Remember Fibromyalgia is a Syndrome

Iknopain2

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Jun 26, 2021
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4
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DX FIBRO
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10/2010
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US
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VA
I'm reminded that Fibromyalgia is a syndrome - a person with fibromyalgia does not usually have just pain, or just tiredness, they have a host of other symptoms or diseases. Or maybe they had a disease and then fibromyalgia - the pain of all the muscles and the tiredness decided to join the "party". Either way, it's not fair that doctors dismiss something they do not understand.

I had a really difficult time getting diagnosed with Fibromyalgia in 2010. I was overweight, had cholesterol problems, high blood pressure, low vitamin D levels, and had had back surgery two years prior. I had other interesting combinations of issues too: polycystic ovaries, prediabetes, moderate sleep apnea, asthma, depression, anxiety, and the list kept growing. My primary doctor was an internist, she wanted to blame everything on my obesity and my cholesterol, high blood pressure, and diabetes. My rheumatologist wanted to tell me it was all in my head because he saw no joint issues and I did not have Lyme's disease or any other autoimmune disorders. My neurosurgeon who had done the back surgery believed it was from the trauma of the original back injury, but that was only after my diagnosis was made finally by my very reluctant rheumatologist. Each doctor looked to their specialty first and ignored me when I said what was really bothering me had nothing to do with their specialties. The Neurologist found nothing wrong. The Internist found everything wrong, just didn't want to talk about Fibromyalgia.

In total, I had to see five doctors and have many tests and repeated visits to explain my symptoms before my rheumatologist finally made the diagnosis. The Rheumatologist wanted me to see if anything else was causing the pain and found out it was not caused by malfunctions in my joints. He had to admit finally that the only thing left to name the pain and arrangement of symptoms was Fibromyalgia - the pain of my muscles. He was unapologetic when he exclaimed, "Do not expect me to help you get disability." I had never even brought up the discussion. I wanted to work! I wanted that independence! I was ashamed of his behavior towards me. Don't write me off until I'm ready to throw in the towel, I grumbled to myself. I cried quietly, not because of his mistreatment, but because I knew that I would have to fight for the rest of my life to be heard concerning my pain. Keeping quiet is not an option. And speaking about my pain in a rational way is my right. Looking back, I should have yelled at him and given him a piece of my mind. Oh well. In the long run, I stopped going to his office - so my money stopped going into his pocket. I believe that was the best outcome.

I have had to change doctors four or five times because of changing federal legislation, because of insurance companies that dropped me, and because doctors would refuse to listen to me. I have had a doctor raise her hand to stop me from talking during our first interview because she had to tell me she did not believe that Fibromyalgia existed. She believed that I should eat better food and see a psychiatrist. That would solve my problems. While I agree that food plays a huge part in my health, and mental health does matter, her dismissal did not sit well with me. I walked out and refused to pay her.

Pain management is a right. If a human would not allow an animal to be in our type of pain, why would the government or any person alive allow us humans to live in this pain, daily, for the rest of our lives? More can be done in research and with medicine to manage our pain. Of course, we are not going to die of this pain, but should that matter? Each person decides their own gauge of how much pain they are in, no other person can decide that for them. No one has the right to turn to you or me and say "Just deal with it." If they had to live with our pain, they would change their minds very quickly. It's sad that there is no way we can make them understand that. We do deal with our pain, we would just prefer to have at least a little less pain, or hopefully no pain one day. We with Fibromyalgia have to stick up for ourselves and each other. We won't have the exact symptoms or arrangement or symptoms. We won't have the exact cures for each other. We can't make the pain go away for each other. But we can speak up when a doctor is dismissive. We can call out legislation that negates our rights to receive adequate and humane care for our pain.

Don't give up. If someone is telling you that you are imagining your symptoms or that your symptoms do not make sense, keep bugging them about it or find a new doctor that will test what needs to be tested. Do research to find out the newest information about the different symptoms you are experiencing. And most of all, keep talking to us here in the community. No one else will understand. But we will.
 

