Eillyre

I get a flu shot every year & have never had a problem with it. It's far riskier for me to not get the shot and wind up with the flu! It's really a personal choice -- you live with the consequences of your decision either way. Angela

I have rarely had trouble with my lenses. Dryness has never been a big problem for me although I do keep the drops on hand just in case. Sorry you're having trouble! Angela

Gotcha. Thanks!

Just a quick question for all of you who have been following the Gulf War posts closely (I confess, I haven't. Sorry, steph! What I have read has been interesting!). I don't want to sound dense or skeptical or anything other than curious, but what is your hypothesis as to the connection between POTS and all of the "war-related" conditions. Are you suggesting that: 1) the soldiers had POTS but it was called something else and has continued to change names as doctors continued to puzzle over the strange condition 2) the present POTS generations received a mutant gene from forefathers who experienced problems during the war 3) it's just interesting that these conditions are interesting in that they have many similarities, including the fact that they puzzle researchers OR 4) something that I haven't thought of. I'm just trying to understand what part of this research is so compelling to all of you and relevent to POTS. Maybe the question has already been answered in the archival GWS posts, but I thought it might be more clear to just ask here after the "unveiling" of a new GWS document. Thanks in advance for the clarification! Angela

Kel, I'm one of the POTS/CFS combos that briarrose mentioned in her post. Here's a link to the CDC's definition of CFS. http://www.cdc.gov/cfs/cfsdefinition.htm It was nearly impossible to distiguish how much each condition contributed to the terrible fatigue I had until I found a medication that worked for the POTS. I did have all but one of the other CFS symptoms listed on the CDC site (substantial impairment in short-term memory and concentration; sore throat; tender lymph nodes; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours). At this point I have little to no problem with POTS symptoms as long as I take my meds and regular precautions, but I still have the fatigue and a number of other CFS symptoms. It's the CFS that holds me back now, although it is gradually improving. Feel free to PM me with any questions you have! I love to help. Rebecca, I had very bad insomnia earlier in my illness and my symptoms were worse in the morning and at night; 11am-3pm was my best window, although even that was not particularly stellar. I took Melatonin to sleep at night (which helped tremendously), but eventually decreased my original dose because I felt like it hindered me in the morning trying to get up. I was still able to sleep at night on the lower dose, but I didn't have as hard a time getting up the next morning. You might want to ask your doctor about the ins and outs of decreasing your dose. On the other hand, it may just be that the severe fatigue is your culprit. Angela Just a brief note on fatigue that I forgot to include on my last post. I have noticed a difference between the fatigue I experienced in relation to the POTS symptoms and what I call my "CFS fatigue." It's not easy to explain and I imagine that it's different from person to person, but you might try analyzing your fatigue to see if there are differences (like many of us do with headaches -- migraine vs. sinus vs. did not drink enough water, etc.). Hope this doesn't sounds too crazy. As a former dancer, I'm used to paying attention to minute changes in how my body feels, but it's difficult to put what I feel into writing sometimes. Angela

I'm so happy for you, Lauren! I was so excited when Mestinon began working for me too! Angela

Dear Dayna, Sorry to hear about your doctor trouble! I saw Dr. Low at Mayo (I asked specifically for him!). He can only see 20% of the patients who need to see him, but I thought it was worth a try anyway. He did have me take another TTT, but the rest of the testing was new to me. He was wonderful, POTS and CFS diagnoses were confirmed, and the treatment plan Dr. Low put together has worked brilliantly. Going to Mayo was the turning point in my illness. I don't recall how much it cost exactly because insurance covered about 1/3 of the bill -- I can check into it. I did have to have a doctor's referral to apply for an appointment. The one that my cardio wrote for me was really terrible -- nothing about it would have inspired a doctor at Mayo, let alone Dr. Low, to feel a need or desire to see me (very dry, little medical information, I'm not even sure that she mentioned the posibility of my having POTS). My dad (a doctor himself) took one look at it and said, "There's no way that they're going to let you in with that." So I enclosed my own pleading letter to Dr. Low with the mediocre referral, explaining just how disabling these POTS-like symptoms were. Not theatrical, mind you, but very detailed and honest about my desperation. I don't know how anyone reading the before symptoms/ with symptoms contrast wouldn't be intrigued! At any rate, I don't know how much was my letter and how much was all the prayers I was sending to God, but Dr. Low did see me. If you end up with a pathetic doctor's referral, you might want to try the same tack as I did -- it certainly can't hurt! Best of luck! Angela

