Monday, June 13, 2022

Functional Medicine A Bust For Me

I'm dealing with some health issues still with an unknown cause. I've gotten four diagnoses (in addition to my mental health ones), Ehlers Danlos Syndrome, fibromyalgia, IBS, and Hashimotos thyroiditis. However, I have some symptoms that don't fit any of those diagnoses and we've yet to figure out what is causing them, let alone how to deal with them. This is quite frustrating, to say the least. 2 years on and still it's a mystery. 

I've been to so many different doctors, but for each specialist, it was me doing the research about what the issues can possibly be and which doctors were the right avenue and then asking my PCP for the referral, not the PCP figuring out what type of doctor to send me to. It has been quite frustrating that I need to be in charge of all this, not a doctor, and needing to do my google sleuthing, and then following up on it. Like shouldn't a doctor be the one trying to help, and not me doing the doctor's job?

I was thinking about what might possibly help. About 4 years ago I went to a functional medicine doctor paid for by my insurance, and he had some ideas about what the cause might be, but he wanted me to do special testing not covered by insurance, and it was too expensive for me to afford, so I never did it.

Two years ago, when things started getting worse, I went to a different functional medicine doctor, this time off insurance, and privately paid for the specialized testing he recommended, but the results arrived and other than my cortisol levels being messed up, there wasn't much wrong that showed up, so I never paid for follow up appointments with that doctor.

But since then, things got progressively worse, and I'm really frustrated by my lack of answers and diagnoses to what is going on, let alone how to deal with them. Yet again I thought about going to a functional medicine doctor, because I wanted someone who looked at my whole body, not just one symptom at a time, and figure out the greater picture, and help me get diagnoses and treatment. I don't alternative doctors and treatments, I want actual allopathic (non homeopathic) doctors to treat me and figure things out, just ones that deal with the whole picture instead of one symptom at a time.

I reached out to another functional medicine doctor, wondering if she might be able to help me. Her pricing was quite a lot, and I was debating whether or not it would be worth spending that money, but I figured that if she could help, maybe it would be worthwhile. Even though it costs a lot.

Before I decided to think about whether or not to spend the money, I thought I'd ask her what her focus is when seeing people, what she does to help people heal, and I felt very disappointed, to be honest.

Her focus is on dietary changes, seeing what nutritional deficits there are and which vitamin and mineral levels are too low, as well as mind/body connection.

Except I kind of already did that. I feel kind of like how I did when I was dealing with serious depression and was recommended to read the book "A Mind of Your Own" by Kelly Brogan about how to heal depression by dealing with the underlying health issues causing the depression in the first place. Her approach was on focusing on gut health, thyroid health, not taking pills such as birth control pills that affect your mood, and making sure to do stress reducing and health building activities such mindfulness meditations, sleep, and exercise. And when I read that, I was like "Oh gee, I'm screwed" because at that point I already had been eating Paleo and eating in a gut healthy way, never took birth control pills or any other pills, over the counter or prescription, my thyroid numbers were all (then) normal, and I did as many stress reducing activities as possible and got in a good amount of exercise. Basically, the book told me to do everything that I was already doing, and it didn't work for me, so that's why I went the standard medical route of pills and therapy which did help my depression and other health issues a lot.

So back to the functional medicine doctor.

While I'm no longer paleo, and know I might do best on the auto-immune paleo diet, I simply do not have the ability, time wise, emotionally, or physical strength wise, to do all the extra work going on the auto-immune paleo diet would entail. I've done regular paleo before and even that was hard, and auto immune paleo would  be even harder because it would mean doing without nuts, seeds, or nightshades (when I did it I anyhow didn't eat eggs which are also not allowed). Simply not an option. But I do know which foods affect my health most, and have already cut out gluten and eggs and much dairy and dont eat many nuts or seeds or legumes or most cruciferous veggies because they bother me. And it only helps to some extent, so that isn't the solution to my health issues. So there isn't really much a functional medicine doctor can tell me to change in my diet that I either haven't already done, or simply cannot do at this point in time.

As for vitamin and mineral levels, I need to get re-checked but the think people keep telling me to get higher, like my b12, has fortunately been high normal ever since I went off gluten. My iron levels are on the low end of normal and considered totally average for a woman, and my vitamin D levels are low, but I'm trying to get them higher, and I don't need a functional medicine doctor to tell me that. All my other vitamin and mineral levels that have been checked have been normal.

And as for the mind body connection, I've been in therapy for 6 years by now, and for an entire year, pretty much all of 2021, I went to somatic therapy, which is therapy meant to help deal with chronic pain by dealing with the trauma which is internalized into chronic pain. And though it felt silly to me, and I didn't understand how it should help, and even though it felt hokey to me, I was willing to give it a shot, I went for an entire year, completed the entire protocol the therapist told me to do, and it didn't help. 

So if going to a functional medicine doctor would mean being told to do all these things I already tried, that would simply be a waste of my money. And that is really frustrating.

I feel like I keep running into a wall. I keep looking for answers and solutions to try to make things better or at the very least understand what is going on with my body and have diagnoses for these mysterious things that don't already have a diagnosis, but I feel like I'm at a dead end and don't know where to go from here.

The only thing I still have left to do is a test that I'm having next week, but that one still only may give me answers to one of the many issues I still have no diagnosis for. I am also going to look for a doctor who specializes in something I suspect I have but not sure how easily I'll find someone...

Basically... just wanted to update, even if the only update is that I hit a dead end... but at least I asked before I paid money for this doctor, so that I didn't throw that money down the drain being told to do what I've already done and didn't work for me.

3 comments:

  1. That's horrible. I'm so sorry you're going through it.
    I don't think there are easy answers. Like you, I found alternative medicine unhelpful, but allopathic answers took years to come--basically, we had to wait for certain symptoms to show up and then the path got a lot clearer. It's a serious limitation of modern medicine that it works by symptoms and individual systems rather than the body as a whole. Maybe that's how it evolved, or has something to do with money.
    For a lot of people the symptom approach works. (Got an infection? Here, take this.) But that doesn't apply to everyone.
    I hope you find answers soon. Or that the symptoms show up that the doctors need to pinpoint what's going on.

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  2. Have you ever been tested for lyme disease? it can be chronic and long term, and can express itself in many of the symptoms you have. but it is treatable, it just takes along time

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  3. Wishing you the best hope you can find out the answer

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