Jump to content

Relax86

Members
  • Posts

    387
  • Joined

  • Last visited

Everything posted by Relax86

  1. Great news. Can't wait to hear the rest of your story. I'm also low BP, low ferritin, low Vit D.
  2. congrats...it all starts with small successes, absolute faith and trust. the inner peace shut down the anxiety and allows us to grow and heal. Hooray for you!!!!
  3. Meditate... use Deepak Chopra as a start.. find your "here" .... it might look different than it did before POTs; mine absolutely does. Your current emotional "here" seems like a bad place. Maybe just journal or write. Write to Twitter, write and delete....you're expressive. Let it out. Go to a healer. You might find moments of improvement that are enough to carry you on to the next. I bought Perfect Health by Deepak and Oprah. 21 meditations helping to transform the way one thinks and feels about health. It helped. Pray. I'll say a prayer for you.
  4. I also had significant problems breathing...although a neg lung function test. I was given hydrocortisone for adrenal fatigue. And 2.5mg would take the breathing problem away immediately for me. It didn't cure all my symptoms but it would temporarily eliminate the breathing issue on my bad days. I was cautious about using HC as it's very controversial for the diagnosis of adrenal fatigue but it worked for me. Good luck
  5. I had same thing....false positive for scleraderma...I don't have any symptoms of scleraderma. And subsequent ANA's came back negative. I guess the take away is to not hold on too tight to 1 positive test. Which is hard for me b/c I was searching for a reason; not to be misinterpreted as I want to be sick. Some Doc's need to get it straight...;-)
  6. I think of it this way: in a partial rotator cuff tear one might not be able to lift a gallon of milk out of the fridge. it's not that the muscles wouldn't be strong enough or that they don't have the range of motion but the cuff is broken/torn so the activity won't be tolerated. So it is with my ANS - not that I can't mentally tolerate stress, but the system in place to manage physiological responses are broken. I don't worry about it anymore or question myself. It's like playing the piano with a broken and splinted thumb...song's not the same. Hang in everyone!!
  7. I feel much worse when I'm in the basement of my house. I always think I can smell the gas from the dryer. My daughter recently told me that there's a ghost down there...lol.
  8. I should add I'm not on Florinef. I took it for 1 day and didn't like it immediately. So I too have bladder sx but not related to this medication
  9. I made the decision to push with exercise. I was cardiac cleared as in my POTS was not from a cardiac reason and felt safe pushing thru. I started with seated ex's, low reps and no weights. This was a time when I was bed bound. I gradually added weights and progressed to more sets. I would usually have a bad day after exercise followed by 3 better days. The pay off seemed worth it to me. It took over a year. I was calling myself 90-95% better when I decided to add cardio to the program. Seeing a lot of people on the forum who run I figured that giving that a try could only help. I did 20-25 mins 4 out of 6 days in the week and I had a pretty bad crash. I can't really say it was the cardio but it was the only change I made. I also have never tolerated cardio - even as a kid. I always had a high HR. I am pretty much recovered from that flare (lasted May 23-June 8). If you can believe it ....I'm actually going to give the cardio another try. Just 10 minutes, lower my speed, and 2 times a week. POTs reminded me that I have limits but it's not going to stop me from trying.
  10. This part can sometimes be my biggest struggle. I recently started meditating more deeply and somewhat giving up the knowing and trying to embrace my body's attempt at regulation. Thanking myself for being strong thru tremendous change; as we all are on such a roller coaster of symptoms and dysfunction. The meditation and change in thinking has helped. I only ask it to help for the minute. I'm not sure what the next hour will bring but I can't expend any more energy worrying. I also improve and change. Can't say that I'm progressing, just riding the ride. Good luck
  11. I've also had years between flares. 2004, 2009, 2012 and a little step back about a month ago but inbetween those flares I got 100% well; except the 2012 flare I'm still recovering. But working and functional...not always comfortable but I'm hangin in. It can happen. Hope. Believe. Good luck ~ Tracy
  12. Wow!! Thank you. I just downloaded it. There might be a time where I really need to hear something from that book. Curious as to how you hear about free downloads??? Also, I just started reading "Twenty Spiritual Lessons for Creating the Life You Want" by Deepak Chopra. It's not a free book but it's helped me tremendously as I was seemingly coming apart with too many questions, research overload, self assessment, anger and frustration. Not that the meditation made me well but my symptoms have been reduced by at least 50% by finding some peace. I'm not suggesting that everyone needs the same but it just worked during this flare for me. ~ Tracy
  13. Welcome and good luck. Happy you found the right testing/Dr etc... Congrats on getting a diagnosis, as that seems to be so hard for some people. Sounds like your very driven in your education and career choice and I'm sure it will come together in spite of symptoms. I imagine you would make a fantastic teacher...
  14. I guess I'm questioning why I had to push to add the Treadmill when I was 95% better. When I was in elementary school gym class I had poor cardio function compared to the other kids. It followed me into adulthood so I traded cardio for weight training. After the 18months I've been thru it seems ridiculous to have such a severe set back from a few sessions on a treadmill. Thanks for all your thoughts/support I had new blood work Thursday (in the heart of my symptoms) from the autoimmune Doc....all normal except Complement C3 was low (previously was even lower Jan 2013) - so something is going on in my system for my immunity to be in a little fight. All my anemia numbers squeaked into low end of normal even though I take 2 iron pills/day. Something is destroying my much needed RBC's and preventing them from carrying oxygen to my important parts!! Just putting together the puzzle; and again, thanks for all of your thoughts.