Dear DSM3KIDZ, My POTS very much came "out of the blue" and was very disabling, but it now has little impact on my quality of life as long as I use medication and precautions to prevent symptom flares (e.g. staying out of heat in summer, drinking plenty of liquids, high sodium intake). I was told that full recovery tends to occur in cases that began with viral illnesses, but that most POTS patients (including those not on the forum ) will experience some measure of improvement regardless of how their illness began. Apparently it's a very small percentage that see no improvement at all. I didn't bother to worry about whether I would recover fully or not since mine appeared seemingly spontaneously; I already had enough drains on my miniscule energy supply without adding that! I've just done what I could to encourage improvement and been thankful for each step forward. Try not to stress about how it started. I consider myself to be a "success story" even though I'm not completely "cured"! Hoping that you'll soon see improvements on your end, Angela

I've seen enormous improvement on medication and using my "living strategies"! I spent months lying on the couch, totally worn out, plagued by brain fog, and feeling faint whenever I sat up. Now I'm out walking at least 1/2 mile each day, taking three on-line courses, and learning Spanish! I can do more housework, drive to the store for a short shopping trip, and almost never get lightheaded! I even went on a 3-day vacation in PA! It's been a long, slow process, but I'm so excited by the improvement I'm gradually seeing! Keep your chin up! Angela

We're here for you, Rebecca! Welcome to the family! We can all sympathize with your situation. Ask as many questions as you want! We have a great archive of past posts, too, if you want more bedtime reading. Angela

I'm SO happy for you, Evie! Keep up the good work! I want to pack myself into your suitcase! I've started some online courses, but I'm not yet ready for full-time university study or travel. I plan to make it out to see the world at some point, though! Have you decided where you want to travel for study or what you'd study there? Do give us the whole scoop when you get the chance! Lots of love, Angela

Thanks, Nadine & Futurehope! Future -- To colour your writing, first highlight the desired text with you mouse (to highlight, hold the left mouse button down at the start of your text, then drag the cursor down to the end of the text you want highlighted, still holding the left mouse button down. Release the left button once you've reached the desired end of your text.) Next, look to the right of the "Clickable Smilies" box, which is located at the left of this sentence, for a white drop-down box that says "Font." Under the drop-down box is a toolbar with buttons. The 5th button to the right has an uppercase letter "A" with a black underline. If you click on the underlined "A," it will offer you a large palette of colours. Click on the colour you want your text to appear in. You will not see an immediate change in colour. Don't be concerned, however. The computer inserted a code between brackets at the very start and very end of your highlighted text indicating which colour you chose. If you want to preview your post to see the lovely colour scheme you have selected, just click on the "Preview Post" button located below the "Post Icons" box which is located below the white box you type in (the Post Icons box has a bunch of little smileys, an orange exclamation mark button, and a blue question mark button). In the preview mode, you'll see exactly what will appear on the forum when you finally submit your post. If you want to change the colour of a paragraph or sentence that you have already assigned a colour (e.g. if you want to make a pink paragraph purple instead), just remove the bracketed code before and after your paragraph. Then highlight and start the process over again. I tried to show sample codes, but the computer won't let me -- sorry! I hope this helps! Have fun! Angela

