Was my fibromyalgia diagnosis too 'easy'?

[sunkacola]

Thanks Sunkacola. I will definitely look at your pinned post. My mother in law had RA and died from complications due to taking prednisone. They gave her a choice of quality or quantity of life. She chose quality and died sooner than she should have due to this choice. I am very new to all of this but I know what prednisone can do to you.
I am at a loss. I don't know of another rheumatologist that will accept my insurance in my area. My copay is $90 and this dr I am seeing just really brushed me off. So, I don't know what to do now. No real diagnosis, no help, either. Thankyou and I look forward to getting to know everyone here.

That is a real shame...not having another one to go to.
but, may I suggest that you don't absolutely have to be diagnosed by a rheumatologist? Not everyone who has fibro got the diagnosis that way. I was diagnosed by a pain doctor who had the tests ordered to rule out all the other things it could be.

A diagnosis is only useful for something to put on insurance forms. It won't get you any treatment because there's no universal treatment for fibro. And it may not get you any help of any other kind, either.

I think it might not be a bad idea for you to assume it is fibro as long as you have had the tests to rule out other things it could be (and there are several). A GP can order those tests, and so can a pain doctor. You just have to find one who knows a bit about fibro. Call around to doctors and ask.

 

[JayCS]

I agree whole-heartedly: Looking back, the fibro-diagnosis didn't save me looking at all symptoms I have with all docs I cd get hold of. And none of my treatments (esp. acupressure and GABA) have much to do with the diagnosis, while none of the diagnoses or treatments the docs gave me helped apart from a few hints for finding my own way...

 

[CDHR]

That is a real shame...not having another one to go to.
but, may I suggest that you don't absolutely have to be diagnosed by a rheumatologist? Not everyone who has fibro got the diagnosis that way. I was diagnosed by a pain doctor who had the tests ordered to rule out all the other things it could be.

A diagnosis is only useful for something to put on insurance forms. It won't get you any treatment because there's no universal treatment for fibro. And it may not get you any help of any other kind, either.

I think it might not be a bad idea for you to assume it is fibro as long as you have had the tests to rule out other things it could be (and there are several). A GP can order those tests, and so can a pain doctor. You just have to find one who knows a bit about fibro. Call around to doctors and ask.

That's the thing. I haven't had but 2 actual tests. A Sed rate and CRP, which was high, but he says its due to obesity. I have contacted my mental health NP. She was the one that got me a referral to this dr. She is looking into other options for me now. I just feel that a consult appt. with no labs, no scans, just an exam of my body, and a 2 months supply of prednisone is just not right.
I finally got access to the patient portal and found his notes from my appt. He didn't acknowledge half of my symptoms and he sent his notes from the appt to the wrong GP. So, MY GP hasn't even seen his notes or recommendations yet. I plan to discuss this with my NP this coming week and then make an appt with my GP and get some tests and scans ordered.
It may very well be fibro, but I want them to rule out other things before I am just willing to accept that diagnosis and live the rest of my life in pain and not know what's really going on.
To be honest, it really worries me because my father has Non Hodgkins Lymphoma. So, I need a peace of mind on things, even if only due to that.

 

[Jemima]

It may very well be fibro, but I want them to rule out other things before I am just willing to accept that diagnosis and live the rest of my life in pain and not know what's really going on.

It sounds like you're approaching what you're going through in a very practical way, and you're absolutely right to stand your ground on ruling out any other problems. It sounds like that doctor really dropped the ball.

If you do come through all of this with fibro as the conclusion, take heart - while it might be something you're stuck with, you certainly won't be powerless to find ways to improve your quality of life. Good luck getting the assessments you need, and we're here in the meantime!

 

[sunkacola]

That's the thing. I haven't had but 2 actual tests. A Sed rate and CRP, which was high, but he says its due to obesity. I have contacted my mental health NP. She was the one that got me a referral to this dr. She is looking into other options for me now. I just feel that a consult appt. with no labs, no scans, just an exam of my body, and a 2 months supply of prednisone is just not right.
I finally got access to the patient portal and found his notes from my appt. He didn't acknowledge half of my symptoms and he sent his notes from the appt to the wrong GP. So, MY GP hasn't even seen his notes or recommendations yet. I plan to discuss this with my NP this coming week and then make an appt with my GP and get some tests and scans ordered.
It may very well be fibro, but I want them to rule out other things before I am just willing to accept that diagnosis and live the rest of my life in pain and not know what's really going on.
To be honest, it really worries me because my father has Non Hodgkins Lymphoma. So, I need a peace of mind on things, even if only due to that.

