My experience with functional medicine

[Affinity]

Hi everyone,

It's been a while since I posted here but I have been pursuing functional medicine for fibromyalgia (FM) as I have been having so much trouble and nothing else seems to be helping. Please note that what I am writing here is my own experience an not meant to be prescriptive for anyone else.

To begin I was diagnosed with FM back in 2014 a couple of months after my daughter was born. I was 41 and had a lot of muscles and joint pain. I did not receive any treatment at that time, I thought FM was BS and didn't want to deal with it medically. And so I worked to manage it myself with food and exercise. And which I was able to be more active I was able to keep it under control for the most part for several years.

In 2019 I had some unrelated medical issues where I spent over a month on very strong antibiotics and I believe that threw my gut bacteria and whole system out of whack to the point I am still struggling to regain my health and physical abilities prior to that infection. I have taken probiotics, gone to physical therapy, even started taking Cymbalta (which helped with pain but emotionally made me feel completely depressed and dead to the world). I have read many books on FM by now and my conventional doctors seem unable to help me. I have been really struggling and then I get afraid that this will be my whole life in pain, unable to do basic things, always having to make excuses for why I can't live life how I want with my family.

Many of the books I have read on FM (most recently "The Fibro Fix" by David Brady) discuss functional medicine and so I decided to pursue that route, even though it is cost-prohibitive. Better to pay money now than live a life that is so miserable, I think. I had my first appointment back on January 22nd of this year and received the following diagnoses in addition to FM:
- Chronic fatigue syndrome
- Abnormal weight gain (gained 30-40 pounds in less than a year unexplained)
- PCOS (polycystic ovarian syndrome)
- Vitamin D deficiency (was already aware of this before appt)
- Acne (I am 48 so this is unusual)
- Possible hypothyroidism
- Possible B12 deficiency
- Possible anemia
- Possible diseases of musculoskeletal system and connective tissues

I was sent home from my initial appointment with a list of vitamins (B9, B12, zinc, selenium/brazil nuts, multivitamin, omega 3, probiotics, D3, magnesium) and a schedule for taking them. I was already most of these things but adjusting dosages and timing was probably helpful.

I was also sent home with instructions to follow a paleo style diet with no grains, no refined sugars/artificial sweeteners, no gluten, no beans or legumes including soy, no dairy (with the exception of sheep's milk cheeses, grass fed butter and ghee), with a focus on organic produce and grass fed, pasture raised meat sources. No farm raised fish allowed. I was told it is okay to occasionally eat sourdough bread as apparently the sour eats the gluten, but this would be an exception and not something to have all the time. Given that I have been mostly vegetarian with a diet heavy in grains and beans this was a pretty big change for me but I decided to implement the changes over time as I learned more about paleo and found more recipes as well. I was told that nutrition would be like 90% responsible for my recovery and so it would be very important to me to take responsibility for this part of my health. Having dealt with various eating disorders in my life I was very concerned to drastically change my diet but in fact it's been okay in practice as I have done a lot of work to recover from those eating disorders and have approached these changes mindfully. Included in this recommendation was to get a minimum of 150 minutes of exercise a week which was already in place for me but I am trying to increase intensity.

I was also sent home with a list of books to read including the following:
- "Hashimoto's Protocol" by Isabella Wentz
- "The Autoimmune Fix" by Tom O'Bryan (currently reading)
- "The PCOS Plan" by Jason Fung
- "The Obesity Code" by Jason Fung
- "The Diabetes Code" by Jason Fung
- "The Complete Guide to Fasting" by Jason Fung
- "The Plant Paradox" by Steven Gundry
- "The Hacking of the American Mind" by Robert Lustig (currently reading)
I admit I wasn't very happy about this list of books and I felt like they were going to be very gimmicky ... a response due to by previous disordered eating and dieting experiences. But I started with the books I found the least offensive and am about halfway through both that are marked as currently reading.