Welcome to the family, Sky! Glad you've found us! Angela

Hi Sue. Thanks for sharing your post with us. I can relate to a number of things that you mentioned. I?m so sorry about your brother ? mine are so special to me, I know I would miss them terribly if they were gone. I have always been a shy person, but became even more so when we returned from Africa and I had a terrible time adjusting to the cruel kids in our neighbourhood. Just as I was really opening up more socially, I began having trouble with POTS & CFS symptoms which landed me a permanent spot on my parents? couch for next year. The friends that I did have were in college or just beginning their careers (outside of NJ, of course!). I was too sick to attend church (which was one of my largest social connections) or leave the house. The other people living with me (my parents and one of my brothers) all worked during the day. It was me and our dog and God. I did have some visitors from church once a week or two, but frankly I was so worn out by having people come that I tended to prefer being by myself. I spoke infrequently on the phone with my two best friends because I had so many cognitive problems that even a 10-minute call took me a number of days to recover from. I admit also that I dreaded visits from my brother & his wife & two girls (only twice a year, but it took me two months to recover from each visit). My nieces are dear girls but as super-active 2- and 4-year olds, they were extremely wearing. I felt guilty about not wanting them here, but made a set of ?self guidelines? that have allowed me to enjoy their visits and keep me in the status of a very fun aunt. I have coped, and my health has been slowly improving over the last year since my trip to Mayo. My faith is what really sustained me and continues to so, but there are a number of things that I did during that ?hermit? stage to help get me through: 1) I avoided things that would make me feel discouraged. I had my mom remove anything dance-related from my room (it made me think of what I couldn?t do anymore). I didn?t watch dance performances or sports on TV for the same reason. I stopped listening to audio lectures because even after listening to a short segment 5 times I couldn?t remember what the lecturer had said (very disheartening! ). 2) I found something that I could do and set a goal doing it. I was able to look at flower catalogues (the pictures were beautiful and the amount of reading involved was minimal) and so I made designing a flower bed for our front yard a goal. It was a very small garden space, so the size of it was not overwhelming ? it was a goal that I could certainly complete. 3) I focused on my limitations as a puzzle to solve, not as limitations. I spent several years as a ballet dancer learning how to train my body to do what I wanted it to ? it was a constant, daily-changing puzzle of how to use different muscles to accomplish a goal. Learning to live with my symptoms was a new challenge yet similar in some ways ? it was (and is!) a constant, daily-changing puzzle of how to accomplish certain tasks without fainting or over-tiring myself. It was actually exciting concocting ways to get clothes out of the washer and dryer without keeling over. I gradually learned what some of my consistent triggers were and devised ways around them. Make it a game and revel in your cleverness! 4) I did what I could. I could fold clothes while on the couch. I had to take rest breaks of course, but eventually I would finish. As no one else was particularly fond of folding clothes, it was a simple but much-appreciated accomplishment. I did not watch TV often on purpose, but when I did, I chose shows that would teach me something (Discovery, History Channel, Animal Planet, Home & Garden TV, etc.) or give me something to think about (Jane Austen films are a favourite!). I would try to find at least one new idea or fact that I could share with my parents at dinner that evening ? remembering what it was became the hard part! 5) I listened to lots of music! I listened to music that would take my mind off to the quiet mountain villages of Japan, the vast dusty savannas of Africa, the boisterous crowds of Parisian caf?s, the whirling excitement of a Mexican fiesta ? all the places I wanted to visit in person but couldn?t at the time. I listen to soothing music when I felt too tired to even breathe. If I was feeling up to it, I would watch old Fred Astaire movies and bounce around a little (lying down) to the jolly music. 6) I communicated with friends primarily through e-mail. It was less taxing on me as I could save my work and return to it at my own time, and it simply felt better for me because I didn?t have to toil over a conversation hindered by major brain fog . I explained my dilemmas to my friends so that they would understand why I could not keep up with their streams of e-mails and at times I made sure I just sent a brief e-mail forwarded to each of them explaining that I was in ?recovery mode? and would not be writing for another two weeks or so. My dearest friends took to this just fine and have done their best to keep in touch even when I couldn?t. Some who were not so close have sort of drifted away, but I don?t try to blame myself as I didn?t have the energy to keep up daily communication. I?ve done what I could and the friendship I enjoy with my closest amis is more than adequate compensation. They visit or talk on the telephone every once in a while, but mostly we e-mail with a special surprise snail-mail here and there. One does not need an extensive social network to get through chronic illness well-adjusted, no matter what the doctor says. I have found my small but very supportive one perfectly adequate for my emotional needs while allowing me the space and time to recover. Perhaps there is a retired neighbour who?d like to talk with you, or people in the community who would look forward to teaching you something or learning a skill from you (the department of social services for your township might be worth a try). Maybe a nearby church has people who enjoy visiting/driving shut-ins ? a dear friends of mine met a delightful 88-year-old widow that way and now thinks of her as his own grandmother. 