Advice on alternative to medications for a newbie

We have to be careful on this site with wording. Please try not to put medication opinions stated as facts. We are not healthcare providers here and we want all members to see their doctor before changing any medications. I know you mean well we just have to be careful. Thanks !

Davey
Moderator

I personally don’t have Thyroid issues though my cat does. Fibromyalgia is a tricky disease. A lot of doctors like to use it when they don’t know what the problem is. If someone has other underlying health issues it’s hard to know if the problems we are feeling is from that or indeed fibromyalgia. I have several underlying health issues. It can be very confusing.

Davey
Moderator

What can be wrong about saying a certain thyroid med may NOT convert to what is needed? Everyone is adult and asks MD’s questions, I hope…some don’t.

@jaminhealth
Hi Jamin,

I wasn’t trying to cause frustration to you and that isn’t why I said what I said. Stating “many are on the wrong thryoid meds if they take them” is what I was referring to. I wanted to simply point out that on this site we need to be careful how we word things fact vs. opinion. You didn’t do anything wrong and I’m not giving you attitude or trying to cause direst to you. You clearly know more about the thyroid than I do but saying many people are on the wrong thyroid medications if they take them may have members panicking. Other members don’t know if you hold an RN or a PHD so my point in my message was simply to state to just be careful, if you could, on your wording. Thank you ahead for your understanding. I know @ModSupport has explained the best way possible to you regarding these types of sentences. Having said more than I had planned, please accept my once and last response on the matter. I hope you are doing well, staying healthy, and staying safe.

Take care,

David
Moderator of Ben’s Friends and fellow Fibromyalgia sufferer.

I didn’t SAY many are on wrong thyroid med…I may have said some may be on wrong thryoid meds, which is very very possible.

Why do so many want to put other words in people’s mouths and thoughts.

There are more than 1 thyroid med and often many could be on the wrong ones. It took me years to get it right and I appreciate other’s opinions…opinions are what we have…

I am not an RN or hold a PhD but struggled for a lot of years tryiing to get the thyroid optimal for good health.

And you didn’t cause me any frustration.

Hi there, and a very happy birthday, @jaminhealth, if the birthday-cake-symbol is correct… :slight_smile:
I’ve been curious about this dug-out thread :wink: for a while, for a reason I don’t know, praps cos I’m always interested in alternatives cos I don’t tolerate chemical meds (or praps cos of the way the thread keeps getting dug out… ).
But suddenly I’ve realized I’m interested in the topic thyroid, cos I was diagnosed with a mild hypothyroidism issue 6 months ago by a centre for rare diesease, whilst an endo 12 months ago said my thyroid is completely healthy. I however have severe fibro, so @jaminhealth: the opposite to you, praps, as you say in the 19th post of this thread (Dec 2020). But no matter, my GP (who also dabbles a bit in alternative med) wants to check my thyroid every 6 months, so he took the bloods today and checked: the gland itself looks good.

Now I am personally interested in the thyroid-fibro connection you mention and David was interested in, in the 17th post (Dec '20)
and what is contained in the “dessicated thyroid support” you, @jaminhealth, mention in the 15th post of this thread (Feb '20, a year ago).
Also interesting how of all docs an endo dr. c’d diagnose fibro as you mention in the 18th post, I w’dn’t’ve thought that is possible, but then my first rheum. complained why people were always giving rheums the onus of diagnosing fibro, altho it is not rheumatological. So who not an interested endo doc…
And what you meant/what the background is when you wrote “many are on the wrong thyroid meds if they take them” in the 19th post (Dec '20), or rather now “some may be on wrong thyroid meds” in the 27th post (Feb '21).

What I’ve found up to now is
… the symptoms for which the product “Thyroid Glandular (Raw Desiccated Thyroid)” is said to be for are energy, weight (metabolism one way or stress the other), brain function, joint and muscle pain, mood & happiness, deeper, more restful sleep. These are all fibro-symptoms, there seems to be quite some overlap. Just that fibro is quite a bit more, too, but then thyroid probly too, I seem to remember body temperature can be very askew.
Here you can see further connections…:

“The disease is often considered to be autoimmune in nature and has now been linked to Hypothyroidism, a condition where the Thyroid fails to produce adequate concentrations of T3 and T4 hormones.
By better understanding, this possible connection, patients with either of these conditions can be screened for the associated disease, which may provide more data on why symptoms experience are more severe than what is expected.”

