Having problems with Doctor's who believe in Fibromyalgia

[DebbieYoung]

Moved here to Maryland, excited my doctors would be Johns Hopkins, over rated. They sent me out to a doctor at Kernan, awesome doctor, but he no longer is in my network. I am in constant pain. Anyone else have problems with finding a doctor? I don't even like to take pain meds, other doc worked with me with PT alternative treatments, trigger point injections. I'm moving to Myrtle Beach, hoping to find a doctor there.

 

[Cajuncamaro96]

Re: Having problems with Dr''s who believe in Fibromyalgia

The biggest problem is that many doctor are in debate as to whether fibromyalgia is a true physical disorder or if it's a psychological effect. Most doctor of internal medicine think that psychiatrist are full of it. Some doctor will call fibromyalgia a psychological trauma or hormonal imbalance that has the exact symptoms and that will fall into a psychological category to an extent but if it's truly a hormonal imbalance, then an endocrinologist is very good start and a rheumatologist to help you with the right treatment

 

[Dooi]

I don't disagree with your comments and their validity. We can all relate to the experience of doctors not believing this is an actual condition. It doesn't stop there either, family and friends too. But I take issue with this way of thinking because there's been numerous scientific studies that have found genetic biomarkers that all Fibromyalgia patients have in common. If it's in your genes how can it be a psychological issue. Considering 3%-6% of people worldwide suffer from this you think greater efforts would be made regarding education and study.

Back to the thread starters original message. I do hope you can find an understanding doctor in Myrtle Beach. I believe the population is older there, if so, likely some understanding doctors when it comes to complications with pain.

 

[Cajuncamaro96]

I replied based on what experience I had with them.

 

[Cajuncamaro96]

Gland dysfunction can be hereditary but it still falls on a thin line of being a psychological issue for the effects on the mood. That's like when a patient lies about illicit drug use and that was what caused the entire problem they have but if the Dr doesn't know or find it in labs, how can they give a true diagnosis? Yeah meth makes people schizophrenic because of the effects it has on serotonin norepinephrine dopamine release. Is there still a chance that person might not have been diagnosed with schizophrenia? Very much so. Drug induced illness happen all the time.

 

[Dooi]

I've actually never spoken to an endocrinologist and had to look up what they do

 

[vickythecat]

I am on the other end of the spectrum - fibromyalgia seems to be an illness many doctors love to diagnose where I live. If a basic blood test comes back looking fine and they do the 8 trigger point test (pressing incredibly hard by the way), they say 'you have fibromyalgia, you have to use meds and go to our physical therapy unit your whole life'. It is truly disgusting how money-crazed doctors can be. You'll even see all kinds of merchandise from the big fibro pharmacy brands in their offices.

The first doctor that ever 'diagnosed' me had her room littered with posters, brochures, pens, calendars etc. with the brands we know all too well. It was a private hospital that looked more like a 5 star hotel. She dismissed all of my complaints as 'fibromyalgia' and did not even go into further testing, and told me that I needed physical therapy EVERYDAY for the next few years. I was in a lot of pain, so I went along with it in the beginning, but was shocked to see what their 'physical therapy' was like. I had lived in Europe before that, and had been to physical therapists for many years, so I knew what it was. Here they just put A TENS machine on my painful bits (hello, my whole body is aching!) and a heating pad for 25 minutes, gave me a leaflet with exercises I should do, and that was it!!!! No one even touched me, looked at my body to see where the problem could be. Nothing. And guess how much it cost - 150 dollars! Plus a long list of medication. Thankfully my insurance covered it all, but I was so disgusted and shocked.

It was also the reason why I was very sceptical about the illness fibromyalgia for many years. I did not help that so many people around me were also being diagnosed with it and talking to them, they seemed to have 1/5 of my complaints. They were all working full-time, had kids, were all dressed well, high heels, full make up, traveling the world, partying, weekend get-aways etc. I cannot dismiss their complaints, but it just pissed me off even further. There I was unable to even shower or get out of bed, and people saw these other people with fibro and thought I was exaggerating.

2 years later with symptoms so severe that I had to quit my job, I went to 4 different doctors and they all diagnosed me with fibro. I made sure this time they were 'state funded' doctors, so they were not brainwashed by big pharmaceutical companies.

