potsgirl

I used to give blood, too, but can't do it anymore. My BP drops too much, and actually, I also don't weigh enough. I can't seem to keep weight on, and that's being pretty inactive. It's frustrating. I would like to be able to give again.

So sorry you're suffering through this....I've had chronic constipation for many years, and a doctor in the ER told me to try 'Senna' tablets. That's generic for 'Senobkot', much cheaper, and you can find the generic at Target or Wal-Mart. I take two in the morning and two at night and am able to go every day, easily. It's terrific. I've been relying on them for about 4 years now, and my gastro and other doctors tell me it's safe to stay on it. I do need to do a colonoscopy soon, too, but I can't seem to drink the gallon of fluid that's necessary! Good luck, and let us know what works.

Sue, While nmorgen is on the right track, I believe that porphyria is usually considered a hereditary disease caused by too much heme in the blood, and the condition is also associated with the central nervous system. There's a good video on the internet showing someone's experiment hanging their son's urine in the sun, and tracking the color changes throughout the day. Normally, the color change is to a port wine/reddish to a brownish/tea-like color. Look up "porphyria" for the disease, and "urine color" on Google to get some good information from Mayo and other sources. It also explains blue/green urine colors. I think you should still get this checked out, but if you're like me, the more information I have, the better I feel. Good luck, and let us know what you find out! Jana

I have to have CT scans because I have a pacemaker and can't do MRIs. I probably have 3 or so a year, and my doctor doesn't want me to do many more a year, but doesn't seem too concerned about that frequency. It probably also depends on the individual. Ask your doctor. Cheers, Jana

Yes, it actually is not abnormal to get different readings in each arm. No need to be alarmed, but you can always run it by your doctor to feel better if it's bothering you. I had a Mayo Clinic doc tell me that, and I've known others who have had the same types of readings. Cheers, Jana

YAY for you! Keep us informed of how you're doing and if you do end of going back to work. cheers, jana

Usually it's caused by food or medication. There is a rare disorder that can cause it too, where your calcium levels get too high. Unless you keep having signs of it, I don't think I'd worry too much. A lot of things can color your urine. Cheers, Jana

Reen~ Thanks for the reply. No, it hasn't gone away. It's just been getting steadily worse, and any movement at all (like typing) is extremely painful. I can hardly stand it. Do you think I should try Glucomasine (sp?) first? I do have a name of a good rheumy, so I'll call there, too. What's yours like? Cheers, J

I've seen Dr. Goodman in Scottsdale (I live in Tucson) and then followed him to Rochester when he went there about 1 1/2 years ago. He's a neurologist with a subspecialty in autonomic disorders, including POTS. He's very kind and caring, and even when I've called him up to a year later in Rochester, he returned my calls promptly. He's at the Mayo Clinic in Scottsdale. Since he just moved back, he should be pretty easy to get in to see, especially if you have a referral from your doctor. I don't know if he's started yet, but if not, it should be soon. I'll be going back to see him now. The good thing about Mayo Clinic is that when you're there, you can be referred to other departments/doctors in a short time...Like I was referred to a cardiologist and scheduled for several tests after our initial consult. Some tests were scheduled before I saw Dr. Goodman. They know you're usually travelling, so they try to get you in within the week or so for all of your tests/appointments. I think we had 7 days worth of testing done, with one 'down' day. You can also go to the department and try to get in earlier, if there's a cancellation or they can work you in that day. I know some people have had negative experiences there, but I've only had positive ones, and the staff is very friendly and accommodating. If you need further info/help, PM me. Cheers, Jana

I personally now stay out of the sun as much as possible, and use a self-tanner on my legs and arms. Jergens is pretty good, and not too expensive. I can't handle the heat!

I'm also chronically constipated, and the only thing that seems to help me is Senna. If I take 2 in the am and 2 in the pm, I'll usually go every day. I've been on them for about 4 years, and have tried everything. This is the only thing that has ever worked, and my gastro doc and other docs think it's okay for me to take them. I know I should get a colonoscopy to see what's going on, but just can't get the gallon of liquid down!

I loved the list, but must add one caveat....the first time I see a doctor, or one I've already seen, it seems that they have NO idea about my history at all! I don't think most of my docs take the time to really read my history, and therefore, and appointment becomes more confusing, with the doctor only having "x" amount of time to spend per patient. I wish they would take the time to read my charts!

I'm so glad you brought this up. In the past month or so, I've been having pain in the middle knuckles of my hand - the right one especially. In the last two weeks, it's become almost unbearable and I can hardly pick up a coffee mug and any sideways motions involving those muscles sends shooting pains through them. Anyone else? I guess I need to see a rheumatologist...The knuckles of my right hand are swollen and the middle knuckle on my little finger is all red and bumpy. Anyone? Help? Cheers, Jana Oh, sorry....what's the ANA test?

