Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Feeling worse, don't know what else to do

Discussion in 'General ME/CFS Discussion' started by purrsian, Dec 6, 2015.

  1. purrsian

    purrsian Senior Member

    Messages:
    316
    Likes:
    799
    Hi guys, I haven't really posted much on here yet but I'm always scouring these forums for tips, advice etc. I'm having a really hard time right now and I just can't pinpoint why. A basic overview of my illness...

    I've never been an especially healthy person, always low on energy even as a child but started to get actually sick about ten years ago. I'm now 29. While I've had ups and downs over the years, the symptoms were mostly fatigue especially post exertional, poor sleep, depression, circulation issues, deficiencies in iron b12 and magnesium. Last year, I was really improving through pacing myself and planning everything. I was doing well enough that I actually considered myself as just deconditioned rather then still sick.

    In February, I got the first flu that I've had since getting cfs. It was pretty bad and I had to go on a plane during the worst of it. I was in bad pain during take off and landing and I couldn't hear much out of one ear for a day or two. Since then, I've had sinus problems (no previous history) although the symptoms changed over time. In about April I started taking thyroid tablets for reverse t3 dominance with levels at about 780 - 450 is the highest normal range.

    Over the past two months, I no longer have face pain, headaches or nasal issues but I do have a lot of dizziness. I was on singulair allergy tablets for two weeks but stopped them about 3 to 4 weeks ago due to extreme depression, anxiety and dizziness. My latest thyroid results show reverse t3 down to 453 but slightly high thyroxine, so my dose has been dropped last week.

    My main concern is that I've only ever had blood tests done to try and find a cause for my long term issues. All of the standard blood panels always come back normal. Are there any kinds of scans or things like endoscopy that could help find something that has been missed? I just can't identify what's gone wrong over the past 6 months - I just seem to keep going downhill further. I was at work with my mum today and had to keep resting as I would sometimes feel suddenly nauseous, dizzy, shaky, clammy and a bit out of it.

    I just don't know what to do. I'm struggling with daily life, freaking out over finding xmas presents in time, finding it hard to work one day a week with mum. I was almost well enough to do two days on my own. I just don't know what else I can investigate or ask my doc about, any suggestions or guidance would be appreciated. Sorry this was so long, I'm just so confused about it all.
     
    Woolie likes this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,901
    Likes:
    12,708
    Sth Australia
    My thoughts with reading that with those symptoms kicking in was probably orthostatic intolerance of some kind going on with it. You could try doing a poor mans test for postural orthostatic tachycardia syndrome as that could show something if you do the test correctly or ask your doctor if you could have a tilt table test done. Does it help when you lay down?
     
  3. Vineyard1

    Vineyard1

    Messages:
    80
    Likes:
    85
    When reading this-nausea, dizzy, shaky, clammy-classic hypoglycemia s/s. Do you eat protein with each meal, eat smaller frequent meals, minimize simple carbs and include fiber daily? I agree with taniaaust1 that it could be orthostatic intolerance as well. As far as testing, a large group of CFS/ME folks have abnormal results when testing immunoglobulin panel, serum protein electropheresis panel, Natural Killer cell count AND activity, full herpes viruses panel, Holter monitor, ATP profile,tilt table testing and PET scan of the brain. I know there is additional testing as well, but I have to lie down now..sending you best wishes and a virtual hug.
     
  4. purrsian

    purrsian Senior Member

    Messages:
    316
    Likes:
    799
    I've very recently had my fasting blood sugar tested at it was normal. I'm fairly sure I've had the immunoglobulin and natural killer cell tests and they were normal, I'll have to check over my results but there's never any indication that there's an immunity issue aside from the fact that I never get sick (aside from in February). What's an atp profile and the serum protein one? And what's a holter monitor?

    I had postural hypotension in my late teens but i seemed to grow out of the worst of it. Or maybe I just got too fatigued to stand in one place for long enough lol my heart rate rises when I stand but the doctor put that down to deconditioning. She measured my bp standing and it was normal, but they only ever do it immediately when you stand. I'm going to google the poor mans test and do it because I do feel better lying down. Although it doesn't help the dizziness - I'm often in bed when it's worst because it seems to be worse when I am most fatigued. i wish we all had easier to diagnose issues lol
     

See more popular forum discussions.

Share This Page