Roselover

Well, some of you might have noticed I had been posting a lot in the past week. That's because I've felt a little better and even had lifted my chin out of the hole. But my foot slipped yesterday. I've hit bottom... again. Hardly have the energy to write this. I think I would be in total despair if it wasn't for all of you sharing your ups and downs. So, I'll hold to the hope that I will see light again. I see a neurologist today that may help me get into Mayo for evaluation. Don't know how I will even get dressed, but this is a big deal for me so I've got to find a way. Oh - and my primary finally agreed to give a prescription for saline IV - Horray! I'll get it tomorrow or Friday... maybe it'll help with the fall.... ~Roselover

Morgan, Yes, I agree... which came first? They are both awful. When the fatigue plagues me most, I say "if only it was just pain... I deal better with pain." (I birthed three babies with no meds!!) BUT then the pain hits hard and I say "If only I could get the pain under control, I could handle the fatigue". Yep - they are both awful! ~Roselover

Thanks for all the input everyone. It sounds to me - once again - it's a trial and error thing. I really hate this!!! Sophia and Briarrose - don't get up in arms... ... there is a lot involved with the diagnosis of Fibromyalgia. Briarrose is right, you do have to be very careful how and who you tell about fibro here in the Northwest. I was able to be seen at the Fibromayalgia Clinic at OHSU and so far, I have not been dismissed because of this diagnosis. At OHSU they take Fibro seriously and are doing a lot of research on it. In fact one of the main researchers in the country is at OHSU - Dr. Bennet. Here is what is really interesting. They believe that fibro is actually going to end up being defined as a neurology problem. They believe it is based in hormonal malfunctions - possibly located in the hypathalmus. Begining to sound familiar??? For me, I found my doctor more interested in the pain and solving that problem because she couldn't think of anything to cause the fatiuge. But I believe my dysautonomia came first and my fibro is secondary. May never know... Briarrose, the article you posted was very good! Thank you so much. And I agree about about the label of Chronic Fatigue. In fact, it was funny. When my primary was first trying to find out what was wrong with me, I looked her in the eyes and said "Do not tell me I have Chronic Fatigue. I don't believe in it!" We both laughed and now I believe in it, but also think there are a large number of causes - and mine is POTS! When I seen new docs or go places for treatment, I don't even mention the Fibro anymore - although I do sometimes mention I have a magnified pain syndrome when I am getting IV's etc. It seems to help them be a little more careful. Sophia, I too was in a study for fibro. It was testing Mestinon and excersise tolerance. Four groups - one placebo and no exercise, two placebo and exercise, three mestinon and no exercise and four mestinon and exercise. I ended up in group three, but for six months thougt I was in group one. Obviously, it didn't help me, but they did have great sucess with most fibro patients. I think my POTS/dysautonmia is causing most of my problems and that may be why it didn't work well. My biggest concern is that I don't want to take anything that will flare up the pain, but it sounds like I will need to just take the plunge and try. I like the idea of starting very slow. Sometimes my primary doesn't understand that. Thanks all for your input. ~Roselover

I really must agree with Kite and Morgan. I too am a person who relies heavily on faith and as a Pastor's wife, of course I would like to share with others about my faith that has carried me through... but not on the forum! Just as Morgan said- personal email, personal messages that both parties want to talk religion, politics etc. is fine. Catherine, I hope you can understand this and respect this. I hope too that you continue to find help and support on this forum. And, I warmly welcome you. ~Roselover

I'm praying for you and your family too Stacey. ~Roselover

Linda, I can't think of his name! I'll have to ask my hubby... he'll remember (no we are not High School sweethearts, but did go to the same High School) I'm going to have to get "Something' Gotta Give". I love funny movies!!! ~Roselover

Thanks Runnergirl... I look forward to your whole story!! I spent many years bicycling with my dad. In his mid 60's he still cycles30-50 miles at least three times a week! He's riden many Centenials, and completed a Double Century (200 miles in one day) several times. Your story of the cyclist is inspirational! ~Roselover

Hi Runnergirl, Thank you so much for your input on the tachycardia thread. It was really well said and easy to understand. I think you put many "hearts" at rest... so to speak. I was curious about your personal experience with POTS. You mentioned that you run marathons. I am curious if your POTS has never been very bad or if you have been able to come back from a real down time. If so, would you be willing to share your story? I have always been a very athletic person. Just before this POTs stuff got bad, I spent a lot of hours teaching dance, taking classes myself and playing tennis all summer long. I really miss these activities. I wonder if I will ever be able to move again. I know, just because one person can feel better doesn't mean I will, but hearing that someone with POTS is still running marathons has given me a thread of hope to hold on to. Thank you, ~Roselover

