hholmes13 Posted August 6, 2012 Report Share Posted August 6, 2012 Well I've been in the midst of a bad flare since February and have been off work since May. Tomorrow I am trying to go back for 4 hrs every other day. My occupational med doc wants to start slowly and see if I can handle it. I'm nervous but hoping it goes well!Over the last month, I've been really pushing exercise and I started Mestinon. I wasn't seeing a whole lot of improvement until this past week. Over the past 4 weeks, I've made a point of getting at least 30 minutes of exercise most days of the week. I started in the pool because I couldn't handle anything else. After a few weeks of that, the benefit of relief from dizziness quit working so I just decided it was time to start walking. I figured it's more like real life and if exercise is ever going to help me, then it was time to just commit to being consistent regardless of how I was feeling. (Within reason of course!) Well, I have been walking 2.5-3.5 miles every day or hiking. The last 2 days, I jogged almost the entire 2.5 miles!! I couldn't believe it. Normally when I would exercise at all, I would be so dizzy by the time I was finished and would be miserable for the rest of the day. During my jogs, no dizziness at all! No palpitations/chest pain or nausea either! When I realized it yesterday, I started to tear up because I was so happy. I'm not assuming I'm cured or won't have issues still...but I am so enjoying these feel good days. I've actually been outside and active and it feels fantastic. I actually have felt really good the past few days. I don't know how long it will last but I'm not going to complain!Not sure if it's the Mestinon (60mg 2x/day), the exercise, or a combination of both...but I have been feeling a lot stronger. The only issue I still get is crazy tachy in the mornings since I had to go off my Nadolol, but I just hydrate like crazy and take my meds and it improves now. Anyway, I haven't made many positive posts for awhile, so I thought I would share some happy news! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 6, 2012 Report Share Posted August 6, 2012 I am so happy for you!!! That's great news! Take it easy going back to work! Try not to over do!! It's really good to hear when someone has a good spell. Thanks for sharing! Quote Link to comment Share on other sites More sharing options...
puppylove Posted August 6, 2012 Report Share Posted August 6, 2012 That is great! Jogging 2.5 miles is just amazing- I'm so happy for you! Quote Link to comment Share on other sites More sharing options...
issie Posted August 6, 2012 Report Share Posted August 6, 2012 You GO GIRL!!!!Issie Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 6, 2012 Report Share Posted August 6, 2012 I'm happy for you! Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 6, 2012 Report Share Posted August 6, 2012 And I meant to say, good luck as well!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 6, 2012 Report Share Posted August 6, 2012 Awesome!! Good luck with your work! Quote Link to comment Share on other sites More sharing options...
songcanary Posted August 6, 2012 Report Share Posted August 6, 2012 I am so very happy for you! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 6, 2012 Report Share Posted August 6, 2012 Congrats!!!! Really good news. I needed to hear it today. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 6, 2012 Report Share Posted August 6, 2012 That is so awesome! I wish you all the luck and never to get another flare ever! Quote Link to comment Share on other sites More sharing options...
sarahm Posted August 7, 2012 Report Share Posted August 7, 2012 Congrats on the good news. What is Mestinon, I haven't heard of it before? Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 7, 2012 Report Share Posted August 7, 2012 Hooray! That is amazing news. I am another walker/hiker, but I can't jog (silly joints). Keep up the good work!Sarahm: Mestinon (pyridostigmine is the generic name) is a medication that increases your levels of acetylcholine by blocking the enzyme that degrades (destroys) it. The end result is that it supports/increases the function of the parasympathetic nervous system, which acetylcholine is the main neurotransmitter (chemical messenger) for. Unlike some other meds it doesn't cross the blood-brain barrier, so it only affects the rest of the body, not the brain. In many folks it's used to improve HR and BP (decrease both), since it seems to have more of an effect when standing and thus avoids hypertension while lying down (which can happen with midodrine). Quote Link to comment Share on other sites More sharing options...
Guest headhunter030 Posted August 7, 2012 Report Share Posted August 7, 2012 Way to fight thru. Keep it up. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted August 7, 2012 Author Report Share Posted August 7, 2012 Thanks everyone! Peregrine: I have H-EDS so I'm being careful with the jogging...my joints get goofy on me too (my left hip especially likes to sublux) but I've been a runner for a long time, so I'm going to see if my body will tolerate it at least a few times a week. Hiking is a really fun alternative though! Also, thanks for the awesome description of Mestinon...people ask me what it does and all I knew was it was a cholinesterase inhibitor that allowed acetylcholine to build up in the blood. Your description actually makes sense why it helps! My first day back was good. I was sleepy afterward but still managed to get a walk in and some yoga last night. I'm glad I'm starting every other day this week though. I think a rest day will do me some good so I don't overdo it. Keeping my fingers crossed this continues. Thanks for all the well wishes! You all are great! Quote Link to comment Share on other sites More sharing options...
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