… contents of Dessicated Thyroid Support, or Natural Desiccated Thyroid 101 (NDT) or similar:
a product called GTA-FORTE II (Desiccated Thyroid Support) contains:
Zinc (as zinc gluconate) 10 mg
Selenium (from vegetable culture) 26 mcg
Copper (as copper gluconate) 0.25 mg
Rubidium (from vegetable culture) 5 mcg
Porcine Glandular Concentrate 20mg
Superoxide Dismutase (from vegetable culture) 20 mcg
Catalase (from vegetable culture) 20 mcg
Interesting here that there are minerals in there which I have already tried and didn’t help. On other sites Magnesium and Vit. D are mentioned, also things I’ve taken a lot. But also a pig-thyroid substance, which I’m not sure I’d want to, however “natural” that may be - also I’m vegetarian.
Another natural product called Thyroid Support contains mainly: Ashwagandha, Seaweed, Kelp, and Schisandra and is vegan, so obviously completely different (plus vegan, which sounds less dangerous to me). Interesting for me, cos I was thinking of trying Ashwagandha, just asked my GP about it today.

… regarding taking wrong meds
You seem to be suggesting to be careful, cos looking things up has shown me that taking things for the thyroid can be helpful but also dangerous, as far as the synthetic and the natural versions are concerned, so docs, sufferers & supplement companies are wanting to “dispel myths” in the one direction and in the other, and even a short research makes it sound like a bit of a flame war. Plus I’ve known platforms for months now on which direct avid flame wars have over the years regularly been fought between thyroid- and fibro-sufferers, about who is right and who is wrong, so I think it’s important to listen to the arguments of all sides, question everything and talk about this friendly and carefully and just let sufferers from both sides find their own way.

My own semi-conclusion is to carefully, hesitantly look further. All studies about fibro-causes are far from conclusive. None of the many herbs & supps I have tried up to now have helped in any way, even when I followed the exact regime of the advocates (docs), so I am not going to jump for this quickly. Also reading things like joint problems - I can feel that my tendon insertions are the reason for my apparent joint problems, never the joints themselves, no swelling, no arthritis. But let’s see what my GP finds and suggests for my thyroid…

I’m not sure what you are asking here. Desiccated thryoid meds contain T4,T3, T2,T1 and Calcinaton (sp) (form of calcium) whereas Synthoroid and Levo contain only T4…and it’s expected that people will convert the T4 to T3 etc and what I often hear is that many do not. I know in the beginning of all my mess, docs tried me on Syn/Levo and I was falling over with fatigue.

Armour may have been the First thyroid med produced. And history has it when Syn/Levo appeared on the market, they worked hard to brainwash medical schools to push only Syn/Levo and there were even lawsuits back then.

The D.O. that finally got me feeling good was from the old school and knew right away and called in for Armour, no tests, etc and in 4 days I was free of depression…that was in 2002.

I hope that is what you want to know. And I have followed STTM group for some time and also thyroid support group yrs ago. I learned a lot. STTM believes for optimal thyroid, TSH needs to be at low end of range, and T4/T3 need to be upper end of range.

I deal with alot of body pain from advancing OA and a damaged body from hip replacement and advanced age. And I could be worse on the wrong thyroid med for me.

Jaminhealth, there’s nothing wrong with that, except that you say it as if it is a fact, and you say it without any context of your personal experience. This is a site for social and emotional support, and the bottom line is that our conversations about medications and medical issues need to be connected to that.

So let’s look at this with a bit more thought.

“Someone” says

I can add here, and many are on the wrong thyroid meds if they take them, t he synthetic ones contain only T4 and a lot do not convert to T3 in their bodies

The questions that spring to mind are

  • who says that many are on the wrong meds?
  • T4 and T3 … say what, huh? :stuck_out_tongue_winking_eye:
  • where is this information coming from?

