erickamcc0523

There is some iron I was on a few years ago. I can't remember the name of it, but it was an enterically coated iron supplement, and I had a much better time tolerating those than I did regular ferrious sulfate tablets. I think that it took a bit longer than if I had regular iron supplements to correct my iron... but in any case, it was more tolerable, and eventually my iron levels went back to normal.

I do this quite a bit. It's almost like I'm so tired when everything is getting ready to crash that I don't even have the energy to focus, either with my vision or my cognitive processes. It feels like the muscles around my eyes are extremely weak and can't physically contract them to focus. I'm dealing with this right now, as it's taken me almost 30 minutes to write those first 3 sentences. UGH... it's so frustrating!

Oh ouch!! I hope you heal up very, very soon! I know that it's no fun having so many injuries going on at the same time, and it sounds like you have the start of a good exoskeleton going on... Again, get well soon, and I'll send some prayers your way to help speed that along.

Possibly... this may be in the TMI category, but sometimes when I have to use an enema, the first movements are rock hard and hurts like HECK coming out. I suspect that I have diarrhea, but there is a blockage that prevents everything from moving, so I have to give things a little help to move.

Enemas are pretty much the only answer for me. Things like ducolax and other chemical laxatives will work too much for me, and I'm as bad as when I had the stomach virus. Stool softeners, fiber supplements, and miralax don't really work for me at all. Enemas will cause everything to be too much for a few hours, but for a few days afterwards, it is fairly regular. Every so often I have to use one (every other week or so) as I get really blocked up and am literally full of s**t. Post stomach viruses is the worse as far as becoming stopped up. For you, the ducolax might work just fine, as we all have different responses to different medicines. I just know for me, it is HORRIBLE...

I'm sorry that you're suffering so still. That's great that you are on your way to Vandy (many prayers that a bed will open up very soon), and that you have a great neurologist who is able to and humble enough to admit that he needs help with you. And it definitely sounds like you are doing all that you can for your kids, and I am sure that they know and appreciate that. It sounds like you, unfortunately, are surround by a couple of tools. I'm sorry that's the case, but I can imagine that they are pretty frightened and sad by this, but I do see that your ex has any excuse to not step in and try to help out some. And with your mother... perhaps we're long lost sisters, because that sounds like my mom. You're such a wonderful person that I wouldn't mind being your long lost sister. I know you wouldn't be making this up at all... Who in their right mind would? Granted I've only been a psychology major, I have studied for quite awhile and you definitely are in your right mind! Self affirmations seem silly at first, but they have worked wonderfully for me, and allowed me to keep seeing other doctors for answers after previous ones kept trying to pawn my symptoms off on stress or "you're just crazy... quit worrying and you'll get better!" I had to keep telling myself that "I'm not crazy. I know my body better than these doctors, and I will find an answer!" Please know that you and your family, and your doctors (that they are able to quickly find out what's wrong with you) are in my prayers!!

I have such a time with my periods. They used to be exactly 32 days apart, and the first 3 days were fairly heavy (I would go through a regular tampon every 4 hours) and the last two were pretty light. Now, they are no more than 28 days apart, and the first 3 days are VERY heavy (like a super tampon every 2 hours, and sometimes I'll wear a liner to catch any leaks) with a lot of clotting. I also have a heck of a time with PMS. Used to, I would NEVER have any PMS symptoms (except maybe a small skin break out), but now, I can barely move between the pain (such horrible cramping!!!) and the exhaustion. I suspect that I might have some hormone issues, with both the wacky periods, and now I'm almost constantly having some skin issues (why, oh why couldn't I have had the acne when I was a teenager???), and now I have grown a small mustache. All hormone tests I've had have been normal, and although I do have a recurring ovarian cyst, it is very small. Also my POTS symptoms get so much worse when I'm PMSing. I am going to be in the process of learning about Natural Family Planning (basically charting exactly where I am in my cycle and how to get a basic idea of how my hormone levels are based upon body temperatures and other bodily signs), so I could maybe see exactly where in my cycle everything is going haywire and then maybe I could get specific testing done on specific days to check hormone levels, and then hopefully can get some specific treatments based upon those results.

There was about a 3 week period where I could not eat... I had NO appetite, and in fact I was so nauseous that just the though of food would make me about hurl. I didn't do the Ensure route.. but I had tonnes of ice cream and yogurt as that was the only thing that didn't make my stomach churn to think of.

