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Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
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Tired of Life From a Recliner Re: P.O.T.S.

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by BEG, Oct 27, 2009.

  1. BEG

    BEG Senior Member

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    Would you recommend that ME patients with P.O.T.S. be under the care of a cardiologist? In general, has it worked for you? Did you receive help?

    I have an appt. in Nov. I'm very tired of abusive medical personnel and wonder if I'm setting myself up for a good bruising. I've had many tests showing low blood volume, cardiac impedency, mild diastolic dysfunction, low VO2 max, low aneorobic threshhold, and positive tilt table, etc. However, I'm not receiving any treatment and never have except a few pill samples given to me by an ME specialist which made me dreadfully sick.

    I would appreciate ANY input.
  2. Advocate

    Advocate Senior Member

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    On a scale of 0 to 10, with 0 being death, how is your functioning overall
  3. BEG

    BEG Senior Member

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    I get out of the house once a week, usually to dr. appts. I can be active in my home for one to two hours with plenty of recliner rest between light household chores (pacing). My brain drains of energy quickly, digestion uses all my energy, and talking on the phone (except for short calls) drains me. A daily nap is usually required. If I don't get it, I'm in bed for 12 hours that night. Anything beyond this, I am quite ill with post-exertional malaise. Then I can't do anything. On the scale: 3 (?)
  4. Jody

    Jody Senior Member

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    Hi Brown-Eyed Girl,

    Welcome to the forums. :)

    I used to have similar symptoms to yours and so did my son. We have both improved radically from there, so I'll tell you what seems to have helped us.

    I also have a recliner that I used to spend alot of time in, with the thing reclining way back. And spent a lot of time in bed. Was only up and around for minutes at a time. I'd spend a couple hours after dinner in the livingroom with the family and then back to bed.

    I found that working with my ultraradian rhythm helped alot. That involved making a point of lying down, eyes closed in a quiet room for about 20 min. at a time, every hour and a half or so. If I did this faithfully every day, within a few days I would feel just a bit better. And would be tempted to stop taking the mandatory rest breaks. But if I stayed with it, I would get just that bit better again.

    Drank lots of water. Esp. water with a slice of lemon in it (alkaline effect was good for me). Took the peel off due to chemicals.

    Added more salt to my diet. This and drinking water helped some with low blood volume.

    Adding 6,000 IUs a day of Vit. D3 made a huge difference for me with POTS. Went from feeling like I couldn't get enough air and was going to fall down, having ten ton legs, and buzzing and tingling to -- better.

    Any food sensitivities you might have? High protein, high fat and low carb makes a world of difference for me. You might look into your diet a bit.

    Wheat, dairy, egg, corn sensitivities are very common and can have surprising symptoms arise from them.

    Meals closer together can make a difference. Your blood sugar may also have problems and there are things you can do to change things.

    Let me know if you've tried any of these things or if you have any questions on any of it, okay?:)
  5. Lisa

    Lisa Senior Member

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    Hello and welcome Brown-eyed Girl! :D

    Do you really have brown eyes? :) I have brown eyes with a lot of gold in them. Gives my eyes the color of tigerseye stones when in the right lighting. :)

    Have a lovely day!

    Lisa :)
  6. Lisa

    Lisa Senior Member

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    HUH! I hadn't noticed till you wrote that about the Vitamin D Jody, but my OI has almost disappeared since I bumped up my D from 2000 IU to a much higher amount the day after my doc trip. This would make sense to the main factor in changing that.
  7. Jody

    Jody Senior Member

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    Lisa,

    Glad to hear it!

    Just going by my own experience with it, it's entirely possible that mighty D has struck again. :D
  8. Lisa

    Lisa Senior Member

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    Well the only things that changed that early were a bit more selenium, a ton more D, some enzymes with meals, and swapping from soy protein to animal. Could be the switch in diet, but going off soy has never changed anything before.

    I'm guessing it was the D. :)
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Brown-eyed girl!

    And a huge welcome!

    I also have a lot of dysautonomia symptoms, OI, 3 prolapsed heart valves, so...I have seen a lot of cardiologists. Not one helped me. Most denied that such a thing as POTS or dysautonomia existed...or if it did, the heart wasn't involved.

    I have had most heart tests known to cardiologists (except the totally invasive ones) and none of them showed anything more than mildly prolapsed valves with slight regurgitation. I don't see cardiologists any more. There are exceptions, but even if they want to treat you, it is unlikely to be in ways that are compatible with what we know of ME/CFS.

    On the other hand, if you would feel better having a standard "heart check up," go for it. But be choosey about the cardiologist and get one recommended by other POTS patients. Sure, I have heart symptoms (though most of them are gone now with the right kind of care)--but they weren't originating from heart abnormalities! Rather, most of them came from ANS and HPA axis stuff.

    There is a very specific type of arythmia that a very few POTS patients have that can be helped by an excellent electrophysiologist doing an ablation, but in general ablations are a big no no for POTS patients. I have been under the care of an autonomic specialist who himself has POTS, so this is the source of some of my info.

    Follow your instincts!

    My two cents!