7) I have exercised each day and learned to pace myself. My cardiologist insisted that I walk around the block everyday so I wouldn?t ?become de-conditioned.? I understand what her concern was, but it was a totally unrealistic and destructive amount to expect from my poor body at the time. After a disastrous start on her regimen and a month of recovering from it , I took my own approach to exercise. For several months it was just flexing & pointing my feet while lying on the couch to work my calf muscles and keep my feet flexible and articulate. Then I progressed to walking around the living room once before lying down again. I stretched when I could muster enough energy for it (splits on the walls was definitely out of the question until I started Mestinon!). Eventually I graduated to walking down the driveway or circuits through different rooms in the house. If I was totally exhausted afterwards, I knew I had done too much. If I was just a bit worn out, I would do a little less for the rest of the week and then gradually build back up again. As a CFS patient, you are probably aware of pacing specifics, so I won?t go into it in detail here. I did keep a list of what exercise I did each day to keep me from over-doing (the old bank withdrawal and deposit model) and as a reminder of how much more I had accomplished since I began (very comforting on the inevitable ?discouraged day?). The exercise was good for my body, stimulating for my mind, and refreshing for my heart. 8) I tried to spend some time outdoors each day. This did not always happen, but I did make an effort to get fresh air and a little sun; if I couldn?t get out, I tried to lie in a ?sun spot? like a cat with an open window nearby. Not only did it give me something different to see, but it made me feel better as well. I found myself becoming very sad and unproductive and drawn to bright lamps on rainy or overcast days even though I had no previous history of Seasonal Affective Disorder. I eventually came across and article about the chronically ill that stated that a large percentage of chronically ill people do not get enough sunlight (because they?re lying indoors) which can lead them to feel more discouraged and sad and less energetic. Days that I spent a little time outside, I tended to feel happier and accomplish more. On rainy days and during the winter, I used a lightbox borrowed from my mom?s boss ? it made a tremendous difference. It was astonishing how much more productive I was! It may not be a solution for everyone, but it seems clear that my brain was starved for bright sunlight after spending so many months indoors. Sometimes I just lay out on a blanket in the shade or on our glider. Other times I would make planting 3 petunia plants my goal for the day. When I got tired, I just lay in the grass until I was rested enough to try again. 9) I used my time to think. I purposely spent more time thinking and less time watching TV. I thought about things that I did well or knew about that I could share with other people. I thought about problems that I saw in my character or attitude that I wanted to change. I thought about ways to improve our closet organization or to make our living room more welcoming. I thought about ways to improve my schedule or fix problems in my treatment plan that I was noticing. I thought about activities my sister could do with her kindergarten class on a certain topic. I concocted low-energy activities I could do when my nieces came (they loved to sit in my lap and look at pictures of baby animals I found on the Internet). I thought about ways to make each member of the house feel more special. The inspiration came from a passage I read in Jane Austen?s novel, Pride and Prejudice, in which Jane and Lizzy have just come home from their respective holidays. ?But their father?was really glad to see them; he had felt their importance in the family circle.? I began to wonder what my importance was in our family circle and what I could do from the couch to be a comfort to my parents and siblings. One thing I began to do was to make sure the house was well-lit in the evening and that I was lying on the couch alert enough that I could greet people coming home from work and cheerfully ask them about their day. They loved it! One night I was actually in the bathroom when my dad came home instead of on the couch. His first question: a surprised ?Where?s Angela?? 10) I did what I could to focus on other people?s needs as well as my own. I wrote letters to troops overseas (they loved it!). I helped put stickers on kindergarten papers my sister brought home to be graded. I previewed videos for my brother?s 5th grade science classes. I matched my dad?s socks. I asked my mom about how her day was at work when she came home. I read and praised a dear friend?s college essay. I helped my younger brother study for a test he was taking. I sent a card and some drawings to my nieces. I wrote get well cards to people in the church who were sick or recently injured. I tried my best to help answer questions of newbies to the Dysautonomia Forum. Of course, all of this require frequent rest breaks and sometimes took multiple days to finish, but the happiness it produced was well worth the effort. 