Discussion in 'Fibromyalgia Main Forum' started by cerise, Mar 17, 2005.

  1. cerise

    cerise New Member

    Oh boy, I get to add ANOTHER DD to my already growing laundry list! Spent 3 months with the BEST CFS specialist (Portland, OR)& learned I have ORTHOSTATIC INTOLERANCE which is connected to my recently diagnosed "POST TRAUMATIC FIBROMYALGIA" all relating to spinal cord injury as a result of car accidents. Do you find yourself having a hard time standing for any length of time? Are you more comfortable when you're laying down or in a prone position? You might not be crazy, but rather your body is inappropriately responding to your change in body positions. Because of this, activity, heat and high altitude can make it worse for you. Some of the symptoms are: postural lightheadedness, visula blurring, dizziness, excessive fatigue, cognitive impairment, gastrointestinal problems, nausea, weakness (most noticeable in the legs), mood swings, migraines & other headaches, noise & light sensitivity. That's just ORTHOSTATIC INTOLERANCE. There's more! It comes under the title: DYSAUTONOMIAS. For more info check out the "National Dysautonomia Research Foundation" @ www.ndrf.org. WHAT AN EYE OPENER!!! Hope this info helps someone else. It explained a lot for me! I'm going for my tilt-table test next month, which I think I'd rather have a spinal tap again!
    ...may the force be with you!
  2. cerise

    cerise New Member

    There did seem to be a point where I found myself only comfortable laying down & cannot stand for any length of time without severe overwhelming exhaustion setting in, such as going to the grocery store (between standing & the lights I have to leave). My bedroom has become my castle & I guess it's the OI. Are you familiar with "The NDRF Handbook for patients with Dysautonomias" by Dr. Goldstein & Linda Smith? I just received it in the mail yesterday through the website I mentioned above. I will check out your website, thank you. How many more things am I going to come down with, all chronic & none having a cure???
  3. happygranny

    happygranny Member

    Cerise and Corttt

    I have looked at it before, wondering if I fit the bill, and I do in many of the symptoms.
    The reason I seem to have trouble standing is not due to weakness in my legs, but pain in my back, and general-all-over tiredness.

    I will take another look at that web site.

  4. KelB

    KelB New Member

    Last week, my Occupational Therapist said that Orthostatic Intolerance is just one of the potential bits of CFS - some people get it, some don't. I described my symptoms on standing and she said "Yup, that's it". Didn't seem too concerned by it and didn't recommend doing anything, other than getting up slowly. Maybe I should get it looked at closer.
  5. foxglove9922

    foxglove9922 New Member

    Many of us here with CFS also have OI. It is associated with low blood volume in CFS. When standing for even a short period of time the blood will pool in the abdomen or legs and not reach the brain causing the feeling that you need to lay down immediately.

    A tilt table test will confirm this. I'm taking a drug called Midodrine that has totally eliminated this problem for me.

    Until you can get your OI under control and should you find yourself in a postition where you have to stand (like waiting in line at the grocery store,,,,always was the worst for me), try moving around. I would move back and forth from foot to foot, walk circles around my cart, move up and down at the magazine stand,,,etc. anything but stand still because the nauseating, dizzying feeling of light headedness would come on something terrible. Twice I've abandoned my cart at the store because I thought I would vomit or pass out.
  6. mrstyedawg

    mrstyedawg Member

    I was diagnosed with this in 98. I was not getting any treatment for this. So, I finally found a doctor in my state that treats people with this disease. My appointment was just this Thursday. I had the tilt test at John Hopkins in 98. It made me very very sick. The doctor that I say Thursday did his own version of the test and he came up with the same diagnosis. The medicine that he prescribed for me is Midodrine, he said that I should definitely see an improvement in a couple of weeks. I am very sick right now from the trip down to the doctors so I am waiting to see what happens. Good luck on the tilt test, it is very unpleasant.
  7. TishVA

    TishVA New Member

    My doctor says I have OI. My normally low bp drops when I stand and my heart rate goes up, and I get all the associated symptoms-nausea, dizziness, leg heaviness, etc. I vomit a lot-sorry guys. I'm talking a couple times a week, and it's usually from standing. I have actually fainted several times, mostly standing in line and while in the shower. Now I have a shower chair! All this said...I haven't had the tilt table test yet.

