Rachel

It is incredibly hard to describe the fatigue. I think someone has to experience it to fully understand.

I used to be a year-round competitive swimmer, so I liken the feeling to that of just having finished a 200 meter race when you've given it all you have. You get out of the water and all of your muscles feel like jello. You CAN take walk a short distance, but you feel like your muscles could give out at any time. There is muscle there, but it just doesn't want to work!

It also feels like your legs and arms weigh 3 times their actual weight. Moving and lifting can take thought and great effort. If I push myself too far then I end up stumbling or dragging my feet. And sometimes I just collapse. And that can happen by just standing up and walking across the room on a bad day.

It is so much more than the normal tired that healthy people experience. When someone is a healthy tired then they can keep pushing themselves and be fine. Sleep it off and they're back to normal the next day. But we can't just keep pushing ourselves. With the fatigue we face it doesn't matter how much we rest; it doesn't go away.

Well, I'm rambling. And I still don't think I've adequately described the fatigue!

I have the same problem just like you described. I'm fine if I have enough food or liquid in my mouth. But if it is just saliva it is hard to swallow. Sometimes it takes 6 tries!

I've never mentioned this to a doctor since it hasn't interfered yet with fluid or food intake. So I don't know if it is connected to dysautonomia or not. My guess would be that it is since almost every problem I have is connected to ANS dysfunction.

I'm interested to hear what others say too.

Rachel

Dear Amy,

It sounds like you have had quite the week. I've been thinking about you and wondering how you've been. I'm so sorry about all of the problems with your PICC line, dizziness, etc. I hope that next week goes better for you and brings a bit of relief from some symptoms.

Hang in there and let us know how this week goes for you.

((((HUGS))))

Rachel

Dayna,

That's wonderful that you had such a good time!!! I'm glad you were able to go and have fun.

Rachel

P.S. Happy Belated Birthday!!

Many of us get palpitations and arrhythmias. They are almost always innocent. So, rest easy, there is probably nothing to worry about. But just to make sure you can ask your doctor for a 24 hour holter monitor. This is a heart monitor that you wear for a whole day and it records all of your heart beats. It is then examined carefully and a report is sent to your doctor (and to you if you request one).

You can try a search on here to get some more info. Just type in "Palpitations" or "arrhythmia" "PVCs" or "PACs" You should get lots of hits.

Rachel

Hi Bronwyn,

It is nice to meet you. I'm glad you found us!

Rachel

Tessa,

I've often had a bp of 80/60 or 80/50, but at that point I am stuck in bed completely unable to get out. Generally I feel best when my bp is 120/70, but it is rarely that high anymore. Once a nurse took my bp (I was lying down) and she said, "Well, you're blood pressure is 80 over I don't know what. Normally I'm having to revive people at this point, but you're talking to me, so I guess you're okay." We had a good laugh. It's amazing what stress our bodies face with dysautonomia, yet we make it out alive!

Everyone's normal bp is different. I have a friend who is very healthy, but her bp is always about 80/50. The best indicator for you, Tessa, is probably how you're feeling, not the numbers on a reading. But if you know that you're bp is usually higher than 80/60 it might be a good idea to take it easy for a while until your reading is higher again.

Lisa, I do believe there are some people here with blood pressures that rise instead of fall. You might find some information if you do a search. Otherwise, you could start a new topic and maybe get some more answers. Wish I could help you more. Good luck!

Rachel

Hi Poohbear,

Thanks for the update. I'm glad you're able to lurk.

Wow, you certainly have faced a string of complications. I'm so sorry you had to go through such an ordeal. I'll be thinking about you and praying for you as you continue to recover.

Well wishes,

Rachel

Dear Sunfish,

Thanks for checking in. I'm sorry you're so tired and in so much pain. And I'm sorry you have to use so much of your precious energy to try to fix pharmacy and insurance problems. How aggravating.

When you have the energy, feel free to ramble.

Meanwhile, we're still thinking about you!

Rachel

Congratulations, Nina! That's great news!

I hope that all goes well and that you enjoy teaching.

Rachel

How do you figure out if you are dairy intolerant? Do you just eliminate it all and see if you improve?

And how do you know if it is just lactose intolerant or dairy intolerant?

I know that milk makes me feel much worse but I've never known if I'm completely intolerant, or if it's just hard to digest and so it makes me tired.

Hi Pam,

Here's an easy soup recipe of my Mom's. She got it from a friend in Virginia, actually. The base is V8 juice, which has lots of sodium. She puts ground beef in, but you could easily omit that or put in chicken instead.

Hamburger Soup (or Hamburgerless if you prefer!)

1 1/2 lbs browned ground beef

chopped celery and onion

46 oz V8 juice

46 oz water

Bring to a boil, then add:

2 pkgs dry Lipton chicken noodle soup (side note: there are very few noodles in this dry mix, but if you want to

avoid them all together you could just add a chicken bullion cube)

1 small bag of frozen vegetables

1 can of navy or great northern beans

1/3 head of cabbage

Simmer.

This makes a lot of soup, so if your family is small you can just put a container of the soup in the freezer for later.

Enjoy!

Rachel

Thanks for sharing the smiles!