Good to hear that you are getting the tests you need. Please let us know how that goes. And remember don't let any doctor give you grief over this. Walk out if they insult you or fail to believe you or blame it all on your body type, and find a different one.

but, please let me caution you and advise you not to think of fibromyalgia as meaning you will " live the rest of my life in pain and not know what's really going on."

This is not the case.
First, you do not have to think you will live the rest of your life in pain. Anything can happen, and one thing that you can cause to happen is a lessening of the pain, a lighter level of other symptoms, and a way of managing this so that you live a normal life. I say Normal, because of course it's not going to be perfect, but it wouldn't be if you didn't have fibro, either. Everyone has problems. This doesn't mean the end of your life as you have known it.

And, you can know what's going on. You may not know the cure (no one dies) and all the causes (no one does) but you will learn in detail what is going on within your own body if you just put the work into observing and trying things out. You can learn to manage this. And all you really need to know is what is going on with your body, and how to manage it so as to have the best life you can.

 

[CDHR]

It sounds like you're approaching what you're going through in a very practical way, and you're absolutely right to stand your ground on ruling out any other problems. It sounds like that doctor really dropped the ball.

If you do come through all of this with fibro as the conclusion, take heart - while it might be something you're stuck with, you certainly won't be powerless to find ways to improve your quality of life. Good luck getting the assessments you need, and we're here in the meantime!

Thankyou. I've just always been a thorough sort of person and dotted all my i's and crossed all my t's. This is my life... my body and you bet I'm going to stand my ground. At least I will know that I did all I could to make sure it wasn't anything else. Yes, I think he gave me the old brush off, too.

 

[CDHR]

Thankyou, Sunkacola. I have been in excruciating pain with no relief for over a year now. It seems like an eternity sometimes. I just want a peace of mind about what this truly is. I have a lot of other symptoms and issues going on with me that could lead to something other than fibro. And I've been brushed off quite a good bit by the medical world. It gets old sometimes and it does seem like just when I finally get to where I can get some answers, I get brushed off again. I'm going to keep my head up, even if I don't know which way to turn due to this brain fog I constantly stay in and no matter how bad I hurt or how tired I get....I just want some relief. OTC Tylenol and Ibuprofen just isn't cutting it. I have to find out what's going on with my body. And, for nothing more than peace of mind and possibly medication that might help me to somewhat deal with whatever this is, will seem like they're handing me a million dollars. Not to sound like all I want is drugs and a quick fix. I realize that pain isn't all there is to this. And, if it turns out to be fibro, I will take my seat here with you guys and do my best to try and learn from you all what to do to make things better for myself. I'm sure you all have alot of wisdom to share and I'm definitely willing to learn so that I can live a good quality life again. I have a husband, a 19 year old daughter, and my parents. And, I just want to be able to enjoy them all again.

 

[TJB]

Hi,
Fibromyalgia testing seems to vary, and certainly variations in different countries.
I find the worst thing is it seems once Fibro diagnosed then all too often every ailments is dismissed under that generalised umbrella. Often concerning, causing stress…knock on effect.
x

 

[CDHR]

Yes. In my case, that is what happened. I went for my follow up appt and the dr had already closed my chart But, I did convince them to at least take more blood tests to rule out other things it could be. And, I officially got a fibro diagnosis. Although, sometimes, I still feel like there could be something else causing these flareups and symptoms that I am having.

 

[sunkacola]

Yes. In my case, that is what happened. I went for my follow up appt and the dr had already closed my chart But, I did convince them to at least take more blood tests to rule out other things it could be. And, I officially got a fibro diagnosis. Although, sometimes, I still feel like there could be something else causing these flareups and symptoms that I am having.

That is something we all wonder at times. Actually, I don't think that fibro is really going to turn out to be just one thing. Once enough research is done, I suspect they will discover that it is several or at least a few overlapping syndromes that tend to clump together. Possibly if they do discover that there might be effective treatments for some of them.

