thejohnsongang

I too have only taken the generic form and have had no problems. It is such a widely used medication that I can't see them stopping it all together. Hopefully those with very sensitive issues to medication ( like myself most times) can find a generic that works for them. I had that problem with the midodrine. When I switched insurance companies my new company wouldn't pay for the brand name. Most of the generic midodrine tablets I had problems with until my pharmacy finally found one that didn't bother me. He now orders only that generic brand for me and keeps it in stock since he knows I will always be getting more it has never been an issue. Maybe for those that are sensitive to the generic Florinef can find a pharmacy to work with them like mine does.

Hope your up and swimming around soon. Big Huuuuugs.

I agree. I had a very hard time explaining to all my family and friends about my illness. I always got the "But you don't look sick" scenario from a lot of them. I printed out info on POTS/NMH and asked them to read it. I sat and talked for hours with some of them. The few that didn't get it, I had take a walk with me...at my pace and they slowly began to understand. I kept only a few friends as most wanted to stay at their own pace or never understood what I was going through. I cherish the one's I have kept and appreciate their understanding of my condition. It's hard for healthy people to slow to our pace, but the one's that due are true friends. Like Ms. Burschman said, as you learn more about your illness it becomes easier to talk to others about and what works for one person does not always work for another person. I glad you found us and hope you find the answers you need. We have all been there and understand how challenging it can be.

Thanks for the site. I checked it out and have found a few interesting things on it. I will be checking it out again. It's just so frustrating to try to find good info and support on FM.

I was just dx with FM yesterday. Does anyone belong to a support group they can recommend? Just looking for support as well as ideas on medication and treatment options.

Julie, I haven't heard back from Dr. Rowe yet. Not sure if he his getting Anna's results from the TTT together or just out of the office. He usually writes back the same day. She goes to see her pediatrician today. A new one in the same office. This one did her internship under Dr. Rowe and with the Pediatric Allergy Clinic at JHH. Hopefully she will better understand Anna and all of her issues. Dr. Rowe recommended her. Anna is back in school now, but still recovering from all of her tests. She comes home and falls into bed and sleep all afternoon and night. She is slowly regaining her energy. She swears she will never have a TTT done again, and I really don't blame her. I only got to meet with Dr. Debari while I was in the OR with Anna prior to her being put under. Her regular GI spent most of the time with us. Dr. Debari said he remembered Mack and was glad to hear that things were going ok for him. John was a special soul to us during our visit at JHH. Anna really liked him a lot and enjoyed his honesty about what to expect. He also remembered you and Mack and sends his hello's to you. At least it is all behind us now and we can go forward from here. She just wants to eat and either keep it down or not have pain when she does. I will let you know what Dr. Rowe has to say. Nolie

Thanks for the link. I checked it out and signed up. After reading the whole site, I feel like it was made just for me. I have all the symptoms, and all of the tender points except 4. I go see my PCP today and will discuss all the options with them. The thought of trying to balance another illness is just overwhelming. I just feel so down about all of it right now. In the past year I have had so my dx and seen so many doctors I feel like I'm running in circles. Since Sept of 2006 I have had the following added to my list of dx POTS, NMH, PCOS, evelated testosterone and now FM. What a year it has been. Like Morgan said it doesn't just rain...it pours. That's how I feel. With all of my issues and now my daughters health issues...it's just to much most of the time. Thank god I have a supportive husband and family. I will be talking with my PCP about the substance P and the vitamin D deficiency. I hope we can find some answers and meds that work for me. I just get so sick of being so tired all of the time and of all the pain. I feel like I've had the flu for years. I sleep so much now I feel like I sleep most of my life away. I sleep on average 14-16 hours a day. Most day I end up taking a 1-2 hour nap on top of that. I just wake up tired and exhausted and then during the day I get this "wave" of exhaustion that comes over me and I can't keep my eyes open. Just taking a shower/bath is such a burden on my body let alone trying to do anything else around the house. I miss being able to do things with my kids, playing sports with them, going on hikes/walks with them....and I miss my private life with my husband. It has all changed so much. I went from a very active person at 33 to this lump of a person at 36. I use to be such a happy, outgoing full of life person and now I avoid people, avoid going places and can't do much at all. Some days I push myself to the point of exhaustion, just to try to have a glimpse of my old life. I have a few friends I keep in touch with by phone or e-mail, but all the others have just drifted out of my life due to my illness. I guess I learned who my true friends were. My husband is a saint about it all. He works full time, then comes home and does the laundry, cleans the house, does the dishes and cooks most of the time. He always makes time to spend with the kids and to massage my legs and back for me. He goes with me to all of my doctor appointments, reminds me to take my medication and even helps me shower/bathe on the days its really bad. He doesn't even complain about my unshaved legs. I am very lucky to have found such a person. We had only been married 1 year when I got sick. We dated for 2 before that. He has been my rock through all of this. Since finding this site I've learned to cope with things better knowing that there are others that have the same issues and feel the same that I do. It's been a great source of information, friendship and understanding. Thanks to all of you that have helped me over the past year.