PS: there was a short discussion on Colin Firth in the FUN QUESTION thread... you'd better get in on it ~Roselover

Persephone, Oh, I am so glad you went!!! Those are memories you will always treasure. In fact, if a pots hole hits, you'll just have to siit there and replay all the fun you had... like watching a movie in your mind... and remind yourself that it was worth it. However, I hope you DON'T have a pots hole now. That would be even greater!!!! ~Roselover

Linda, I went to school with someone who danced in the movie "A Chorus Line" ! Unfortuneately, I have heard that he has since died of drug overdose. Has anyone seen "Dirty Rotten Scoundrels" with Michael Keaton and Steve Martin... It's hilarious!!!! And somebody mentioned Matthew Broderick... have you seen "Ladyhawk" ? It's a great movie because it's got lots of action and fighting AND romance. Roselover

Hi Julie, I am so sorry that these docs keep giving you the run around. I've gotten some of it too but I am still at the begining of learning. At least you have some documentation and few doctors that do support you. I am glad for that. I too have a couple of important appointments this week. One of the things I have done is prepare a packet with a Table of Contents, An Overview of my health history, a list of my symptoms and the medications I have tried. Then I have included copies of labs begining with the 2 TTT results, Cardio, Neuro and blood work. It's all listed in the Table of contents. I don't know if this will help, my first appointment is tomorrow with my primary(tues) and my second is Thursday with my neuro. But maybe this idea will help you too. I got this idea off this forum, hmmm... I think it was Angela (??) that suggested using this techinique for getting into Mayo. Let us know how your appointments go. ~Roselover

Hi Ariella, I don't know about the walking thing, but I too have felt worse when I took Florinef. They continued to increase it and I kept feeling worse. I have now decreased it and I am feeling a little better. What does this mean? I don't know... maybe someone else will be able to give us more info. I will PM you soon with an answer to your question about living with this as a pastor's wife. ~Roselover

JLB, I am not a nurse or docotor - just a fellow patient, but I seem to be the only one online right now that can take a shot at calming your fears. I hope soon others with more knowledge than me will also encourge you. First of all, though I value eveyone's input on this forum, I encourage you to be very careful not to let one or two comments define the truth for you. Everything I have read.... and I have read A LOT and am a person who loves to learn and become educated.... everything I have read has emphasized that POTS is not a deadly type of tachycardia. Now, I just did some more reading for you about tachycardia and dysrythmia. Tachycardia is the heart beating faster than it needs, dysrythmia is beating slower than it needs. There are many many types of tachycardia. Some are very dangerous and many are not. Some need treatment, many do not. I think this is why all the literature I have read encourage patients to get checked out by a cardiologist, so that the dangerous can be ruled out. I believe you have said that you have seen a cardio. I am sure he/she has ruled out the dangerous types, but if you are unsure, you should find a different cardio and have them do a full workup too. When a disease or illness is dangerous or life-threatening, I can find it in the literature published by reputable medical sources. I have not seen anything like this about POTS. Now, hopefully, our two friends who shared the scary advice will come on soon and explain what they meant, so you can understand why they shared these things. However, until then... your life is worth living. Every moment is precious. None of us knows when we will die or from what, but we must make the most of the time we are given. With that said, I encourage you to calm your fears by thinking about why God would have put you here on earth today and make the most of it... (and watch a few M*A*S*H episodes to get your mind of your fears ) I will not go into any religious talk here on the forum, but if you want to talk more about the meaning of life you are welcome to send me a personal message and I would be happy to tell you about mine. Hang it there and I am sure we will get some anwers to your post as the day wears on. ~Roselover

JLB Gets the prize!!!!!! WOW... I didn't know if there would be any other MASH fans out there!!! Grinning Big.... Roselover

Can anyone identify the TV show and/or character who said this.... "I don't have all the answers. If I had all the answers I'd be at the Mayo Clinic. Does this look like the Mayo Clinic?" With all the talk about Mayo.. and as I am looking into going myself... I thought this was really funny. Anyone recognize it???? ~Roselover

Oh Lisa, how could I have forgotten Christmas movies??? How about White Christmas with Bing Crosby? It's one of our favorites. And Elf is very funny! I think we're going to have to buy that one... Yes, I have seen Napoleon Dynamite... it's quite the hit around here with the teenagers. I hear it quoted all the time! It's got to be one of the most ingenious, stupid, funny and intriguing movies made lately! My favorite part is when Deb comes to sell glamor shots and little bracelets. ~Roselover