Now read this:

I was feeling so sluggish, and a couple of my friends said it might be my thyroid. So I asked the doctor she told me that many people are on the wrong thyroid meds if they take them, and that the synthetic ones contain only T4 and a lot do not convert to T3 in their bodies. (Different kinds of thyroid hormones, I read up on those.) That made me feel a bit uncertain, so I decided that maybe I’d just try one of the dessicated thyroid support supplements. When I asked the pharmacist, she said that it was ok to take it with the grape seed supplement. Anyway, I think it’s helping. On a good day.

Same info. But in this case, the information is told in the context of the person’s life experience. The bottom line is that we know nothing about you beyond the tiny bit you’ve told on your profile. You sail in, pronounce on medications and leave without our having any knowledge of “where this comes from”. You display no empathy, nor do you offer emotional or social support to others who are here. When challenged by a moderator, you respond in a very defensive manner. The way you say things can make people feel as if they are stupid, or being judged and put down. (I have received complaints about this.)

We are here for social and emotional support. Medical information (which, yes, is part of that) must be shared in that context, and where presented as factual, need to be attributed to a reputable source.

This is what we are here for, and that is why your moderator (and I previously) have challenged you on the things that you say, and how you say them. Please don’t ask us to explain it again.

Seenie from ModSupport

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If you folks are having thyroid issues, get involved with a thyroid support group like STTM, I’ve been that route and I don’t know what you expect from me. I’ve told you what works for me what didn’t. Read some books, I have Mary Shoman’s HypoT book and Janie’s STTM book I bought them both yrs ago. Thanks.

These are wonderful suggestions. I have done restorative/mild yoga classes that relaxed me. I will look into the MLD massage, as I couldn’t tolerate others. Aqua therapy and music are always good.

Restorative yoga sounds good to me! Must see if I can get that locally

C

Just had a quick look at restorative yoga positions. Most use long stretches, like in yin yoga, which I can’t tolerate. You use cushions to polster yourself tho, so I spose you don’t have to do them as perfectly as they suggest. I myself seem to need everything hard(?) ‘n’ fast, whether stretches, cold, workouts, etc. :blush: OK, quite a bit is soft ‘n’ fast. @ModSupport = C: Praps try it using the web first?

The osteopath I used before my acupressurist did some MLD (lymph drainage) on me and it seemed good. But cos I don’t have any swellings, my physios didn’t find it that important to do. I started doing it on myself, with the help of web tutorials, due to the suggestion of my alternative health practitioner that I might have problems with my arteries, which turned out more to be the veins (both hardly visible, but…) Got enough other treatments which are helping more and have to have time to work.

That’s a good idea. Has anyone tried an online yoga class?

C

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My mum & my sis do. If I did, it’d suggest to me to do more than I actually can. What motivates others overmotivates me! So it’s better for me just doing it at my own pace for 2 or 5 minutes in between, several times a day with the help of exercises from my DVD or youtube. Or like at the moment using my twist-stretching hack (with the ballet positions) every few minutes of the day for 10-30’’…

Zinc sfx

(as zinc was mentioned above)

My acupressurist (also fibromite) was & looked very poorly today, but wanted to at least do 1h of treatment, the easier parts: Afterwards I - as ever in detective mode :face_with_monocle: - looked up her 2 main symptoms (nausea and shivering in very warm swimming pool water, altho she’s a swimming and diving teacher) and supps (vitamin B complex plus C, then silicium, and 30mg zinc methionite, as that’s more bioavailable) - I’d already had a bad feeling about zinc before and had stopped taking some after seeing I had high zinc levels… that was dead right:
Result: 30mg zinc was apparently an “overdose” for her. The bioavailability maybe had made it worse. Vitamin B6 may also have been involved as that also can cause nausea.
So what do we learn from that? For some supps you do need to get your bloods checked first, make sure you know what you are taking when, start carefully, and if you prefer to take them without checking the sfx first, do it immediately you have new symptoms, even if you think you know what from.