My ttt was real short. Up for 20 minutes then down. That was it. This is the first time I have ever heard of up, down 1 minute....up, down 30 minutes.....up, down 15 minutes with meds. She had her TT done after her testing as they put a mannometry in place to test to see if POTS?NMH was causing her vomiting or GI problems. She did not have twilight sleep, she was put all the way under for just over 2 hours. She was dehydrated even with IV fluids and had not recouped from her first set of tests. They had to place the mannometry tube surgically, so they did all the "fun" tests first. They even had her fasting for the TT. Not sure why, but that's how they scheduled it. I awaiting a call/e-mail from her pots doctors to get some answers. I e-mailed him this morning. I want to know why they gave her an injection of medication to raise her HR. Why they didn't stop the test when she freaked out the way she did. And what the test showed besides what I was told in the room. Hopefully I will have some answers soon. When I get them, I'll let you all know. I will pass on all the hugs and encouragement to her. She feels like she has been put through the ringer and is still sleeping off the effects of her stay at JHH. but she is a trooper and won't stay down for long....Oh how I envy her energy level.

Ling, There are no words for how you feel. I know that there are lots of women on this site that have had similar thing happen to them. Me being one of them. I have 2 beautiful kids 16 and 12. I had just recently gotten remarried and that's when my health took a turn for the worse. In and out of hospitals, back and forth to hundreds of doctors. In the end we opted for a hysterectomy instead of removal of my tumor as the chance of it returning were very high. My new husband and I were in the process of trying to have one more, together. Our plans changed. I was so mad, hurt, depressed...you name it and I felt it. As the years have passed, I have learned to endure the emotions I still feel about it. But over the years it has gotten better. I did what you are doing, turned to chocolate and other foods. I ended up gaining 50 pounds, but it was my way of dealing with it. Now that I look back I am grateful that I did not have another child. My health issues of dealing with all that I have and now having a 16 year old daughter with the same and more is more than I can handle at times. I feel like my 12 year old get left behind at times. I knew what I wanted all those years ago, but god was the only one who knew what was going to happen and he did not put more on me than I could handle. I've learned that in my life that things have happened for a reason...even if we can't see what they are. My suggestion is to love your little one, spoil her to death. Then later if your situation changes, then look into having another baby. Adopt, get a surrogate, have a family member carry for you...etc. There are lots of options.

Well I went back to the immune specialist today for my test results. All in all it was good...everything turned out negative. But on the down side I was dx with FM today. She said that since nothing else has shown up and since I have pressure points and with the symptoms I have that is the dx she is going with. She told me to follow up with my PCP and get started on mild antidepressants and to work on getting "good restful sleep" as well as start on an exercise program. Who is she kidding. My exercise program consists of me getting my butt out of bed in the morning. But I will talk with my PCP about it and try to do some sort of exercise. I just feel that this is another dead end. I believe in FM, but know that it also is the dumping ground, for some people when nothing else is found, by some doctors. It was just a depressing appointment. I will just try what is suggest and hope I get some relief. I don't want to have to live my life (if that's what you call sleeping and hurting all the time) being on pain pills. Thanks for the links and I will be doing my homework on this one.

