Doctors are horrible

[Drummer76]

I had an MRI done on my lower back,for years I habe had pain and every doctor said it was fibromyalgia. Well last week I got the results. I have bulging disc from L3-S1 and they only done the lower back. I having pain in the middle of my back. Also have some mild narrowing on the right side and moderate narrowing on the left.
So my Dr said since I refused the treatments that were offered to me,he wasn't prescribing anything for pain. I have my reasons and what they wanted to do wasn't going to work or a temporary fix I'd have to continue repeating. Steroid injections didn't help my shoulder and I had shoulder surgery back in January for that reason also if you continue getting them,it will do more damage,causing more pain over a period of time. They also wanted to burn the nerves in my back but it was a 3 step process and I'd have to come off some of my heart medications and I won't do it. I just had some issues with high blood pressure and I dont think my cardiologist would of cleared me for that procedure now that I have had issues.
So I am dealing with chronic pain still that other doctors were saying was fibromyalgia when in fact,there is a problem with my back. I've been dealing with this since 2006,I'm pretty sure I know what's going to work and what won't. Glad I have answers,but no relief unless I self medicate,which has worked but not legal where I live,not that I care. I have to do something and that seemed to be the quickest and safest way for me. I don't sit here all day doing it. Just a few hits off a vape and I'm ok. Not really so bad that I can't function, but enough to be out of pain for a few hours.
Thanks for reading my rant about Healthcare in America. BTW I'm no longer seeing that Dr. I've canceled my appointment I had set and probably won't even look for another one. I'm fed up!

 

[sunkacola]

So sorry to hear you are having this experience. I always say, don't even get me started about health care in the United States!

It is nothing short of shameful how bad it is here. You can get anything you want if you are rich, a doctor who listens to you and whatever treatment will work for you, but if you are not rich, forget it. And I do mean rich. Even if you make a decent wage or are middle-income you can't get really good healthcare a lot of the time. If you are working class or poor you are simply out of luck. I have known people here in the richest country in the world who died when there were treatments available, good people who died simply because they couldn't afford to pay for them.

I am just glad there is something that works for you. Again, it's shameful that this medicine that helps so many people is still illegal in some places in this country.

You definitely need a new doctor, and even though you don't want to it would be good to find one, because you may need one at some point for something and better to have established a relationship ahead of time than to scramble trying to find one when you are maybe ill.

And.....you can come here and rant any time. That's one of the things we are here for.

 

[Harpy]

@Drummer76 , so sorry to hear about your back. I think if they helped you back all those years you may not have those bulging disc’s.
The medical system can suck sometimes.
I echo what SunkaCola says.
My pains didnt get blamed on my fibro they all say it’s coming from your neck , thoracic or lumbar, wish they’d realise we know our bodies.
A fluke change of gp’s and within 4 months my gp tells me I have polymyalgia rheumatica.
If they listen properly and check out what we till them people could be helped quicker and not leave it till we need surgery and take up less time at the gp and specialist ect.

 

[Drummer76]

@Drummer76 , so sorry to hear about your back. I think if they helped you back all those years you may not have those bulging disc’s.
The medical system can suck sometimes.
I echo what SunkaCola says.
My pains didnt get blamed on my fibro they all say it’s coming from your neck , thoracic or lumbar, wish they’d realise we know our bodies.
A fluke change of gp’s and within 4 months my gp tells me I have polymyalgia rheumatica.
If they listen properly and check out what we till them people could be helped quicker and not leave it till we need surgery and take up less time at the gp and specialist ect.

I Knew there was a problem and I tried to tell them all these years but it fell on deaf ears until now. Healthcare here is keep them coming back. We aren't patients we are consumers.

 

[Badger]

We aren't patients we are consumers.

Very well said, unfortunately on top of our pain we have to fight for fair treatment. Their attitude can be off-putting and leave us feeling isolated. Here in North Wales, U.K. after our experiences with health care I feel like keeping my distance unless it's an emergency. Having said that it's important to organize and evaluate our experiences to set out a path for better quality of life. If that includes dealing with health care professionals it's important to be clear with them on the issue and sure in our minds what we'll accept.