Did they have any reason why he's returning to Scottsdale? I must say I'm happy to have him back in AZ.

I've got to agree with Dana and Sugartwin. I used to exercise fairly intensively, 5 days a week. 45 minutes on an ellipitical and then some weights was no big deal. Now, I'm lucky to exercise 3-4 days a week, and at a much lower level than I used to, and weights are really difficult. I almost pass out trying to do too much exercising, and have been told by numerous doctors to that the best thing is to keep up a MODERATE exercise program that involves 30 minutes of cardio that doesn't send you reeling (or 10, if that's all you're up to that day), and then try to concentrate some weight work (even using your own body weight at home - like calf raises on your stairs) to help with lower leg pooling if that's an issue for you. Please work out at your own comfort level, and push yourself just a little to see what your boundaries are. Moderate exercise is good for everybody who can do it, and I think it's general health we should be looking at....the healthier we are, hopefully the better we'll feel, with or without POTS> Cheers, Jana

I've gone on a couple of trips where I had to fly, and the flying itself isn't too bad, but like Dianne I'm exhausted once I get to where we're going after we land. Then it takes me a day or two to rest up and recuperate. I was just on a week-long trip for a family emergency where I had to help my mother, who has Parkinson's, get to the hospital, shop, and drive her around (very stressful) and by the time I got back home to Tucson, it took me 4-5 days to recover. Now I just try to avoid flying where possible, and drive instead - or better yet, have people come here! Cheers, Jana

Eating your heaviest meal at night goes against everything I've ever read about good health and nutrition. Usually the best way to eat for energy and for digestive problems is to eat 4-5 small meals a day. I've been eating this way for years, and it really does seem to help. Anyone else? I would look at some nutrition resources online, or go see a nutritionist, but I know that's what I've been told for years, along with some of my friends who also suffer from POTS/CFS/etc. Good luck! Jana

I have my bed raised about 5 inches primarily because I have OI and I think it does help. It took a little getting used to, but now it feels 'normal'. It also helps with hiatal hernia and esophagitis problems, but I'm sure it doesn't work for everyone. I also have a contour pillow and that really helps me sleep better. Try sleeping without the incline, and see what feels better, and go with that. Only you can really decide. Cheers~ Jana

My guess is that you're dehydrated and that your electrolytes are out of balance. Also, if you are throwing up your food, how many calories are you keeping down? If you're not already, try eating small meals/snacks several times a day and drink like a wild banshee. Make sure you're drinking something that will help your electrolyte balance, too. Let us know how you do!

GREAT NEWS! Get out there and do some living while you're feeling good, and my biggest wish is that you continue to feel this way, and even better!

I haven't gained any weight from the extra salt, either, although I may have abdominal bloating a little more often.

Dear Lieze~ I am so sorry for what you're going through. I've been through two divorces in my 48 years, and I know how painful and scary they can be (obviously I'm not good at that marriage stuff, picking the 'wrong' men....no more marriages for me!) We also have a friend who's bi-polar, so I know just a little bit of what you're going through. On a recent trip he was our "cat/house sitter", went into a manic phase, and we had to head home early (another LONG story). My best advice to you is to check things out as soon as possible with a decent lawyer. There are all kinds of help available to you, including federal disability, state disability, help with medical care, etc. We can all give you advice, but a lawyer will work with your particular situation and make sure you're not cheated if the divorce does go through. Pardon me for saying so, but it almost seems like it might be the best for all of you. Just remember, you need a GOOD lawyer. Check around, ask friends, look online....if you can't afford much, there's always legal aid and other associations that can help you. Best of luck and my heart goes out to you. Big bear hug, Jana

Thanks, Lieze!

Good for you! I hope it helps. Sounds like something I should look into....Where did you get yours? Cheers, Jana

I get the same thing, especially at night when I've tried to stay up too late. I get up really early, so I go up to bed about 5:30/6 to read and am asleep by 7-8 pm. It's like a wall that hits me, and all of a sudden I'm so tired I can barely get myself to bed. I also get this way when I'm having chronic pain. There are days that I have so much pain and fatigue that I just have to sink inside myself and get through it, minute by minute. Once in a while, I even think that it might be preferable to just pass away and not deal with all of this anymore, but I would never do it. Sometimes it's just so hard to keep fighting for what I used to have as a 'normal' day. It's relentless, and once in a great while, I'll have a day without pain and feel almost normal again, but it's not often....Thank God for those days, and everyone here. Jana ps....when my pain gets really bad, i'll take a small dose of percocet and actually feel better for a couple of hours.