houswoea Posted April 12, 2012 Report Share Posted April 12, 2012 Hi friends,I am desperate for your help. I don't know what to do! Two years ago when I was diagnosed, things were rough. I couldn't get up at all, I was in so much pain that I was addicted to sleeping pills and it was terrible. Things got better though, so much better they thought I "grew out of it" though I haven't grown in like nine years (I'm 22).Okay, so two weeks ago, I had a flare up and I wasn't worried because that happens, but it hasn't gone away and I'm looking at dropping out of school again. I don't want to. I am so close to graduating. It's not fair!The thing is, my heart rate has been relatively stable, staying in the 70s-80s. When I was first dx, it would run in the 120s even when I was laying flat.Also, my blood pressure has not been low. When I was sick before it was 70/40 or lower. It's been just fine, holding at 110/60 with midodrine.Drs. have no idea, just blame the pots,or don't even know what that is. Please help me! What the heck is wrong here?! Quote Link to comment Share on other sites More sharing options...
Trach Posted April 13, 2012 Report Share Posted April 13, 2012 What are your symptoms? Did you see your POTS doctor or a regular doctor? Can you tie any trigger to your flare such as a sleep problem? (that is one of my big triggers)I am not the right person to answer because my flare has never gone away. But I do know that some people flare for various reasons and others for unknown reasons. I understand that some people can have normal vitals like you, but still feel horrible. So I would go back to the basics that worked for you before. You should not have to drop out of school. Talk to your professors and explain your situation. I thought i had seen a link for college medical disability information somewhere on this forum.I hope you feel better soon,Trish Quote Link to comment Share on other sites More sharing options...
houswoea Posted April 13, 2012 Author Report Share Posted April 13, 2012 It's mostly because I can't get to class without crying in pain the whole time. I've missed two weeks so far. Plus, I'm an early childhood special education major,so I have to work in the preschools. I have no idea what causing the flare. Nothing changed! I saw an ER doc, they never know anything, and I saw my primary. I guess I could call my mayo guy, but I'm scared they will tell me I'm just crazy.My symptoms are mostly that I just can't be upright without being in incredible pain, like my whole body is just freaking out! And I'm so tired. I'm just skeptical because it's not like my usual flares, with high HR, chest pain, and passing out. I haven't passed out once, and I haven't even blacked out. And getting IV saline didn't help!I want to go to school so badly, and I hate that this is getting in the way. It's very depressing. I know I can't get medical advice here, I'm just hoping for leads or suggestions. Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted April 14, 2012 Report Share Posted April 14, 2012 Oh, I hope this is just a temporary flare for you and that you don't have to quit school. I couldn't tell from reading this exactly which kind of pain you have, but I'll tell you something that helped me with my chronic pain issues. I discovered through my usual trial and error experimenting, that I was getting too much calcium (which causes muscle contraction) and not enough magnesium (which causes muscle relaxation), so my back and neck were always super tight, with lots of nerve pain in my thighs, hips and wrists. Now that I've drastically reduced my calcium and increased magnesium, the pain has gone away about 95%. (along with soooooo many other benefits from the magnesium!) If I have a day where I eat a lot of calcium, the tight muscles and nerve pain come back. Also, when I was experimenting with my magnesium dosage, I found that if I took too much, I would have major body weakness and the muscles didn't seem to work right, maybe they were too relaxed, but not in a good way? No idea if this is your issue or if this will even be helpful. I do hope it gets better for you soon! Quote Link to comment Share on other sites More sharing options...
houswoea Posted April 14, 2012 Author Report Share Posted April 14, 2012 I hope so too. The pain is just kid of all over aching, like my body is just too tired to move. I wish it would stop. I decide this week if I can keep doing school or not. Quote Link to comment Share on other sites More sharing options...
Elfie Posted April 15, 2012 Report Share Posted April 15, 2012 Sorry that you are dealing with this. I went through all 4 years of college with extreme fatigue and both the aching pain and sharp nerve pain (got so bad at times that the pain itself was making me vomit). For me it was related to my ANS being out of control-- the extra stress triggers fibro-type symptoms. Stress can be regular life pressure or ANS dysfunction. On one hand I wish I hadn't stayed in school because I might have avoided some pain and stress and been taken more seriously by family and doctors and gotten answers and treatment quicker. I also missed out on a lot of opportunities that mean a lot not just to the experience but also to gaining knowledge and helping to get work.That said, Is it your last semester or are you mostly done with this semester? If so, I would really try to battle it out. These things aren't always easy to fix and pushing for a short time beats out having to come back, or not being able to come back for 1 semester. Life tends to only get crazier and it is really hard to go back to school. Quote Link to comment Share on other sites More sharing options...
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