Jemima

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Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
What a wonderfully articulate, thoughtful, and insightful post. I am certain that a lot of readers here in the forum will find hope and take comfort in your words! Thank you 🌷
 

JayCS

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Sep 5, 2020
Messages
654
Reason
DX FIBRO
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02/2020
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GE
Thank you @Iknopain2 for your thoughts, with which I thoroughly agree. Altho I had more luck with the attitude of the 45+ docs I've seen in the last 2 years. However praps less luck in that most of their treatment ideas harmed me, so I'm relieved to have gotten away from them and am now out pretty much on my own, apart from 5-6 docs which still serve me quite well.
Most are only good for things they can measure and for which they can try meds - not much help for me aside from making sure it's nothing else and some chance findings (harmless tumour and cardiovascular issues). Almost nothing that helps me has come from the docs. Best starting ideas came from friends, like cryotherapy (and then acupressure), yoga, the WHM. Best ideas where I'm at now came from the forums, esp. using amino acids like GABA...

Regarding the thread title I just want to add that whether fibro really is a syndrome is and will probably be more and more a matter of debate when the many researchers on the case find out exact causes and then perhaps subgroups more and more. The term also helps people incl. docs dismiss it. But it certainly appears to be a syndrome at the moment.
 

Badger

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Apr 2, 2021
Messages
44
It's encouraging to see other sufferers who can explain Fibro and the difficulty in living with it. A isolating side to it is suffering and not being able to explain in detail. Making ourselves understood and not giving up is so important to making a life worth living.
 
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Great post. This seems to be a worldwide problem then. Here in the UK I was told nothing is wrong & passed from pillar to post, & made to feel small with the looks & the 'don't come back unless you have a real problem' lecture I got from my doctors. It was only by chance that I managed to see a Sports Injury specialist who finally put 2 & 2 together & that was within seconds of meeting. He shook my hand I winced & welled up, (I love a good handshake, sign of a good & trusting man/woman) & i felt ashamed that I tried to pull away.
That's when he mentioned Central Sensitisation / Fibromyalgia. He sent me to the pain clinic &...

That was the first time i felt someone believed me. Two years it took, but by the looks of some of the stories here I actually did pretty well.
Well done @Iknopain2 for getting through to them!
 

Badger

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Apr 2, 2021
Messages
44
I've found physiotherapists to have a better bedside manner whereas doctors and others to be mostly unhelpful. Makes us feel like a fart in a spacesuit. The least they can do is acknowledge the patient is suffering and investigate but many would rather not deal with it.
 

Mirador

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Joined
Nov 27, 2019
Messages
27
Reason
DX FIBRO
Diagnosis
01/2017
Country
US
State
MI
I just want to throw out a little hope that it doesn't always take forever to get a diagnosis. I'd been so achy/painy for so long, but I was in my 60s so I just figured it happens sometimes with age. But I suspected fibromyalgia as a possibility, as my pain was always bilateral, not just on one side - like both hips, both thighs, both sides of my back, always hurting together as a pair. And the pain didn't seem to be either skeletal or muscular - nothing as specific as some other issues I'd had in life, like shoulder pain from strain that did respond to physical therapy. My achy/painy discomfort didn't seem to have an origin as easily identifiable as a muscle strain or joint pain. In addition, I knew of two of my many cousins who had been diagnosed with FM years ago, so I didn't think it was totally out of the question.

And so when I was at my primary care doctor for an annual checkup, and she asked me to roll over from my back to my side on the table, and I was unable to do it because it hurt too much, she was concerned and said she wanted to rule out rheumatoid arthritis. She referred me to a rheumatologist. They told me there was a three month wait to be seen. I believe that wasn't because he was so busy and totally booked for three months, I think that's just customary with some rheumatologists - because unless it's an urgent situation, people with more acute rather than chronic pain often get over their issue before the three month wait is up, and end up canceling their appointment. So building in the 12 week waiting period separates the folks with transient pain from those living with it daily. Because some diagnoses require pain continuing for at least three months, and by setting the appointments three months ahead, by the time the patient comes in they've met that requirement.

During my initial visit with the rheumatologist, he ruled out RA, lupus, and other intimidating diagnoses with blood tests and the exam. I was interviewed extensively by both the nurse and the doctor, answering hundreds of questions on a multi-page questionnaire. After reviewing the blood tests and questionnaire results, The rheumatologist did a traditional hands-on tender points exam, which I apparently failed spectacularly, and that same day, the first visit, he told me he'd ruled out all the various scarier disease processes, and then off-handedly said something like, "Of course, there's the fibromyalgia..." And he said it as if I must already know I had that, which I didn't.

