Health & ME/CFS, This Crazy Life

And Then, Everything Changed, Part 1

The last 6 weeks or so have seen some massive changes happen in my life, some for the better, some for the (much) worse. I had planned a nice long post detailing the adrenal exhaustion, stage 3, I was diagnosed with, and how that is so common in my fellow ME/CFS patients, but since I’m in serious pain right now and shouldn’t even be using my left hand since my shoulder disintegrated on me (vicious attack of the refrigerator), and am beyond-exhausted from my mother’s moving from Fairfax to Houston (she’s on the way right now), I’m going to cram 3 posts worth into this one post. (Longest run-on sentence ever!)

So, here in as short a detail as I can get it is: Adrenal Stress/Exhaustion, Re-starting Valcyte, Tick-Borne Disease Treatment, & Shoulder Disintegration. My Mom’s Move will be in Part 2..

Adrenal Stress Syndrome & Adrenal Exhaustion:

I was diagnosed with adrenal stress syndrome, stage 2, at least a decade ago. Because of it, I was nocturnal for the longest time, the way Rhiannon is right now. Essentially, when you are in that stage, your adrenal glands don’t release cortisol (which is pretty much the same thing as cortisone) correctly, with the highest levels in the early morning hours to wake you up, slowly falling to lower levels until you get sleepy at night and sleep on a proper schedule.

Instead, your body releases cortisol at the highest levels in the evening, making you widest awake at 10pm or later, and it’s virtually impossible to fall asleep, often until near dawn, depending on how screwed up your body is. Even if you manage to knock yourself out with a sleeping pill, your brain doesn’t reach the proper level of deep sleep because the cortisol is too high.

For Rhiannon, this means her deepest, most essential to health, sleep comes between 6am and 1pm, which is why she is in online school – it was simply impossible for her to get up and function well enough to make it thru the day at public school.

I’ve progressed from stage 2 to stage 3, adrenal exhaustion. My adrenals are not releasing much cortisol at all at any time, but there’s much more than cortisol involved, as the adrenal glands regulate many hormones that control the way the body functions.

I’ve started on cortisone replacement therapy – the same cortisone as is used for so many illnesses, but at a level that is supposed to mimic what the body is supposed to be doing on its own (5mg upon awakening, and 2.5mg in the afternoon). This low a dose should avoid the many pitfalls & side effects of cortisone, although I did have a major candida flare in the beginning.

It does seem to be helping, so I’m glad I’ve started it. One reason we had not been able to re-test me for it was because I was on the Florinef (fludrocortisone) for Neurally Mediated Hypotension (NMH, aka POTS), and taking that interferes with the accuracy of results.

My LLMD also started me on 3 different adrenal support supplements.

As to why I’ve progressed to stage 3, I’m pretty sure we can lay the blame for that squarely on the shoulders of the stimulant meds (Provigil, Nuvigil, Ritalin) that are handed out to us patients so we can function. They enabled me to work several years longer than I should have, and I still take them when I make trips to the doctor or grocery shopping.

But pushing myself to get more accomplished has led to things being much, much worse!

If you have ME/CFS, I strongly recommend you ask your doctor about taking the adrenal stress test, which is a simple saliva test (you soak cotton rolls with salive 4 times a day). The test used to be speciality labs only, but Labcorp did mine, so apparently it’s more widely available. There is a TON of information about adrenal stress online, and just google it & dig in. I found Dr Lam’s site to go very indepth.

Re-started Valcyte:

As you may know, my 14 months on Valcyte came to a screeching stop when my blood cell counts fell drastically, which was detailed in Risky Decisions, or Valcyte: the Very Scary Adventure Ends.

I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.

My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.

Tick-Borne Disease Treatment:

I had a very long visit with my LLMD’s CNP, and could write an entire post about just that. But let’s keep it short & say because I’m not entirely convinced that Bartonella is my biggest problem right now, and am not confident in IV antibiotics, I’m going to be starting on Ketek, an oral antibiotic which will get some Bart but also the Anaplasma I tested a weak positive to. Anaplasma is notorious for causing headaches, which I have in spades.

For more on the Bartonella issue you can read Shock and Dismay: Re-visiting Tick-Borne Diseases

And Then, My Shoulder Disintegrated:

14 months ago I injured my left shoulder trying to move a bag of dog food. We first thought it was “only” a rotator cuff tear, but as time passed & the pain continued, it became apparent that there was more than that. An MRI showed I had a SLAP tear, which is a tear in the cartlidge that holds your arm bone to your shoulder blade.

As time went on, it became less painful, and because a SLAP tear repair is really difficult & involves a very tricky surgery & intensive physical therapy, I decided to just be careful with it & add it to the list of nagging issues. It was really good at letting me know when it was going to rain, and I got used to sleeping only on my right side.

But in the intervening months, I’ve continued to have muscle wasting along with the weight loss. I’ve watched in alarm as the outlines of my bones & ligaments became more visible. Lately, I’ve really noticed it in my shoulders, where muscle has faded away and body surfaces that should be bulging outward with muscle or, at the very least, flat, have become sunken & hollowed out.

I’ve tried. Everything. Protein shakes. Force feeding myself.

I’ve been so very careful.

Every single interaction with Kodi, our at-least-120 pound 2 year old dog, who we adopted last July (at 70 pounds), has been careful. I’ve played endless games of tug-of-war with him, using both hands so I could retain as much strength as possible in that arm.

But always I was watchful, knowing he could give one wrong jerk and it could make things worse. So always I had both hands involved.

But it wasn’t him that did me in.

It was the refrigerator.

I was looking for something, with my left arm resting on top of the frig door. I leaned down & tried to see the bottom shelf.

