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Welcome back, Lois! I was so happy to see your post & hear that you've only got one more round of chemo to go. Hang in there! Angela

Sorry I missed it, Nina. Haven't been online much this week due to health. HAPPY BIRTHDAY! Thanks for everything! Angela

Welcome Belinda! Glad you found us! Yes, it is hard at the beginning but tends to improve as you find helpful meds, learn your triggers, etc. You're right -- you will survive! Wishing you luck on those back-to-back TTTs; ugh, it took me a week or two to recover from my first! Angela

Happy Birthday!!!!

Welcome Jessica! You'll find a number of other young people on here, too. Glad you found us! Angela

JAQUIROUIN, I've met people at the Pilates studio I went to who found it very helpful despite their fibro. One of the instructors has POTS, too! I took Pilates several times a week when I was dancing and can attest to how beneficial it is to the body -- I loved it & planned to go through Romana's NYC studio teacher certification. That said, I am not currently taking it because of my CFS. I simply haven't the energy for a full class yet; I do do some matwork at home, though. As I see it, until I can take a class without being totally exhausted, it will be just as harmful to my overall health as running, too much walking, swimming, etc. Graduated exercise is important to maintain and improve our ability to function, so I'm not advising you to chuck it completely. Would it be beneficial to substitute some very taxing exercises with less taxing ones? Teaser on the box really exacerbated my lightheadedness, so I did Leg Circles and Frog instead; right now, I skip the 100 and do some extra Roll-ups instead. You're not wimping out , you're doing exercises that are just as beneficial but not as exhausting. Any Pilates teacher worth a bean should be more than happy to let you modify as needed! If you find that too wearing, do you maybe need to take a slower-paced class (beginner level as opposed to intermediate)? If taking an actual class with other people is too much, why not try doing matwork at home? It's equally as important as work on the machines (not as many fun gadgets though! ) and will help maintain your strength until you feel ready to return to class. Angela Vanessa, Pilates (pronounced pih-lah-tees) is a form of total-body exercise that focuses especially on developing a strong "powerhouse" (abdominal region). When properly performed, it develops strong, well-stretched, toned, and elongated muscles (as opposed to the bulky muscles the "pumping iron" practice usually produces), as well as fosters excellent posture. Machine work has you working against the tension of springs and your own body weight. Emphasis is on good technique with fewer repetitions as opposed to many repetions in bad form (5 good reps are better in the long run than 50 reps that strain other muscles due to poor technique. Because it has been carefully designed to protect you anatomically, it tends to be very safe and body-friendly. It is also notorious for helping people find and work muscles they never knew existed! Mat work is the base of Pilates -- you working with your own body. Of the machines, the Reformer is the most frequently used. It looks rather like a low, narrow bed with springs attatched to the front (where you would tuck your sheets in) with a foot bar above them. You can lie on your back on the carriage (the mattress section, if we continue with the bed model), put your feet up on the footbar, and press, moving yourself back and forth against the weight of the springs. If you only have one spring in use, it will be much easier to push yourself back than if you had four in use. Most exercises on the Reformer bear much resemblance to those on the mat, but have their own little quirks (use of arm straps, feet straps, gondola poles, etc.). My mom said that watching an advanced Reformer class done well is more entertaining than a movie. We would be doing back rolls off of the machines, full splits at various tempos without holding onto anything, riding "horseback" on a box while pulling our weight back and forth using arm straps...it's tremendous fun! Even more so because you can see such great results quickly (that little black dress never looked better on me! )! People are often under the wrong impression that mat work is somehow easier or inferior to machine work -- machine work usually looks more spectacular (appeals to that hidden showperson in you!), but in reality matwork is where you really gain strength faster. There are no arm straps or do-dads to cheat with -- it's just you and you body and mistakes are obvious! It should be the base of one's Pilates regimen. Dancers and other athletes have flocked to Pilates for years because it can produce such great results without injury (as long as one's technique is good), but has experienced a boom within the last decade in other populations as well. At the studio I was going to we had business people, elderly retirees (some 80+ years!), musicians, actors, writers, homemakers, teens...you name it, we had it! The medical world is starting to take notice of its superb benefits, too (even some insurance companies will cover it now, considering a good preventative medicine measure!); several pre- and post- operative patients are prescribed with Pilates to build strength and flexibility, many pregnant women find it helpful, several of the people at my studio said that it cured their ciatica...the benefits are clear. We had a 7-year-old boy with some type of severe muscular dystrophy who began taking it. From the time he was born, he could not use his arms or legs even with braces -- he had seen doctors from all over the world and stumped them. His parents tried Pilates as a last effort. He would flop himself across the floor like a fish each week for a private class with my teacher, who specially designed a program for him. After 5 faithful years of Pilates at the studio and at home, Civa can now walk for several minutes with special braces on his legs. He has been an inspiration to us all! Unfortunately, along with this sudden recognition of Pilates' good points, a lot of people jumped on the bandwagon and decided to open their own studios. 1-3 day certification "programs" abound, people proclaim themselves competent to teach others Pilates after reading a few books or watching a few videos, etc. Apparently much the same phenomenon occured in the Yoga sphere, too. It's unfortunate, because people have gotten hurt because of it -- I met a woman who hurt her spine because she had one of those "certified in a weekend" teachers. A good prospective teacher should have basic knowledge in human anatomy and physiology, an understanding of the purpose for each exercise (and there are over a hundred), and at least a year doing the exercises on a high intermediate level before trying to start the certification process. And that's just the beginning! It's time consuming, but absolutely necessary if you are willing to take responsibility for instructing other people's bodies. When finding a teacher, one should look carefully at their certification program. I would recommend that just about anyone give Pilates a try. It's best to start under the watchful eyes of a good instructor; they will find what your physical need/deficiencies are and curb bad habits your own "bad habits." I started with a Pilates-based video at home, but grew frustrated at my lack of progress -- it wasn't until I had actual teachers telling me what I needed to fix and how exactly to fix it on my body that I began to make any headway. It can be an moderately expensive undertaking depending on where you live, but I highly recommend looking into it! I can't wait until I'm ready to start back to class! Angela