 

[Day at a time]

I'm new to this site but would like to contribute a bit here. To Drummer, I realize how frustrating this all can be. Unfortunately, most adults have some form of bulging discs over their lifetime just as wear and tear. If they impinge on the spinal cord, then pain, numbness or weakness may occur. Many patients with fibromyalgia have had one or two back surgeries, convinced that it will help the pain, but, like me, it really did not "cure" my symptoms.
As for the healthcare system in the US, don't get me started! I am a retired medical doctor with over 30 yrs. of patient experience. When the insurance companies decided that I was a "provider", I was forced to join a major health system to survive. Gone were the days of delivering a baby and following her to adulthood then to care for her children. Today doctors who care are controlled by insurance companies and big Pharma. and of course, government regulations. It doesn't matter if the patient is rich or poor, the doctor can only bill for what he/she does and gets paid the same by the insurance companies. Then it's finding the cheapest form of a drug to give to the patient.
And that's only part of it. 15 years ago, fibromyalgia was a "wastebasket" diagnosis. Meaning we have no xrays or lab tests to confirm another diagnosis and so we would say it was fibromyalgia. Oh and we, as doctors, thought there was some kind of mental problem that was causing the symptoms.
So when I started having symptoms, I had MRIs with multiple discs bulging and 2 herniations, I had my neck fused and a lumbar laminectomy. I kept checking labs because I was sure I had some connective tissue disease but all labs were normal. But the migraines and the low back pain continued.
I began suspecting fibromyalgia about 10 years ago but never wrote it down because I didn't want my colleagues to think I was crazy!
In my day, you go to work sick or well and "suck it up", so I somehow lived with denial and fibromyalgia because there was no other choice.
But I had so many weird symptoms that I didn't understand, like why did I clean the mirror in the bathroom on Monday and then Wednesday my shoulder and arm hurt so bad and stayed bad for 4 or 5 days. Why can't I remember things the way I used to, etc. You all know the drill.

One thing I do regret is that I probably saw many patients in my practice with fibro over the years but just didn't put it all together. As a family practitioner, I wonder how many GPs really are well read on the topic. I wasn't. There wasn't much out there. I'm still looking for answers and I have since read many studies and treatments, remedies. I have gone to 2 separate rheumatologists and when you say fibromyalgia, I get "there are lots of people who are worse off" and "you look great" and " that's the nature of the beast."

I guess the bottom line is, even the specialists may not know what it's like for you and you have to be your own advocate.
I hope this helps someone out there.

 

[sunkacola]

Healthcare here is keep them coming back. We aren't patients we are consumers.

I really, really wish I could disagree with you about this, but unfortunately what you say here is 100% the truth.

 

[Drummer76]

I'm new to this site but would like to contribute a bit here. To Drummer, I realize how frustrating this all can be. Unfortunately, most adults have some form of bulging discs over their lifetime just as wear and tear. If they impinge on the spinal cord, then pain, numbness or weakness may occur. Many patients with fibromyalgia have had one or two back surgeries, convinced that it will help the pain, but, like me, it really did not "cure" my symptoms.
As for the healthcare system in the US, don't get me started! I am a retired medical doctor with over 30 yrs. of patient experience. When the insurance companies decided that I was a "provider", I was forced to join a major health system to survive. Gone were the days of delivering a baby and following her to adulthood then to care for her children. Today doctors who care are controlled by insurance companies and big Pharma. and of course, government regulations. It doesn't matter if the patient is rich or poor, the doctor can only bill for what he/she does and gets paid the same by the insurance companies. Then it's finding the cheapest form of a drug to give to the patient.
And that's only part of it. 15 years ago, fibromyalgia was a "wastebasket" diagnosis. Meaning we have no xrays or lab tests to confirm another diagnosis and so we would say it was fibromyalgia. Oh and we, as doctors, thought there was some kind of mental problem that was causing the symptoms.
So when I started having symptoms, I had MRIs with multiple discs bulging and 2 herniations, I had my neck fused and a lumbar laminectomy. I kept checking labs because I was sure I had some connective tissue disease but all labs were normal. But the migraines and the low back pain continued.
I began suspecting fibromyalgia about 10 years ago but never wrote it down because I didn't want my colleagues to think I was crazy!
In my day, you go to work sick or well and "suck it up", so I somehow lived with denial and fibromyalgia because there was no other choice.
But I had so many weird symptoms that I didn't understand, like why did I clean the mirror in the bathroom on Monday and then Wednesday my shoulder and arm hurt so bad and stayed bad for 4 or 5 days. Why can't I remember things the way I used to, etc. You all know the drill.