I had my second follow up appointment last week on February 19th to discuss my bloodwork (lots and lots of bloodwork). The blood tests indicated the following additional issues:
- Euthyroid sick syndrome
- Ovarian dysfunction/menopause (even though I still have my cycles my hormone levels are post-menopausal)
- Adrenal fatigue
- Anemia
- Non-alcoholic fatty liver disease

Due to these results and my personal experience so far on paleo I am starting the additional supplements and medication:
- T3IR (prescription)
- Iodine
- Progesterone (prescription)
- Testosterone cream (prescription)
- Pregnenolone
- Dexamethasone (prescription)
- Increase vitamin D
- Decrease B12
- Increase salt intake (pink Himalayan or Real Salt)
- 5-HTP
- Daily leafy greens and add red meat 3-4 times a week
- Digestive enzymes
- Ox bile
- DHEA
- naltrexone (prescription)

Several items are being watched with no action right now:
- Estradiol
- Chronic infections (tests indicate but they want to get other things in place first before addressing)
- Intermittent fasting is recommended but not until thyroid and adrenals are better functioning
- High cholesterol levels/prediabetic indicators to be monitored (expected to fall due to other changes)

I will be implementing these additional changes over the next couple of weeks as I get these supplements and medications. I am told this should make a big impact on my energy levels within 2 weeks of making these changes. I know it's a lot, and I don't want to tell you what it all costs because it isn't cheap, but I wanted to document this process here for anyone considering this route. Most of the prescriptions I received go through a compounding pharmacy which is made to order medication. I will follow up with updates and additional info as things change for me. I go back in 3 months with new bloodwork and hopefully a lot more energy and a lot less pain. So far I am not noticing much change but really the only thing that has changed so far is my diet and only completely for about 3 weeks.

I am also continuing with my physical therapy (since August 2020) which I am finding overall very helpful but that is another financial investment as well. All of this is being paid out of pocket. I have a high deductible PPO so some of these costs do get applied to my deductible but I am really paying out of pocket for PT, functional medicine doctor visits, labs, medication and supplements. Since I am buying higher quality foods my food cost has also increased somewhat as well. But I joined a local farm box delivery for weekly produce and they have the option to add pasture raised meats and eggs as well each week. And last week I decided to order a "Butchers Box" to increase my grass fed red meat intake as recommended.

I will keep you posted on how this journey goes ...
~ Nikki

 

[JayCS]

Hi Nikki! Good, I'm interested how you fare with it. I've tried very similar, to no avail, so I don't take most supps any more. Diet I have to keep a Mediterranean, vegetarian extremely healthy, natural diet anyway, due to IBSD and high blood fats. Despite gluten-free not helping after 2-3 months, I do keep my gluten-intake down just in case.

 

[Creola17]

I don't have a gluten problem but I wouldn't eat anything with wheat due to the poison they spray on it. Read "Wheat Belly".

 

[JayCS]

Hmm, after reading a few reviews of Davis' book, I'm not at all convinced, for me at least. He seems not just to concentrate on wheat, but gluten-free and low-carb. Both did absolutely nothing for me. Also I personally tolerate wheat and spelt with yeast or ferment much better than rye with sourdough. But I (have to) eat everything wholemeal, organic and 'healthy', as little poison on everything as possible. Maybe that's what Davis is suggesting, just that that sounds too health-nutty for most...

 

[Creola17]

I was wondering why the doctor suggested sheeps milk instead of goat. I've never had or seen sheep's milk. I hear the ice cream is really good but I'm in Nevada and can only find in California.

 

[JayCS]

I've always wondered about the difference, so I've just read it up: goat milk is more tolerable and the fats are easier to digest than cow milk, whilst sheep milk is more tolerable and more nourishing, but also has more fats, both have more minerals etc.. Part of the reason they are healthier will also be that their use is not as industrialized even as organic cow products. We get all kinds in our organic food stores here in Germany. If that's not the case maybe you can look around if anyone keeps sheep privately...

 

[Affinity]

Hi Nikki! Good, I'm interested how you fare with it. I've tried very similar, to no avail, so I don't take most supps any more. Diet I have to keep a Mediterranean, vegetarian extremely healthy, natural diet anyway, due to IBSD and high blood fats. Despite gluten-free not helping after 2-3 months, I do keep my gluten-intake down just in case.

Hi Jay, sorry for the delayed response, I didn’t get any notifications so out of sight out of mind!

In the past I’ve had a similar experience to you, where I have taken a lot of supplements I am not convinced they’re working. However, I am really pleased with how things are going so far with this protocol. The supplements are designed specifically for my needs based on my blood work. For example, at first she told me to take 5000 MCG of B12, but after my bloodwork she saw my B12 levels were good and so she reduce it to 1000 MCG. My vitamin D however, she increased from 5000 IU daily to 10,000 IU daily based on my blood test.