My daughter hasn't danced in any musicals... yet.... though she really wants to and will be auditioning for some musicals this coming fall. She has been dancing mostly ballet, but also jazz and modern with a dance company in our area. She has been in the Nutcracker Ballet for 7 years and was actually cast as Clara the year before last. Wow, was that a huge thrill!! She loves perfroming... and dreams of being on Broadway. She's got a great voice too, but needs some training. My oldest daughter has been very invovled in stage work. Both girls attended a school focused on the arts and Marie, my oldest was in Fiddler On the Roof and starred in Shakespeare's Twelfth Night last year. She was Olivia. And as long as I am doing some mother's day bragging, my son is very artistic as well and has just begun playing the guitar, drums and electric guitar. For mothers day he wrote me 4 songs! OK... enough bragging... but I love stage and theatre talk!!!! Roselover

I don't really have a "favorite" song.... I love music! My favorite right now is a series of CD called Solitudes... the titles are English Garden, Woodland Flute and Lakeside Retreat. They are beautiful relaxing music with nature sounds... water, birds etc. I also really enjoy Enya. I also love James Taylor music... from my younger days... I got a CD for Mother's day! And I enjoy a lot of modern Christian Music... kind of have to as I have three teenagers at home ... Switchfoot, Chris Tomlin, David Crowder... The most romantic song I like to dance to with my husband is "When I Fall In Love" by Nat King Cole and Natalie Cole. ~Roselover

Actually, Corina, I must admit that I have only seen one movie with Colin Firth in it and that is Pride and Predujice (Jane Austen) I guess we'll have to leave that question to Persephone. I forgot to list some of the musicals I love... like My Fair Lady (I was in it on stage in High School), and Sound of Music. OH! and has anyone seen "What's Up Doc" with Barbara Streisand and ... oh darn can't pull up his name ... I'll remember it soon... My 15 year old daughter says I have to mention "Hello Dolly" it her very favorite musical movie right now. She's a dancer and loves the dancing as well as Barbara Streisand's voice. ~Roselover

Several of you have mentioned Johnny Depp... have you seen "Finding Neverland" ? We rented it recently and my whole family loved it! He is a very diverse actor. I love Gone with the Wind too.... I'm named after someone in the movie too! Janine... we'll all have to rent Moonstruck so we can get to know you... hee hee. I love the way we all have diversified tastes! Morgan, my kids love the band "Switchfoot". They play the song the girl in "A Walk To Remember" (can't remember her name) sings. So I hear it ALOT! Have you heard any of their albums? ~Roselover

For those of you who have Fibromyalgia in addition to POTS, I am curious if you have had any success with SSRI's? I am trying to decide if I will try one or try Wellbutrin. I have read many articles etc that suggest that SSRI's can actually make Fibro symptoms worse. Just wondering if anyone can give me input on their experience. Thanks ~Roselover

I've only had my diagnosis since for 9 months, but I have been told the same thing - even by specialists who claim to know about POTS and even treat a few POTS patients! I echo your comment - my poor primary. She feels like she has failed me. Right now I am talking to one of the specialists I've seen and my primary about finding someone who would be willing to learn with me and help me follow treatment advice and help get me into Mayo for a workup and treatment plan. I'm trying to encourage them that I understand why they are unfamiliar with POTS but that I need a doctor interested in learning with me. Doctors have a hard time admitting that they "don't know". Mary--- I am curious about your comment about you abdominal pain. I posted a question about this and your expereince sounds similar to my sister. How did you figure out it was POTS and not some other problem? Have you heard of others with this kind of problem? Stacy-- I hope you can find someone who will help you with treatment too, but I also hope this forum helps you to follow Mary's advice. I know I will be trying to, too! It's really hard to face the possiblity that this can't be "cured". ~Roselover

I just thought it would be fun to ask a question that helps us get to know each other and take our minds of our illness for a few minutes. So here goes.... What's your all time favorite movie? It hard for me to answer... I have lots of favorites... I love Jane Austen movies, especially "Pride and Predjudice" (with Colin Firth - Persephone ), "Persuasion" and "Sense and Sensability". I also love "Much Ado About Nothing" with Kenneth Branaugh, and oldies like "Casablanca", "African Queen" and "Philadelphia Story". I like modern movies too like "While You were Sleeping", "Secondhand Lions" and "Sea Biscuit". But my all time favorite... the one I have watched the very most... is...... Anne of Green Gables (with Megan Follows) !!! ~Roselover

Hi everyone, The discussion on this stuff running in families has made me think. My sister has also been very sick for over a year. She has unpredictable tachycardia that no doctor has taken seriously. But her most persistant symptom is severe pain in her stomach - right near her belly button - especially after she eats. She's had numerous tests - even for very rare causes. She's lost a lot of weight and was on a pic line for nutrition for awhile. Now she keeps it under control with heavy pain meds. Has anyone else hear of this or experienced this with Dysautonomia? Just wondering... Thanks Roselover