11) I took up new hobbies. I began calligraphy and embroidery. I learned a great deal about gardening from looking at catalogues and reading books from the library. Find something that you can pick up and put down as you need to and work on excelling in that area. 12) I celebrated the small steps. My mom and I had little celebrations when we finished putting together my medical portfolio. My sister brought a movie over and some microwave popcorn to celebrate a Friday night with enough energy to watch something. I requested a lasagna dinner when I was able to wash a sink of dishes again (after the dishes, I wasn?t in any shape to make the lasagna!). On one very good day I had enough energy to make a quick batch of oatmeal muffins my mom and I could enjoy as an afternoon snack ? a nice surprise for her when she came back from work. One day I simply wore a sweater that I saved for special occasions to celebrate the day I took a shower without feeling woozy. If you can?t go out to celebrations, try to bring them to you. 13) I never spent an entire day in my pajamas. Getting out of bed used to be a 3 hour process (after which I would promptly drop to the floor to avoid fainting!). I would then have to rest for an hour or so before attempting to change out of my pajamas. However, I did take the effort to change because I made me feel more like a normal person and made me feel more motivated somehow. I would pretend that I was getting dressed to go to biology class (a.k.a. lying on the couch watching Discovery Channel) or for my outing to the NY Botanical Gardens (also known as lying on the couch looking at the latest Spring Hill catalogue). Do what you can to keep some form of routine, allowing yourself enough flexibility to accommodate fluctuations in your symptoms. 14) I laughed and tried to surround myself with beautiful things. I made jokes (even to my deaf dog) while lying on the kitchen floor and I would chuckle over crazy spellings I made when trying to type out e-mails (I don?t know how many weird variations of my own name I found when editing my posts ). I had my mom pick up books at the library about art and gardening and animals ? even if I couldn?t read the book I could still enjoy the gorgeous paintings and photographs. I made sure there was a pretty tablecloth on the table when we ate or a lovely little scented candle near the couch to watch and smell. Find things that make you and the people around you happy. As my health improves, I?ve started walking around the block each day with a neighbour who is teaching me to speak Spanish. I know not everyone improves, but a lot of us do. The unfortunate thing about forums dedicated to particular illnesses is that most people who post on them frequently are still ill enough that they need to post frequently. I suspect the majority of us who do experience significant improvement in symptoms tend to spend less time posting because we are trying to reintegrate into other activities. I know I don?t post nearly as much as I used to because the on-line classes I take and language study require so much of my energy that I don?t have much left for other things yet. Please don?t let it discourage you. If a venting post is going to make you feel worse one night, I recommend not reading it. Shield yourself from whatever will pull you further down. If greeting people or answering questions in your ?area of specialty? will make you feel better, devote energy to those posts. You mentioned feeling too guilty to get involved in a book or show. I would really encourage you to take a very close look at where that guilt is stemming from so that you can free yourself from it. There is so much in this world that we can enjoy and contribute even though we are hampered by chronic illness. We experience a whole new side of life because we have chronic illnesses. One of my closest friends is a student at Princeton University. He says that I?ve self-educated myself better through library books, web articles, tv, and music than a number of his classmates have after four years at the university. He and several other people have taken such encouragement from seeing me (reading about me, that is!) work through these illnesses. I have had requests from a number of people to keep going on my e-mails because they look forward to each ?edition? so much ? it bolsters their own spirits and encourages them as they try to face their own non-health-related struggles. I don?t pretend to be a perfect person nor am I a perennial ?Susie Sunshine.? I have had many discouraged days, wept many heart-broken tears, and dodged acquaintances in public places on occasion to avoid having to answer that dreaded question of ?And what are you doing now?? (It?s true!) I used to not answer the phone so I wouldn?t have to talk to anyone. It takes time and a lot of thought to adjust to our conditions. My world revolved around dance and helping people until I found myself flat in bed barely able to take care of myself. It took a lot of time to work out my frustrations and feelings of inferiority. I had to adjust personal expectations and ?re-carve? my identity. I?m still working through things, but that?s just part of life, whether one is ill or not. Life for anyone requires change and adjustment and thought and ?bouncing back.? We do have some difficult physical issues to work through and live with ? I?m not about to dismiss POTS or CFS as minor considerations ? but we can live with them, many of us can recover at least partially from some of them, and all of us can find joy and purpose in our lives. I?m one of the happiest people I know. Don?t give up. Please feel free to PM me if you ever want to talk! I love to talk (in case you hadn?t noticed from the length of my post! I?m sure to be banned one of these days for taking up so much room on the board!) With love, a hug, and a smile, Angela I love your scrapbook idea, Nadine! Wonderful thought! Angela