This is a quick helpful reliable reminder of the sfx: Zinc Supplement (Oral Route, Parenteral Route) Side Effects - Mayo Clinic
(credits IBM Micromedex, which btw combines clinical evidence with Watson/AI= artificial intelligence - which may be the future of fibro diagnostics, altho I’m very scared of AI…)

Rare sfx: Chills, continuing ulcers or sores in mouth or throat, fever, heartburn, indigestion, nausea, sore throat, unusual tiredness or weakness
Symptoms of overdose: Chest pain, dizziness, fainting, shortness of breath, vomiting, yellow eyes or skin.

A reliable German page (zinc pharma company) adds: metallic taste on the tongue, diarrhea, headache.
Another adds: skin reactions.
Another: 7mg is enough for women. Over 25mg/d can lead to sfx. 100g of beef already contains 6mg. When it’s in you, you just have to wait till it subsides, and alleviate the symptoms, there’s no way to get it out faster.

German version/details.

Ich erinner mich, dass ich Zink reduziert oder abgebrochen hab als ich die vielen Nebenwirkungen gesehen hab, und meine Blutwerte schon am oberen Rand waren.
Trotzdem hat andererseits mein Hausarzt neulich nochmal Zink empfohlen, unbesehen.
Werd ich ihm nochmal stecken, denn ich hab tatsächlich auf Empfehlung von S. Zink und Selen mit checken lassen!

Zum Kältegefühl gabs sonst wenig, am klarsten hier, immerhin aber von einem Hersteller, STADA.
Zu viel Zink: Überdosierung & Zinkvergiftung | Curazink®.
Die meinen mit Überdosierung oder Vergiftung natürlich was anderes als wir… :wink:
Aber an Nebenwirkungen stehen hier, aber nicht alle auf obiger Überdosierungs-Seite:
Zink Nebenwirkungen: Wann wird Zink schädlich? | Curazink®
Müdigkeit, Metallischer Geschmack auf der Zunge, Bauchschmerzen, Übelkeit, Durchfall, Erbrechen, Kopfschmerzen.

Hier fehlen Bauchschmerzen & Durchfall Zink: Nebenwirkungen - Onmeda.de

Hier gibts viele gute Infos:
Zink Nebenwirkungen: Die wichtigsten Fragen und Antworten | Sundt Nutrition

Bei einer Überdosierung von Zink kann Kupfermangel die Folge sein.(4, 10) Das zeigt sich häufig durch

´* Blutarmut: die Symptome sind Schwindel, Kopfschmerzen oder Atemnot bei Belastung

  • Mangel an weißen Blutkörperchen: mit niedrigem Blutdruck, häufigen Infektionen oder erhöhter Temperatur als Symptome
  • Neurologische Symptome: Schwäche, Schwindel, Schlafprobleme und viel mehr

Diese Symptome sollten nicht unterschätzt werden, da sie weitere schwerwiegende Folgen mit sich führen können. Die benötigte Dosis von Zink kannst du durch einen Bluttest beim Arzt feststellen lassen und Zink nur nach Absprache supplementieren.

Wie lange halten Zink Nebenwirkungen an?

Es wird unterschieden zwischen sofort auftretenden Reaktionen und nachträglichen Nebenwirkungen. Nebenwirkungen vom Soforttyp treten unmittelbar nach Einnahme ein. Sobald der Körper das Medikament aufgenommen hat und der Wirkstoff vom Magen-Darm-Trakt in die Blutbahn gelangt, reagiert der Körper mit Abwehrreaktionen auf das eingenommene Medikament.

Du kannst feststellen, dass es eine Nebenwirkung ist, wenn die Symptome immer mindestens eine Stunde nach Einnahme des Zinkpräparats eintreten. Diese Symptome halten in der Regel auch nicht lange an und lassen sich schnell lindern.(5)

  • Müdigkeit ist eine häufige Nebenwirkung einer zu hohen Zinkdosis. Jedoch ist es auch ein Symptom für andere Krankheiten und Mangelerscheinungen. Lasse hier unbedingt deine Blutwerte checken.

