delphicdragon

Hmmm... Interesting..... I know that I didn't give myself EDS, but that is an interesting concept. I was once told by an acupuncturist that I had pain because I had hurt people in my past and this was karma. She also said that if we hurt people in the past, we will get hurt in this life. I don't like that idea so much. I think we get hurt so that we can learn from the pain. Who knows... I know that her words really affected me and I was not happy with them - I couldn't imagine myself having hurt someone in the past.... Sara

You may have asthma that is induced by the cold. I don't show up as asthmatic on PFTs anymore, but I do have asthma that reacts to the cold and to mold. What you need is a methylcholine challenge test. In this they give you small amounts of the chemical to induce the shortness of breath. It only causes shortness of breath in asthmatics (I think). Ask about that. Sara

I love my birkenstocks! I wear them all summer. Awesome, supportive shoe! (End Rant) Sara

When I was first diagnosed with low aldosterone (aka POTS) I was 140 pounds and rather healthy looking. The doctor put me on a high salt diet and told me to gain up to 150 because that might help the low blood pressure. Ever since I tried to gain weight, I have been losing it. I'm down to 128 now, trying to get up to 130/135. I am nauseous all the time and scared of gastroenterologists because I do not want a tube down my throat or in any other orifice. I was diagnosed with gastroparesis by a "prominent" autonomic specialist as an explanation for the nausea, which has been ongoing for the last 16 years or so. On florinef, I put on 5 pounds almost overnight, specifically in my hands and face. My rings wouldn't come off and I looked bloated. When I called to ask about this side effect, I was told to immediately get off the florinef as the rate at which I was gaining weight was bad for my heart, because it was just water weight. Sara

If you are concerned about it, it might be good to get it ruled out/ ruled in. I've been hypermobile since I was born. I never crawled as a baby, just walked, probably because my knees were all ready shot. If a doctor has all ready mentioned laxity as a possibility, it pays to have it sorted out and worked through. People with EDS need to be treated differently. We need to have our hearts monitored and need different treatment for orthopedic injuries (longer in a cast, for example). There really is no "test" for EDS, just a visit with a competent geneticist. There is a skin biopsy done for the vascular form of the disease; something that I was told to have done before I got pregnant, because having the vascular form puts you at great risk for uterine rupture, but most geneticists can tell pretty quickly what form you have just by looking at you. www.ednf.org is a good place to start. Also you might want to see if she is hypermobile by using the Beighton scale http://www.hypermobility.org/beighton.php. This should get you started. Sara

How strange that this got brought up today. I was going to start a post about how it's so difficult for me to shower and wondering if anyone else had that problem. I took one last night (always at night, I am sick all day if I take one in the morning) and noticed my feet were bright red, bordering on purple. It spread all the way up my legs. When I brought one leg up to shave it all the color drained out of it. Washing my hair was practically impossible and I was dizzy and nauseous throughout the entire thing. This is probably TMI, but I can only manage one or two showers a week because it drains so much out of me. I feel like I'm not taking care of myself, but it is all I can manage. I wash up everyday, but I feel like people will see me as dirty because I just can't shower every day; the whole process effects me so much. This is the one thing I wish I had a solution too so that I could fit in and not feel self conscious. I sometimes think if I could shower during the afternoon, I would be better off, but I'm working, and I'm usually so exhausted from working that showering at night becomes out of the question because I crash so hard. I guess I'm glad to know it's not just me. Sara

Hey Lois- Easy bruising is a sign of EDS, though personally, I don't bruise that easily. I always find bruises when I least expect them though, not realizing what I walked into during the previous day. The bruises I get also seem to take forever to go away after I get them. The POTS is probably worse because of the stress on your body due to the fall. When I've fallen, my POTS gets wicked bad for a couple days, then resolves. Take care of yourself and rest, and the POTS should ease up soon! As for being able to walk on something when it's broken... well, that is possible. My grandma (at 88 no less) walked around for 3 days on a broken hip because she didn't want to go to the hospital. I walked around on a broken foot for four weeks, finally got the X-ray after it was healed, though I did use crutches for the first three days because my foot didn't fit in my sneaker and I needed it to fit into heels later in the week (Oh, collegiate stupidity) Usually, for me, with a broken bone I get localized pain that is very severe - almost nauseating. Sometimes I swell up a lot, sometimes I don't swell at all. I've had both happen and have, at this point, have had 6 fractures. But everyone is different. I would recommend you at least get an X-ray and get checked out. Being able to walk on it doesn't mean you're in the clear. Also, with EDS, you're at risk for a lot of soft tissue injuries. I routinely tear my tendons and have severe bursitis in a lot of my joints from very minor injuries. My ACLs are shot. My shoulder is shot, etc. Good luck and get thee to a doctor! Sara

