How do I approach a doctor about testing for fibromyalgia?

[nikkinik1991]

Hello my name is Ashley. I am beginning to believe I may have either fibro or arthritis. More so leaning towards fibro. I am beginning my journey to try and figure out what's wrong and I am trying to figure out how to approach the Dr about testing. If anyone has any advice on how to do so it would be greatly appreciated. Thank you in advance!

 

[Sammy1]

Hi Ashley I too am wondering how to approach my doctors. I’ve been in pain for nearly 3 years now. Can’t sleep wake up with terrible muscle pains - really bad fatigue during the afternoons sore eyes.
I’ve been to a rheumatologist who’s done loads of other tests to rule out things or try and find out why I’m in so much pain.
They’ve found osteoarthritis in my hip and knee but mild and said it wouldn’t be causing my other muscle pains - it’s like a never ending door closed in my face.
I’ve been to a private physio who said year or so ago I’m boarder line fibro and I’ve got worse since then. I just wish I knew what was wrong with me I’ve gone from being strong fit (ish) person to not being able to do day to day things!

 

[JayCS]

Hi Ashley, Hi Sammy, and welcome to you both!
Ashley, Sammy's way of starting with the rheumatologist tests is the usual one, that'll get basics excluded (or not). Next if my diagnosis hadn't been as quick as it was, I'd use the ACR 2016 diagnostic criteria to get some confidence myself, and take that knowledge and/or the sheets to the docs. At the same time the diagnosis is only a sideline for actual help, and can shove people in the seemingly easy answers of popular pills, which often cause more harm than they help.
So I'd already start trying out all the suggestions in the advice post pinned at the top of the general forum to find things without using meds first and quickly, before things start lodging in.

 

[sunkacola]

So I'd already start trying out all the suggestions in the advice post pinned at the top of the general forum to find things without using meds first and quickly, before things start lodging in.

@Sammy1 and @nikkinik1991 ...Here's a link to that post:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

I am trying to figure out how to approach the Dr about testing. If anyone has any advice on how to do so

A good approach is to describe your symptoms, rather than going to a doctor and asking to be tested for fibromyalgia. First, because there is no test for fibromyalgia. Some doctors still do a "pressure point" test, where they press on certain areas, usually on the back, to see if they cause you pain. This is seriously outdated and any doctor who uses it is uninformed about fibromyalgia and should be avoided.

If you walk in and say you want a fibromyalgia test, you can get a poor response.

I just wish I knew what was wrong with me I’ve gone from being strong fit (ish) person to not being able to do day to day things!

Knowing what is wrong is useful if there is a cure or a treatment that is widely effective, and there's none for fibromyalgia. It is also useful as something to put down on paperwork. But other than that, the diagnosis, if it is fibro, is not of much use on a day to day basis for the person with fibro. If you want to try some things that will probably help you with the day-to-day, see the post linked to above.

Since there is no test for fibro, most often the best approach is to eliminate other conditions that have the same symptoms, and there are a lot of those. Some things on the lost list can be eliminated by your not having other symptoms commonly seen with those diseases or syndromes, but some will need to be tested.

Usually, a diagnosis of fibromyalgia is reached only when no other explanation or cause can be found for the symptoms the patient is having.
Best of luck to you both and welcome to the forum

 

[nikkinik1991]

Thank you so much!

 

[sunkacola]

You are welcome. We are here to help.

 

[cookiebaker]

I am trying to figure out how to approach the Dr about testing. If anyone has any advice on how to do so it would be greatly appreciated.

I agree with the advice given above..

my suggestion would be to sit down and write down all of your symptoms before your appointment..
then categorize them - Major symptom, with related additional symptoms listed after (kind of in an outline format)
Take the list with you so you dont forget something important.
This can help guide where to start with testing to rule out other potential problems/diseases

using my own symptoms, I would start with widespread aches & pains (hurt all over), general fatigue (feeling tired & worn out all the time), poor sleep & not feeling refreshed/rested in the morning, and digestive issues (bloating, excess gas, heartburn, constipation/diarrhea, etc).
The Doctor will most likely ask questions about each major symptom, and that is when you fill in with more details and related symptoms/issues.

as an example -
Doctor: you mention widespread pain - what does that feel like?
Patient: sore, bruised feeling muscles, stiff joints, hurts to get out of bed in the morning... (or whatever it is you feel..)
Doctor: Tell me more about your sleep problems
Patient: I have trouble getting comfortable & falling asleep, wake up during the night from pain, etc..

While many of us experience very similar symptoms, your list should be unique to you and what you are experiencing.

