issie

I don't want to scare you, BUT, my sister-in-law did this too. She thought it was menopause also. Then she went to another doctor and they did a DNC and found cancer cells in her utereus. You might want another opinion.

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They are starting to think it may be related. At least allot of us have had it and now have or have had POTS in addition to it. Yes, you're right they have to put a scope in to look for it. But, as I said earlier, Natural Progesterone cream will help with the endometrosis. I had a hysterectomy when I was 36. I should have had it sooner too, but I wanted kids but never could get pregnant. My hysterectomy was my 8th abdominal surgery and I didn't want any more. I had them take everything. I wanted to be rid of the pain. It helped sooo much with that. But, of course, you have other issues with the hysterectomy and what that brings. But, I'm glad I did it. Things were so much better afterwards. I no longer had the pain and my colon issues cleared up too. I had horrible IBS and had had colitis. All that went away. Also had malabsorption that enzymes helped with. Oh, side note. Enzymes helps with pain too, if you take them between meals on an empty stomach. It helps with inflammation. But, if you're going to have surgery, leave them off before because they can also thin your blood depending on the type you take. You can get the natural Progesterone at the health food store in a pharmicutical grade. You apply it to your skin, it's a cream. Be sure and figure out what days to use it. If you are still having periods you apply it at different times of the month. I wish I had known about it when I was younger and could have saved myself allot of pain and surgeries.

I've never heard of the Boyd brand of bed. Is it an air type bed like the Select Comfort? We tried that out and didn't like it. I like the feel of the Temperpedic but because of my dis-ablities, I can't turn over or get out of them. Any other suggestions?

Jana, It could be all those things. Since they aren't sure if you have endo yet, there are still some things you can do that will help with all the possibilities. Natural Progesterone --endometrosis has been found out that most women are too high in estrogen. If you balance out that, it also helps with the PMS stuff too. There are ways that you use it if you still have your utereus and periods. You can get one at the health food store. One of the best books I've read on how to use the natural hormones was written by Dr. Johnathan Wright. If you are using anything that could possibly be upping your estrogen, you may want to stop (soy, flax seed, red clover, black cohash, etc.). It could be making everything worse. Hope this helps. HANG IN THERE!!! And tell the others in your life too also. Hopefully, you will know something soon.

I when younger, before my hysterectomy, had horrible pain w/periods. I did use Anaprox. It had a damaging effect on my liver. Must be very careful with it. It did help the pain. The reason for the issues, in part, was endometrosis. I'm finding out that there are allot of POTS patients that have this. It has to be all connected. They are thinking, two lines of thought, it could be inflammatory or an allergy response. If an allergy response, it makes me think Mast Cell Activation Disorder -- which can go along w/POTS. As for inflamatory, we all seem to have pains and issues that very well could be inflammation.

What brand of adjustable bed did you get? There are so many of them.

I use the long leg compression pants and tank made by Barely There. They are like body slimmers. Look under the Bali, Hanes outlet store and you can order them. They help me allot.

One thing I've found very helpful is full body compression. I have Ehlers Danlos in addition to POTS and because of this there is allot of blood pooling in the legs and abdomen. If you look on the Bali Hanes web site, there is an outlet. They have a tank made by Barely There and some long leg pants. These are like body slimmers but work wonderfully for full body compression. It has helped with the nausea that I have daily too. I make sure I wear them when traveling or having to sit and not move around. They do make you a little hot, but I feel like it helps so much and try to stay where its cool. Since overheating can make everything worse. One suggestion is some type of cooling vest if she has to be in the heat. There are also cooling hats and scarves. There has been discussion on this site about those things. I applaud you're helping your daughter. When we feel so bad, it is so nice to have someone figure it out for you and all you have to do is follow through. I'm sure you are helping her to do that, even when she doesn't feel like it. (Just don't push her too hard. There are times when you just CAN'T!)

I've noticed I have more pain when I eat anything from the nightshade family -- white potatoes, tomatoes, peppers, eggplant. I do notice less swelling if I avoid gluten, but didn't test as being allergic to it. I have severe pain -- all over. I think it is ED and FMS related. I didn't know there was a gentic test for Anklosing Spondilities (sp). My Dad has that. They did any x-ray of my sacram and said there was the start of arthritis there and that's where it would show up first. But at this point, they don't think that's an issue.

Sometimes they can do a sleep study at home if there are money issues. In my case, I did it in the sleep lab. I do have apenea. I think if I could get used to the CPAP it might help because at times my brain isn't getting enough oxygen in the night. But the machine is HARD to get used to. I think it causes me to have more issues in one sense, because it definitily affects my nerves and that causes your pulse to go up etc. I do feel better when I use it though. I've found that sometimes if I take a Bendyrl or something that will help me fall asleep, I do better. Recently the dr. told me to put it on and keep the light on with it on and read or watch tv so your body gets used to it before you try to go to sleep. That does help. I think there are allot of people with sleep issues and that could be causing tiredness. There are other sleep issues other than apenea. Talk to the Dr. about your money issues, maybe he can work out something for you.

Yes, I was misdiagnoised as having Parkinson's for over a year and a half. The medicine made it worse though. So, some meds could cause it to be more pronounced. I still have the tremors despite not being on any meds. I bobble in my head, most of my tremors are on my right side -- hands, leg etc.

It might not be the carbs in the apple. It could be that you are sensitive to apples. I had an Elisa blood test to test for allergies and sensitivities. I was sensitive to apples and anything in their family. Along with anything related to a bird. I had the same reaction to apples that you're having. I couldn't figure out why my pulse would race when I ate them.

