am pushing myself with exercise and functioning in my opinion very well, although I'm still tired a lot, I just make myself exercise and somehow at this stage (crossing fingers) am able to just push through it whereas last year when I tried "pushing" nothing happened, and it didn't matter how much I tried, I just couldn't walk or function very well. But within the past few weeks I have had a "new" issue come up and I wanted to ask anyone here if they had periods of time when dealing with POTS that your sweating patterns changed? After the warm up basically just stretching in my exercise class I am sweating rather hard, after the cardio portion others in the class barely look warm and I have water dripping off my legs, arms, everywhere basically. I'm hot a good bit of the time now, whereas before I was always "cold" although since except for the antibodies prior to the surgery my "thyroid levels were normal" therefore I must be fine,(according to the docs) even when I knew I was not, but my body temperature has seemed to change recently and go from always being cold to now always being warm. Thyroid levels and everything else still seems ok, so I guess this is just the autonomic nervous system perhaps adjusting again. I'm not too keen on going back to the doctor to ask, as I don't really trust their answers much at this point anyway, and thought I may get more insight to see if anyone here has had a change in sweating patterns with POTS. Especially if you have added exercise, and although it's been several months since I've started rather strenuous exercise (or should I say strenuous for someone with POTS).
  2. Thanks for sharing these photos. Lovely pics and it's so nice to see your children enjoying themselves--especially after reading about Anna's very difficult TTT. Please tell her I think she is very brave.
  3. Hello Everyone, thanks for all the great tips and warm welcome. Your support has helped already and I'm grateful for all the replies.
  4. Hello everyone, Just recently was diagnosed with POTS and having to assimilate lots of info quickly. I'm new here and was wondering if anyone had any advice for how to explain POTS to different people. Here's my dilemma. 1) For close friends - I'm not having a difficulty explaining, even though they've never heard of POTS with my dearest friends I can share some of the details but more importantly, the struggles of trying to coming to terms with finally knowing what is wrong etc. 2) Close acquaintances - in a business sense - what do you say to those who you really don't want to give all the details to, but those let's say that you may have partnered with in the past on a business project. Since I don't "look" sick, they see me and think everthing's fine which it's not. I have to make some adjustments in my work schedule and can't go 100 miles an hour like I used to. When people say things like "sure hope you've gotten everything taken care of and are feeling better", how can I respond when I need some people to know that things will be different, but don't want to explain all the details? 3) Regular friends - neighbors etc.... - those who may know that I've been traveling for treatment and ask how I'm doing etc.... Has anyone else struggled with this before and how did you handle it?
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