That said - I still have my doubts about 'fibromyalgia'. Doctors and researchers still have no idea do they? It seems to cover too many symptoms, so I think the diagnosis should come with grades to begin with. Grade 1 being mild, grade 5 being severe, for example. Also whether it is a progressive type or not. When I was first diagnosed by that 'brainwashed' doctor I was only a 1. Now 7 years later, I am definitely a 4. They say it is not progressive, but in my life it sure has been. I am sure many of us here can agree with that.

 

[diamond]

Mine has progressed hugely in 10 years...Doctors in UK vary so much you have no idea what attitude or understanding you will get from one to the next.

 

[Sagey]

I believe Fibromyalgia can be progressive in some people. And it does have many specific symptoms to the disease.Many of us have shared them.

But it is a real disease and there are so many clinical trials and research being done right now, that their will be better treatments and medications to help us.
We are here because we believe we have this disease or are being diagnosed with it.

It is some physicians that don't believe that this is a true disease.It is something we have all experienced unfortunately.So us doubting Fibromyalgia undermines us trying to promote education of this disease.
It took a long time for Fibromyalgia to even be researched,and some people have waited years, to finally be heard and believed.

We all have to support the fact that Fibromyalgia is a real disease and we will continue to see improvements in the near future.

Sagey

 

[Koren55]

Like many others, it took many years and many physicians to finally come up with a diagnosis.

Before I was diagnosed, I saw pain doctors, orthopedic docs, endocrinologists, psychiatrists, and regular Doctors. Then I was referred to a Rheumatologist who specialized in Diagnostic Dilemmas. (He was sort of a Doctor House). He ordered so many tests, including various genetic ones. Then after ruling out everything thing else, he made it official, said I had Fibromyalgia.

And that's what Fibromyalgia is, a diagnosis of last resort. Sure they claim those who react to those trigger points have it, but many of us don't react to a specific number of them, do we?

Many Docs do think it's psychiatric, or did in the past. Now, if we only had a true scientific test to determine our diagnosis was in fact Fibromyalgia, I'm sure the Medical world would be surprised at how many we are in the world.


My journey has been difficult. I was always suffering from health problems, muscular and joint pain, and sometimes I'd get chronic fatigue. But in the mid-nineties I had a tonsillectomy one year, and sinus surgery the next. Both procedures were extremely painful. The worse part was having the packing removed after my sinus surgery. The pain was tremendous, I had never experienced that high a level of pain (more than kidney stone pain). I began going into shock right in the Doctor's office. It was that episode, of extreme pain, that the fibromyalgia began affecting me in earnest. The muscle pain I used to experience, came back with ten times the amount of pain. The pain would make me nauseous, to the point where I'd run to the bathroom to vomit. It took about 5 years to get a definitive diagnosis.

 

[sunkacola]

I want to thank everyone for giving their experience and opinions on this thread. I find it very interesting.

I think that the conflict that exists and the debate on whether or not the disease is "real" and whether it is psychosomatic or not stems from the fact that it is such an "umbrella" kind of diagnosis. There is such a huge range of symptoms and severity of symptoms that the term covers far too much to make it a simple diagnosis. It is a huge spectrum, and you can fall anywhere on that spectrum. On top of that, it is many layered, affecting the mind and the body in so many ways, and again you can be anywhere on all of those spectrums.

To top it off, it is often thought to follow trauma, mental, emotional, or physical of some kind. I think that is what has happened in my case, in fact.
And many ill-informed doctors like to think that if something follows a mental or emotional trauma then that means the disease is psychosomatic, and not physical, so it is "all in your head".

But this is ignorance, and is doing many people a grave disservice. The body and the mind are one - they cannot possibly be separated. Even if it is true in some cases that the disorder started with an emotional trauma, that in no way means that the disorder is not now physical in nature.

An emotional trauma such as prolonged very high stress can, for example, actually physically burn out your adrenaline gland. I had this happen to me once. It results in your adrenaline gland malfunctioning for anywhere from weeks to months. this is not psychosomatic, but a physical reality. Eventually it re-calibrates and is OK again in most people, but that is a prime example of an emotional trauma causing an actual physical malfunction.

If fibro is a disorder of the central nervous system, whereby it sends inappropriate pain signals to the brain, then it stands to reason that it could be pushed into existence through either emotional or physical trauma, because both those things have immediate effects on the central nervous system.

there is so much that is still completely unknown about the brain and how it operates that it seems to me it is extreme hubris for any doctor to take the attitude that a disease affecting so many millions of people's physical lives is "only psychosomatic".
In the future, the interaction between the brain and the body will be better understood, and such damaging and demeaning attitudes will become a thing of the past.