He followed me for several months, with me going in periodically, but there was no actual treatment nor remedy offered. I didn't ask him for pain meds and he didn't suggest them. He did spend considerable time talking about eating an extremely healthy diet (Paleo - too extreme for me), but there was no discussion of trying to "fix" the fibromyalgia. I expect that's because there IS no "fix" for fibromyalgia. Ultimately I discontinued the visits to his office, because they felt fairly pointless to me. He was basically just tracking how I was feeling. That may have been helpful for his purposes, but it wasn't useful to me.

Mostly what I want to say is that it doesn't always take forever, and going through a bunch of ignorant medical personnel, in order to be diagnosed. I was diagnosed very quickly once my PCP saw my pain firsthand at an office visit, and while she never mentioned FM, she sent me to the best kind of specialist to either diagnose it or rule it out. I feel badly for all those who tell these stories of how difficult it was to get a diagnosis of fibromyalgia, because it's not necessary. Maybe I'm lucky and live in a place where doctors take complaints more seriously and are more open-minded, and if I am I'm grateful for that!
 

JayCS

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Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
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GE
Yes, similar here @Mirador. As my rheumy appt. was to take 6 months (bloods a month before), I sneaked in another one due to a new "open appts." scheme by the insurances here, where you get told where there are specialists with open appts, just that they may be 1 or 3 hours away. The one I went to was 1.5h away. What I do now in similar situations is use doctor directories and phone around. Distance is sometimes no matter, despite the pain(s) of travelling.
That one got me checked for AS (ankylosing spondylitis), with an MRI and colonoscopy: nothing, which disappointed him and he dropped me, recommending a neurologist and endocrinologist - also nothing. In the meantime I'd been to an orthopedist too and soon the other rheum. appt. came up. Due to having gotten the other tests done already she did a tender point exam and then immediately diagnosed me with FM and as she preferred to call it "polyinsertionstendomyopathy" ;-) (which wdnt explain the sleep problems etc. tho).

I know this doc-multi-tasking depends on insurances, but most people wdnt/don't try what I did. What I do is look for every loophole I can find, putting this in first priority, or rather almost single priority, so putting my old life, esp. work, aside for a time, spending most of my time, energy and if necessary money on it until I get the hang of the new life and am bit by bit getting a few of the best parts of the old life back.
I must say I didn't have to spend much money on it, 800€ for supps in 2 years, but if I had had to I would have, and if I need to I will: My acupressure for instance costs something like 1000€ a month. Not all is covered by insurance (which is tallying to another 1000€ in the last year), and if they stop paying, as it's long term, I'll pay for it myself. And if I didn't have it, I'd try to apply, praps ask for help (difficult...), or probably scrape it together somehow, done that often enough in my life.
I do not think health is the most important thing in life. If it were, I'd be screwed, way before FM. But my motto is Niebuhr's Serenity Prayer:
"God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference."
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I didn't have to spend much money on it, 800€ for supps in 2 years, but if I had had to I would have, and if I need to I will: My acupressure for instance costs something like 1000€ a month. Not all is covered by insurance (which is tallying to another 1000€ in the last year)
Wow, I know it could be so much worse, but that is such a lot of money! I think that's one of the things that so often gets overlooked with chronic illness. The combination of it impacting our capacity to earn and the costs that can build up as we try to find solutions can be vicious - or simply inaccessible to many sufferers.

The most expensive thing I've done so far has been my stint with a neuropsychologist. Everything is so cheap here in Portugal - he was only 40€ per one-hour session. Physiotherapy here is only 15€ per session. It's quite the economic bubble, but wages here reflect that too. I think I've spent somewhere in the region of 150€ on supplements over the last year. I don't know where I'd be now without access to the Portuguese healthcare system, which is free and fantastic. I feel so much for all who are navigating an insurance-only system with no coverage 😞
 

Uhura

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Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
Good discussion and very helpful. Some doctors are willing to prescribe things that others aren't. To those of you who are struggling to get a diagnosis or the right medicine, keep trying.
 

Carolyn Rhodes

Active member
Joined
Nov 27, 2019
Messages
43
Reason
DX FIBRO
Diagnosis
07/2017
Country
US
State
VA
Thank You Iknopain2, your words are spot on!
 

Drtohelpfibro

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Joined
Oct 31, 2020
Messages
26
Reason
Practioner
Diagnosis
00/0001
Country
US
State
WI
Thanks for sharing. I am a physician in the US with a passion for helping those with fibromyalgia reverse their fibromyalgia with a multifaceted approach. I wrote a book this year and started a podcast on fibromyalgia. Both validate your experience, inform, inspire and equip those to get better. I would love to share more if you are interested.
 
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