Hi Vanessa! Sorry your at that frustrating stage! It is a pain, isn't it! It only took me 7 months to get into Mayo. I received initial diagnosis at UPenn in September 2004, researched POTS doctors for the rest of the month, got my referral into Mayo in October 2004, and saw Dr. Low in April 2005. We were surprised at how quickly they were able to take me because it's not uncommon to have to wait 8 months to 1 year. The doctors are just so busy with all these hordes of complicated cases -- that's why we all end up there, right?!. When you do start sending records to the doctors, try your best to make your file stand out from all of the other thousands of files being sent in. The cardiologist that sent my referrals provided what both my dad and I considered to be a very poor request for admittance. It was only about 3 sentences saying that I had difficulty with light-headedness, shortness of breath, my blood pressure dropped upon standing. Not a syllable mentioned about how I had to stop my active dancing career and basically lay miserably on the couch all day, how none of the standard medications had worked, etc.... There was nothing there to intrigue a doctor, make him feel sympathetic to my plight...I wasn't about to trust that letter to get me in to a knowledgeable researcher! My dad (a physician himself) suggested that I supplement the referral with some additional papers to make the doctor fascinated by my case. We sent: 1) a cover letter summarizing what I had been doing before I became sick, explained my most disabling symptoms, listed tests performed and mentioned that they had been relatively inconclusive, mentioned medications that I had tried but received no relief from, explained my inability to function even close to normal, and ended with a tasteful plea for help as my local physicians felt they had reached their limits . This part was to give the doctor a brief, but more accurate and compelling overview of my case and to inspire interest to read more. 2) a personal narrative (mine was 4-pages) chronologically documenting in further detail the progression of my illness (what my life was like before I began having symptoms, how the symptoms presented themselves, how the illness progressed, how my life and ability to function changed so drastically because of the health problems, what my present condition was, etc.). I didn't think a doctor would be interested (with all the papers they have to read in a day why would they want 4 more? ), but my dad insisted that it was every good doctor's dream; they rarely receive a good detailed description of ailments from start to finish in a consultation. He was right! When Mayo sent me my records after my visit in April, included was a photocopy of the personal narrative, complete with arrows, circled words, Dr. Low's notes to himself ...who would have thought?! It has proved a rare and handy resource for a number of my doctors. 3) a summary sheet of all the tests & their results I can't guarantee this will get you into Vandy, but in my experience it certainly hasn't hurt! Best of luck! Angela

Not weird at all, Vanessa! I went the lukewarm bath route -- not nearly as refreshing as a hot shower but that was all that I could manage safely (I did not need to go fainting in the shower on top of everything else! ). I prefer showers, but a bath only took me a day and a half to recover from as opposed to the three days a shower cost. On meds I'm now able to shower again and use a bit more heat! Angela