Nebenwirkungen vom Spättyp sind langwierige Folgen von einer Überdosierung. Eine zu hohe Dosis von Zink kann Kupfermangel auslösen und dieser beeinträchtigt die Blutgesundheit und auch das Nervensystem.

In einigen Fällen müssen diese Symptome zusätzlich mit Medikamenten therapiert werden. Häufig sind diese Symptome zwar nicht dramatisch, können jedoch unbeachtet zu größeren Schäden führen, weshalb hier eine Absprache mit einem Arzt besonders wichtig ist.(6)

Wie kann man Nebenwirkungen von Zink verhindern?

Falls eine Unverträglichkeit von einem Stoff festgestellt wurde kann man künftig darauf achten diesen speziellen Wirkstoff und benachbarte Stoffe nicht mehr einzunehmen. Das würde dein Arzt für dich herausfinden und kenntlich machen, damit auch Apotheker und andere Ärzte darüber Bescheid wissen und Nebenwirkungen vermeiden können.

In erster Linie solltest du jedoch auf eine passende Dosis und auf einen überschaubaren Einnahmezeitraum achten. Nur so lassen sich Nebenwirkungen von Zink Präparaten gezielt vermeiden. Die genaue Dosis lässt sich anhand eines Blutbilds ermitteln.(7)

Behandlung von Zink Nebenwirkungen: Drei Tipps zur sofortigen Linderung

Bei Nebenwirkungen kann man Maßnahmen ergreifen, die diese lindern und erträglicher machen. Im Folgenden haben wir einige Tipps gesammelt, die dir dabei helfen mit Nebenwirkungen umzugehen.

Übelkeit und Erbrechen

Ausreichend Flüssigkeitszufuhr und das Einnehmen von leichter Kost kann das Brechzentrum im Gehirn davon abhalten das Erbrechen auszulösen. Ingwertee oder Ingwerwasser kann Übelkeit und Erbrechen lindern.

Kopfschmerzen und Konzentrationsschwäche

Frische Luft und ein kaltes Unterarmbad kann den Kreislauf und die Durchblutung anregen und Kopfschmerzen lindern. Auch das Auftragen von Pfefferminzöl auf die Schläfen sorgt für einen kühlenden Effekt. Der Geruch hat eine entspannende Wirkung und löst Kopfschmerzen ähnlich gut wie eine Kopfschmerztablette.

Magen Darm Beschwerden

Ein gereizter Darm reagiert mit Durchfall. Man kann den Darm beruhigen und entlasten, indem man auf leicht verdauliche Lebensmittel zurückgreift und darauf achtet den Elektrolythaushalt im Körper aufrechtzuerhalten, dafür gibt es fertige Elektrolyt-Lösungen in Apotheken. Hast du das nicht zur Hand kannst du auf leicht bekömmliche Tees und Wasser zurückgreifen.

Dosis-mäßig steht hier “So kann die Einnahme von 25 Milligramm über einen Tag verteilt bereits Nebenwirkungen hervorrufen (4).”
Symptome einer Zink Überdosierung: Die wichtigsten Fragen und Antworten
Und hier wird empfohlen: Frauen und Mädchen ab 7 Jahren sollten täglich 7 Milligramm Zink zu sich nehmen.
Aber auch: Sind Sie gesund, reicht eine ausgewogene und gesunde Ernährung aus, um den täglichen Bedarf an Zink zu decken. So enthalten beispielsweise 100 Gramm Rindfleisch schon rund 6 Milligramm Zink.
Außerdem: Einmal im Körper können Sie Zink nicht wieder herausbekommen. Bei einer Überdosierung bleibt also nur, die Zufuhr zu reduzieren und die Symptome zu behandeln, bis der Körper wieder einen Normalwert an Zink erreicht.
Zink überdosiert: Folgen und erste Hilfe auf einen Blick | FOCUS.de

