With various medications and vitamins I feel like I'm a pill popper. I'm sure we all feel that way. Depending on the symptoms of the day, we have a med for that. sometimes my sister says, "Are you trying to drug her up or what?!" Between me and my sister we so many meds, I don't know how my mom keeps them all straight. I started taking flourinef and so far it hasn't been helpful. Its made me gain weight and break out like crazy, so irritating! I noticed a few of my jeans are either tighter than usual or don't fit at all. All those girls who say they're fat but really they're not are usually super annoying but I know why they say it. When you go from being a fit gymnast with awesome abs to a couch potato in sweats, it doesn't help your self-esteem. I guess I can't complain too much since I'm still under size 2. I can't work out because 5 push ups and i'll be sleeping the rest of the day. I attempted yoga on the wii fit but it was difficult to moniter how much I could do without making too tired. 15 minutes? too long!
Sometimes I forget I'm sick or I feel like I must have made this all up in my head, but its the 2-3 day crashes that remind me I'm not crazy. Oh well, it sucks but it could be worse. Isn't CFS just a bucket of fun!? *sarcasim x100* :)
Yes, I understand how you feel!! Jamie, Craig, and I take so many pills every day! I just stopped my treatment for Lyme disease and dropped 28 pills a day from my routine - 28! That still leaves plenty that I take for CFS.
ReplyDeleteAs for the Florinef, yup, it definitely causes bloating...that is actually its purpose! I know that sounds crazy, but we have lower than normal blood volume and the whole goal of OI treatments is usually to increase blood volume - i.e. bloat. That sucks or how our jeans fit, but it can really improve almost all of your symptoms when it works! Before you give up on Florinef, make sure you are ingesting LOTS and LOTS of salt and fluids (it only works when you do because its purpose is to help your body hold onto more salt and fluids) and make sure you gradually go up on the dose at least to 0.2 mg per day (2 pills) before you give up on it. It was like a miracle for both of my sons, but we didn't see any effect at all until 0.2 mg and LOTS and LOTS of salt and fluids. It allowed Jamie to go back to school full-time and even play soccer again!
If Florinef doesn't work for you, there are plenty of other OI treatments to try, but many of them are meant to cause bloating. Anyway, it's great that you are only a size 2!!! And when you find an OI treatment that works, you'll be able to exercise again...so that makes it much better!
Oh, and a great way to monitor how much exercise is too much is to wear a heart rate monitor. When your HR goes over your anaerobic threshold, that's when you trigger a crash (if you are interested, let me know and I'll help you with how to calculate your threshold).
Sorry for blathering on for so long, but maybe some of this will help.
Meanwhile, keep poppin' those pills!
Sue