It's me again! About the support group...like you said I think you'll be hard-pressed to find a POTS-specific group unless through this forum. However, I did a basic web search under "chronic illness support group in NJ" (without qutation marks) and came up with a number of possibilities. Some were CFS-specific while others were more all-encompassing. You may be able to find something close to home that way. If that isn't helpful, you might try asking someone in your township social services department or local hospital if they know of any chronic illness support groups. I spoke with the woman directing South Brunswick's food pantry & assorted social services at one point (she was simply fascinated by POTS) who was interested in starting or finding some sort of support group that I could go to; I was really too sick to attend any meetings out-of-home at the time so nothing really came of that suggestion. Let me know if I can help! Angela

Hi Sue! I'm another NJ POTSy so I understand your situation. We looked very hard for a POTS specialist (even someone who just knew about it) here in NJ, but we came up with nothing. The one neuro that we knew of who had any experience with POTS (which was limited) has moved away. We looked primarily in central NJ because that's where we live, but had trouble finding anyone north or south, too. I ended up opting to go out to Mayo MN to see Dr. Low when the electrophysiologist I saw at UPenn (who did have some POTS patients) recommended going to a research hospital -- he said he didn't know of anyone in NJ who would be able to help me. Dr. Low didn't have any recommendations for POTS doctors in NJ either. At this point, I only see my CFS doctor (who is aware of POTS but not extensively educated in it) -- she was willing to go ahead with any of Dr. Low's suggestions. It's SO nice that she has no ego problems to get in the way of our arrangement! I think your best bet is to look outside of NJ. Good luck! Feel free to PM me if you want to chat about it! Angela

Mestinon has been great for me! I had very rare and minimal stomach cramps at first, but now I have no side effects that I'm aware of. On Mestinon, I'd be living a pretty normal life if it wasn't for the CFS. Angela