Dies ist auch vertiefend interessant, aber die Wechselwirkungen sind nur, dass Zink entweder vermindert aufgenommen wird,
oder etwas anderes durch Zink, aber nicht verstärken:
Wechselwirkungen, Nebenwirkungen, Gegenanzeigen von Nahrungsergänzungen | Verbraucherzentrale.de
Gegenanzeigen

Akutes Nierenversagen 136
schwere Niereninsuffizienz 136

Nebenwirkungen

Bei hoch dosierter Einnahme: Magen-Darm-Probleme, Kopfschmerzen 21
Verdauungsbeschwerden wie Übelkeit, Erbrechen, Magenbrennen, Durchfall 136
Hautreaktionen 136
Bei langfristiger hoch dosierter Einnahme: Kupfermangel, Beeinträchtigung des Immunsystems. 22

Wechselwirkungen

Zink vermindert die Wirkung von bestimmten Antibiotika (Tetracycline, Ciprofloxacin, andere Chinolone). Einnahmeabstand zwischen Medikament und Zink-Produkt: mindestens 2 Stunden . 21

Komplexbildner wie Penicillamin (ein Medikament zur Behandlung rheumatischer Arthritis), Dimercaptopropansulfonsäure (DMPS) oder Edetinsäure (EDTA) können die Aufnahme von Zink verringern oder die Ausscheidung erhöhen. Einnahmeabstand: 2 Stunden. 21

Bei gleichzeitiger Einnahme vermindert Zink die Aufnahme von Bisphosphonaten (gegen Osteoporose) - zeitlicher Abstand nötig. 107

Eine hohe Zinkzufuhr bei gleichzeitig niedriger Kupferzufuhr beeinträchtigt die Aufnahme von Kupfer. Da Kupfer eine Funktion im Eisenstoffwechsel hat, kann es so zu einer Blutarmut (Anämie) kommen. 86
Bei längerfristiger Anwendung (mehrere Monate) von Zink sollte auch Kupfer labordiagnostisch überwacht werden. 21

Nahrungsmittel mit hohem Gehalt an Phytinsäure (z.B. Vollkornbrot) verringern die Zinkaufnahme und sollten nach einer Einnahme von Zink vermieden werden. 22

Nahrungsergänzungsmittel mit Zink deswegen möglichst nicht zu einer Mahlzeit mit Getreideprodukten, Hülsenfrüchten oder Nüssen nehmen.

Die Aufnahme von Zink in den Körper kann ebenfalls vermindert werden, wenn gleichzeitig Eisen, Kupfer oder Calcium genommen wird. Genau so kann Zink die Aufnahme von Kupfer, Eisen und Calcium verringern. 21 Außerdem hemmt Zink die Aufnahme von Kupfer und Chrom. 77

Quellen:
21 Gebrauchsinformation Zink Verla® 10 mg (enthält Zinkgluconat), Stand: März 2018
22 Zinksalze in Mundwasser und Zahnpasta. Stellungnahme Nr. 011/2015 des BfR vom 6. Mai 2015
77 EFSA (2018): Overview on Tolerable Upper Intake Levels, Version 4. European Food Safety Authority
86 D-A-CH-Referenzwerte für die Nährstoffzufuhr, 2. Auflage, 6. aktualisierte Ausgabe, 2020
107 H. Grosse Neben- und Wechselwirkungen von Medikamenten. Verbraucherzentrale Düsseldorf, 1. Auflage 2019, S. 76
136 Pharma Wiki: Zink. Stand: 13.04.2020

Wow, JayCS! That is really interesting. I started reading your post and I thought “Oh, this one needs to go to the Complementary Therapies section of the site.” But I read on, and I realized what a great cautionary tale it is.

We always say "Tell your doctors (and your pharmacist too) about everything you take and do, especially in the case of supplements."

