delphicdragon

I have these too. Not all of my joints have it, but I have very dark skin on my big toe joint (right foot only), left ankle, right and left foot, back of neck and elbows. Thought it was Addison's at first too, and got that checked out- twice. Both times the serum cortisol is on the low side (8 in the morning- I forget the units) but when stimulated, it responds beautifully. (I SO want some ACTH for when I'm feeling symptomatic - it gets rid of all my symptoms). I wonder if we have an ACTH issue, not a cortisol issue. Then again, my aldosterone is also through the floor, (that's how I got put on Florinef in the first place). I have asked about Addison's but have been told that until my cortisol doesn't respond to ACTH, I'm still normal. C'est la vie. Sara

LOVE THAT WEBSITE!! It is helpful when it comes to finding research papers - even to someone at the PhD level. Another tool you can use is http://highwire.stanford.edu. This also tells you if the articles are free for you to view (Many are not :-() One thing to note, make sure it's highwire.STANFORD.edu. I, in a fog, knew it was highwire, and not much else. Highwire.com is a porn site (or at least it was 2 years ago, and I'm not going back to check it) Sara

Always do this first thing in the morning- orally with a Basal Body Thermometer. I guess I'll do this for another cycle and if there's still no change go bother my OB/GYN. Don't really want to bother her though because if I'm not ovulating, there's really no need to change that now - and doctor's love to change things if they're not "normal". One other thing - If I normalize my BBTs to one specific time (+/- 0.1 for every half hour early or late) there is no change whatsoever - it's at 97.6 at 7:15AM. Strangeness. Sara

This isn't true. Where I work you have to be reassigned if you can't do the work you were hired for, at the same pay scale. At least that's how it works in CT. Most of our per diem nurses actually get work everyday, some more hours than the salaried staff as they get paid a higher hourly rate. The link is for the ADA's document on reasonable accommodations. Unless they deem your illness something that would put the life of other people at risk, they are required to accommodate you. If they feel that this per diem job IS a reasonable accommodation - I would get a lawyer - ASAP. http://www.eeoc.gov/policy/docs/accommodation.html Sara

YES! That's exactly how I've described the chest pain. I sort of see my heart as a water balloon. If it's completely full of water then it's really easy to squeeze and manipulate (that's the heart with enough blood in it). If the water balloon is half full of water, half full of air and you try to squeeze it, it's very difficult to squeeze and the air tries to displace the water and vice versa. (NOT saying there is air in your heart) So I fully blame the "angina" on too little blood, either due to my heart beating too fast or not getting enough blood in there in the first place. Sara

Okay- Not sure how many on this board will have any idea what I'm talking about, but here I go... I'm trying to chart my fertility because I'm paranoid about getting pregnant and I can't go on Birth Control (tried a whole bunch and got a plethora of adverse reactions - also having a clotting disorder is NOT a good idea with the pill). We use protection anyway, but I want to be doubly or triply sure. Apparently your BBT is supposed to follow a bicyclic cycle, with low temps on the first part of your period and higher temps after you ovulate (.5 of a degree change). Mine doesn't change. I have regular periods and PMS and such, so I'm pretty sure everything is working as it should. Wondering if anyone has ever tried charting their basal body temp and found it was weird or off or something. I think the POTS might be affecting my temperatures (if the autonomic nervous system controls temp and ours is off, would the temps be off as well???) Does that make sense? Has happened to anyone else? Sara

I hate hospitals. (But I work at one...) There's only one problem with this, if you call your doctor and tell them what's up, they call the ER. And if you don't show up there, the doctor or the nurse walks down the hill and takes you to the ER to get checked out. It's a double edged sword when the ER docs are your colleagues. Problem is last time I was "forced" to go the ER (had an episode at work and apparently looked AWFUL) there was stuff wrong. I had a high D-Dimer (clotting factor measurement), low potassium, sodium, and phosphate. Had to have a CT scan to rule out a blood clot. And of course the doctor brought in ALL of the med students (who I see at work every day!! GAH!!! to watch my heart rate jump from 115 to 160 when I stood up.) What I'm saying is, it's better safe then sorry. We know our bodies better than any doctor ever could. Case in Point: I have a nasty habit of breaking bones (grumble collagen disorder grumble) and the breaks don't show up on X-ray for three days. I know I'm broken but the doctors can't see it. So they splint it and give me happy meds and I go see my Ortho in 3 days and he tells me it's broken and I need to stay in the splint for 8 weeks, not three. If you are concerned, GO! Yes, it stinks to be treated like a mental case (gotten that one too after I walked in with a dislocated hip that DID show up on X-ray). ER's are only good for acute stuff. Chronic stuff can't be controlled in the ER unless it's an acute exacerbation (there I go talking like a doctor again), but it's better to know you're not having a heart attack or a whatever, just for the piece of mind. Sara

Congrats! There's no way I could be up from 8 to 4 everyday, much less doing active type things. That's great for you. Hope the rehab helps a ton!! Sara

