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About runningshoe

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    Advanced Member

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  • Location
    east coast
  • Interests
    getting through the day the best I can

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  1. Seven years...Every day/month/year is different. Good days: exercise, walk or recumbent bike, cook, clean, drive carpools, work part time, yard work, enjoy family. Not so good days: cook or clean or exercise or work, can only do one. Bad days: me on the couch. More good days than bad. Take good care of yourself, go at your own pace, plan ahead, find some kind of exercise you can do on a regular basis, learn to say no. Your story will not be like anyone else's so stay positive!!
  2. I think that just because your vitals look good doesn't mean you are having the best circulation etc., so you can still feel poorly. In fact that extra pumping your heart was doing was probably getting more blood to your head. ??
  3. Thanks folks, Same meds as always, even less of them, do have chronic lyme but was a treated for close to two years....still searching! Thanks!
  4. Haven't been here in a while.... Have had pots for 6 years. Try to do most things right (meds, rest, exercise, salt, lyme treatment) but it seems that even though some symptoms are well controlled my fatigue is worse. Anyone else having this experience? Almost seems like I am heading more into CF territory. Just wondering if anyone else who has had this for years has any insight.... Healing wishes to all. Thanks
  5. How much did you have? Just curious, I put them in smoothies...
  6. The exhaustion comes and goes for me. Sometimes I am on the couch all day. Some days I feel almost normal. HOWEVER I want to add that ever since I read a post this winter on exercising on a recumbent bike I drag myself to the gym and push those pedals. I need lots of recovery time but I am convinced it is helping. The resting sometimes just makes you feel even more lethargic. I am fortunate because I don't faint so I can push myself a bit. The exhaustion that hurts is the worst - everything just feels wrong - for that I take medication that will help me sleep. Hang in there!
  7. III - sorry must not have kept my finger on the caps button. It was also to look for mito issues but by passed the biopsy etc. It was a difficult test but I have a few tips if you need them. It is hard to find anything about it on the web. I did not really understand the test fully until I was there. See if you can start early in the am as the day gets difficult as you go along and you can't drink or eat. Next, dress in layers because I was soooo cold and that made everything more difficult. If you have no problem with being cold then you will do much better than me. If you do then rea
  8. If anyone is going to have this test and has questions please message me. I would be happy to explain it and help you prepare. It is quite a test!
  9. Sounds like you need to check this out with your dr.
  10. Just wondering if your parasympathetic nervous system isn't working? Maybe you have an overflow of all the stress hormones? I use clonazepam for sleep - definitely helps. Good luck!
  11. Not bp related. Is a mystery - I will ask my dr next time I speak to him. Thanks guys!
  12. Many of you kindly responded to a previous post about my week long headache...Well it did go a way and I enjoyed a week headache free. But I have noted a pattern that I would love explained because it makes no sense. When I get a chance to sleep in - sleep late - I wake up with a headache or it starts upon rising. So usually I am up by 6:45 but on days when I get to sleep until 9 or so I have headaches. You would think more sleep would make me feel better. I am sure it is some sort of blood flow issue but it seems counterintuitive. Would love your thoughts!
  13. increase slowly - it takes days to take affect. Should only cause water weight gain - never affected my appetite. It is not like other steriods. Will hopefully make a difference!
  14. Headache has passed for now.... One day last week after I had read about dr. levine's exercise regime I hauled my sorry butt off the couch and did 10 minutes on a the recumbent bike and felt better. So I think sometimes lying down helps but other times I need to get the blood flowing back to my brain....who really knows?! Hope everyone is having a pain free day.
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