I can't feel mine pooling I can just see it. My legs get this blotchy red all over them. My feet turn deep red, almost purple. In my arms the veins stick way out and are very bright blue and I get a few blotches. When I up and moving around I don't really feel much except they feel heavy like there are weights on my ankles. I get more and more open gated walking and eventually have to sit down and put my feet up and they are just so heavy. Not painful, again just like workout weights are on my ankles. I feel it the most when I sit down or lay down. They ache like a toothache. I feel the need to change positions a lot, but as the blood starts to move I can feel the ache go away. It hurts most in my feet and calves. It can last for several minutes to all night depending on how long I was up for. Most of the time at night I have to take some kind of pain medication just to get to sleep. I guess it is different with each person on what they experience.

Whew....we made it through. We got home late last night. Usually our 1 1/2 -2 hour drive turned into a 3 hour drive due to a fire and 2 lanes were closed down during rush hour traffic. I promised everyone I would write, but just could not get up the energy until today. It was a horrible 2 days and I'm very glad to be home. We arrived at the hospital at 9:15 and check in. Anna's surgery/tests were to be at 10:45am. Due to a problem with a child in front of us we did not get into surgery until 2pm. Lets just say a very long wait. They did her endoscopy and colonscopy and then put in her mannometry tube. She was done in a little over 2 hours. She even got the blessing of having some of her "stomach juices" collected for the infectious disease department. They are doing some research and asked for willing participants and Anna agreed to help. Anyway, we to recovery for about 1 hour and then to our room. We ended up getting a room on the childrens oncology floor as all the rooms were filled by the time we got ready for one. At least we got some very nice nurses and a private room. The rest of the evening went fine except for the part where she got caught up in all of her tubes/wires and pulled her IV out. Not a good experience, but still workable. I got the privilege to sleep in this chair that folded out into a bed. Lets just say the floor was softer. Then her pump went off every 2 hours and woke us both us and then the nurse came in every 4 hours to check vitals. Not a good nights sleep for either of us. Friday brought on Anna's most worst day thus far. More so than the prep part. She had a lot of problems with her TTT with symptoms. She was so light headed/dizzy etc. She was having a bad day to begin with then as soon as they started the TTT she started throwing up. She did survive, but threw up again towards the end. They then injected adrenaline and that's were everything took a turn for the worse. I wasn't in the room, but it wasn't long before they came and got me. She literary freaked out. Her symptoms were so bad that she was screaming, crying and begging for them to stop the test. They didn't of course and then she was trying to get all the straps off herself. She kept jumping and twitching and the poor thing remembers all of it. I rushed in as soon as I could and she was just curled up in the fetal position shaking and crying uncontrollably. It took me over a half an hour to get her calmed down enough to talk to me. We moved to recovery and I talked to the tech some about what had happened. He said she had experienced signs of being scared, but pushed through the test to get the results they needed. He said he had not seen any results on her TTT that stood out as POTS/NMH but had technically failed the test due to the vomiting. He did say she did show signs of having something due to the reaction she had when they gave her the adrenaline injection. He said she was inconsolable for lack of a better term. He said she clearly became anxious and irritated as well has kept acting like she was falling or trying to catch her self. It took over an hour to get her heart rate to come back down to around 100. They had pushed her up to 158 at one point. She was miserable and I was frankly mad that they didn't stop the test when she had the reaction that she did. They kept her in recovery for about 2 hours and then moved her back to her room where she curled up with her dad and slept for the next 3 hours. They gave her a medication that I can't remember how to spell or pronounce for her stomach and then she had to eat 1 hour after it to see if it helped with her digestion. At 3:30 they came and took her mannomerty tube out and we came home. She took a shower and went to bed and except for getting up at 11:00 today to eat breakfast that is where she still is sleeping. She is pale, tired and feeling horrible. She told me and her father that she would never let them do another TTT no matter what. We get the results of all of her test in about 2 weeks. We will also be following up with her CFS/POTS doctor. I want to hear his input on her TTT results. I trust him and want to hear his findings as well. She clearly has signs/symptoms for POTS/NMH, but the tech said her TTT did not show it. If it didn't show it, then what were all her symptoms that are not related to her HR or BP? I loved the doctors we did see while there, but this was the first time they had ever seen Anna. They don't know her, her history or symptoms. Some were wonderful, others (like the TTT tech) are one's I could live with out. We got to meet with Dr. Dabari as well has with her regular GI doctor, a different cardiologist Dr. Brinker, and more than our fair share of GI residents that clearly wanted to meet Anna as she was an unusual case. I think in the course of 4-5 hours on Thursday evening we had at least 6 come to her room to say hello and look at her chart. We did have a wonderful guy named John her took care of her mannometry tube and notes. We spent the most time with him over the 2 days there and Anna really liked him, Chet the TTT tech she clearly did not like. At least it's all behind us now and we can hopefully get the answers we need. Thanks for being there for me. It was better for me than I thought it would be. But believe me...there is no place like home...especially for sleep. I did end up in the Wilmer Eye ER at the hospital on Friday. I woke up with my left eye swollen shut and so sore I couldn't touch it. I waited in the ER for 3 hours before I gave up as Anna was getting discharged. The swelling has gone down some, but it is still sore and my vision is a little blurry. I will be waiting until Tuesday if I can to see my PCP about it. If not then I will go to our local ER here. I just want to get some rest and keep my eye on Anna for the weekend. Thanks again for all your thoughts and prayers. Our whole family appreciates it.

