POTS/Low Blood Volume with CFS

Discussion in 'Fibromyalgia Main Forum' started by MicheleK, May 29, 2012.

  1. MicheleK

    MicheleK Member

    Does anyone suffer from POTS or Low Blood Volume with their CFS? I do. I have been getting saline IV's twice a week for the better part of the past year and a half. It has helped tremendously when drinking a gallon of water, eating salt and taking florinef didn't do the trick.

    If you suffer from this condition, getting the saline IV's (need a doc's prescription and home health care if you don't have a medical person in your family to do them for you.) will most definitely give you a whole new level of feeling better and give you a chance to get out a day or two without major relapsing if you are reasonable in the activities you choose.

    I have gone from totally bedridden for about 4-5 yrs, to up half the time, able to cook simple meals, do laundry and even visit with my grandbaby once a week.

    I highly recommend you talk to your physician if you have an orthostatic issue. If you don't know if you do, look up Postural orthostatic tachycardia syndrome, Neurally mediated hypotension or low blood volume either here on ProHealth or using an internet search engine. You will know when you read the symptoms if you may have one of these conditions that you could get help for and get a better level of activity.

    With CFS and FM, it's all about adding 10% here, 20% there, etc. by using different things that address each symptom there is an answer for.

    I'd love to hear from anyone who is doing the IV's regularly.

  2. deepak

    deepak Member

    I think I may have it though not sure !! but i do have symptoms of it.....I am just tired going to docs for anything !!

    I have electrolyte drinks everyday and that surely helps. Also I try to get up slowly and change positions slowly.

    How is your LDN experience coming along ?


  3. mbofov

    mbofov Active Member

    Will look into this - I think I have mild POTS, but as you say, a little here, a little there, can make a big difference.

  4. ghosalb

    ghosalb New Member

    Hi MicheleK,
    I can get a prescription, but does Medicare cover this kind of home healthcare ? Thanks ....Bala
  5. MicheleK

    MicheleK Member

    Anyone who thinks they might have undiagnosed orthostatic intolerance of any kind should ask their doctor to send them for a tilt table test. That is the definitive test for these conditions.

    Yes medicare does cover home care and all supplies for IV's.
    You would need a doctor to stand behind your diagnosis and write your scripts. Insurance usually allow them for a month to three months and then want to reevaluate if you need the or not.

    I have two medical personel in my family so I just get a script for the saline bags and supplied and they come, put my IV line in and after 3 days I pull the line out. It's very easy.

    Once a doctor gives you a script, it is up to you to call around to home care agencies to determine which ones will come, put the IV line in and leave you to do your IV bags and pull the line. Or if you would rather someone was there with you during the IV you could choose that kind of agency.

    Wishing you all well,