Yes, mine too! Sometimes my fingernail will also turn blue, and my face will become very pale. There have also been times that I've become nauseous at the same time so I'll have blue lips, and green cheeks... very interesting combination!

I think that I've always had POTS (just didn't know what it was at the time), but it was fairly mild (a few cases of presyncope a month, always tired, and had mild orthostatic tachycardia)... until I had my first knee surgery, and everything got much worse. I was much more tired all of the time, and had increasing periods of tachycardia and presyncope, but I didn't know that it was related to the surgery, so I went ahead and had my other knee operated on this past November, and well, it's been **** since then. There have been some days that if I get out of bed, it's a major miracle! I know the surgeries and the general anesthesia didn't cause the POTS, but I am sure that it made everything that much worse. I still am not completely back to where I was before the surgeries, but slowly and day after day it seems to get somewhat better, although I have had a few relapses since then.

I broke down an hour ago and did an enema, and I am feeling much better!!! I still feel somewhat stopped up, but no where NEAR how I was. The first of the BM was really, REALLY hard, and since then, it's been extremely soft with a lot of mucus. In any case, I feel much better.

I'm glad that I'm not the only one! And I'm kicking myself for waiting so long for posting this thread. I should have known you all would be great with this question!

Not having a gallbladder will cause some constipation. Of course, since I don't have one, and I know I can't digest fat or sugar, I just eat that and it causes me to go! I have been eating a lot of ice cream and yoghurt lately to try to get things moving, but still... UGH! I'm half-way hoping to get a stomach virus soon! I'm nauseous most of the time anyway, so I wouldn't mind the nausea and vomiting so much... I just hope that I would get the diarrhoea to clear everything out. I am the only person I know that is happy to get a virus.

I don't have a gallbladder, and my thyroid levels were checked last month.

As I'm typing this, I'm having some pretty annoying stomach pains (like another poster mentioned, it is sort of like contractions, and they come and go), and I haven't had a BM in 3 days... and my last BM looked like rabbit poop (you know, round, small, and really hard), and I was somewhat scared that I was going to give myself an aneurysm with how hard I was pushing. I think a lot of my problems twofold. First, I do drink tons of water and Gatorade for the POTS, but it feels like it's going straight to my kidneys, so I pee all of the time. Secondly, I think that my muscles in my stomach and colon don't contract like they should since my whole autonomic system is really messed up. I have a feeling most people here will understand when I say that I'm somewhat glad when I get a bad stomach virus and can't stop going... yes I feel miserable for a few days, but for the few weeks afterwards, I actually feel better, as at least I got some stuff cleaned out. I do joke to a few friends that I am literally full of crap. Everything lately has been especially bad. I've gained about 20 pound, and except for my medium and high rise jeans, everything else is fitting almost the same. I now, though, have a pretty big gut, and I absolutely HATE it. Oh well.

Welcome to the boards! I am also 23, about to be 24 in May. I'm sorry you have had such difficulty in being diagnosed, and that you have had to deal with incompetent doctors. Many of us here have dealt with at least one of them. Like you, I was told that all of my stomach pain and nausea was due to stress... basically they were trying to say that I was crazy and I should leave them alone. But I persisted in seeing different doctors, and eventually my gallbladder was taken out. While I still have some stomach pain and nausea, it is much lessened now. I was put in the hospital a few times and was put on IV morphine and phenergan, and that hardly helped. By any chance, has your gallbladder been checked out? It wouldn't hurt. I've noticed that a fairly high percentage of us here have had gallbladder issues. I'm not sure of a connection between the POTS and gallbladder disease, but I do believe that it is more than just coincidence that so many of us here have gallbladder problems. I also have trouble with fatigue, and well, I'm barely awake right now. I'm always barely awake. For me, some caffeine helps (perhaps a cup or so a day, but no more, as it start making me more symptomatic), not only with the fatigue, but with the rest of the POTS symptoms, especially with the blood pooling in my legs when I stand up. I suspect it does since it works as a vasoconstricter, and that helps the blood push back up towards my heart easier. However, it isn't a complete fix. I have joint hypermobility syndrome (it's probably Ehlers-Danlos syndrome... I've just not been officially diagnosed yet) and a collagen deficiency, which makes my blood vessels really lax. Also, I eat small and frequent meals, for two reasons. The first is that after one eats, blood has to flow to the stomach to help with digestion, leaving less blood for the rest of the body to use. Also, the POTS affects the contractions in my esophagus and intestines (it's an autonomic function, too... my whole autonomic system is whacked out, apparently), and everything tends to just sit there, later causing heartburn and other stomach issues. I am on a beta blocker, which does help some with the presyncope and it does keep my heart rate down somewhat (for the most part anyway), but it has increased my fatigue. I'm with you, I wish there was more to help with the fatigue. Also, if you get tired of drinking Gatoraid, you could maybe use electrolyte tablets. The ones I have reminds me of the Airborne immune tablets; both fizz and have a citrus flavor. When I'm starting to feel really weak, I pop a few of them and drink at least 16 oz of water right then, and it'll pep me up pretty quickly. I can't remember the brand I use, but I know others use Nuun electrolyte tablets. Also, sometimes I'll use runner's gel, which is a 1-2 oz packet of this electrolyte gel with some carbs in them. I don't know about you, but I don't like drinking Gatoraid all of the time, and I'm glad there are other options of things that work. I just wanted to pass them along. Anyways, I'm both glad and sorry (that you're sick enough to seek support and help) that you're here. In any case, welcome to the family! Ericka