I have trouble in the mornings. I'm a royal pain to wake up and if I am forced to wake up early, I will crash around 2PM or 3PM - BAD. But, I am functional between 11PM and about 5AM. It's very strange. Worked in college for a while when I was doing set painting after my afternoon classes. Worked until about 3AM (with the help of a large pizza), then slept until noon, got up, went to class and started the cycle again. It helped so many of my symptoms. I even trusted myself on a ladder. I write fiction (in my spare time) and I find that I am most creative around 10PM and I can work until 3 or 4 in the morning without a problem (very few POTS symptoms). The next morning hurts though, especially if I have to be up for work, but if I can sleep in, I'm much better the next day. Firewatcher, I need to check into this DSPS. I have Asthma and a heart murmur, so I'm wondering if that's part of my problem. Had a sleep study done a while back but couldn't fall asleep (at all). They sent me home at 4am AND told the doctor I had a normal reading!!! I will sometimes crash after supper, around 7, but only if I eat a really large meal and try to be active right after. I need to give my body a rest after I eat or my digestive system will rebel, big time. Sara

Gotta be careful with the medical terminology though. I told a doctor I was experiencing "near syncope and appeared to be dropping my pulse pressure" and he looked at me like I had grown two heads. Then told me that I was obviously just a hypochondriac who needed to get out more and not focus on my "medical" problems. I told him that I'm in the scientific field and that phrase fit what was happening to me. He said that I shouldn't diagnose myself and that he was the expert. Needless to say, I didn't go back, and have learned to explain what I'm feeling to new doctors (especially those in the ER, who seem to be prone to the "she's mental" conclusion) in non-scientific terms. Also having an illness that sounds like an illicit drug does NOT help. I've told so many nurses in the ER that I have POTS and gotten the response, "Well how many joints did you smoke?" Usually that leads to me misunderstanding and saying, "My joints hurt..."(Never a good cycle to get into) Most apologize AFTER they've run a drug screen. The doctors that know me, know how I describe things and most are happy that I speak on their level. I find I use less medical terminology when I'm sick with something not chronic. Seriously wanting an honorary doctorate for all the research I've done on POTS (and Ehlers-Danlos) but the profs in grad school are making me actually do the work. Sara

Generally during an episode I lay down in a semi-quiet room and sip on water. I found that Rescue Remedy (an herbal supplement) seems to help (sometimes). It's more alcohol than herbs and I think the alcohol (even though it's just a few drops) calms my nervous system down as it is a depressant. I find that reading keeps me from panicking, especially if it's a crappy chick novel or a comedy book. TMI ALERT!!! Sometimes spending "time" with the boy also helps. I think the oxytocin release short-circuits the adrenaline response. And he sure as heck doesn't complain. Sara

You can definitely have EDS without the stretchy, stretchy skin. I do! I have the hypermobile type of the disease. I'm not blond or pale or have blue eyes (except the sclera; that's the white part). Basically if you have the cigarette paper scaring and dislocate, I would say that you have EDS. Have you tested yourself on the Beighton Scale? http://www.hypermobility.org/beighton.php. I score a 9/9. I would agree that you need to find a doctor well versed in this disease. Ortho said for years that I didn't have it because I didn't have the stretchy skin, then I gave him a paper on the hypermobile type and he completely changed his tune. Now he likes to say he diagnosed me because he said I was hypermobile long before the geneticist did. I saw a rhematologist who dislocated EVERY joint and then told me that all women did that . I insisted on the referral to a geneticist and she is the one who official diagnosed me. (Make sure you make the doctors think they are diagnosing you even if you know what the final answer probably is... ie mention your hips and ankles and stuff, "normal" people don't dislocate without a LOT of force involved.) http://www.ednf.org is a great place to start to get more info. PM me if you want to talk about EDS or see some pics of hypermobile EDS. It stinks to have it, but at least gives you an idea of what is wrong and whether you need to take certain precautions. (Getting an Echo regularly, for example). Sara

Hi Everyone- I've noticed that lately I seem to have very extreme emotional reactions to stuff. Little things get me WAY more than they should have and I feel like I am out of control much more often. I HATE this sort of thing. Just wondering if you feel more on edge and "snappy" after the POTS hit or if this is just me and I need to figure out how to fix it. Sara

Wow, I run a lot faster than most of you. Usually my heart rate is up around 80-100. One doctor told me I had inappropriate sinus tachycardia after a 24 hour holter showed sustained rates in the 140s (this is while I was sick in bed with a fever....). Most other doctors haven't commented. I'm not really sure why your cardiologist would want your heart-rate so low unless there was something else going on. Always thought that normal was between 60 and 100. I asked about that at work, and got the same answer. Average is around 75. Slower when sleeping obviously and supine, and faster when up and working or when sick or dehydrated. Athletes have much lower heart rates, but I doubt anyone on the board is that caliber of athlete, especially with active POTS. (Maybe I'm wrong and we do have some marathon runners here... ) Sara

