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.

 

[Kate4]

I have had a reduced adrenal reserve ever since I got sick. I actually had pituitary testing. For a long time, I had a prescription for low dose hydrocortisone. It helped a lot; it made my life better. I also had to take Florinef, as my blood pressure was also low. Some years later, I just took the Hydrocortisone when I was under stress. When under stress, I get such exhaustions that I can barely breathe lying down. I cannot move for days. I had a very good endocrinologist for 20 years. He retired as did my primary care recently. The new primary care refuses to give me the hydrocortisone. That has led again to severe exhaustion episodes. I have begged for the meds to no avail. She could care less, Her argument was my pituitary testing is too old, The real reason however is, it is all about her personal liability, especially with a patient like me, with complex illness. too much hassle. I feel with people like us with a complex ill defined disease , you are always at the mercy of a physician. They decide whether you spent your weeks in bed or not. Having a physician who knows about the illness and will just give you the drug to try is worth gold. Yes ,definitely try it. Start with 5-10 mg in the morning if you can.

 

[Sophia Gram]

I can only say from the experience of my acquaintances that cortisol therapy can have quite unpleasant consequences, especially with long-term use. Therefore, they preferred renal support therapy. In particular, they use ashwagandha and rhodiola, which help regulate cortisol levels.

 

[huttond475]

My apologies for the tardiness of my reply to all above who have responded since my initial post earlier this year. Herewith comments on your posts.
CRCowtan: I should have pointed out that my diurnal cortisol levels were derived from saliva testing at home throughout the day. The kit used and ordered by my Integrative Medicine physician was Labrix Adrenal Function Salivary Panel supplied through Walk-In Lab. I plan to look into trying the suggestions you make.
Kate4: Many thanks for your comments on using dehydrocortisone. I am glad you found some benefit from taking it. I can appreciate your frustration as we all do with many physicians who are so unaware of ME/CFS and its impact on community members. I am fortunate to have found an Integrative Medicine specialist who is knowledgeable in the area from initial involvement during the early AIDs crisis. If you write to me offline at huttond475@gmail.com I will provide his contact details.
Sophia Gram: Yes, I am sure you are right ... for some people dehydrocortisone is not the solution hoped for. Until we know more about the various subclasses of ME/CFS and the one we each belong to, the chances of us happening on a drug that helps us with our specific symptoms will remain quite low.

Thank you all again for your comments!