Suzy- As far as I know, joint pain and joint cracking/ popping isn't part of the POTS picture. As I said, I have Ehlers Danlos, which is a connective tissue disorder. It makes my joints very loose and they dislocate all the time with very little force. I am hypermobile and have been all my life. I've had POTS symptoms all my life as well (used to black out all the time as a kid when I stood up - thought it was normal) When the pain and fatigue started in high school, I knew I needed a diagnosis. It took years to get one as the doctors were chasing horses, not zebras. As much as it stinks to have to go to see another doctor, it might be a good idea to see a geneticist or orthopedist or rheumatologist to try to figure out what is going on with your joints. You might have fibromyalgia or another connective tissue disorder. The Beighton scale is a test that tells how flexible you are. http://www.hypermobility.org/beighton.php I'm a 9/9. www.ednf.org is also a good place to look with more information on Ehlers Danlos. Sara

Sadly this sort of thing happens to us a lot. I think it may be for a few reasons, 1) we don't have an illness that fits into the "norm" and 2) lots of our symptoms overlap into anxiety. When we stand up our bodies release epinephrine, which is the anxiety chemical and sadly a "panic attack" fits most of our symptoms, except for how it's related to orthostatic stress. I will second what has been said here. Go to the doctor with someone- preferably someone male. As much as I hate it, many doctors are egoists who think that all women are "flighty" and prone to panicking. If there is someone male involved, our symptoms are more likely to be taken seriously. Also, when a doctor says that he thinks there is nothing wrong with you, usually he means that HE doesn't know what IS wrong with you. Case in point - I went to a rheumatologist to try to get diagnosed with Ehlers-Danlos/some connective tissue thing because I had finally figured out that my hypermobility and pain wasn't normal. Every joint in my body that could be dislocated by someone pushing on it - was dislocated - BY THE DOCTOR. I tested positive for pain at every pressure point. I was crying in pain, trying to relocate what had been dislocated by force, for the next three days. I was told by the doctor that ALL WOMEN dislocate and have pain and that I was overreacting because no joint could actually dislocate with such little force. Finally, I said give me a recommendation to see a geneticist. I was told there was nothing wrong but got the recommendation anyway. (CLUE HERE) Within 2 minutes of the geneticist looking at me I was diagnosed with Ehlers Danlos Syndrome. (Based on the recommendation of the rheumatologist- would you believe?) Apparently the rheumatologist looked up hypermobility and realized I fit the bill- but that didn't stop the humiliation and PAIN that happened in his office. Ever since then, I bring someone with me when I see a new doctor. Sara Welcome to our club. Hopefully there are some kind doctors out there who don't just give up on us when we don't make sense.

I'm so sorry for your sister's loss. I echo what everyone else says - this shouldn't have been allowed to happen. She should not have gone into labor. My thoughts and prayers are with you all. Sara

I know nothing about mattresses for a hospital bed, but this is what I know about mattresses in general. I find that I need a pillow top mattress that has to be soft. For years I had a very hard mattress that was supposed to be "good" for your back. The moment I switched to a softer mattress, my need for sleep decreased. I think the latex mattresses and the memory foam ones are awful, because they don't help my joints at all and force me to remain in an uncomfortable position for a long period of time because I can't "fidget" my joints back into place during the night. Find a mattress that is comfy for you. If it's the cheap one, get the cheap one. If that means you get a mattress every five years, then get one every five years- but at least you're comfortable. Sara

Hope this helps. There are 1000mg in a Gram. Ten grams seems like a LOT. Start slow, and work up. Sea salt is salt + some minerals. The minerals supposedly give it it's flavor. (Though if there are worms in it I wouldn't eat it.) Some things that help me get in a "shot" of salt if I'm feeling down include Cup A Soup (920mg of sodium) or any sort of fast food. Salt content is also known as sodium content. Lots of packaged foods are very high in sodium. Sara

Congrats on your diagnosis, but so sorry that you had to join our club. Good luck with finding treatments that help your pain as a result of EDS; I have been unlucky thus far as I can't function on opiates. I find that bracing helps immensely on bad days (though my ortho doesn't want me to do it all the time) and I've learned over the years how to pop a stubborn joint back to where it's supposed to be. Seems like we all should be gymnasts who are relegated to the floor exercises. Sara

Very strange, taking the D version of Claritin was hellish for me. I was so "high" I couldn't even figure out how to spell my own name. I always thought I just had a strange reaction to it, maybe it was a POTS thing. Sara

Yep, this is a huge problem for me. You need to look for a TV that has a higher refresh rate than most. What you're noticing is the pixels that a quickly changing from one color to another to keep up with the action. When I had a CRT monitor for my computer, I had to keep the monitor set at 75+ hertz, because the normal 60 gave me such a headache, and made me so nauseous. The current LCD display isn't as bad. When shopping for a TV, stand in front of one for a while to see if you get the effect. If you do, try another TV. (I'm not looking forward to buying a new one when the current one I have blows) Sara

