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History

Blog entry posted by Sherlock, Jun 8, 2011.

Male, 50s, always had been strong and healthy until a period of enormous stress and then came the "bad cold" in autumn 2008 - which included pronounced effects in my ears.

After the cold, I noticed orthostatic hypotension and then took my BP and discovered a sudden onset hypertension, mainly diastolic. It had been ~115/75 but was now ~140/95. For the first time, I could not bring my BP down by using exercise. My body temp was also low, about 97.2 - which was a sudden change from my usual ~98.6.

Some weeks later the mental confusion began. I would test myself by doing math in my head and found it very difficult, so I'd just give up. Doing taxes that year seemed like a hit-or-miss proposition.

A few months later, while simply carrying a pot of water across the kitchen, my heart rate was 105. I was skipping a beat every 5 seconds (which was not a PVC or PAC but an actual skipped beat). Viral myocarditis is a definite possibility. I haven't had anything close to being that bad for a long time, and no skipped beats for months.

My shortness of breath was at its worst on days when I'd have to sit down once or twice while simply descending the dozen steps coming downstairs.

Worst BP was 160/115. Beta blockers nor other short term use of CCB+ACEI helped. TNG worked like a charm briefly, as usually did niacin. Niacin wold sometimes give me tremendous stomach pain, but I always took it on an empty stomach anyway for max effect.

There were intermittent periods where I'd spend a day or two mostly in bed, from sheer tiredness.

The mental confusion abated within the initial year, and now comes and goes only at a mild level.

I did exercise whenever I could, and as soon as l'd fully recovered, I'd do it again. This was mainly weightlifting. I noticed that my muscles didn't work quite right - I was weaker and I'd often get strains easily. I often had joint soreness. Never had myalgia.

Over the years, my symptoms would wax and wane but I was getting generally better - though it seemed the problems would never actually go away. In summer of 2010 I made frequent trips to a park, mainly sprinting and pullups interspersed with walking for 1-2 hours each visit.

Once while standing and talking to someone for 10 minutes or so outside a supermarket, I suddenly felt as if I'd pass out but got instantly better when I started walking again. So that seems like blood pooling in the legs.

Shortness of breath could change a lot from day to day. But it was never normal. I have SOB just walking down the sidewalk. Hiking, even in hills, was okay - but if I exceed a certain fairly-low threshold of O2 demand, I am gasping... such as cutting the grass with a difficult to push mower... the self-propelled mechanism broke.

Sensitivity to things like the chlorine in water comes and goes.

In January of 2010, I had an episode of really bad cold-induced bronchospasm, presumably from massive degranulation of pulmonary mast cells. That never repeated.

The very wet and rainy March of 2011 brought new symptoms: I absolutely could not sleep more than 3-4 hours, nor get back to sleep within several hours after waking. I'd never experienced any insomnia that bad before. I also had to get up with polyuria 5-6 times over night. That was unbelievable. Diphenhydramine seems to help, usually. Melatonin seems to sometimes help.

I also had days in a row with burning eyes and blurry vision, to where it was very hard to see.

However, this year is the first where my BP is mainly normal again. My submandibular lymph nodes, which had been swollen every day since the start of this (but never tender), have been going down all year and are getting close to normal. I was fairly weak in March but then fairly strong in May/June. My lower back, though, seems to be especially susceptible to problems of soreness and weakness.

With no health insurance, no tests, I presume I have some post-viral fatigue syndrome. I always knew things were to due to a virus. Early on, I had been on heart disease groups and found several people, mainly female, with similar symptoms and who'd had every test but got nowhere, except for diagnoses of POTS or OI. I only suspected CFS this year... it is poorly named and I'd thought of CFS as only tiredness.

  1. lch1
    Hello, Sherlock --
    I strongly urge you to be tested for "walking pneumonia" or mycoplasma pneumoniae. I had nearly exactly the same symptoms and regret that it was not caught. After a lifetime of energy and activity, I rapidly deteriorated into what I now identify as chronic fatigue syndrome. After 2.5 years, I am still making great numbers of antibodies (just tested yesterday). The MCB protocol has greatly improved my health over 2-3 months. Please have a test for mycoplasma, it sounds likely you acquired it and mistook for a flu. Good luck--
  2. Sherlock
    Thank you kindly, Tania and Merry, for the comments.

    Tania, at least you can be glad that you do "dip" at night, because non-dippers have a much worse outcome. Btw, I'd originally felt that my hypertension was due to something (like free radicals) destroying my Nitric Oxide. I see now people with CFS talking about too much NO, so that's news to me - and they must be of some different kind. But exercise does (usually) increase NO and I will be eternally convinced that's what made my BP finally normalize.

    I do realize, however, that some people aren't fortunate enough to be able to exercise.

    Merry, without insurance I have to Sherlock for myself, as always :)

    Best wishes to you both :)
  3. Merry
    Thanks for posting your story, Sherlock. So much sounds familiar. I'm sorry for your difficulties.

    Like you, I am without major medical insurance, and I no longer see a doctor.

    Wishing you the best,
    Merry
  4. taniaaust1
    Yes very poorly named.

    Its sad how we can go to other health groups and find so many of us there who dont know they have ME. You'll find them in endocrine, heart, digestive you name it.. groups... there will be us, searching for answers. Sometimes I go on like gathering hunts in those groups.. helping people know what they may have. Hopefully if we can get most of our number recognised and diagnosed, we could then more successfully push for a name change.
    Up to 80% of us may currently be lost.. seeking to find out what we have.

    I found your story interesting with having the orthostatic hypertension early in the piece before you got other symptoms, (mine can spike and go up to 156/138 when on my feet, when Im asleep or laying thou I have hypotension). Very interesting that your BP seems to be normal again (it may be still spiking up but only once a day so not as noticable unless you are being 24 hr monitored.. mine only like spikes up once a day if Im doing things).

    I dont have a clue when my orthostatic BP issues started occurring and have always assumed it occurred after having the ME long term.. I'd thought it must of been damage which was caused after time. Im going to have to rechange my thoughts on this issue after reading your post.

    The orthostatic BP issues in ME/CFS really do need to become more recognised. Most even ME/CFS specialists are unaware of this orthostatic hypertension one which so many of us get.