I'm so confused and lost

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chance1252

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Jul 13, 2022
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DX FIBRO
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07/2022
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US
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VA
So I went to the doctor they did the test to rule out lupus and other autoimmune and they did. It is most defiantly fibro so my PCP referred me to rheumatology but they are saying they don't deal with fibro maintenance they only rule out other autoimmune and since that was done they denied my referral. So where do I go from here? I started Cymbalta my psychiatrist started that. But I don't know what doctor I'm supposed to go to for this?????
 

cookiebaker

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Jul 26, 2022
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662
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
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WI
a great many rheumatologists do not deal with fibro... you need to find someone that does - might be a primary, might be someone else..
if you are in an HMO, go thru the doctors lists, see if you can find someone that specializes in fibro.
Otherwise, ask around.. talk to your primary & psych, tell them what you were told by Rheum.. ask if there is anyone else they would recommend. Talk to the nurses, too... maybe they might know someone. You need to advocate for your needs, and be persistent about it.

I am part of a big HMO clinic that has over 80 specialty groups... all in one location, but few deal with fibro specifically.

I hope you can find someone to help you soon.
 

JayCS

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02/2020
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So I went to the doctor they did the test to rule out lupus and other autoimmune and they did. It is most defiantly fibro so my PCP referred me to rheumatology but they are saying they don't deal with fibro maintenance they only rule out other autoimmune and since that was done they denied my referral. So where do I go from here? I started Cymbalta my psychiatrist started that. But I don't know what doctor I'm supposed to go to for this?????
Hi again Chance - nothing confusing about this. You now pretty much know you have fibro. So that's a safe start to get going with sunkacola's advice post and our forum suggestions.
Many rheumatologists do fibro, many don't. Mine don't either. Edit: as cookiebaker just said ;-).
My sleep lab psychiatrist supported and helped me, and as yours tried Cymbalta which is perfectly fitting, you might actually get more fibro help from them, although that's rare.
But usually we are referred back to the all rounders, the PCP/GP. And again what they can do depends on what they know, what they are prepared to learn from articles or from us.
I'd suggest trying your / a knowledgeable PCP. Ah, cookiebaker's beat me to that too, excellent. 👐

Leaves me to suggest telling us what exactly you now need most and us making more specific questions what you'd want a good PCP to do about that.
Because the chances are they may be just as overwhelmed as us, won't know where to start (docs feeling overwhelmed is actually sort of a soft criterion for fibro). So it will help them if you decide yourself before hand what your priorities are and can describe your symptoms in detail..
Usually first to get a handle on your sleep & anxiety, with as little meds as possible.
And then get good gentle, listening PT like osteopath, myofascial release, acupressure, some chiropractic to get your local pains down (and also show you how to do it yourself).
 
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sunkacola

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So I went to the doctor they did the test to rule out lupus and other autoimmune and they did. It is most defiantly fibro so my PCP referred me to rheumatology but they are saying they don't deal with fibro maintenance they only rule out other autoimmune and since that was done they denied my referral. So where do I go from here? I started Cymbalta my psychiatrist started that. But I don't know what doctor I'm supposed to go to for this?????
Hi Chance,

I am not understanding why you are confused. If you and the doctors feel is most definitely fibro, then there is nothing about maintenance that any doctor can do for you except give you pain medication (most of which can cause addiction, which you do not want). Taking pain meds is no kind of solution, and will do nothing to even make it possible for you to feel better, since they only mask the pain. Not saying they are not at times appropriate; I take some myself and I think we all do. But that is not what you rely on if you are going to approach management of fibro in the best way and the way that can yield results.

In other words: where go from here..... you are to go for this..... is to yourself, improving your overall health, and your own experimentation to find out what works best for you.

It is time for you to take change of your health for yourself, and I have written a big post with many suggestions for starting the journey to discovering what this means for you. Get started and let us know how it goes. The biggest step I ever made in dealing with fibro was when I realized I had reached the end of what any doctor could do for me (which comes pretty fast if you are not taking prescription pain meds daily), that depending on the medical establishment was foolish since they didn't know much more about this than I did and had no cure, and that it was entirely up to me to do something to make things better. That realization and my resultant actions changed everything for the better.

 

chance1252

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Joined
Jul 13, 2022
Messages
17
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
VA
Do I have to check with my doctor before trying any new supplement? I have done soMe research today and was going to try a supplement called fibropin but because I take prescription meds I was not sure what to do!
 

Rojo

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When I was diagnosed, the rheumatologist referred me to a pain management doctor. I moved 15 years later and my Dr. In my hometown said to find an Internal medicine doctor
 

Auriel

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DX FIBRO
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08/2006
Country
UK
State
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I didn't know whether to put a sad emoji or a glad emoji so you can have both 😞😊 cos fibro is really not a nice condition (I've had mine a while and "still* getting issues) but I'm also glad they're getting to the bottom of everything and giving you the tests you need to rule out similar mimicking conditions
🤗💗🤗
 