I almost didn't want to post this, and actually I have held off for a few weeks, since the fact that I take a shower at most is every other day makes me feel like a lazy bum... Anyways, like I said, I shower at most every other day, and there have been times that, especially if I'm extra symptomatic or if I've been having a lot of pain from dislocating and subluxing joints, it's been a week in between showers. I do "scuzz off" (as my mom says)... ie, I'll do a sponge bath, in between, but it is so frustrating, and somewhat depressing, that I can't take them every day... I used to sometimes take one twice a day (I WAS in marching band at the time). So... how frequently does everyone here shower?

Congratulations!!!!!!

Would it be Reglan, bizbiz? I am eating radioactive eggs on Tuesday (they're doing a gastric emptying study), and my GI mentioned that if I did have issues with that, she might put me on Reglan.

Janey, I understand your dilemma! I haven't yet been diagnosed with EDS, but I am sure I will be once I see Dr. Francomano. In any case, I have similar issues. I have been eating a lot of yogurt and mashed potatoes lately, and it seems to be helping some of the symptoms. I've noticed the easier it is to digest something (such as apple sauce v. and apple), the easier it is on my gastric system.

I'm 5'6", and I'm 180... but I don't LOOK that overweight. In asking a few close friends how much I look like I weight (since I honestly don't know), I have been told that on average I look somewhere between 130-140, and the highest number is no more than 145 (although I think that number changed depending on how bloated I was). I think that I retain a massive amount of water (and always have) and that I'm full of ****, literally. I am around the same size (except my stomach... it's become much more distended) I was before the IBS-C became so bad, but I have gained, at least on the scales, around 15-20 pounds. Hip-huggers still fit the same, but I've had to go up in size when it comes to medium-rise pants.

Oh Ami, I can't really imagine your pain right now. I will be praying for your quick and complete recovery from these wounds. Once, I had 2nd and 3rd degree burns down my back and arm from a hot cup of coffee fresh from the percolator (so it was right at the boiling point... I was seven years old, and I bumped into the same arm my mom was holding her cup of coffee with and she couldn't hold on to it)... The only comfort I can give is that so many years later I don't remember the pain. Within a few months actually (after it healed up), I had forgotten the pain. I know it hurt, but I can't remember how much. I hope that sooner, rather than later, this will be the case for you.

Sorry I haven't posted to this thread earlier, but I have been praying for you behind the scenes. I am so glad that you are doing well in spite of the circumstances, and I'll pray that your recovery will be quick and painless. I'm also very happy that you had such an awesome medical staff to care for you. Anyways, get well soon!

Actually, I can pretty much only lie on my right side now... Unless I am propped up (or in a recliner), lying on my back is horrible, as I feel like I can't breathe. My right hip and knee haven't been too happy about the changes in the sleeping arrangements.

I don't get chest pains, though, when I lie on my right side. This is frustrating since I've almost always slept on my left side. Nothing I've done (except roll over to my right side) has helped with this. Anyone else get this?