You really are a sleuth, aren’t you? I picture you with a pipe and a Sherlock hat. :upside_down_face:

Seenie

2 Likes

Yep, but my doc and my pharmacist say/“know” nothing about zinc sfx! - Same with everything I’ve taken, whether med, supp or herb. They all only concentrate on the fx. I don’t trust anyone any more who doesn’t immediately tell me the sfx, and none of them do. The reasoning is patients’ll get the sfx if they hear or read about them (nocebo effect). That’s not my experience, after all I’ve tried, deliberately not looking at the sfx before. I get the sfx, and used to look them up too late unless my skin or seizures were exploding. Now I try to know beforehand what to expect and can do something about it quickly. I get less sfx now than before, because I start treatments more carefully.
I’ve had docs prescribing the same med again, and upon my objection a similar one, even after having said I’d gotten considerable sfx… None know anything about how my seizures work except my neurologist, none about how my skin works, none about my acid & IBSD (none about my back, bladder etc.).
And if at all, docs or pharmacists may know a few of the 10s of sfx of meds, which wdnt help me even if they recognized them (I often get the more unusual ones), and they know hardly any of the sfx of supps & herbs, not even those they recommend, like my GP recommends zinc without measuring the zinc level first.
The problem is also that they only tell me it might be 1 of the sfx of a certain med if I ask exactly that. If I just complain of a symptom, they will first give me something new to put on the pile (meds or operations). If I ask if it cd be a sf of something, they will need a reminder and long look at what I am taking, incl. supps&herbs, altho it’s not much. And if I say what I am suspecting, then I’ll still usually be better or just as well off using the web. But to get that far, I need to know what I am looking for…
And I’m not bashing here. As I keep saying: Modern medicine is quite good, but only for easy monocausal conditions, and that’s not its fault, it’s just the human body is much more complicated. Functional / alternative / holistic medicine etc. may be better at seeing the complexity, but still doesn’t have ‘enough’ answers and often dabbles in vagueness and a too fixed mindset. I say that from always having had a very complicated human body myself, the mystery of which medicine of all types has unravelled only a small bit, despite my 45+ docs in 1.5y, but also having had quite a lot of insight into what medical training entails and also how practitioners think and what they know, as I can talk with them at eye-level because of that. It’s often a case of me educating them so they can educate me back with background I don’t yet know.

So yes, it’s only DIY sleuthing :male_detective: for me, watching my body (fairly) closely and using the experience of people (more users, occasionally practitioners) on the web and trying everything sensible carefully with a sense of proportion - with success, not like before. But talking with my docs/practitioners about all of it, and using their occasional ideas too. OK, even their last ideas weren’t good for me, but I’m always up for trying something new…

BTW I have difficulty separating complementary from main/med therapies for FM considering

  • there are no therapies that are considered to reliably help a lot of us (2021 meta-analysis)
  • some complementary methods like exercise have just as much evidence as a few meds.
  • only 3 meds approved for fibro by the FDA, and these only help a small part of us
  • my mainstream rheum./fibro clinic didn’t use meds, only complementary methods.
    I’d argue only things like homeopathy or aromatherapy are not evidence-based enough, so complementary, whilst most things named in this thread like yoga / aqua fit & similar exercises / diet (e.g. Mediterranean!), and also zinc, do have some evidence from mainstream studies recommending them, the first 3 for FM, zinc for pain.

SHOCK AND AWE!!! (OK, maybe not shock, but bigtime AWE for sure.)

What a thoroughly thoughtful, nuanced and multi-dimensional response. But I think that’s what we’ve come to expect from JayCS.

Our usual caveat and chorus,
“Tell your doctors (and your pharmacist too) about everything you take and do, especially in the case of supplements.”
is our normal, average everyday garden-variety response when people start to talk about supplements. What we absolutely cannot have is people trying this and trying that just because they read it on Ben’s Friends. And then (heaven forbid) when they come to really bad grief, blame it on us. Nope, we need to keep this community supportive and safe.

But we couldn’t call you a “normal, average everyday garden-variety” member! Your extremely complex and interesting views, thoughts and self-experimentation, is uniquely you, and I doubt that anybody here who would read them would mistake what you say as an open invitation to go ahead and experiment with this or with that.

Thank you as always, JayCS, for the interesting things that you share with us. :heart_eyes:

Seenie from ModSupport

1 Like