 

[eTherapist]

I feel for you both too, as JC said also. This pain is excruciating. My doctors don't "understand" either and I don't know if I am unlucky or lucky . I am a naturopathic psychologist and holistic doctor who however I am also a United States citizen living in the Netherlands so Dutch is not my first language and because of that alone, them knowing that I am a psychologist MD and holistic doctor who they just write what I suggest. I tried Lyrica actually at their suggestion because I had breast cancer in 2017, however, when I started having this crazy and severe pain and problems with my eyes, I noticed that it worked. However I because I am more holistic than modern medicine, I quit taking it. I have been in bed now for days. I started taking Lyrica again today because I know that I will be out of bed soon. I have to get out of bed, I have a 10 month old puppy who needs me, plus I have other things to do also. I understand what you are going through more than most because I am dealing with doctors who's first language is dutch and if I didn't have my credentials, I guarantee you that I wouldn't be getting out of bed soon and I would be in pain galore. I have spent 2 years doing research on this pain because I just woke up one morning with it and still don't understand why. It's like something grabbed ahold of me one night when I was asleep and won't let go. I have, and still do, research this in China, Germany, Netherlands, United States and more trying to find out if anyone has discovered why /how this starts /happens. I want out of this nightmare and to be able to help others without them having to take drugs. Until I discover anything, I am going to have to take Lyrica just to function at all. I hate taking drugs but I know that I have no choice. Good day

 

[sunkacola]

I hate taking drugs but I know that I have no choice. Good day

Hello, and welcome to the forum.

It may be that you have no choice but to take Lyrica; only you know that. But just in case you have not already done so, please read the advice post on alternatives that you can do for yourself to help. I wrote it because by doing my own experimentation I found ways to manage my fibromyalgia without taking medication frequently. Since you are already a natural practitioner, you may already know all of what it in the post, but I just thought i would mention it in case there's something in there that you have not considered or tried.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Sammy1]

It’s truly awful to be in pain with no answers or reasons behind it. My problem is not sleeping - I haven’t had a good nights sleep and woke refreshed for a couple of years now the pain keeps me awake or wakes me up soon as I drop off. My doctors put me on sertraline but no difference in pain or for sleeping I had terrible aches and today I literally dragged myself about - every part of me hurt I do try to eat well and I get enough fresh air when I can. I have a dog who I walk but not as far as I used too now a days I have to put her in my car and drive to a place (field) where I can let her off the lead to run about safely and I walk slowly behind her - she’s my joy of trying to get me out and about and motivates me every day

 

[JayCS]

I am a naturopathic psychologist and holistic doctor who however I am also a United States citizen living in the Netherlands so Dutch is not my first language and because of that alone, them knowing that I am a psychologist MD and holistic doctor who they just write what I suggest

I have, and still do, research this in China, Germany, Netherlands, United States and more trying to find out if anyone has discovered why /how this starts /happens.

I started taking Lyrica again today because I know that I will be out of bed soon. I have to get out of bed, I have a 10 month old puppy who needs me, plus I have other things to do also. I understand what you are going through more than most because I am dealing with doctors who's first language is dutch and if I didn't have my credentials, I guarantee you that I wouldn't be getting out of bed soon and I would be in pain galore.

Hi eTherapist,
I get your symptoms and your feeling you need pregabalin/Lyrica....

But I'm very confused by many points in your post. So I'd be grateful if you could clarify, I'd like to understand better:

What's a "naturopathic psychologist"? What's a "psychologist MD"?
I'm surprised a holistic doc would take Lyrica: What exactly do you then mean with holistic?

Is English your first language? And you have English university qualifications? I'm a bit surprised then at your grammar and spelling...
Why do you mention your language, what is that relevant for? (Don't most Dutch speak English, esp. doctors? Aren't many doctors in Europe not from other countries? Isn't it possible to find Dutch docs that speak good English?)
The docs write what you suggest - like what? (Lyrica they suggested to you, you say.)
Why exactly is dealing with doctors who don't speak perfect English a problem? Why does it let you understand people with fibro problems better?

What has Lyrica got to do with breast cancer? You are taking Lyrica to get out of bed? How do you mean you'll be out of bed soon? Do you mean you need to? How does being a "doc" / "having credentials" get you out of bed quicker?

How do you mean you have research? or researched? "this" in various countries? Do you mean webpages? Or reading studies? Since the last study that made bigger waves was done in Liverpool, I'm surprised you haven't mentioned the UK, but instead China, a country where fibromyalgia hasn't been researched that much?

And how do you mean "

trying to find out if anyone has discovered why /how this starts /happens

To make out the state of research about fibromyalgia causes we just need to read a good recent review on pubmed... There are about 5 scientific hypotheses about "causes" which are not yet proven. And various holistic hypotheses which may help find treatment forms, but are even less proven. Or what do you mean by discovered?

Or are you just trying to substantiate taking Lyrica, with lots of "although" thrown in for good measure?
How come you're not mentioning any of the many alternative treatments?

 

[Curlew]

Hi Ashley,
The best advice I have is ask your GP for a referral to a Rheumatologist. They specialise in the diagnosis . I got lucky with my specialist as he has an interest in this area of medicine and treatment. A GP can leave you hanging and the mere mention of FM sends some GPs into a rant about the ‘all in your mind theory’ … I got a thorough neurological explanation and treatment options. He advised me to stay away from health professionals who were not familiar with the latest treatment of FM .