Sallysblooms

Happy Mother's Day to all! My son is grown. Hugs to all who have little ones to care for!!!!

I have to have surgeries often for my kidney stones. I have another next week. I do OK with anesthesia. Not easy but I do ok.

There is no perfect answer. I do eliptical just for a few minutes for my legs and rear, and the arms and heart too. Does a lot all at once. I do calf raises just standing up and a few exer. with my little weights and long bands. Simple stuff. I am a little more active in the house, I don't have to sit still like I did for over a year. Too dizzy to do anything for so long. For over a year, I was lucky to flex my calves a little, that is all. I guess we just do what we can when we can and hopefully have more good days than bad.

Yes, there was a newsletter here and I do know of Lupus being just one of the autoimmune problems that sometimes has POTS as a secondary problem. There are so many reasons POTS can start.

Naomi, it is pretty easy to get two "rare" illness. Lots of illness have POTS as part of them like Lupus. I don't think CFS or POTS is rare at all, just not not treated or picked up by most doctors.

They do overlap, but I didn't have POTS until I had surgery two years ago. I had CFS 16 or more years before. You don't have to have both, CFS sufferers do not always have OI either. The reasons for CFS and POTS can be so many. Not an easy answer.

You can learn all about CFS at Phoenix Rising Forums. It is a very complex problem.

I used to be that way. So different, now for some reason they are closer to the same. They can be a little off , but do see if there is a problem.

Good luck Jennifer. I hope you get lots of help and your doctor will know the supplements that help with symptoms and healing.

That is my diagnosis for my POTS. That is why I take lots of antioxidents, ALA, etc. The nerves that control the muscles are a problem for POTS. I work hard to heal them. The Autonomic Nervous System, etc. Nerves involved in so much. The only problem with that article is that they say it has to be low bp. Mine is high, normal and low. Various a lot as with many other POTSYS.

Has your doctor helped with supplements? Alpha Lipoic Acid (I take Lipoic Acid Supreme), B vitamins and other good antioxidents help the nerves heal. I can't believe more doctors do not study how to heal the nerves instead of just giving pills.

Are you just talking about Chronic Fatigue or Chronic Fatigue Syndrome? I have had CFS for 18 years. There are good supplements that help a lot. Finding a good integratative doc is helpful. They understand supplements. DRibose and CoQ10 help among other things. There are also CFS doctors but you just have to look and find good ones. Good luck!

For me, I can have high or low bp, feels the same. I am not dizzy much now thankfully, but when I was, the bp didn't matter. The blood flow, the nervous system and many other things are all making it happen. So complex.

No way I was well enough for that test. Just took other tests. I am much better now thankfully.

It is quite amazing, between Dr. Dzugan and my integrative doctor, I am making great progress.

If you have a doctor that knows about supplements, you can get a lot of immune building that way. A knowlegeable doctor can help with the best brands and doses. Maitake D Mushroom drops are wonderful, AHCC which is another mushroom product is also good. Astragalus, vit E, C, etc.

My doctor for testing hormones is Dr. Dzugan. It is the Dzugan Program. You need a doctor that understands compounding hormones, supplements etc because Dr. Dzugan works with them. You join his program and answer about 200 questions, then get very thorough blood testing. Then he prescribes the hormones and supplements you need. Your doctor gets all of the information by email/phone from him. You update, get calls etc to tweek the supplements and compounded hormones. The hormones are mailed from Mississippi. The most helpful and sweet pharmacist I have ever talked to! Between Dr. Dzugan and my CFS doctor, I am doing very well. I was unable to function at all not long ago. If you want to know more, Dr. Dzugan has a wonderful book about hormones and supplements and the blood, what we need. You can google him also. The book addresses many problems. It is so wonderful to have these great doctors. The program is expensive, but worth every penny. I am so happy my doctor suggested it and I wish I could have started it long ago.

I sleep 9 or 10. That is the amount I need. Having CFS for many years, sleep was hard to get but finally I have good integrative MD's. Hormones are all balanced, I have excellent supplements working so I sleep great. So, healing can take place with the combination of supplements and good sleep. I hope you can stop smoking and also not feel bad when you wake up.

I use supplements for everything, but at least if some doctors do not have that knowledge, the patient can get help. Just more side effect problems with most presciptions though.

Sensitivity to odors is hard. I had that long before my POTS, even long before my CFS and that is 18 years. It is really hard. Chemical perfumes etc are awful. Smoke, discusting.

Tilt testing is what most docs like. I was way too ill for it so I took other tests. Tilt testing can vary daily so I didn't want to go through that. Welcome to the forum!

There are so many triggers, I have read that hormones can be one of them.

I have high blood pressure and I am usually too hot.

They are on a POTS forum, You Tube also. Sweet couple.

I take many supplements. I get blood testing, neurotransmitter testing etc. The doctors guide my supplements. Time of day, brands, doses. It is sometimes hard to do it by yourself. I do take a good CoQ10 and Carniclear liquied, carnitine. Both are very good. I take a good fish oil at night. I love to grind fresh flax seed for smoothies.