And then it happened. There was a movement in the joint, a feeling that was painful & simply wrong. I made a noise, an inhalation of shock.

I had subluxated my shoulder – a partial dislocation.

Looking in the refrigerator!?!?!?!

Luckily, I had an appointment with my PCP the next day (Thursday), and showed up with my arm in the sling.

My shoulder was kind enough to subluxate itself again as she was gently examining me. There were noises from both of us this time, since her hand was on it when it happened.

As she put it, it is likely I made a small tear into a really large tear. There was no muscle there to hold the joint in line properly. I was sent for an xray to be sure I didn’t chip any pieces of bone off but haven’t gotten the results yet.

I am beyond dismayed, frustrated, appalled, overwhelmed, and angry. And in constant pain. Every movement of my neck, hand, arm, etc, affects it.

I am also afraid.

I don’t know how on earth my poor body is going to handle surgery. Can it process the anesthesia correctly at my very low BMI & general state of dysfunction? Will it have the ability to heal? How can I do PT (which will have to be at home)?

I really, really, didn’t need anything like this. It’s hard enough just getting through the day!

And finally, yesterday the movers came, and my mom is in transit from an hour away to Houston, which will be Part 2, when I can get to it.

That alone brought a lot of changes (and furniture) into my life. Stay tuned for more!

Thanks for reading, my friends, and feel free to comment!

8 thoughts on “And Then, Everything Changed, Part 1”

  1. So sorry to hear about the tear. I hope you won’t need surgery, but in case you do, here’s Dr. Cheney’s anesthesia letter.

    And speaking of Cheney, he prescribed me Cortef at my last appointment because of how poorly I was dealing with stress. He suggested I alternate between 10 and 20 mg per day, but I’ve never managed to take more than 5 mg. It makes me nervous to take it, because it makes me feel so much better that it obliterates my ability to perceive the edges of my energy envelope. I think I’ll ask him or my GP for that saliva test, for curiosity’s sake.

    I’m glad your cell count recovered. That was pretty worrying!


    1. Hey Jocelyn!

      Thanks so very much for that terrific letter – I doubt I can avoid surgery at this point, and that will come in very useful!

      I was thinking about you when I read thru Dr Lam’s website on Adrenal Fatigue. Both of us have massive muscle wasting aka protein wasting, and he has this to say about patients in adrenal exhaustion:
      “The body enters into the stage where the primary goal is conservation of energy to ensure survival. Systematically, the body goes into a slow-down mode and starts to break down muscle tissue to produce energy. This catabolic stage results in the breakdown of muscles and protein wasting. Chronic fatigue is common and exercise tolerance is reduced. Concurrently, chronic fibromyalgia appears. Toxic metabolites begin to accumulate throughout the body, leading to brain fog and insomnia.”

      This is from here:

      I think you’ll find that page & the other articles he has very interesting.
      Thanks again for all the info!


      1. Thanks for that link. I have to say, the thing that’s most interesting to me there is the insomnia connection. It would be awesome if supplementing my cortisol led to me not needing six different drugs to get any sleep.


  2. I’m sorry for all your suffering; I often get Very Annoyed with those who say things like “God will only give you as much as you can handle” or “What doesn’t kill you makes you stronger(excuse me?)” It basically says that you’re being punished for being strong. I can’t imagine what it must feel like, and I wish that you would let me came and help you somehow. Although I will say that your strength, humor and grace embarrasses me into behaving on days when waking seems like too much, and I finding myself publicly crying from pain. You are in my heart, sister-deare. OOLSH


    1. Ah, sweetheart, I’m so sorry for both of us, having to deal with so much pain & suffering, topped with those who say things like that! I swear, I may just punch the next person who says the “whatever doesn’t kill you…” thing to me! I know there is truth in it, and I know there have been many times in my life, well before I got so ill, when crap would just happen to me & somebody would say that. I often thought to myself “Hey, God! Yes, you! I don’t need to be any effing stronger, so just knock it off, already!” But you know, I did need to be stronger, it turns out. But really I don’t think I have all that much grace, etc, about it all, especially not about the shoulder. I’ve been really, really irritable & having random bouts of anger erupting, generally in relation to how bad it’s hurting at any given moment. *sigh*

      But what can you do? Besides curse a lot. Find a good orthopedist, I guess!

      And just as soon as we get the house situated after the influx of furniture & stuff, you are more than welcome to come & help as much as you’d like! I just may be calling on you to be my personal RN when I have surgery, to be sure the doctors do it right that day & help care for me for a few days afterward.

      Gentlest hugs, dearheart… and oceans of Love!


  3. I am so sorry to hear that you are feeling unwell. Have you had your thyroid levels checked or even if they are fine, considered starting dessicated thyroid hormone to see if it helps? There is breaking research in thyroid disease that using T3 only dosing eliminates the need to treat your adrenals – they heal on their own on T3. You can learn about it on the Stop the Thyroid Madness website or Facebook page. I would just like to see you get well at last.


    1. Hi Patricia, and thank you for commenting!

      I developed hypothyroidism about 11 years ago, and my LLMD & PCP both are treating it “aggressively,” I guess you would say. I take both cytomel & synthroid, so have both T3 & T4. My TSH is almost non-existant, but we are ignoring that & going with what my free/total T3 & T4 levels are when tested (before taking that day’s doses).

      I’ve tried a number of thyroid supplements over the years but nothing made much difference, and have been on armour thyroid and several other combinations. There is dessicated thyroid in one of the adrenal supplements my LLMD just started me on (TG-100), and I do think these are helping.

      I have a lot going on in my body, with Lyme & other tick borne diseases, ME/CFS, FMS, etc.
      Dale has mentioned that site to me, and I likely should visit it again.

      I wish more doctors understood how to really test for & treat hypothyroidism!


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