Who did you get to help you with you adrenal weakness? Do you take cortisol for it? I've known for years that my adrenals weren't working properly but the regular test, as you said, showed them okay. One doctor did a saliva test years ago and had me do cortisol for awhile. I have to have it before every surgery too. I feel like this would benefit me at the present time too. I have recently realized that I'm having a gluten intolerance. I've started back on the diet. Hoping to feel better soon.

Just get a full spectrum digestive enzyme. You get them at the health food store. They have some that are chewable or capsule form. The ones I have right now I ordered and they are chewable. But the people at the health store could tell you what their best seller is. You need one that will work for all the food groups since you have digestive issues and are not sure which foods are the problem. Go to Whole Foods, they have a good selection. Hope it helps you.

I have a sister who has very bad orthostatic intolerance. With her tilt test her heart stopped at 3 minutes. She had anorexia. I wonder if this is an autonomic issue. The only way she was able to start eating with the anorexia was with anabolic steriod shots--like what they give POW's when coming out of the camps and having starved. The doctor said that the brain chemicals change and the hormones get messed up and there is no way for them to eat until those chemicals or in more balance. It sounds like this may be an issue for some of you. The other thing I wanted to comment on is the malabsorption issue. I have that too. The thing that has helped me the most with that is Enzymes. I take them with before/after meals. It has really helped. Also, if you've had your gallbladder removed, it is absolutely necessary. You don't have some of the enzymes needed to digest fat --(therefore, the floating pooh). Try the enzymes. I don't know why doctors don't tell us these simple things.

TXPOTS I love to swim and do whenever I can. As for floor exercises, that's really hard since once I'm down I can't get back up. I'm sure if I could strengthen my leg muscles and figure out why I'm having such problems with my legs -- I might could figure out other ways to get exercise. Sometimes, my legs won't work. It's like they get paralyzed in place. I drag one leg to walk. I was born with twisted legs and club feet. The club feet go along with the EDS. It's one of the signs of the illness. I did recently get a Pilates type table and was just beginning to get the motivation to use it when I broke my leg/foot soooo bad. So now that is on hold until I can get the rehab and relearn to walk on that foot. It will be a long drawn out recovery. The doctor said I may need more surgery at the 10 month mark. I started physical therapy today on it. Oh, how it's going to hurt to get it better. It seems life can be a vicious circle sometimes.

OKAY, I'll start the part of the conversation for those of us who can't or find it nearly impossible to exercise. Granted I have issues because of Ehlers Danlos. I have vascular issues that cause my veins NOT to constrict enough to bring blood back up my legs and have allot of blood pool in my abdomen that causes allot of nausea. When I try to walk or stay upright on my legs for very long, I get nauseous, faint, dizzy and start feeling like my legs will not pick up. When I stop and try to rest, that's when my pulse starts going sky high. So, I have to sit or lie at that point and it has to be rather fast. There's the feeling of complete unwell and if you try to push through it, you are down and sick in the bed for days afterward. I've always wanted to be an athlete and be in good shape and be able to do all the things people do in sports or play, but I've never had that ability. I've been at times nearly wheel chair bound and have had to use a cane to walk. I think I have some other issues going on too, but the autonomic nerveous system can and does affect us all in different ways. We should be a little more tolerable of differences, because we are all dealing with the same POTS issue, no matter what the reason or cause. It's so complex and different for all people. It makes me sad that I can't go run, or go to the gym and do those type things. I'm happy for those of you that can, but feel a deep sense of inadequancy in my body. It's so very frustrating. Are there others out there with the inability to exercise?

There is a Brown Rice Pasta at Trader Joes that is WONDERFUL. I can't tell the difference between it and a whole wheat pasta. I've also found that coconut milk easily can take the place to milk. If you want to use it in cereal it is good too. I usually dilute it because it is really rich. I had a nutritionist tell me one time to use flax as an egg replacement. But, I don't do well with flax or soy. You have to be really careful with soups too. They thicken them with wheat. It is hard to go glutten free, but I'm going to do it again. I did for over a year and lost allot of weight, but started back and wham, gained it and some. I felt so much better off of wheat, oats, rye and barley. I know I don't do well with milk products or eggs either. Oh, there is another good product out there its Pamelas Pancake Mix. You get it at the health store. It has a rice base with other nut flours. It makes really good pancakes.

I had the same thing happen to me from a very prominent medical clinic. Be sure to either request them change your records or do an appeal letter with the reasons for you not agreeing with the diagnosis. If you have this included in your medical file also request that a note be put on the doctors records that your letter has to be included in any medical release. That way you can show that other test/doctors disagree with his/her diagnosis. In my case, the doctor didn't believe in POTS, despite it being her colleages that diagnosised it.

In an illness of such complexities--I personally, don't think we can have complete absolutes. Do we really need them? Will it change or help anything? Do we need to put ourselves through this and spend money we don't have? That's an individual decision. But for me, if I have probabilities and there is nothing scientifically that can be done to reverse or change it-- a diagnosis of probability is enough for me.

I took L-Carnitine for a long time. It seems to give you more energy, but maybe too much. I think it speed my system up. A doctor had me using it thinking that a mitrochondrial issue was there. It increases your energy. The Acytel form crosses the blood brain and is supposed to help with cognitive abilitites. It gave me a terrible headache. Anything that increases my acytel choline does that. This is used allot for dementia and other brain issues. Everyone is so different though. What will work for one won't work for another. Only one way to find out.

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I personally don't do well with milk products. But, one reason why he may be telling you to avoid milk is it is one treatment for MS. Allot of MS and POTS symptoms are similiar and maybe the diet for MS would help us.

One thing that I've found helps my nausea is homeopathy by Hylands called "Motion Sickness". These are fast and easy to use. They work pretty fast too.