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griffism

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About griffism

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  • Birthday 09/27/1994

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  1. I am looking at a lot of different home made recipes. http://www.dfwcfids.org/healing/gokhmbrw.htm This is one that I was given by a member of my local support group.
  2. I am looking to eliminate gatorade and powerade from my diet because of several questionable ingredients in those drinks. However, I need a replacement for these in my diet, as my POTS is not going away anytime soon. Any ideas? Stefanie
  3. I have heard of a cooling vest from a number of people. I have heard pretty good remarks about it. Might be worth a try. I think sweating is right up there with brain fog in the list of most annoying symptoms. Stefanie
  4. Sue, Your experience sounds to me like Raynaud's Phenomenon, which is characterized by a red, white, and blue color transition of the skin. I don't know much about it, but I do know that your experience sounds like the textbook definition. Might be worth looking into. Stef
  5. This happens to my feet all the time and always happens to my hands when I take a shower. It seems to me that it is blood pooling in the limbs that is causing this discoloration, which is why you may associate the purplish color of your hands with the coming of a POTS episode. If too much blood is in your hands or feet, then not enough is in the brain, and the human body doesn't really like that very much. Stefanie
  6. Thanks for the response! I am going to look into getting one. Stefanie
  7. I always buy Bolthouse Farms Chocolate Protein shakes because they taste great, I can get them down when nauseated, and they have 30g of protein. They have been a great help for me. When I first got sick, I went from 115 pounds to 94 pounds in less than a month because of an inability to eat. These protein shakes saved me from an NG tube. Also, Gatorade and pickles are definitely on the list. Stefanie
  8. I was wondering if any of you know whether or not the Fitbit requires the use of a chest band in order to track your heart rate. Along with POTS, I, also, have EDS. The chest bands on normal HR watches leave bruises and sometimes leave blisters. I am looking for a better alternative that is also accurate enough to tell me when I am pushing too hard and need to dial back when exercising. Stefanie
  9. Welcome to the forum everyone! Don't hesitate to ask questions. There are no stupid questions here. Stefanie
  10. Thanks for the support everyone! It means so much to me to have you guys. I will keep you posted on how the surgeon appointment goes. Stefanie
  11. I have an appointment with a surgeon in two weeks! Fingers crossed that he is willing to take me on and perform the procedure! Stefanie
  12. Your leg pain sounds like it is blood pooling related because when you are in a seated posture, the calf muscles are not working to push blood back to the heart. However, when you are walking, these muscles will contract and consequently will reduce the amount of blood that is pooling in your lower extremities. Blood pooling can be quite painful because as too much blood enters the blood vessels, they begin to irritate the surrounding nerves. I would try wearing compression stockings when you are going to sit for a long period of time. Also, you could try to elevate your feet at least to waist height while sitting in order to reduce the amount of blood that gets trapped in your legs. Let me know how it goes! Stefanie
  13. Whenever I am "normal people" sick, my meds do not work at all. Stefanie
  14. For me, I live in brain fog almost all of the time. It is my understanding that brain fog is due to a reduction of cerebral blood perfusion. The reduction of blood flow to the brain results in a decline in the overall functioning of the brain itself. This manifests itself as brain fog. If the reduction becomes too great, then we enter confused states, where we may be unable to recognize or remember things that are familiar to us normally. If this reduction of blood flow becomes a lack of blood flow, then syncope occurs. The only thing that has helped me with brain fog is IV Saline. I get 2 L of normal saline once a week for now until I get my port placed. After that, I am going to go to three times a week. IV Saline makes almost all of my POTS symptoms significantly better, to the point that I feel 95% of my normal self. Stefanie
  15. Thanks for the responses! I am going to see a rheumatologist soon so that I can be tested for mast cell and for SLE. I will keep you guys posted on what I find out. It will be interesting to see if this phenomenon is something other than POTS. Stefanie
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