Thanks guys....I'm starting to calm down, but won't guarantee how I will feel tomorrow. Julie, thanks for all the info and I sent you a private message to your regular e-mail address. You have not bored me with any info. I feel a little better now knowing what to expect. Just to update you on Anna's health issues she has EGID, POTS, EDS, Von Willebrand and her GI issues not related to the EGID. That is what this motility study is for. When she was 6, her EGID was in her esophagus, stomach and small intestine. We will also be able to find out from this test if her EGID has gotten better or worse. But even with her tight food restrictions she's still getting sick. They feel it may be the POTS, but could also be the EDS or something else all together. That why the TTT, to check for the pots issue with her GI. She's lucky enough to get the 4 for 1 special Today has been horrible for her and we still have several hours to go yet. First her prep is making her sick to her stomach causing severe cramping, nausea and vomiting. I've been on the phone several times today with JHH and have been working around it. Second, as the day has progressed so have her POTS symptoms. She's drinking as much as she can....water, Gatorade, juice, Italian ice, chicken broth and tons of jello in her favorite flavors of orange, lime and peach... but she's so dizzy she's stumbling around and bouncing off the wall going down the hall to the bathroom. Third, she's cussing the makers of the prep for the taste and results. She wants to know why they don't have a chocolate flavor Don't we all wish medication tasted like chocolate. The only flavor they have in our area is ginger-lemon...she referred to it as drinking poison. Thank God she only had to drink 2 of the 1.5oz bottles over the course of the whole day. On top of all of this she has to use her DDAVP in the morning 1 hour prior to her procedure which she does not like. She needs it to stop any bleeding as the Von Willebrand stops her from forming a complete clot. The DDAVP makes her turn bright red, flushed from the increase in BP and makes her feel like she has the flu. She usually sleeps the whole day after using it, so I might be girl talking and watching movies by myself but that's ok...I will just be in bed sleeping with her if I can. I'm confidant in the doctors, I just don't handle stress at all. Anything more than a minor cut or bleed and I freak out. Not during, but after most of the time. But I know this is coming and started to freak out early. My husband said he would stay with me until the last minute when he has to leave to go to work. But he did reassure me that if anything went wrong or if I just plain needed him to call him on his cell and he'd just leave work and let them deal with it. I'm sure I'll be fine, I'm just a worry wort about everything....especially my kids. Anna has always been my special child. I was a single mom when I had her and she was a very sickly baby due to the EGID. It took us 6 years to get the answer on that one. Her pediatrician was clueless and we got all the wrong answers for years. But over the years we built a bond that is more than just mother/daughter. We are friends and talk to each other about everything. Having Pots has been a challenge for both of us, but has brought us closer together as we understand each others illness. She's my first born and I'm very proud of the person she is maturing into. I'll have to remember to pat myself on the back when I get done typing....My son is a mommy's boy and a very gentle soul. He is 12 and is the most respectful and thoughtful child I have ever seen, even though he is ADHD. He always lays with me, tells me about the girls he likes and gets me fresh drinks just way I like them...tons of ice. He cooks with me and loves to make cookies when I feel up to it. We share a close bond as well, just not the same as Anna. He likes to be more of a loner and play his video games, hang out with friends or shoot his BB gun. Thanks again for all your thoughts and prayers...We are going to take our digital camera with us...so if I remember to take pictures, I'll post a link for everyone to see us "chillin' out". I will be off line for a couple of days, but as soon as I can I will let everyone know how things turn out.