Joe B. - I was subbing while I worked on my Master's Degree. The school was an online program or in the evenings. Don't know when you last subbed, but I did that just last year, and those kids are nuts! (This coming from a 24 year old) I can't remember being that bad as a student. Problem with my POTS is that stress triggers it and if I had a rowdy class I was in trouble and when the POTS kicked in there was no energy to deal with the troublemakers. (And believe me, the principals don't want to help) Just a heads up. I work at a college campus getting my PhD. I have talked extensively with disability services, as I declared the Ehlers-Danlos and POTS during the employment interviews. I work about 4 hours a day, in two hour blocks. That's all my body can do. My hours are flexible enough that three days a week, I come in when I want. (Yes, cushy, I know). I also plan out my day so that I only go into work to set up the experiments and collect data. Any analysis is done at home, in a recliner. Sara

Ditto. Get the same thing. Was tested for diabetes a while back when I thought what was happening was due to low blood sugar. Sure enough, the blood sugar drops to 60 about an hour after ingestion of the sugar solution. But I was told this was normal in "healthy young women". Ok, sure. Tested the blood sugar for a while, and it seems to be low after eating, so I do what everyone else does, eat small meals and eat often. Though, I can and DO cheat. As long as it's a balanced meal, I'm fine (knock wood). If I eat too much then I get shaky and have diarrhea and am generally uncomfortable. Lasts about an hour or two. My BP will be high then (160/100+) and I just have to wait it out. Such fun what our bodies do to us. One other thing, I never eat dessert until about an hour after the meal. It keeps my blood sugars more normal, I think. I also don't drink soda often (max 1/2 can once a week) . Sara

Is that a Bengal? She's beautiful!!

Feel better soon!!!

Sending prayers, hugs and best wishes your way. You'll get through this! You'll beat this! And we'll all be here for you every step of the way. Sara

Hey Everyone- I've been getting better for a while (knock on wood), with the occasional setbacks. But currently I'm feeling a bit down and out of it. (99% sure it's my hormones.. grr...) I noticed I'm wicked clumsy. I tripped over myself and fell down the stairs two days ago, dislocating my shoulder. YEAH, Ehlers-Danlos! So I'm in a sling, waiting for a week to see if the pain goes away or if I tore the rotator cuff too. Therefore, because of the pain, I'm not sleeping too well, which just makes the clumsiness worse. Anyone else wicked clumsy, especially around "that time"? I also had another strange symptom where I woke up and rolled over (didn't even get up to turn off the alarm yet) and my heart was POUNDING! Everything felt like it was shaking and I had to lay in bed for a half-hour before I could feel confident in myself to move without triggering something. Thank God my alarm turns itself off in 1 min. Anyone get that weird feeling too upon just rolling over? Also, I tried to play my French Horn tonight, specifically to annoy my mother (LOL) and found that THAT triggered a POTS episode! So now I'm sitting in bed watching TV. Any instrumentalists out there that now find they can't play? (I haven't tried to play for almost 6 months, since I had my last episode, but I didn't think that the instrument would be a trigger) Thanks everyone. Hope the heat isn't getting to everyone and you're all cool and comfy in your A/C. Sara

I have severe asthma and I too can't take Albuterol. (Actually had a Doctor tell me that because I couldn't tolerate Albuterol I obviously didn't have asthma, after he diagnosed me a week earlier as textbook ) I take a Maxair inhaler and Xopenex as a nebulizer, though it now comes as an inhaler. Xopenex is a form of Albuterol but is much more easily tolerated and doesn't make the heart race as much. It's awesome compared to albuterol. Yes, the heart races but I got up to 180 bpm with Albuterol, Xopenex keeps me under 140. Hope that helps. Sara

I was told NOT to take Florinef if such a small dose causes swelling. One needs at a bare minimum .5mg to have an effect (many people need more). When I told my Endo that 1/4 pill was causing swelling he told me to get off the drug immediately as it was probably putting a lot of strain on my heart if I was swelling like that. I'm not trying to alarm you but please contact your doctor. Sara

The shaking and shivering is definitely related to POTS! I get this when I get symptomatic, shaking like I'm freezing and feeling wicked cold. I have other symptoms with it too, most notably nausea. It lasts about an hour or two and then I'm fine for a while (unless it's a really bad attack). I always called them panic attacks, but it was SO weird as I wasn't panicky about anything, my mind felt more numb and drugged than anything else. All I wanted to do was sleep. Though I'm not a doctor, I would say these are probably POTS episodes and NOT panic attacks (Just don't call them panic attacks in front of a real doctor - you'll never hear the end of it). Sara

Hi Willows- Not sure if you've been diagnosed with Ehlers-Danlos or not. I have something called Recurrent Corneal Abrasion Syndrome which is due to the collagen disorder. Basically when I open my eyes in the morning, my cornea is stuck to my eyelid and the act of opening my eye causes it to tear. I get symptoms very similar to what you describe. It hurts like all ****, my eye is red and teary and I can't see properly. I swear the pain of the abrasion is WORSE than my dislocations and it happens about every month or so. Sound familiar? Glad your son and you are both doing better. Sara

This is also one of my triggers. If I'm really symptomatic I can't even stretch. I used to get dizzy in school raising my hand to ask a question. I tried taking my BP once while doing this and it went from 100/60 to 70/40! I don't think it's panic RichardinAZ, I think it's the POTS. Can you do the exercises lying down? Sara