  15. I really could stop checking my BP because it doesn't seem to correlate to how I'm feeling. Usually my hands will fill up and I'll feel ear pain, lightheadedness - these should be my clues to using midrodine. So thanks - E - for the reminder; and even my cardiologist said as much. As far as the warmer weather, I haven't spent any time outside. The day the flare occurred I was having a great day, week and month. Totally unexpected - calling myself 95% better. I'm just a little floored. There was no food, noise, light, smells, stress, lifting.....yada, yada. The only change I made was adding a little cardio (15 to 25 mins on the Treadmill)...and I had only used my Treadmill about 5 or 6 times and tolerated it great!! I guess I'm confused as to why I've had so many fainting episodes, pre-syncope and such strong lightheadedness in absence of bad vitals. My HR has been better than ever since Thursday night. And I just don't know how to do this dysautonomia...I thought I had figured out the other and had come to terms with it. And thank you for the comments
  16. I wake up with eyelid swelling in the morning if I eat something that my body is allergic to. What that food is seems to be changing. But it seems like an allergic reaction to me.
  17. I seemed to have a resurge of all my symptoms. I was about 90-95% better from the flare of 2012, when driving home about 2 weeks ago I had a severe dysautonimic episode or storm. I treated it like it might be a single episode but soon thereafter most of my symptoms came back - low BP, elevated HR, digestion intolerance, lightheadedness, unable to exert myself. I used hydrocortisone to help control symptoms but I only use 2.5mg at 8am and 1pm; some midodrine, salt, water. Strangely my symptoms made a weird turn on Thursday night which was my 2 week anniversary: I have a normal HR, which is low for me...around 70, my BP is normal to lower, I am extremely pre-syncope (meaning I totally will faint if I don't sit) weird responses to food, weird food cravings, nausea if I don't seem to feed this monster, calf and arch cramping and sometimes my thumbs, blood pooling in my hands (I don't pool in my feet because I'm an right amputee, and left side is rock solid muscle). So nausea, cramping, slight headache, orthostatic intolerance is my new dysautonomia. Has anyone ever reflared in a totally different way?? And question is ~ I don't know how to treat this new monster. I knew how to deal with the old. I so far have added advil (helpful) sipping a little gatorade (helpful). I need a replacement b/c I don't like the sugar or citrus. I'm not sure about the midodrine - it keeps me from fainting, helps the pooling a lot, but if my pressure is 102/69ish...I'm not sure if that's low enough to take it. Called my cardio and he said dose as I would like and those numbers are low enough for a fainter. Thoughs???
  18. Hilarious cartoon. Perfect timing. I found it because I was searching symptoms since I've re-flared. This flare is not like the others but maybe I was meant to just see the cartoon and stop reading for a little while.
  19. I'm one who credits Hydrocortisone with pulling me thru my flare of Jan 2012. I originally thought that flare got so bad due to a 4 day hospital stay with tremendous amounts of bloodwork lowering my blood volume. It took me forever to feel better. Unfortunately my symptoms have re-flared much sooner than I expected and I don't have a reason to suspect low blood volume. My autoimmune issue was never diagnosed, it was left as positive but non-specific. Now that I'm re-flared (although my symptoms aren't exactly the same) I got some updated bloodwork from the autoimmune doc. I pray she ordered the right tests. But I will say that once again - cortisone has been keeping me functional. Dose I've been using is 2.5 mg at 8am and 2.5 at 1pm. But this flare is very different from the last - sort of like a second child....haha....comes from same genes but has an entirely different personality.
  20. I'm the same... during the worst of this POTs flare in 2012 I went months without a fever blister; of which I used to be triggered by stress or lack of sleep. And definitely in a flare I was both. I haven't had a cold/virus since this entire flare started and I had low C3 complement test which I interpreted as having a lowered immune system. I would think I might be more susceptible. The only thing I can think of is my nutritional habits might be saving me....I'm a pretty clean eater with the exception of a little chocolate and my occasional weekend beers!!
  21. Not sure exactly where you live but I'm in NJ and started having adrenaline flares May 23rd and they've been pretty steady most days since then. No reason for the re-flare; my symptoms were 90-95% controlled and it just started happening again. I never really know what brings it on and I'm unsure on how to proceed. I do know that most of my tests were normal or just borderline for low blood volume. My only positive tests were anemia and low ferritin, low vit D, a positive ANA that was later negative and a low complement C3....all of which give me not too many answers. I have a very hypersensitive system to everything and sometimes nothing. I'm riding out the storm. Good luck Achilles. Just wanted you to know it's been a rough week on my end too ... it will get better, I'm sure
  22. I can't tolerate the dog food aisle or the detergent aisle in the grocery store and I never could. In the heart of my flare i couldn't even tolerate my own shampoo or deodorant. If my kids tried to open their container of Abercrombie and Fitch perfume I could smell it across the house and it would spin me out of control. Smells are huge for me. I used to love to burn candles but I totally gave that up along with any body or bath products. When I'm between flares I use a sulfate free body wash and lotion. I found that eliminating everything totally seemed to increase my sensitivity so as I got a little better I re-added a few little things so my nose would stay conditioned (??). Who knows!!!! This condition always keeps me guessing.
  23. I posted what my general tolerance is...sometimes I can do more and sometimes I do less. In the beginning of a flare I usually take off from exercise completely (usually a few days). But I know that staying somewhat fit and moving is key to maintenance and quicker recoveries b/t flares for me.
×
×
  • Create New...