I had a nurse look at me like I was crazy once too when I was thrilled that my bp was "high." The "high" bp was artificially induced with compression stockings, but it was up none the less!

Hi Lisa,

Welcome to the forum. I'm glad you found us. I hope that you can find good information and good friends here.

I hope that you can find a doctor who will work with you to find out exactly what is going on without blaming things on anxiety.

About the rising bp - sometimes when the heart rate increases to compensate for the veins in your legs not constricting then it will actually raise your blood pressure. You mentioned at one point that you weren't able to stand up for more than 5 minutes without the symptoms becoming so bad that you had to sit down. So it is possible that if you had stayed standing (if you had been safely on a tilt table) that your blood pressure would have dropped a few minutes later if the heart could no longer compensate.

I'll add that on my tilt table test (I was diagnosed with both POTS and NMH) my heart rate went up immediately and my bp slowly went up for about 8 minutes. After that my bp just kept dropping and dropping.

Hope all of that made sense!

Have you looked at the print out of your heart rates and bp during the ttt? If not, it would probably be beneficial to request your records from the hospital. You can then look them over yourself and see what is going on.

Again, welcome to DINET.

Rachel

Ami,

Thanks for all of this information!!! I'm going to look into buying a couple of the skirts. I think that will help me a lot with the issue of having to wear compression hose in the heat.

Rachel

Amy,

Thanks for the update of good news!

I pray that the remaining 6 weeks of pregnancy go well.

Wishing you all the best,

Rachel

Dear Flop,

I'm sorry you're having such difficulty with your cardiologist. That is so frustrating. If you need a wheelchair and it would improve your quality of life, then you should get one. He is choosing to not be compassionate or understanding.

I do not believe that using a wheelchair has made my POTS worse. If anything it has helped my POTS because it allows me to sit and not use up energy too quickly due to standing and walking. My POTS gets worse when I push myself too far/do too much.

I don't know of any documented evidence that wheelchairs don't make POTS patients worse. To me it just seems more like common sense. If you can't walk and stand, then you use a wheelchair. The other option of falling or fainting is not a healthy one! Perhaps an article that shows how disabling POTS can be would be enough to convince your cardiologist?

If your cardiologist isn't willing to help with the wheelchair, could your GP help you get one?

Best of luck,

Rachel

Dionna,

Yes, I have changes in my handwriting. Sometimes I can write "normally" but other times my writing is very sloppy and there is nothing I can do about it. It's like I start losing fine motor skills or something. But eventually (sometimes days later) it comes back.

Rachel

Thinking about you, Melissa.

I'm sorry to hear about the stomach pain.

I will keep you in my prayers.

Hugs,

Rachel

I hope you're doing okay, Ernie.

I miss you!

Rachel

Hanna,

I would suggest using a wheelchair. You can borrow one from the airport. It also makes the security process quicker because you don't go through the regular line. Instead you go through the employee security entrance.

On the plane: make sure you bring some electrolyte packets and stay well hydrated. Also, salt loading may help you to retain fluids so that you don't have to go to the bathroom as much.

I hope you have a wonderful trip!!!

Rachel

P.S.

Another thing you might find helpful on your trip is a simple camping stool. You can find them at Wal-Mart in the camping/fishing section. I used one for a while before I had to be in a wheelchair. They cost about $7, fold up for easy carrying, and are lightweight. I got one that is made of wood and has a canvas seat. It looks kind of like a directors chair, only without a back. Anyway, it was very helpful for when I could walk into someplace (Post Office, Hotel, etc) but not stand at the counter. That might ease the check-in process at a hotel.

Interesting thread.

I've never noticed any ill effects from vinegar.

Garlic lowers blood pressure, so I stopped eating it for quite a while. But I never noticed any improvement in my health, so now I eat it again. Perhaps on others it has a greater effect of lowering bp.

Chocolate - mmmmmm! That's one of my favorite treats. Unfortunately milk chocolate will make my heart pound and my hr will increase. I think it is just due to the sugar content. If I eat dark chocolate (the 60-80% cacao stuff) then I don't have the side effects. But maybe that is just because my chocolate cravings are satisfied with less chocolate! And therefore I eat less sugar.

Powdered sugar is the absolute worst for me. Ham and milk come in a close second.

The easiest foods for me are raw fruits, steamed vegetables, grilled salmon, a small salad, and a small amount of whole wheat bread.

Ok, now I'm getting hungry. Time to find another post!

Rachel

Thanks Angela and Nina for the answers. I guess I'll have to go see a dermatologist!

Rachel

Thanks, Sushi. I will have to check out those non-sugar ones. I don't really like having sugar on my teeth, but I also don't want aspertame. My sons doc highly discourages the use of aspertame, especially if you've ever had any kind of seizure. So I'd like to have an electrolyte packet without sugar or aspertame.

So the Emergen-C packets have the same electrolytes as Gatorade, they just have Vitamin C added too?

Rachel

How exactly is EDS diagnosed? I've wondered if I have this as doctors have commented that my joints hyper-extend, I've had problems with loose ligaments, joint pain has been increasing, etc.

Do you see a geneticist to have it diagnosed? What are the tests/evaluations?