How to explain fatigue to Functional Medicine Doctor

[soxfan]

I thought I had found a great Functional Medicine Doctor as she has done many of the tests none of my other doctors ever did.

I have to start off by saying Chronic Fatigue is my debilitating symptom. I have neuropathy pain as well but it’s manageable. So from the tests it was found that my morning cortisol is on the low side and evening is slightly high.

As she said to me that is just a snap shot of my cortisol at that given time and moment which I agree as levels can change quickly. But she is focusing my treatment on Hormone (taking DHEA and Preglelone) well was until I started losing my hair.

Every visit I say the fatigue is not better and she continues to blame it on my night cortisol...I have been sleeping great lately ( knock on wood) and not waking during the night. My morning cortisol was low but not flat line.

I am trying to explain to her that the fatigue not only varies daily in intensity but how it feels to me. Like sometimes i feel tired physically...sometimes I feel drained...sometimes it settles behind my eyes etc. I am not sure how cortisol levels can change the feel of the fatigue. I don’t think she gets that it’s not just how bad the tiredness is but that it changes.

I get up and sometimes feel good for a few hours then Bam ...the fatigue starts to engulf me and I can’t do much of anything.

I am working on my gut issues now for a month...detoxification and building up good bacteria.

Any ideas how I can describe it better so she can focus on other reasons.

 

[place]

This reminds me of my sinus issues. Also my food allergies. When sinus infection is in my maxillary I nearly fall asleep at the wheel. Then if I clean it out, my energy is back as soon as it’s out.

Sometimes the infection is beamy eyes, and it just hurts. When it’s in my forehead, masive brain fog. By modifying my diet to exclude gluten and dairy, I get more consistency in my energy and less sinus issues.

I know this does not answer your question but the symptoms reminded me of mine.

 

[joanierav]

hi sox fan. are you the same girl i used to talk to every night on the puter? it may not be you, but if it is, didnt we have a lot of laughs. i remember you calling me spaghetti, something like that. i also had a nick name for you but having brain fog at the moment and cant remember it. it think it was on prohealth forum.

anyway i digress, to answer your question . you might try saying "please can you check something more than the cortisol. i think i have something causilng this fatigue in addition to the cortisol".

good luck, joanie

 

[Learner1]

Hi @soxfan

Have you explained that you have ME/CFS which has HPA axis dysfunction as a piece of it but that there are more factors thsn just adrenal fatigue? And that unrefreshing sleep and PEM (post exertional malaise) are core symptoms?

Then, knowing it's ME/CFS, looking for the factors researchers have found in the illness might help. One organizing tool for such sn investigation is the first doc attached below.

My doctors have found I have problems in every single box in the diagram - note how hormones fit in just one of the six boxes. Your doctor should recognize the boxes understand how to test for issues in them.

If Your doctor needs more info, I've attached some other docs that cover different aspects of this illness that you can share.

 

[soxfan]

@joanierav ...no that wasn’t me..

 

[soxfan]

@Learner1 ...Oh my...Thank you so much for all that information. It is going to be a great help when I see her next month. I really keep saying the same thing every visit...”no I don’t feel better” “the fatigue is unrelenting”etc...

I was truly at a loss as how to bring up other issues I possibly have...she is just so confident it’s all cortisol and hormones that are the main issue and I know otherwise.

I think she can be a great help if she would consider other possibilities and now I can show her....

Thank you!!!!

 

[Learner1]

You're welcome! Let me know if you have any questions...

 

[Wishful]

Does the cortisol/fatigue link involve sleep quality? My fatigue does not seem related to sleep quality, which is why I hate the term 'unrefreshing sleep'. My sleep is fine, and it properly refreshes what it is supposed to, but I have fatigue (or rather, mental lethargy) that is separate, and different from the kind from lack of sleep. If her hormone treatment is supposed to improve sleep quality, it's probably not going to help. If Pregnenolone is supposed to reduce fatigue, maybe it reduces a different form of fatigue than caused by ME/CFS.

There presently is no real theory (just hypotheses or wild guesses so far) for how ME/CFS causes symptoms, so no treatment that theoretically treats fatigue is expected to work on ME/CFS. If she says that Pregnenolone is a proven treatment for fatigue, ask her if it is proven to be effective on ME/CFS fatigue. Maybe she'll realize that the answer is 'no'.

 

[Learner1]

Do you mean pregnenolone?

There are an infinite number of reasons for fatigue, as well as one not being able to go to sleep, stay asleep, feel refreshed, get enough sleep, stay awake, etc.

I've experienced every one of these issues on my journey, and though my adrenal glands played a role, there were a plethora of other things to address which hugely helped with sleep and fatigue. Infections, mold or heavy metal toxicity, nutrient deficiencies, iron overload, mitochondrial dysfunction are all possible factors.

 

[soxfan]

@Learner1 ...That is exactly what I need the doctor to understand. The fatigue I experienced is way deeper than cortisol dysregulation. It’s a total loss of cellular energy at times and total mental exhaustion other times.

I gave her a list of my main symptoms and detailed each one in how they feel so she should know I have PEM and crashes.

I know I have some type of huge toxin load in my gut which we are working on but she hasn’t addressed mitochondrial dysfunction at all...maybe that’s in her plan down the road.

If I get the impression that she just didn’t “get it” then I will have to move on..

@Wishful ..I don’t believe my fatigue is related to sleep quality either which I am trying to get across to her. She keeps insisting that I am not getting deep sleep because of the high cortisol which really is only slightly elevated. My fatigue is so deep that there is no way that is the only issue. I have had even higher night cortisol in the past and never felt as bad as I have in the past five months.

I am on Pregnenolone because my hormone ratios are off...I don’t think Shem was expecting it to get rid of the fatigue but maybe help with energy and sleep. Same with DHEA...

I just need the doctor to understand that my fatigue is not improving at all on these treatments and to start looking into other causes...which I think she will...

 

[Wishful]

Yup, keep working on getting your doctor to understand that there is more than one type of fatigue, and that there are types that are not related to sleep quality. I know I've come across mentions of diseases and toxins and whatever else that 'cause fatigue' without causing sleep problems. I can't think of specifics, but maybe some searching will provide you with a list of examples to show your doctor. I expect that doctors fall into ruts: if 90% of the patients complaining about fatigue have it caused by sleep disorders, they automatically write the prescription for sleep aids...and then may get annoyed if you insist that it isn't that simple. Some doctors seem to be quite lazy, and don't want to do anything but automatic prescriptions. Some just don't realize there are non-simplistic disorders.

 

[Learner1]

A good functional medicine doctor should be well aware of the factors that cause fatigue. They typically create more complex treatmentvplsns thsn just whipping out a prescription pad and prescribing X.

@Wishful Sounds like you don't know much about functional medicine - I've attached a document that explains how it should work and how and why it came about.

 

[Pink]

The functional medicine drs I went to (one from holtorf who is a cfs specialist supposedly) did not seem to get my fatigue or pem either.
Meh I was not impressed.

 

[soxfan]

@Pink My functional medicine doctor has been extremely knowledgeable in the issues she has so far found wrong with me. I am treating gut issues I never knew I had and my hormones are out of whack. I have just started this journey with her but if I feel she isn’t working toward helping me deal with my chronic fatigue/PEM /crashes then I will be finished.

Those are my core symptoms and if she keeps insisting the fatigue is from sleep dysfunction meaning bad quality or high cortisol then I will have to look elsewhere.
I know I am lucky not to have lots of debilitating symptoms but the ones I have so a good job all on their own...

She did testing no one else thought to do so I give her props for that...