Just Diagnosed. Why Did It Take So Long?

[shoshosho]

I'm a newbie here. Diagnosed with Fibromyalgia on 5/4/22 by a rheumatologist. Follow-up with my primary and diagnosis was expanded to Fibromyalgia with overlapping symptoms of CFS on 5/11/22. I knew nothing about Fibro/CFS prior to my first visit with my rheumatologist on 5/4/22. They had received my information prior to my appointment and she basically walked in and asked if Fibromyalgia was ever discussed with any of my other doctors, my response was no. This is after seeing my primary, a team of neurologists, Gastroenterologist, Psychiatrist, Psychologist, Cardiologist, Orthopedic Surgeon and more over a period of 10 years! I had been diagnosed with Porphyria, Generalized Anxiety Disorder, IBS, Cognitive Deficits, Chronic Pain, Abdominal Migraines and the list goes on. My neurologist was actually treating this as early onset dementia. This would turn into a very long post if I listed all of the diagnosis. They just piled on the meds. Best thing, all had side effects including dizziness, drowsiness, confusion, double vision etc... All the meds made it worse. I was frustrated, anxiety and depression are not very good friends to this condition. I don't know how others may feel but the diagnosis was a relief, I finally had a diagnosis! But it kind of went downhill from there. My rheumatologist suggested I see my primary and psychiatrist about treatment options, that was it, nothing else. She also stated that because there is very little known about Fibro/CFS doctors do not want to "own" the diagnosis. Went to see my primary on 5/11/22 and he basically said, well yeah that sounds right but we don't know what causes it so just keep on doing what your doing. I have read in other posts that you have to be your own researcher, well I wish I knew what to research. I was first hospitalized for symptoms related to this condition in August of 2012.

I will try to keep this brief but the frustration of going on for 10 years with each specialist so focused on their own fields no one looked at the big picture. It was the NP at my Orthopedic surgeon who was most helpful. She was treating me for the joint pain but she also knew about the other conditions. Sent me for an ANA and rheumatoid factor. Low positive ANA she did not suspect Rheumatoid but rather some kind of auto-immune disease, Lupus was mentioned. She suggested I share the test results with all of my other doctors. Nothing changed. During my follow up with the OS she suggested I see a rheumatologist, basically said enough is enough and sent me to the rheumatologist.

This is going to turn into a novel if I keep going on, there is so much to say. Throughout the years I did a lot of things on my own. Went through an elimination diet, Stress and relaxation techniques (TM), breathing exercises. Nothing really helped. The brain fog and fatigue attributed to sleep Apnea, although I did not do well with CPAP, made it worse. Aches and Pain well its Chronic Pain. Heart palpitations, wear a heart monitor and echo every six months. Cardiologist actually said it was a problem if I thought it was a problem.

I can go on and on but I feel better reading through the posts in this forum because there are others out there just like me. I am just so frustrated that doctors don't want to "own" this diagnosis while I, and am sure many of you, have suffered for years. For brevities sake I will get to my point because it seems that you all know about the symptoms I don't need to re-hash. I don't want my first post to turn into a venting and whining post. For me Fibro/CFS has been debilitating. Now I know what it is, but It feels like I'm starting all over. So glad that there are forums like this to discuss and share our experiences and how to cope. I feel for all of you that went through what I did, sometimes thinking, I'm losing my mind, my doctors certainly made me feel that way. Hope This isn't a rambling post (Fog doesn't help) but I look forward to contributing and learning. Wish the best to all and for those like me who have been recently diagnosed at least we have a forum like this.

Thank You.

 

[JayCS]

Just diagnosed. Why did it take so long? ....
I knew nothing about Fibro/CFS prior to my first visit with my rheumatologist on 5/4/22.
very long post if I listed all of the diagnosis.
They just piled on the meds. ... all had side effects including dizziness, drowsiness, confusion, double vision etc... All the meds made it worse.
I was frustrated, anxiety and depression are not very good friends to this condition.
I don't know how others may feel but the diagnosis was a relief, I finally had a diagnosis! But it kind of went downhill from there.
because there is very little known about Fibro/CFS doctors do not want to "own" the diagnosis.
I have read in other post that you have to be your own researcher, well I wish I knew what to research.
going on for 10 years with each specialist so focused on their own fields no one looked at the big picture.
It was the NP at my Orthopedic surgeon who was most helpful. ... suggested I share the test results ... see a rheumatologist
I did a lot of things on my own. ... elimination diet, Stress and relaxation techniques (TM), breathing exercises. Nothing really helped.
Cardiologist actually said it was a problem if I thought it was a problem.
I don't want my first post to turn into a venting and whining post.
For me Fibro/CFS has been debilitating. Now I know what it is, but It feels like I'm starting all over.
sometimes thinking, I'm losing my mind, my doctors certainly made me feel that way.
Hope This isn't a rambling post (Fog doesn't help) but I look forward to contributing and learning.

Hi shoshosho: You're here, at last! Welcome in . We can all relate.

Sounds like you know most of the answers yourself! : It took so long because you have many diagnoses, the specialists are specialized and were finding stuff, piling on meds makes it harder and because you didn't know about fibro yourself.

No worry about venting or thinking you're rambling a little...! We don't need this worry stuff, do we? ;-)

You've tried a few general health things: diet & relaxation and are wishing you knew what to research:
Well, specific symptoms and targeting, describing, analyzing each and their triggers would be my main suggestion.
And with that you will be "starting all over" in the best possible way. Now you're in charge it won't take 10 years this time.
Checked/worked thru sunkacola's advice post yet? That's the very best place/way to start all over and get results quick.
And here we may be losing our mind, but we're all doing it together. The docs make us feel like that because they are overwhelmed themselves. No blame: anyone would be! (Even says that in the 2022 UK guidelines...)

