Diurnal ME/CFS and cortisol/adrenal insufficiency

[huttond475]

I am a new contributor (84 years old) and seeking advice from other members who may recognize some of my symptoms and be able to offer suggestions that have worked for them.

In brief I came down with the first symptoms of ME/CFS in early 2015. Initially these were a recognition my physical endurance capabilities were starting to fade - as an avid outdoors kind of person, 6 mile hikes were no problem, but then subsequently these have gradually diminished till these days I can barely handle just walking around the house little more than 1 mile a day. Crashes are frequent and result in sleeping most of the day. Primary symptoms are the usual (i) over whelming physical fatigue (ii) non-restorative sleep, (iii) post-exertional-malaise and (iv) 'brain fog'. Other symptoms that may be contributing include microbiome disturbances (potentially pathogenic levels of a specific bacterium), higher than normal readings for some environmental toxins and heavy metals, Restless Leg Syndrome, and food allergies (wheat and gluten, scallops).

Many treatment and drug testing regimes have been tried, but to date without success (eg. Low-dose Naltrexone, Abilify, Mestinon, wheat/gluten-free diet, charcoal detox, probiotics, and mitochondrial supplements). The only treatment that appears to help is to follow strict "pacing" guidelines to limit physical and mental exertion.

The timing of earliest recognition of ME/CFS appears to correlate with diagnosis of Polymyalgia Rheumatica (PMR) (late 2014) and a subsequent major encounter with Shingles in early 2015.

For the past 8 years I have noticed that my ME/CFS symptoms are least in the mornings and then gradually build after lunch through the afternoon into the evening. These appear to mirror the typical diurnal rhythm of cortisol. Diurnal cortisol testing has now recently been done and revealed my levels were significantly below normal and followed my diurnal ME/CFS symptom profile.

Presently contemplating cortisone treatment. Would like very much to talk with those who may have tried this route and their experience with it in correcting or improving their ME/CFS symptoms.

Are there other causes that might account for my diurnal ME/CFS rhythm?

Thanks!

 

[CRCowtan]

Hi Hutton, I have very similar symptoms. I'm 56 and it's been a 10 year decline in my health since I first noticed my symptoms of fatigue starting. I don't have any information on cortisol. Unfortunately, each time I've had it tested, there is only one blood test drawn instead of the two to capture the rhythm. I also am better in the mornings and used to be a very active outdoors person. Now my "outdoors" is, like yours, around the house. I have found two medications that help, and one vitamin had a strong impact (which is often low in gluten intolerance).
- duloxetine
- wellbutrin
- vit d
However, none of the above have stopped my decline or afford me the energy I once had.
Good luck.

 

[huttond475]

Hi Hutton, I have very similar symptoms. I'm 56 and it's been a 10 year decline in my health since I first noticed my symptoms of fatigue starting. I don't have any information on cortisol. Unfortunately, each time I've had it tested, there is only one blood test drawn instead of the two to capture the rhythm. I also am better in the mornings and used to be a very active outdoors person. Now my "outdoors" is, like yours, around the house. I have found two medications that help, and one vitamin had a strong impact (which is often low in gluten intolerance).
- duloxetine
- wellbutrin
- vit d
However, none of the above have stopped my decline or afford me the energy I once had.
Good luck.

Hi, my thanks for your rely, and so sorry to hear of your situation. How I found out about my cortisol deficiency was through a diurnal test prescribed by one of my health specialists. The test I was prescribed is the Adrenal Function Saliva Panel offered through Labrix Clinical Services based in Oregon. Hopefully this confirms your suspicions of cortisol deficiency. You will need to have your doctor order the home test for you. Please feel free to reply off-line at huttond475@gmail.com.