Hi all! I know I?m hopping into the conversation a little late (enjoying the read! ), but just wanted to add a little thought. I know that finances are a limiting factor for a number of dysautonomia awareness ventures and that my suggestion is by no means a freebie, but it?s something to think on. It's also not specific to DINET-offered services, which I think is what you were originally requesting. I'l go ahead and mention it anyway, though. I?d love to see a course on dysautonomia designed for Continuing Medical Education (CME). For those of you not familiar with CME, I?ll explain briefly. In New Jersey (and some other states as well), doctors are required to complete 50 credits of CME each year to retain licensure; some other medical staff (PAs, NPs, etc.) are required to complete some amount of CME to retain certification also. Credits may be earned in a variety of fields of medicine by attending accredited conferences and/or passing accredited tests/courses. For example, a doctor might earn 15 credits for attending a major conference on sports medicine. The credits may be offered by a variety of sources such as the CDC or New England Journal of Medicine but all must be approved by the Accreditation Council for Continuing Medical Education. My dad took a free mini-course offered on-line by the CDC last year discussing CFS for a credit or two. I would suspect that a number of doctors would be more motivated to read about and study dysautonomia if they knew that they were earning credits at the same time. I would imagine that ?endorsement? by the CME Accreditation Council wouldn?t hurt dysautonomia?s credibility either. It?s not something that just anyone could put together, which made me hesitate about posting the suggestion. You would have to have competent medical personnel work on actually putting it together to ensure approval by the CME council and some amount of funding (I really have no sense of an accurate estimate ). That said, I would still love to see it happen! Would any of Dr. Grubb?s associates or DINET-advising physicians be interested in looking into the idea? We could furnish them with all sorts of ideas for course content! My dad just received an ?audition? CME course on CFS designed by CFIDS of America & the CDC (goodness, what an alphabet soup that is! ). I haven?t had time to carefully peruse it yet, but it looks like the course has definite promise from what little I?ve seen so far. I?ll list some of the topics below. I'd love to see a dysautonomia equivalent in circulation! It?s just a thought! Thanks for introducing this stimulating topic, Pooh, and thank you to everyone responding. I?m finding the responses interesting. Angela Some topics from the CFS course Table of Contents: 1. Overview of CFS (framework for understanding CFS, recognition and diagnosis) 2. Possible contributing factors for CFS 3. Myths surrounding CFS 4. Case definition 5. Diagnosis (differential diagnosis & exclusionary conditions, comorbid conditions 6. Management of CFS (supportive treatment, symptomatic treatment) 7. Impact of CFS (on patients, family & friends, employers & coworkers) 8. Prognosis 9. Disability issues 10. Case studies 11. Assessing and documenting impairment in CFS 12. Energy conservation in CFS: practitioner guidelines 13. Cognitive behavioral therapy fact sheet 14. Reproductive and sexuality issues in CFS 15. Resources

In all fairness to Dr. Low I think I ought to add an "addendum" post -- he didn't just feed me a bunch of vague lines. In regards to my specific prognosis, after speaking with me and reviewing test results, etc. he believed that if Mestinon worked for me I would be much improved after 1 year (able to walk arouund a block or two, light exercise each day, able to get out of the house for 1-2 hours, possibly even taking one dance class a week) -- which has been the case. He suspected that things would continue to progress somewhat after that 1 year, but that also depended on to what degree we had been able to sort out the CFS symptoms. His professional opinion was that CFS, not POTS, would end up being the only significant hindrance for me as long as the medication worked. He was right. Having just passed my post-Mayo 1 year mark, his suspicions have been confirmed. The absence of percentages on recoveries were about the POTS population as a whole. I think because our cases vary so much in complexity from person to person, neither doctor felt he could give "hard" numbers as to exactly how many recover fully, partially, not at all, etc. Sorry for the confusion on that point. I didn't realize the original query asked for our specific prognoses. Angela