Julie, I have been trying to send you a personal message for days and your box has been full. I remembered talking to you when Anna was first dx about JHH and their doctors. I Was going to ask you who his Doctors were and if he had his done at JHH. Yes, Anna does have Dr. Darbari for her testing. Her regular GI at JHH is Anthony Guerriero. Not quite sure who is doing her TTT, but I'm very nervous about it. Dr. Rowe did a "make shift" TTT in his office on Anna back in March. He had her lean against the wall at a certain angle for 20 minutes to see what symptoms she had as well has check her BP and HR. In 7 minutes she hit the floor. It scared the crap out of me. She didn't completely pass out all the way...but she was defiantly out of it for a while. Dr. Rowe told me I would love Dr. Darbari. And after hearing from you, I'm sure I will. It must have been awful for Mack. The prep reaction and the vomiting with the tube in. Anna has a very weak gag reflex. She has been having trouble all morning with her first dose of prep. I even called the hospital to ask what I do if she does throw it up. She is NOT looking forward to these test. The endo she said won't be that bad, but the other 2...she would rather be beaten with a coat hanger. She is a very, very modest girl and doesn't want anyone to see anything. It has been an issue all her life. She has been a little better with Dr. Rowe about showing her stretch marks from the EDS and letting him check her out. She loves him and she feels very safe in his care. That is one remarkable doctor. She remembers the stories from when she was little and he was the Dr. that saved her life by finding the correct dx and treatment for her. That Dr./patient bond is very important to us. I know you and mack feel the same way about him. Anyway, thanks for sharing your story with me. I will try to send the PM again. If not, it's ok. Thanks to everyone for their support. It's a godsend to talk to people who understand, get it and can talk with me about it.

Maggy, So sorry to hear that your daughter has pots as well. It is very hard for my daughter to deal with her pots. She wants to just be a normal teenager and not stand out as well as be very active. She works very hard at it. All of her friends know just in case she would faint, but otherwise she does whatever she wants pretty much. It doesn't come without a cost though. She will play sports all weekend and then sleep most of the week. Now that school is back in she knows she will have to pace herself better. Anna as pots as well as EDS and Von Willebrand. A very bad combination as EDS causes your connective tissues to be weak, and she could bleed. Her Von Willebrand is type 1 which is the better of all of them. She is only a mild bleeder, but dangerous none the less. I hope your daughter can continue to do her own things and that her symptoms are not bad. As for genetic I've never been told anything until Anna was dx. I was the first to be dx then my mother who is 71 and then Anna. Her doctor said it runs in families some times. But I have not done any research on it yet. We have just been dealing with day to day and getting Anna straightened out. She has had a long hard road of it and is finally starting to see some improvements. Now we are just trying to get her GI problems under control. For a relief from the cool patches you should try what Anna and I do. We bought a ice/heat pack from our local drug store. It can be put in the microwave or freezer. It is a gel pack that stays soft and we keep it in the freezer and use it when we need some relief from headaches, cramps or muscle spasms. Just a thought. I think I paid about $12.00 for it and we have been using it now for over 6 months. Again, glad you found us and I hope you can find a lot of your answers here.