Hi! Welcome, by the way; I think I missed you when you first joined. Yes, I used to get pale & lightheaded when I was sitting, too. Still do in fact, just not on a regular basis with the meds I'm on. I usually did better reclining back on pillows rather than sitting upright. We checked it out and my BP was always dropping when that happened, so at this point, I don't bother worrying about it. I just lie down and rest until my BP readjusts. You're right to make sure it isn't anything serious. I was lucky on that point -- a doctor & nurse for parents are a big help in terms of having a BP cuff & readers. As for the work question, to some extent (and it varies widely from person to person) we can tough through. Not all of us can work, though. It takes all I have to just manage through daily living -- living and brightening other people's days are how I work. I'm actually able to function at about 30% at this point on my meds, as opposed to the 5-10% that I was earlier on (percentages accurate to the CDC's functionability chart). Are you in the process of trying out medications? Angela

I took Florinef for several months with those bad headaches. It started making a difference within the first week or two, but after a number of months, it seemed to lose its effect. We played with the dose and alll of that, but eventually I decided I'd had enough of the headaches and stopped taking it altogether. Angela

Great news, Carmen! I'm so glad you had a chance to do that -- and still feel pretty good, too! I'm sure your kids were thrilled! Thanks for sharing the news! Angela

Thanks Sophia! I'm taking a peek! Angela

Sorry I don't have any answers for you, Gelann. I hated to see your post looking so lonely though! I'm not very familiar with either of those medications and not really qualified at all to give a competent answer. Have you spoken with her doctor about it yet? Does the timolol tend to take a little while to kick in? If so, maybe it just hasn't had enough time to work. However, I'd hate for her to be taking it for an extended period without any positive effects. I'd certainly speak to a physician about it so you have more information to make a wise judgement call. Angela

Sorry I haven't anything useful to add to what's already been said, Katie . I wish I had a brilliant answer, but I don't. Welcome anyhow! I hope your next appointment goes well & that they're able to get you back to reasonable functioning. Angela

Welcome! Sending you a PM about your questions! Angela

For my full faint, I feel myself turning white, get a sinking feeling, get a buzzing/ocean wave in my ears, everything goes grey, and I have a vague sense of falling. Then I return to conscienceness lying on the floor (no idea how long). I've also had the near fainting where I feel it start happening and drop to the floor voluntarily. Usually when I do that I manage to stay aware of what's going on & eventually get my legs up on the wall to get blood back to my head. Angela

I'm so sorry you got such a terrible response to your plea for help. It wasn't as if you made a joke about falling, either! I can't imagine what it must be like to be so insensitive and hurtful! I'm happy to hear about your wonderful flatmates! The people you live with can help make or break a situation, so I'm glad things have worked out so well for you in that respect. They sound like real treasures! Hope someone nice will post something helpful about a new living situation soon. Do you have friends in the literature department sympathetic to your cause who might be able to start asking around as well? Keep your chin up! Sending you a hug! Angela

I'm marking the day on my calendar, Nina! Go for it! Angela

Adding my welcome, too, Terri! I'm glad you've got a definate diagnosis. It's nice to have a name and explanation to give people when they give you strange looks (or when you start giving yourself strange looks as the case may be! )! Ask all the questions you want -- we're so happy to help! Carmen's right on about the fatigue! But we learn to live with it and even start learning little tricks to handle it (although it can prove a really very stubborn symptom! ). Congratulations on the new grandbaby! Enjoy! Angela

Welcome! I'm on the other end of the spectrum -- always cold, rarely sweat (the sweat test had me sweating though! ). Every once in a while I'll wake up at night sweating as if there's no tomorrow, but that's highly unusual. The fact that I do not usually sweat seems a little peculiar to me because before I got sick I was always the first to start sweating in a ballet class and ended up with a drenched leotard! Talk about a turn-around! Guess the old ANS overworked earlier in its life and is all tuckered out now! Angela

Welcome! Hope you were able to get that information that you needed from the doctor! POTS-induced brain fog is not uncommon for us; I took to writing EVERYTHING down as soon as I heard it because my memory was so unpredictable! Hope this treatment plan has you feeling better soon! Angela

Sorry things just keep getting worse for you, Persephone! I'm sending you a hug! I remember those dreadful headaches from Florinef! They were absolutely terrible! Hope things look up soon. Happy writing! Angela

Glad to hear that you're emerging, Tearose! I'm so glad you're making some progress! Isn't it great to feel alive?! Angela

Sending a smile & hug your way, Melissa! Sorry things are so rough for you on campus! Angela (with an extra smiley for good luck )

Welcome to you both, Becky & Marian! Glad you've joined our ranks! Hope you find the information you're looking for. Angela (not in the UK, sorry!)