    I take Xyrem for sleep, and it's packed with sodium. Since starting Xyrem, my OI is improving. I'm not sure if it's due to all the sodium or what, but it's def. getting better for some reason. It was very, very bad for a while. Glad to say that while I still have active symptoms of OI, it's more manageable than it was.

    I'm getting out of an a nasty flare in which my OI was really nasty, too, so maybe that's why the OI is fading into the background with the FMS and the CFS? I think I'll always be confused!!

  8. cerise

    cerise New Member

    my blood pressure is almost nil when I wake up. And I feel like I have to just stick something in my mouth to eat right away many times. My husband drives me nuts with all his prep for food & I just want to eat & that's it. Many times though I'm too tired to eat but those days I don't get out of bed.

    I went thru a test where my doctor monitored my blood pressure standing for about 30 minutes and then I had blood tests taken after 20 min laying down and 20 min standing. Anyone else have these tests before the tilt table?

    I just found out that my friend's daughter has OI but she's got anorxeia. Wow, the more we find out about this illness..........wow
  9. Kimelia

    Kimelia New Member

    I was just in the hospital for 2 weeks due to neuro cardio syncapy which I guess is what you mean for OI... I dunno. They put me on 30 mg of midodrine a day, i am now at 10 mg's. It's so expensive. I got my doc to cut it back because I hate taking prescriptions, especailly at that dosage. What dose are you all taking. They also put me on norpace cr which is for anti arythmia just in case I have an arythmia which they say most people with this problem have. I am going to try to get them to take me off of it since it doesnt seem like i have to have it.

    Anyways, I do not have as much trouble standing as I use to but I'm still getting the nausia, dizziness and flush feeling soemtiems. standing in line is not as intolerable as it use to be. Maybe the dose was cut back too much. I'm still tired and stuff, did the midodrine help wtih any other symptoms you guys have?
  10. cerise

    cerise New Member

    I didn't realize how long I had away from the board! In the meantime, (that chronic illness that's all in my head and my way of trying to get attention according to OHA ALJ)I have to realize this OI stuff is another new dimension all of its own. Its not like Raynauds which I aleady have, along with gout. This is different.

    So at 48, I'm wearing those old lady stockings that I thought I wouldn't be caught dead in at 98! Then again I shouldn't have to wear them becaue I didn't "pass" the Tilt Table test (I didn't faint).

    If you know or think you have OI, you may want to check out this web site. I contacted them earlier in the year and they sent me (free of charge) a really good book about Dysautonomias

  11. atpeace

    atpeace New Member

    I've had problems with it for a long time. My ER doctor called it Vaso Vagal Syndrome or Neurally Mediated Syncope...basically the same thing as OI, and add fainting into the mix.

    My symptoms aren't too noticable on a day-to-day basis. But occasionally I have an all-out episode of nausea, dizziness, tunnel vision, lower GI cramps, and ultimately fainting. These episodes are extremely intense and can be terrifying! Sometimes they happen once a month, sometimes I can go a year or more without one.

    I won't do a tilt-table test. I've spent most of the last 15 years trying to avoid these episodes....there's no way I'm gonna have one on purpose!

    I've read that OI issues are statistically more prevalent in people who have FMS or CFS. Lucky us.

  12. suz9601

    suz9601 Member

    A lot of us have POTS too I think. I have had it for over 3 years now and it is really hard to live w/much worse than the CFS/FM for me. I can't do grocery stores either w/the lights and the lines..the lines really make my heart/bp go nuts. Blood pools in my legs instead of going back up like it should. I am on a beta blocker for the heart rate and since being on it I haven't passed out again..It does lower my bp more though, which isnt good, but my heart rate would go up to 195 bpm, so I didnt have a choice.

  13. Sophiaz

    Sophiaz New Member


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