I'm not sure who is doing her TTT. I only know that it is at the Hospital at the Blalock bldg. I do love John Hopkins. They saved her live when she was 6. She had went in a coma and our local hospital sent her down to JHH and they dx her same day with severe food allergies call EGID and had her better and home in less than a week. Her CFS doctor now at JHH was the attending on call when we were admitted. He remembered us as soon as we entered his door this past year. He's great. I know Hopkins is the best place around for her and that the doctors are wonderful and know there stuff. My fear is about her being put to sleep and me being alone for most of the time. My husband has always been there for me, gone to every apt he could with me and most of hers. He works at night so it makes it easier to deal with us sickies here during the day. For 7 years now he has been by my side for all of it and I'm scared to deal with it by my self. Not sure how to anymore. He knows just how to talk to me and calm my fears and keep the stress away most of the time. He's a godsend to me. He came to me at just the right time in my life. He is Anna's step dad, but in her eyes he's her only daddy and she loves him to death. She's his little girl and it is driving him crazy that he can't be there through it all. But only 1 parent can stay, and we decided that it would be me....cause this crazy mom can't stand the thought of not staying with her. It was not an easy argument to win with my husband. My fear of having a spell is while she is in having her procedures done. Before and after I can deal with, I think, we'll be in our horizontal positions together. I have a thing for pacing the floor when I'm nervous and it could get me into trouble. I've been fluid and salt loading so far this week trying to prepare for the trip and stay over. I have also been trying to get lots of extra sleep. All for 2 days worth of tests. That what most people don't understand about our disorders. For some of us it is 1-5 days of prep for us to do most things. We can't just pick up and go. I guess I'm just being a worrisome mother and should just settle down, but I can't. I cry most of the time when I'm thinking of it all. I have never taken anything for my nerves or to calm me down. I haven't even thought about asking my doctor about it. Now here it is 2 days prior and I'll never be able to get an appointment to see him and I know he won't call anything in without seeing me. Oh well...I get to bite the bullet on this on. Anna and I have already decided that were are going to be bed buddies while she's in. We plan on watching some TV together, sleeping and having some girl talk together. We love to girl talk..most 16 yr olds don't like to with their moms, but our relationship is different, we're friends as well and share our thoughts with each other on everything. We are even taking some craft stuff to try to learn to make bracelets that you finger crochet. Should be interesting. We leave home Thursday morning and will be home some time late Friday as long as everything goes ok, which I know it will. I've just got the mom jitters. As for the prep for her procedure..she sure is looking forward to it.. How could anyone????? She's staying home from school of course and we have everything ready for her....baby wipes, desitin and lots of paper. But she's worried about accidents. I tried to calm her fears by telling her we would use the garden hose and then just have to buy her new pants... .... she loved that one. Anyway now that this is a book, I've got to go make Jello for her to eat for the next 24 hrs. Thanks for the thoughts and input...

Yes I do have the trigger points. On my chest, small of my back and buttocks. I actually broke into tears when the doctor pushed on them. This is one of the reasons she thinks it is Fibro. We did talk about using an anti depressant to treat it if that is what she dx me with. She mentioned cymbalta, but I took that before I was dx with pots, since my doctors thought I originally was just depressed. I hated the stuff. It made me feel horrible. I was also tried on wellbutrin and prozac. The wellbutrin mad me feel depressed, but the prozac did help some. I just can't remember why I stopped taking it. I think it was to find the correct dx, but I'm not sure. Lack of sleep is not something I usually have to deal with...I usually sleep way to long. but on the occasions I don't not get enough sleep I feel horrible the next day pain and pots wise.

Rachel, That does sound very odd. I was asking because I get these little bumps, just plain flesh color or light red, almost like a hive. Very small like a pimple that itches like the dickens for several days and then it just disappears. No one has ever been able to tell me what it is. Nothing works for the itching. I've tried just about everything. I know there are a few others on this site that have them and was just wondering if you had the same. It's a shame you have to wait a couple of months to get your ANA done again. Could you do it sooner? Maybe at the time you get your other blood test done at your PCP in 2 weeks? Any way it is great news that you don't have Lupus or RA. I hope you get some answers soon.