In contrast my fibro diagnosis took 4 months altho I also have >30 diagnoses, old & new, because I luckily knew all this beforehand (one-track over-specialised docs, dangerous meds, what fibro roughly is, how to use the web sensibly), had worked on my anxiety, many health issues, general health & fitness long before, and had to stop working due to my full fibro flare, so could concentrate on this (and felt it my duty, and was also intrinsically motivated). So my MCAS diagnosis - another vague thing - took only 1 month, having already found various treatments quickly. "Starting all over" gets a habit, faster every time.

 

[DJ Payne]

Your experience sounds so familiar to mine. I started to think I was going crazy.
It took years and years to get a diagnosis of what was actually going on.
Fortunately like you, most of the meds the Drs gave me only made me feel worse so I would stop taking them thus not inudating my body with unnecessary chemicals.

I have days I ache so bad it brings tears to my eyes but I'm learning to be very productive on my good days and not be to hard on myself those days I just can't do anything b/c I'm hurting so badly.

Be kind to yourself.

 

[fimi]

Hi shoshosho and welcome, I can relate with how you're feeling. Going through years of testing and trying numerous types medication to eventually get a diagnosis can take its toll - I went through all the emotions of frustration, anger, doubt etc, right up to, and after receiving my diagnosis - angry at why it had it taken so long, and why I had been left struggling through life trying to keep up with everyone elses expectations of me. This in turn greatly affected my fibro, but also had an impact on my mental health.

The main way I managed to make my life better, was to change the way I thought about things; Yes, It had taken years for diagnosis, but at least had been tested to check for other things - so I knew their were no worse nasties lurking about - I had fibro with other symptoms that needed seperate care, so I now knew what I was dealing with.

I had tried numerous medications, most of which didn't work and only added to the problem, so I was able to decide which worked for me and refuse those that didn't.

I realized I had been practicing the self care for years with diet, stretching etc, and after receiving my diagnosis realized that this was going to be my main saving grace going forward!

I realized I had found out so much about my own body and who I was as a person, even though it had taken years to get there. And surrounded myself with good people that would at least try and understand,

So my advice would be to try and turn how you feel on its head and be proud of yourself for getting to this piont. Because I know and so do many others on here, that's it's tough. Please keep sharing your experiences, you have 10 yrs of a hike to diagnosis and your experiences can help others as well as yourself. All our experiences are importantant and help each other.
Keep up with the self care (there's loads of advice on here if you search) and vent all you want, there will always be someone on here to listen. That's the great thing about this site, it's a place where you can share with people who have been through similar experiences, who will listen and actually hear what you're saying! (as we know, there is a difference!).

Stay stong shoshosho.

 

[shoshosho]

Thank you all for your responses. My first post was difficult as I still felt that what I am going through is in my head, 10 years of seeing doctors who made me feel that way still sticks with me. It is really overwhelming to have received responses by others who are going through what I am. And I'm not crazy! I have a lot to share with others, and am so appreciative for you all sharing with me.

It's really sad that my rheumatologist said doctors don't want to own the diagnosis. But to stay positive, after 10 years I had to go it alone and learn to try to cope on my own. I have the basics down but the flares always lurk somewhere in the background just waiting to pop up. I have to avoid the triggers, and most importantly listen to my body. I have to accept the fact that while I may never return to where I was I can do my best to stay positive and accept where I am.

Thank you for your kind words of encouragement. I look forward to helping others, especially the newbies as this is a scary thing to go through.

 

[JayCS]

It's really sad that my rheumatologist said doctors don't want to own the diagnosis.

My first rheum., who didn't diagnose it, said this not about all doctors, but about rheumatologists: Why should they diagnose it, altho it is not a rheumatological disease?
To be fair, they are right, it isn't.
To be even fairer, they are wrong, because fibromyalgia via seeming joint pain (actually tendon pain) mimics rheumatological as well as autoimmune diseases and these fall into the domain of rheumatology. Once they've 'proven' it's not that, further tests still have to be done, in my case and I'd recommend everyone: neurological, endocrinological and orthopedic. Once these 4 areas are done, the last one of these or the GP / PCP is the one who should be diagnosing it. So fairest is:
The rheumatologist is right: No one owns this diagnosis, because it belongs to everyone, every doc and ourselves.
That's why the new criteria are trying to empower all/any docs to diagnose it once the 4 main fields have been checked.

 

[sweetkamie20]

Your post is nothing short of articulate. I think it gave us a good idea of your journey and that is a good thing. Sounds like that NP is an angel!

In reality this is probably the best (and maybe only) place to be reassured you're not crazy and to take an opportunity to really vent. Venting outside of here for me has proven to be...well, just a lot of work with very modest success

It's taking me a long time to help some people understand and, in the meantime, this forum is the one place I feel like I can say something and not have to keep reexplaining it.

This is a great place to come and feel "normal". Well, not normal but at least not crazy or misunderstood . Welcome

 

[Forgetmenot]

Welcome.and pls vent away this I a place you can vent and let out all that pent up emotion.
It's taken most of us years of find out what's wrong, and your right most Dr haven't got a clue what fibro is,so they just don't bother. I hope we can help you with anything you eat to know.

 

[SuSu]

My diagnosis took 16 years. Because I have an elevated RA factor I was diagnosed with RA over and over again, despite the fact that my other blood work was normal, and I didn't have the kind of progression you would see in RA. It's a bewildering condition, and hard to diagnose properly. I would urge anyone to go to a rheumatologist and not take the word of your primary care doctor ( as I did) It's the kind of condition that needs a specialist.