Very interesting. I have always had trouble holding my arms up above my head. Even in school if I wanted to raise my hand, I had to hold one hand up with the other hand just to get my questioned answered. When I raise my arms over my head, the blood drains out of them and I get very very dizzy and lightheaded, even if they are just up there for a minute or two. Washing my hair is a killer. I never mentioned this to any doctor. I thought it was normal. Sadly, I think it is for us POTS patients. Sara

Get well soon! Let's hope everything gets figured out this time. Sara

Had a 24 hour Holter when a "very dumb" cardiologist thought that I had Innapropriate Sinus Tachycardia (for all I know, I do). The highest my heart rate got was 140 during the test. I mentioned to him that the day I was tested, I woke up with a horrible cold and laid in bed the entire day, and he said that the 140 was "normal." C'est la vie. Granted this is the same cardio who did a stress test on me, which I failed , according to him, and then who told me that I needed to exercise more so that my heart rate wouldn't hit 200 within the first 2 mins of the test and so I wouldn't get chest pain. My BP was not checked during the entirety of the test even when I complained of severe chest pain. Fun times! I should probably get another one done now just to see what's going on. I think it has to do with who you get to read the results of the test Sara

Have you had your potassium and magnesium levels checked? Sometimes low potassium can cause the pain your describe as well as the heart rate symptoms. Last time I was in a POTS crash my potassium was through the floor and I needed IV potassium to get my heart rate to stop dipping then surging. Sara

CMA- Are you referring to something similar to this? When I am home my normal resting heartrate is about 85 (sitting). When I stand up my heart rate goes to 120ish. When I am at the doctors my resting heartrate is about 120 (sitting). When I stand up my heart rate goes to 150ish. I don't like the doctor, can you tell? Are you worried that if your resting heartrate at the doctors is 120, you won't have as dramatic of a jump when you are stood up during a tilt table test? If so, yes, it's understandable that the heart rate doesn't jump as much. My heart rate still met the criteria for POTS during my tilt, even though it started at 120. Try to relax (very hard, I know). Sara

I know personally that if I don't get my 8-9 hours of sleep a night, I am going to be in for a very shaky, awful day. Everything is worse if I don't get enough sleep. Feels like I just bathed in adrenaline, I'm irritable, nauseous, physically shaking, can't tolerate cool temperatures, etc. I think our bodies have to reset at night, and if we don't give them a chance to do it, things get horrible. The few times I've stayed up all night (friend in hospital) it took me almost a week to recover, even though I did get some sleep after being up 27 hours. We just have to be really careful with our sleep schedule, if possible. Sara

Adding my two cents in here. I had very severe depression for years and it was gone within 3 hours of my first chiro adjustment. It was my Atlas and Axis that were out of alignment, almost an inch off. Whenever I feel the irritability/ depression coming back, I go to the chiro and it goes away, usually immediately or within the hour. Takes me about 2 days to get back to my norm. As for POTS, chiro did nothing for it, but I can better deal with it now. I think Chiro didn't work because it's an Ehlers Danlos issue that causes my POTS and no amount of adjustments can make up for faulty collagen. Sara

Well I checked in with him tonight. Even though his stomach still hurts he says he's still able to eat, but making sure it's bland, easy to digest foods. He's nauseous, but it appears to stay down *knock on wood* His main symptom is exhaustion. Sleeps for 2 hours, is awake for an hour, sleeps for two more- etc. He says he's cold and not sure if he has a fever. This doesn't fit for a gastro illness, as far as I can tell. Had noro and there wasn't bone crushing fatigue associated. Nor does it fit for the flu as their are no respiratory symptoms attached. What do you guys think? What does this mean for me? I'm dosing up on Echinecea and Zinc as well as drinking plenty of water. I'm so nervous though, that I don't want to eat. Sara

I was with a date last night who appeared pale and was complaining of a toothache. Seeing no problem with this, I kissed him (a lot). Today he says he feels nauseous and his stomach hurts. He was just tired last night (and has been for a few days), so I don't know what is going on! He's been sleeping most of the afternoon, but his stomach still hurts. He went to the dentist who said it was just gum inflammation, so that shouldn't be causing systemic symptoms. I guess I stupidly exposed myself to the stomach flu. I hate Winter so much. I don't know what I should do. Should I call my doctor, get a hospitalization set up if I get sick? I hate vomiting and do everything possible not to and freak out when I do to the point that I get almost suicidal. Help! I read that until the person is vomiting / had diarrhea, they aren't contagious. I hope this is correct. What can I do? Sara

Radha- Are you right handed or left handed? I'm an EDSer who is Right handed, and everything on my right is, in general, much worse than on my left. I believe this is because if I fall, I use my right hand to catch myself and end up dislocating / subluxing something. Yes, I have left sided symptoms, but all of my bursitises (bursitii) are on my right side. If I'm going to dislocate and it's going to hurt a lot for a long period of time, it's my right side. If I'm going to dislocate or break and I will be incapacitated for a little while, the likelihood is that it's my left side. Strange, huh? I think it has to do with muscles being strengthened differently on different sides of the body. Sara