JayCS

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Do I have to check with my doctor before trying any new supplement? I have done soMe research today and was going to try a supplement called fibropin but because I take prescription meds I was not sure what to do!
Fibroprin I think is the product you mean...
Generally it's advised to tell docs & pharmacists. In practice most don't know much about them anyway.
Once you're now only taking duloxetine/Cymbalta (no Prozac any more?) it seems to me only St. John's Wort is something to avoid, as it also decreases depression and that may interact wrongly.
The high amount of vitamin D3 in it isn't a known problem for duloxetine, but I'd get your levels checked first.
You say 'research': What you've done isn't actually research, it's just looking at company sites, designed to make money off of us.
Research should mean looking at medical articles like on pubmed, or on specific fibro/CFS-sites, best is healthrising, and general health sites are also often OK: healthfully, verywellhealth or draxe, as these quote their sources and give a balanced view.
That will lead you to look at individual supplements.
Contents: If you do that, you will see that vitamin D3 (if you have low levels) and magnesium glycinate (next to malate) are generally often recommended for people with fibro.
But the others in Fibroprin, magnesium oxide, MSM, Piper nigrum, Boswellia Serrata = Frankincense and Bacopa monnieri
have no evidence for helping fibro. Only the Frankincense I've heard taken successfully by one person that used to be on this forum.
(A few people say that artificial D3 is way inferior to natural sources like sunlight or fatty fish.)
Additives: The company claims no additives, but it contains magnesium stearate and silicon dioxide, both of which I avoid - other companies are proud of not using them, they do, but pretend they don't...
Company: They say they are a small company. Customer reviews show that it hasn't sold much of its product yet. Names of companies (like this "Approved Science. Scientifically formulated to get results") or products which are "over the top" usually have components that are "under the bottom". These are usually things to avoid.
Customer reviews on A: 1 rating of 2 of 5, not a single review.
Price
: On their site they pretend it is 10$ cheaper than it is. :LOL: If you buy 6 you pay half that. But let's say you don't tolerate the sulphur in the MSM, which is pretty common - then you'll have paid a lot for nothing. If you buy it, start with one and start with one capsule, not the recommended 3. 90 capsules cost 50$, 3 a day is recommended, so = 50$ a month, not expensive. My high quality D3 with added vitamin K2-MK7 costs 1€/m.
Side effects of MSM, that's the one I'm most wary of: Heart palpitations, skin, digestion. "People with mood disorders seem to be more likely to have serious psychological side effects like anxiety and depression." "But also headaches, migraines, insomnia [so don't take in the evenings], muscle cramps, increased thirst and dehydration are other side effects reported by those who have tried MSM."
Problems with magnesium oxide: Very controversial. It's cheap, but anorganic, so it's only 4% bioavailable. It's used to delay the uptake, which wouldn't be necessary if you take the 3 capsules spread out.

Generally I advise against combination products, because you won't know which component any main or side effects are from and can't influence by changing amount of time of one. In this case for instance magnesium glycinate might help sleep (does most, not me), but MSM can cause insomnia. You may need higher levels of D3, but praps need to reduce the MSM.

Instead I'd always recommend to get your B12 and D levels checked and supplement those accordingly first, using a good product. (B12 you're taking already I know.)
Then I'd go just for a magnesium glycinate and/or magnesium malate product. (We already talked about magnesium on another thread.)
Then if at all any of the others, I'd try a single Frankincense/boswellia product, but only if you have swellings/edema/puffiness.

For your fatigue I suggest the magnesiums, and next CoQ10.
For your depression I wouldn't take supps as that might interact with the duloxetine/Cymbalta.
Starting something next to a med I'd only add one supp at a time, starting with a reduced dose and increase and wait for a few weeks before adding the next, watching your symptoms closely and stopping if it doesn't help or it harms.
There have been situations where I start with several supps at the same time, but only cos I know what I'm doing.
 
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sunkacola

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You can check with your doctor, @chance1252 , but usually they won't know a thing about herbal supplements. Better, if you want a doctor's advice on it, to go to a Naturopath. Insurance usually doesn't cover this, even though they are true medical doctors, but if you want good advice you can start there.

JayCs has great advice on the product you mention, and similar ones. The vast majority of them are pure scam, and you will waste your money buying such things. the one you mention sounds like an obvious scam to me. These quotes from JayCS are just about what I would say to you as well.

You say 'research': What you've done isn't actually research, it's just looking at company sites, designed to make money off of us.
Research should mean looking at medical articles like on pubmed, or on specific fibro/CFS-sites, best is healthrising, and general health sites are also often OK: healthfully, verywellhealth or draxe, as these quote their sources and give a balanced view.
and this
They say they are a small company. Customer reviews show that it hasn't sold much of its product yet. Names of companies (like this "Approved Science. Scientifically formulated to get results") or products which are "over the top" usually have components that are "under the bottom". These are usually things to avoid.

The thing about taking extra vitamin this or mineral that is that you don't have any idea whether or not you have already an excess of that or if you are lacking in something different. Just taking certain things won't help you unless that is what your body needs, and if you take too much of a mineral or vitamin that can cause other health problems. I stay away from things like that unless I have actually been tested and it is found I am low in something, in which case I may take a supplement for that one thing. The only exceptions for me are magnesiam glycinate and calcium citrate, which I do take daily but not in large doses.
 

cookiebaker

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DX FIBRO
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07/2022
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i would have to agree with the above... and keeping your doc in the loop is pretty important, even with just OTC stuff. Many prescription meds do not go well with OTC supplements so when to take, or even if you should take, needs to be considered. Also, dont be afraid to talk to your pharmacist about this stuff, too.

and you should definitely have vitamin/mineral levels checked before starting any supplements... I could have sworn i was having hypothyroid issues, turns out my Vit D was very low, and iron was low as well... most other levels were good.. I have my D up now, but still supplementing some... Iron is still struggling to come up... taking an iron supp every day can cause constipation, which i already struggle with, so i only take my iron every other day.

Any time i get a new scrip, i ask questions about compatibility with existing meds, when i should take.. etc.. there are cases when you do not want to take 2 different things at the same time, but stagger them by a couple hours or so for better uptake by your system without causing problems.
 
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