    Sushi
  10. liverock

    liverock Senior Member

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    Jody

    You may be interested to know that Vitamin D has been found to detoxify the brain from mercury and increase glutathione levels, one of the body's main antioxidants. Its also being touted as a better defence against swine flu than the vaccine which is just coming out. Mighty D indeed.:D

    http://articles.mercola.com/sites/a...vitamin-d-can-help-you-eliminate-mercury.aspx
  11. Jody

    Jody Senior Member

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    Liverock,

    I knew about the flu thing. Did not know though about the mercury and glutathione stuff.

    Thanks.
  12. BEG

    BEG Senior Member

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    Jody,

    Thanks so much for your suggestions. I've tried all except the dosage of vitamin D which I am now working up to. Yes, I have a confirmed gluten sensitivity. Don't know about the others. The term ultraradian rhythm is new to me. Is this specific to each individual?
  13. Jody

    Jody Senior Member

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    The ultradian rhythm is universal for all of us though as with so many things, it may be a bit different from individual to individual. Some of us seem to need to take those breaks more than others at any rate.

    Here is an article I wrote about it awhile back.

    Keeping Time with the Ultradian Cycle
  14. BEG

    BEG Senior Member

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    The rest of the story . . .

    On Nov. 17th, the cardiologist appt. came and went. I cancelled two weeks earlier. Something you said, Sushi, gave me pause. I was assured that, yes, this cardiologist treats P.O.T.S. But like you said, would it be in a way that is compatible with CFS? I was given betablockers (a fairly standard method of treatment) which casued my BP to fall to a record low leaving me worse off. I've visited P.O.T.S. sites and without CFS, and the help of cardiologists, those people are leading fairly normal lives. I thought I could get a fairly normal life, too, without the P.O.T.S. I believe that line of thought is erroneous. CFS casues P.O.T.S. Is that fair to say? And even without it, the disabling CFS would still be there.

    I also had a full cardio work up, too, with mainstream medicine. All tests were non-invasive. I must say I had fun with the Holter monitor becasue I could actually minipulate it just by standing for prolonged periods, sitting and reclining. Heart rate lability is quite common with CFS and easy to induce. The abnormalities were declared minor with an otherwise properly functioning heart per the cardiologist. In fact, when I asked if I could go back to the YMCA and work out to beat heck, he said, of course. I knew, however, that it took all I had to get to his office. Also, that was before a Cardio Pulmonary Exercise Test (CPXT) revealed much dysfunction. The normal protocol is to test again when the subject is post-exertionally fatigued. There was no way I could do that test the next day or even the next several months.

    I know the biggest culprit for me is heat. I'm comfortable with a very cool home. Now that the weather is also cool outside, I'm having fewer episodes of P.O.T.S. and feeling much better for it. I know avoidance of heat is key for me. Unfortunately, living in the south, there are many months I can't even step outside without a bad reaction.

    Jody, I'm not noticing anything yet with the vitamin D. Perhaps I need to take more. I had a specialist tell me that Procrit helps with dizziness.

    Thanks to all who posted.
  15. glenp

    glenp "and this too shall pass"

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    Vitamin D

    For those finding Vitamin D helpful, what is your blood test level for Vitamin D? Do you aim to keep the blood test level at a certain #?

    ty

    glen
  16. margib

    margib Senior Member

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    My blood level tests this summer were normal. I had 2 tests run at the Mayo Clinic. I also spent lots of time in the sun this summer (in the heat in TX), specifically to get vitamin D. Then my metametrix test this week came back that I was low on D, so my doctor decided I needed 6600 IUs in the morning. I've just begun it. Would love to hear if others are addressing their vitamin D levels or are supplementing.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Brown-eyed Girl,

    I live in the South too. Heat doesn't bother me so much now, but I still stay out of it as much as I can in the summer. But a couple of years ago I got an Arctic Cool Vest. It is a natural fiber vest with circular rib-pockets of gel that freezes--you put the whole vest in the freezer and it keeps you cool for a couple of hours. It was a life-saver, though this last summer I didn't need it much thanks to the treatment I have had. I still welcome the fall though!

    Hope you do well.

    Sushi
  18. Jody

    Jody Senior Member

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    Brown-eyed Girl,

    When I first started taking D, 2 yrs ago, I can't say I was aware of a difference for quite awhile. It was a very gradual improvement, I just ... didn't crash so hard that winter as normal.

    It was a few months later when I ran out and didn't get more Vit. D right away, that I saw a change. I got worse again, after a few weeks without it. Bought some more and within 2 -3 days had a reduction of POTS and OI.

    When I first started it 2 yrs ago I took I think 4,000 IUs a day. Since then I have increased to 6,000 through this past summer, then 8,000 IUs in Sept. when I had a crash, and recently 10,000 a day.

    Many people take this much and many find it brings relief. I've read that 4,000 is maintenance, and that more is needed for chronic health problems to begin to clear up.

    It is Vit. D3 that is highly recommended, D2 is not as well-utilized by the body.
  19. Jody

    Jody Senior Member

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    Margib,

    It is one of the small handful of supplements that I consider must-have.
  20. Jody

    Jody Senior Member

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    Glen,

    I am diagnosing myself on this one. I am seeing improvement from what I'm doing, and that is what I'm going by.

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