lalalisa

I just wanted to say Hello! and Congratulations!!! Lisa

Zithromax makes me really anxious and makes my heart race more than usual. I wasn't able to sleep while on it so I quit taking it. Some people are really helped by it - maybe you'll be one of them! I hope so! Lisa

Ms. Virginia here I grew up in the Shenandoah Valley of VA (My husband and I now live in Louisville, Kentucky)

Acidophilus is the only way I can make it through a full dose of antibiotics. Try and take it with a meal.... Also take it about 4 hours before or after (or both) your antibiotic so it can fully take affect. I always take the maximum dosage during the antibiotic and also for a few days after I'm done with the med. Good Luck! Lisa

Is this a good Creatine? I feel really "in the dark" as I search for Creatine. http://www.nutrabio.com/Products/atp.htm Any suggestions on brands, etc? Thanks again! Lisa

Yes! I have "lines on my face" for a long time after my nap each day. I hadn't really thought about this as a POTS symptom but maybe it is.

Hi! I'm so sorry that you are doing so poorly! And that your Dr's don't seem to be very understanding / concerned. I tend to think the weight loss is for different reasons for each one of us. For me I lost a lot of muscle weight because I had to quit exercising. Then once I quit exercising my appetite diminished like crazy because I just wasn't burning any calories. (I went from running 3-5 miles/day to MAYBE walking a block or 2/day) I also have weeks of nausea where food just doesn't sound good and I just don't eat much at all. Have you tried to analyze your eating patterns and changes to your lifestyle over the past 2 years? Are you eating different foods, portions, etc? I know this doesn't seem profound but it seems to be the reason I've lost weight. I started out at 120 and now I'm around 105-110 depending on how nauseas I am. Hope this helps, Lisa

OK, You guys are GREAT! Thanks for all of your insight! Kite and Steph - are you both trainers? You sure are a wealth of info! Kite, what did you mean by...."In my case I don't think it would've worked if I wasn't weight lifting, I think i probably would've peed it all out, but that's just my opinion." Jesse, I'm excited that you are going to try Creatine again. Please let me know what you think and if it helps you to feel any better. I really appreciate all of the information, Lisa

Should I start out slow? How much do you all take?

Some of my favorites: Elf Home Alone -- these are both Christmas movies, I love Christmas! Sound of Music How to Lose a Guy in 10 days Big Fat Greek Wedding oh yeah, Napoleon Dynamite --- it's one of a kind but HALARIOUS! Have any of you seen this? Lisa p.s. Thanks for giving me a list of Movie's that I need to see! I seem to be WAY behind!

Is the weight you gain from the Creatine strictly "water-weight"?

Welcome to the forum! I was working full time until I got POTS. I don't work now - I do best if I'm only awake for about 4 hours at a time and then sleep for a while. Each of us seems to eventually find out a formula for feeling our best. Thankfully my husband is supporting us and I can stay home and rest. (I can't imagine the stress I'd be under if I had to try and support myself right now.) For me stress seems to make my symptoms WAY worse - it's good to find a low stress job if you have to work, that's for sure! Hang in here! Lisa

Oh yes, the classic "you look great, you must be feeling better!" On the other side of the spectrum - It really bothers me when people don't ever ask or even acknowledge my illness. I have a brother and sister-in-law who have never asked a single question or even acknowledged that I'm ill. Anyways, I usually tell people that I had mono which damaged my nervous system. (I rarely use the term POTS) Lisa

Thanks for all of the input! What if I am not training? I try to walk each day but I only walk a few blocks. Do I need to be "working out" to take this? I am thinking of beginning light weight lifting and increasing my walking really slowly. Any insight?