I’ve eaten a mostly vegetarian diet for most of my adult life, lots of beans and grains and veggies. The shift to Paleo has been easier than I expected, but I am still getting used to it. I think one part of the reason I like it so far is that I really do feel pretty good. I still have a sweet tooth, but I am trying to make Paleo compliant treats which is actually working well. But lots of veggies, some meat and nuts and fruit.

I had gone gluten-free previously, for probably around six months, and I didn’t notice a huge difference. But this time it’s gluten free plus grain free and I do think it’s making a difference. I’m currently reading the book “the plant paradox“ and in that book he explains why all grains of which wheat is just one.

But overall I’m very happy to report that I am doing really well. Like I’m almost shocked at how much energy I have recently. Things like cleaning the house, doing things with my family, things that previously I could hardly do if at all, are now already so much easier for me. Another name for functional medicine is “restorative“ medicine because it restores the function that has been compromised in order to get it back to optimal functioning. And even though it hasn’t been that long, I am very happy to say I think it’s working great so far. And the office I go to says it usually takes 8 to 12 months for someone to see recovery from fibromyalgia and cfs.

 

[Affinity]

I don't have a gluten problem but I wouldn't eat anything with wheat due to the poison they spray on it. Read "Wheat Belly".

I have not yet read that book, but that’s part of the reason for avoiding gluten. I actually never thought I had a gluten problem either, I did cut out gluten previously for about six months and I didn’t really notice on a difference. But one of the tests the doctor ran was a gluten sensitivity test, and I did indeed have some antibodies to gluten, showing that my body was fighting gluten and creating inflammation in the process. I was shocked by that because I seriously didn’t think it was an issue at all for me.

 

[Affinity]

Hmm, after reading a few reviews of Davis' book, I'm not at all convinced, for me at least. He seems not just to concentrate on wheat, but gluten-free and low-carb. Both did absolutely nothing for me. Also I personally tolerate wheat and spelt with yeast or ferment much better than rye with sourdough. But I (have to) eat everything wholemeal, organic and 'healthy', as little poison on everything as possible. Maybe that's what Davis is suggesting, just that that sounds too health-nutty for most...

I haven’t read that book either, but what I have read in other books explains that grain free (including wheat) is important for various reasons, Not only for the pesticides. The real issue is with leptins and gluten is one type of leptin. I am not an expert, I am just following the recommendation I was given.

In the past I think I eat a lot like you Jay, and it sounds like you have figured out a lot of what is working for you. I have spent years eating “healthy“ which is been plant-based whole food mostly vegan for me and I have continued to get sicker, even though I believed how I was eating would help to heal me. If it’s working for you I say that’s great! I think all of our bodies are different and sensitive to different things even if we have a lot of overlapping symptoms.

 

[Affinity]

In some of my reading they have talked a little bit about cow milk and because it’s so processed and pasteurized it’s not a natural food anymore. Often raw milk is considered ok to have, but only if it’s full fat, but I am not sure if I can even get raw milk here in Texas. There is also a thing about different breeds of cattle having different proteins in their milk and the most common mass market dairy cows originating in Northern Europe) have a protein that is harder to digest or something but if you can fill milk from certain Southern European cows their milk is more digestible because they don’t have that protein in their milk. That’s what I read, anyway.

With sheep’s milk cheese is I have noticed that a lot of them are raw and made more traditionally and so I think that makes them more digestible.

 

[Affinity]

I was wondering why the doctor suggested sheeps milk instead of goat. I've never had or seen sheep's milk. I hear the ice cream is really good but I'm in Nevada and can only find in California.

My reply above was directly to this ^

 

[Affinity]

I didn’t realize you were in Germany, Jay! A lot of the wheat in Europe is considered so much better than in the US because the US uses roundup ready GMO wheat and often these authors talk about being able to eat bread in Europe but not in the states.