Wonderful news! I've been praying! Enjoy your celebration! Angela

I saw Dr. Low -- it was the turning point in my illness. Not only did he find an effective medication for me, he explained POTS, answered all of my & my parents' questions during the consultations, and has continued to answer questions I mail him. He even took time to discuss other neuro problems I was experiencing. I found him to be an excellent choice for handling POTS/neuro issues. Good luck in your search! Angela

Sending a springtime hello your way, Laura! Both Dr. Low and the electrophysiologist I saw at UPenn said that most POTS patients experience at least some measure of improvement (nice to know, but rather vague ). It was only a small minority that experienced no improvement at all (good news!). In terms of who and how many POTSies recover completely, both did say that there were some who do; the electrophysiologist said that most of his patients did have close if not full recovery (keep in mind he only saw 1-2 patient per year with POTS), however neither doctor specified an exact percentage. They also didn't give specifics about the chances of recovery for "long-term" POTS patients. The elecrophysiologist did say that he had some patients with severe symptoms for several years who did make close to full recoveries once they found medications & managing measures that worked for them (again no percentage given). In my case, my POTS symptoms were very disabling and progressively getting worse for a year until I found an effective medication. From then on they have improved steadily. As long as I take my Mestinon, keep up on salt and fluids, and keep from overtiring myself, I barely notice any POTS symptoms. My quality of life has vastly improved! Now if I can just manage to shake CFS! Hang in there! Angela

Hello Jacquirouin! Sorry you're having so much trouble with health! I have POTS and CFS, although the CFS is my major hindrance at this point. Both conditions do have overlapping symptoms, which makes it difficult to determine which belong to which condition. The definition of CFS according to the CDC (Centers for Disease Control) is as follows: "in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria: 1)Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and 2) Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue." I would certainly discuss the possibility of your having CFS with your doctor. I'll warn you that diagnosis with CFS is not going to bring about lightning-fast change. There is no single, universal cure for CFS. There are steps that you can take to improve your ability to function, but not a magic pill as of yet. This is in part because the medical field still does not really understand much about the condition; the general population understands it even less. I've had all sorts of comments regarding CFS from people I know or have met: "Oh yeah, isn't that caused by some sort of yeast imbalance or something?" "Well if you hadn't danced so much you wouldn't have this problem!" "Oh, well just stop eating wheat, dairy, citrus fruit, starches, meats, fats, sugars, and fiberous vegetables and you'll feel better in no time!" "Well, if you just EXERTED yourself you'de be fine!" I'm sure someone could make a very amusing T-shirt out of the comments I've received! When I asked Dr. Low if I should see a specialist for CFS he told me not to bother -- I knew as much as they would he said. By educating myself and with some help from my dad, I've come up with a treatment that appears to be working for me. Generally, the medical professionals that I've talked to about CFS say that they treat CFS patients "by symptom." Since there is no single medication so far that seems to eliminate the whole condition, usually doctors work on getting rid of or reduce in intensity as many symptoms as possible, which in effect makes the condition as a whole less severe. Finally being able to sleep again was one of the big breakthroughs for me. I'm blessed with a wonderful new PCP with a background in CFS -- she's been able to give some very helpful suggestions regarding living with CFS and increasing my level of functionability, but there haven't been many medical interventions she could think of to get rid of it. So...I guess my point is this: definately speak to your doctor about the possibility of having CFS, but be prepared for the fact that if you do have it, it won't be a simple, straightforward condition to deal with. That is not to say that it is untreatable -- please don't misunderstand me. I'm thrilled by the progress I'm seeing on my treatment regimen and look forward to a more "normal" life ahead. Hope you're able to find some answers soon! Feel free to PM me anytime -- I love to talk! Angela

Hope you'll soon be back with us, Melissa! We need our Sun! Thanks for the update. Take care! Angela

At least you know the furnace is on your side! Time to set up house under the azaleas outside! Angela