John, Hello! Welcome! I also have been diagnosed with POTS and CFS. It is so hard to say what symptoms are POTS and which ones are CFS.... I do know that it is common for CFS patients to have trouble with orthostatic intolerance, etc. Good luck with your research! Lisa

Hello everyone! A friend of mine recently told me about an article he had read in a fitness magazine. The article was about Chronic Fatigue patients who were taking Creatine and gaining energy, strength and stamina. The interesting part about the article was that it mentioned how Creatine has the effect of fluid retention in the muscle. It may even raise blood pressure (for those of us with low bp). I talked to my Dr. about this and he thought it was a good idea to try taking Creatine. Please let me know if anyone else has tried this. I'll keep you posted as to if it helps with my bp, etc. I know this sounds weird, but I'm getting desperate here!!!! Lisa "Creatines effects on blood pressure are an open question. Since it has the effect of fluid retention in muscle, it might increase blood pressure in the same way high sodium levels do, but this has not been established or refuted. Also, it is expensive." (This isn't from the article - but from a website I just found:) http://www.bla.net/opul/crfaq.htm

Roselover, Hello! I tried Provigil about 1 year ago because fatigue is my worst symptom. I sleep 12 hours/night with a 2-3 hour nap during the day. If I don't I feel horrible. Anyways, I felt that Provigil made me feel wired. I felt like I had WAY too much caffeine. I didn't like how it made me feel although I didn't have any side effects such as headache. I'd say it's worth a try if youre extremely fatigued - you never know what will work for you! Hope you find something that helps! Lisa

Hi, Thanks for the post, what a great question. It's interesting because we've all had to make adjustments to our lives. Sometimes I find myself wondering if they will be temporary or not. How neat that you are looking into becoming a midwife. That is definitely a way to serve others! I earned a vocal performance (singing) major in College. Since POTS I am too short of breath to sing (and it makes me dizzy) -- so this has definitely forced a change in my life! I was working full time putting my husband through seminary and now I am unable to work due to my need for so much sleep in order to stay conscious! Now that I'm at home I dream of being a mom and this is on hold too - I am just really nervous about putting my body through this right now. I am so fatigued that I often wonder if I'd be able to take care of our children. POTS has changed my goals -- I didn't seem to have a say in it! I have lots of dreams such as motherhood and possibly some sort of job associated with the arts. I guess I'll just have to wait and see. Thanks again for the post, Lisa

Radha, Thanks for your honesty - this illness is so amazingly difficult. I tend to struggle with a battle between hope that I'll improve and then thinking that it's going to last my lifetime. It's hard not to plan on being sick when it lasts so long. I pray that you improve each day, Lisa

Katherine, Thanks for the support! It's such a blessing to have a place to go where others understand what this syndrome feels like. Have a great day! Lisa

Katherine, It was good to read your post today as I'm on the other side of the pendelum and I'm not sure what to expect. I am currently trying to go off of my SSRI (Paxil) which has worked well for me for 2 years. I desire to be on the least amount of meds possible so I'm slowly going off of it to see how I feel. (I went on it to help with my anxiety and I had little-to-no anxiety for 2 years) I am feeling the affects of going off of the med today -- I'm really dizzy. Did you experience this at all? I am really hoping that I am not as anxious as I was 2 years ago. Thanks for your post and for letting us know that youre going back on it - please don't be discouraged about this.... Hang in here, Lisa

Wow, this all sounds so familiar! I also think that for me my mind tries to process all of the items, sales and things that I'm looking at and I just get this overload feeling..... (or Maybe I'm just so excited to be out of the house or something.) You guys are great at making me feel "normal" - (whatever that is)! Lisa

Hello! I definitely understand your struggle. I'm 25 and was planning on going to graduate school when I got POTS. I had many dreams that I've had to give up or at least put on hold (it's hard to decide what to do with them sometimes). I'm also looking for a way to work from home. I am hoping to begin teaching piano lessons in my home this fall but other than that I don't know what to do either. What type of classes are you going to take on the internet? What is your new degree going to be in? I hope you get some answers, Have a good day, Lisa

Thanks for all of your feedback! It's so amazing to me how different we all are. I promise to eat some sugar for all of you who wish you could have it but can't! Have a great day, Lisa

Aprilmarie, Thanks for posting the picture of your new little bundle of joy! She's so cute! Praying for you, Lisa