Hey everyone. I am having some personal issues dealing with my daughter right now and could use a little support from all my POTS friends. My daughter (16) has POTS, EDS and Von Willebrand and has been having problems with her GI for months now. She is scheduled to have a motility test done on the 30th at John Hopkins Hospital and will be staying overnight for more testing on the 31st. She is having an colonoscopy, endoscopy, and manometry with TTT. Im nervous, scared and it's causing my POTS symptoms to act up like crazy. Anyone had these done? Know what it's like? She has been experiencing vomiting, nausea, cramping, diarrhea, constipation etc. since Jan. We finally got the doctors to do more testing, now I'm scared to death. She has to have DDAVP prior to her procedures and I'm very nervous about her bleeding. Any advice? I will be off line for a couple of days while we are gone. I'm going to stay with her, but my husband can't get off work. He will be down on Thur. during the day, but Thrusday night and Friday I'm on my own and I'm scared I'm going to have a spell while I'm there with her from all the stress. HELP....

Rachel, Is your rash just a bump here or there that itches like crazy for days and then just disappears? I have spots like this and was just wondering? Nolie

Welcome back.....glad you got back to us when you need us. It hard for us to emotionally understand that this disorder is not in our heads as we spend years trying to get a correct dx. We are told for years that it's in our heads, we're depressed, we want attention, we're lazy etc, etc, etc. But when you finally get the DX after all the tests...it's pure joy!!! Joy you say, yes, joy to know that we are not crazy, but have been undiagnosed or misdiagnosed for years. And finally knowing that you have dx and can work from that point on to control what we have. I actually cried to my PCP after I was DX by my cardio. They were the only 2 doctors I had that didn't think I was crazy. I'm glad they didn't give up and worked to find answers for me. I'm sorry you had such a rough time of it, but from her on out you can use your energy to work on your disorder instead of trying to prove it to the doctors. Hope you get feeling better soon.

Sorry it has taken me so long to respond. It's been crazy busy here. I will get my test results for the lupus, lyme, RA in 2 weeks. She wanted to rule those out before she game me a definite dx of fibromyalgia. My symptoms have been constant fatigue,chest pain/pressure, sore spots on my body without bruising or injury, stiff joints and hard to move sometimes and feeling like I have the flu. Just ache all over. My cardio said it's not pots and to check with immunology to check for other things. Not sure what it is but I'm sure tired of being sick and tired all the time. Some days I'm ok, most days I can tolerate it and some days I just can't get out of bed. I'm just getting wore out from dealing with the pain all the time. What do you do for your pain/fatigue? Is there any treatment that helps? I've never heard of substance p. What is it?

It runs in our family. My mother has POTS, I have POTS and my daughter has POTS. My daughter also has EDS which has not been in our family before. Clotting issues run in our family, but haven't been documented well until recently. The best way to research it is to do a pedigree on your family and look for traits that have been passed down. Sometimes when we do a medical history at the doctors things are forgotten, but with a pedigree everything is there and sometimes things just fall into the "Well Duh" category. My daughter recently went to see a geneticist and we did a pedigree and I was finally putting things together that I never had before. Nolie

Rachel, For me it has defiantly been the Florinef and Coreg CR. With out these two I don't know what I would do. The florinef, along with high salt and water intake has increased my BP to be in the normal range. I got to stop the midodrine.!!!!YEAH!!!! no more tingling of the head. The only side effect has been hair loss. I had a very, very thick head of hair and now it is thinned out to normal. It just makes it easier to style now and less time to blow dry. But the hair loss is slowing down now. Instead of a hand full every time I shower it's only about 15-20 strands at a time now. The Coreg CR has almost stopped my tachy all together. I don't feel like I'm having a heart attack every time I walk down the hall anymore. I've had no side effects for this at all. I'm looking forward to see all the posts on this subject. It should prove to be interesting. Nolie

Welcome Maggy, I'm glad you found us and like you I read for quite awhile before posting. I've been here for close to a year now and have learned more from this site, as well as all of the wonderful people on it, than I ever did from any of my doctors. There is a great support system here and it is truly the only place you can vent, talk, research or what ever else in total ease knowing that we all understand or have been there ourselves. I hope you find the same support here as I have. I also am married and have 2 teenagers. Life is very hectic with teenagers. My oldest also has POTS along with many other health issues, so it's a double whammy with doctors, appointments and symptoms at my house. I wouldn't be able to manage with 4 kids...LOL I look forward to seeing your posts. Nolie