 

[CDHR]

Wouldn't that be wonderful for them to finally figure it all out. I read that article in the Guardian that just came out a few days ago. I think that once they decide that it is actually an auto immune disease, there will be new ways to treat fibro patients. And, won't that be sweet!??! I do still think I have certain things, even though the blood tests came back negative on them. And, I keep reading about other fibro victims and I have all the symptoms, for sure, but some aren't as bad as they say theirs is. I know fibro effects everyone differently, but most are way more dibilitating than I have. Also, I haven't been told, but are there stages of it? Like cancer has stages. I am newly diagnosed, so I am wondering if mine will get worse with time.

 

[Jemima]

Also, I haven't been told, but are there stages of it? Like cancer has stages. I am newly diagnosed, so I am wondering if mine will get worse with time.

Once it fully manifests, fibromyalgia is not considered to be degenerative, so no stages as such. It tends to ebb and flow instead - so you might have better or worse periods ahead, but it's definitely not a downhill situation!

Symptom management seems to be key - be it through medication, lifestyle changes, or alternative therapies - and if you do have flares in the future you may or may not be able to identify why they happened. I'd say there's a consensus that getting to know your fibro body as well as you can is helpful!

For my experience at least, while it still has a challenging impact on my day to day, I am SO much better off today than I was when I first started dealing with this thing. If you do reach the conclusion of fibro, there is reason to be hopeful.

 

[CDHR]

I just wondered cause I have only had maybe 1 or 2 days so far that I was actually in bed all day. I have pain all the time and I've noticed some things already like a few minutes ago we were taking down some decorations and my husband had taken down a banner I had intended to leave up for a while. I have a short fuse these days and am grumpy when I'm hot and hurting, which was the case. I got upset...well, mad at him over it and I noticed all of a sudden my knee and back started hurting really bad. I know that getting upset/ mad makes me tense up, so that's a big no no for me. When you're new to this and get to reading posts, you read all sorts of things and it just seems like everyone has it really alot worse than I do. I have a higher pain tolerance. (I've been dealing with this for over a year now with virtually no meds other than OTC tylenol and ibuprofen.) So, I'm just dealing with the pain and the other things going on like the "Fog". Like I said, after reading some things that are going on with others, I was wondering if I'd wake up one day and it really be at a new next level or get worse all of a sudden.

 

[Jemima]

I just wondered cause I have only had maybe 1 or 2 days so far that I was actually in bed all day. I have pain all the time and I've noticed some things already like a few minutes ago we were taking down some decorations and my husband had taken down a banner I had intended to leave up for a while. I have a short fuse these days and am grumpy when I'm hot and hurting, which was the case. I got upset...well, mad at him over it and I noticed all of a sudden my knee and back started hurting really bad. I know that getting upset/ mad makes me tense up, so that's a big no no for me. When you're new to this and get to reading posts, you read all sorts of things and it just seems like everyone has it really alot worse than I do. I have a higher pain tolerance. (I've been dealing with this for over a year now with virtually no meds other than OTC tylenol and ibuprofen.) So, I'm just dealing with the pain and the other things going on like the "Fog". Like I said, after reading some things that are going on with others, I was wondering if I'd wake up one day and it really be at a new next level or get worse all of a sudden.

We all seem to have such varied experiences, so it's possible that it might - but also that it might not!

From all of the accounts I've read - and going by my own experiences too - a lot of people seem to go through a worse period following stressful life events, such as bereavement, losing a job, separation, etc. That makes it important for us to listen to our bodies when stress ramps up in our lives, and try to be extra careful to self-manage as much as we can.

That said, we can't totally control flares - sometimes they just kick our assess regardless. But, try to look at it from the perspective that even if you do have a worse flare in the future, it won't last indefinitely, and you should be able to help it ease up through the good practices that you find to be useful along the way. Being afraid of feeling worse can cause a lot of stress in its own right, making it more likely to happen - the more we can break that chain, the better!

Incidentally, I had so much anger during my first year or so of full symptoms. Short fuse is an understatement Over time, that improved - I hope it does for you too - but, of course, being grumpy when in pain is totally understandable, so don't be hard on yourself!

 

[CDHR]

Thankyou Jemima. I'll try not to be so hard on myself. As far as flares go...well, I live in constant anxiety and stress. Dysfunctional in an understatement when you refer to my family. LOL That's why I was wondering what was ahead of me as I read other experiences. I've come to the realization that I am going to have to just live with the flu like symptoms, feeling like I can't get enough sleep, and pain that I have and do my best to eliminate as much stress and anxiety as I can by simply just staying away from those who cause this to happen. Its going to be rough because they won't understand, but I've just got to do it for me.
Thanks for the encouragement. God bless.