 

[JayCS]

Ah, thanx for clearing that one up! - and nice to see you're back, btw, missed ya! (Hadn't realized Nikki = Affinity... )
(Had to keep visits here a bit more more sporadic myself, due to struggling with trying to work a bit. Going down even more after Easter. Must've skimmed over your thread-starter without seeing who you are...)
Quite some people in Germany eat partly-wholemeal, too. We usually only get the 100% wholemeal bread etc. I need in organic food stores tho. And there wheat has been generally completely replaced by spelt, due to better/different gluten, more amino acids, Mg, Fe, B-vitamins and tryptophan. Wholemeal rye bread is considered more healthy, but sourdough hyperacidifies my stomach, as the name suggests.
Since needing a Mediterranean diet due to cardiovascular issues, I've gone down more with carbs, i.e. bread.
An alternative health practitioner had brought up the question of legumes last year (while suggesting gluten-free and reducing rice due to arsenic, which I hadn't realized yet). However all my docs and my wife would scream if I did that, because I already have to leave off so much.
You haven't mentioned nightshades yet? I've had to wean off tomatoes (hyperacidity in stomach and colon-end) and last time I ate potatoes I had a bigger problem than usual. Peppers seem to be fully OK. Eggplant/aubergine I hardly eat anyway.

 

[Affinity]

Ah, thanx for clearing that one up! - and nice to see you're back, btw, missed ya! (Hadn't realized Nikki = Affinity... )
(Had to keep visits here a bit more more sporadic myself, due to struggling with trying to work a bit. Going down even more after Easter. Must've skimmed over your thread-starter without seeing who you are...)
Quite some people in Germany eat partly-wholemeal, too. We usually only get the 100% wholemeal bread etc. I need in organic food stores tho. And there wheat has been generally completely replaced by spelt, due to better/different gluten, more amino acids, Mg, Fe, B-vitamins and tryptophan. Wholemeal rye bread is considered more healthy, but sourdough hyperacidifies my stomach, as the name suggests.
Since needing a Mediterranean diet due to cardiovascular issues, I've gone down more with carbs, i.e. bread.
An alternative health practitioner had brought up the question of legumes last year (while suggesting gluten-free and reducing rice due to arsenic, which I hadn't realized yet). However all my docs and my wife would scream if I did that, because I already have to leave off so much.
You haven't mentioned nightshades yet? I've had to wean off tomatoes (hyperacidity in stomach and colon-end) and last time I ate potatoes I had a bigger problem than usual. Peppers seem to be fully OK. Eggplant/aubergine I hardly eat anyway.

I am currently in the process of removing nightshades. It was recommended from the start back in January but I am one who needs a slow transition. I just finished reading "The Plant Paradox" and there is a lot in there about lectins in nightshades and so that is one of my current things I am working on. The way it is explained in the book the lectins (proteins that can cause issues) are in the skins and the seeds, and for some lectins you can destroy them with pressure cooking (some but not all). So for example roasted red peppers are ok because the seeds and skins are removed. Also tomatoes are ok only if either the seeds and skins are removed or the tomatoes are pressure cooked. But I am still transitioning with this one and trying to figure out what works for me. In the past we have eaten a lot of tomatoes and potatoes, some peppers, but hardly any eggplant (my husband dislikes eggplant), so the tomatoes are the hardest for me to get used to not having. Potatoes, too, but sweet potatoes are a decent substitute and I am experimenting with some other resistant starches like yucca and green plantains. On the bright side the author wants you to eat an avocado daily and that is something I am really enjoying! So right now I am eating a lot of greens and cruciferous veg, avocados, nuts, some sweet potatoes, pasture raised eggs and grass fed beef with wild seafood on the menu, too. There are a few grains allowed (millet and sorghum) but I haven't added those in yet. And dark chocolate is allowed in small quantities as well ( due to the polyphenols). Overall I am feeling a lot better than a few months ago although I still have a long ways to go to get where I want to be. But my energy is better, my depression is lifting, and I think getting my hormones in better alignment is really going to help in the long run.

 

[Creola17]

Affinity, if you need any recipes email me. I make a tomato free sauce that is excellent. Even my Italian husband likes this! I didn't know about the seeds and skin so thank you. The white or purple potatoes are the best substitutes for flavor and cassava or yucca is great also. There's a pizza crust you can buy by dairya made with almond flour that's wonderful.
Also a great no tom ketchup that tastes better than regular. Made with beets, sweet potato and carrots.
I will say it's been 6 years on this diet and I have less flare ups and they last for alot less time. My worst flare up without the diet lasted weeks to months, on the diet the worst lasts 3 days to a week.