One thing I do regret is that I probably saw many patients in my practice with fibro over the years but just didn't put it all together. As a family practitioner, I wonder how many GPs really are well read on the topic. I wasn't. There wasn't much out there. I'm still looking for answers and I have since read many studies and treatments, remedies. I have gone to 2 separate rheumatologists and when you say fibromyalgia, I get "there are lots of people who are worse off" and "you look great" and " that's the nature of the beast."

I guess the bottom line is, even the specialists may not know what it's like for you nd you have to be your own advocate.
I hope this helps someone out there.

I'm aware of that. I have read on it. Most of the time they don't really bother people and most don't even know they have them. But in my case it's different. They are and have been bothering me for a long time,more thie past month then ev
My dad was hospitalized last month and after less then an hour I had to leave. My lower back was hurting where I couldn't sit. He's terminal so it was upsetting having to leave him alone.

 

[sunkacola]

@Day at a time , I read your post with great interest. It is fascinating to hear a "fibromyalgia story" (we each have one) coming from a medical doctor! And to hear that, for you, it was really every bit as frustrating as it is for anyone else, compounded by not wanting to admit something to your colleagues that might make them look down upon you.

I know a highly talented and intelligent woman who decided to become a nurse practitioner even though she wanted to be a doctor and had offers from medical schools, simply because of what doctors have to go through these days. I know of brilliant students who have interest in medicine deciding to pursue chemistry or engineering instead because of the broken medical establishment we have here.

I wish something could change. It's such a huge tight knot of factors, I don't know how it would ever get untied into a system that was actually geared towards helping people.

 

[sunkacola]

Might I add my personal Pet Peeve?
I HATE the fact that these days in the US your doctor is no longer your doctor, they are your "provider"!
I refuse to use the word, and instead I stubbornly stick to saying "doctor" at all times.
I do not say PCP. I say "my main doctor", or just "my doctor", since I only have one anyway.

A few years ago I was at the counter in the low-cost medical clinic I was using back then. I asked a question of the person at the counter, and she said, "I don't know, you'll have to ask Yappa Vyda" So I said, "OK, where do I find Yappa Vyda?", figuring that this person had an office somewhere that I needed to find.

Of course, it finally turned out, after several repetitions, that she was saying "your provider". Which, at the time, I still didn't understand. "My provider of what??"

Why the heck can't we just say DOCTOR any more?

OK, that's my rant for the day.

 

[Drummer76]

And we are considered consumers now,not patients. Miss the old days of real medicine.

 

[Ayame_34]

I'm so sorry your going through that. My Mom went through the same thing years ago. Doctors kept giving her the runaround and kept stalling and giving her an MRI. She was in so much pain that she cried herself to sleep and she couldn't walk. I was just about fed up with her doctors more than she was. But thankfully one that I took her to emergency one doctor was still being a butthole and wouldn't listen to her and tried to send her home, but after I strongly suggest it to the nurses that they do something they ended up keeping her.

The next morning a different doctor gave her an MRI right away and found out that she had a basket that was pinching her sciatic nerve causing her not to be able to walk. They had to do emergency surgery because the doctors took so long to find out what was wrong with her. I understand the frustration hopefully you'll decide to get a new doctor there are good ones out there. I know they're a diamond a dozen but I got lucky with a doctor for myself too. I have fibromyalgia and degenerative disc disease in my lower spine. After 5 years I finally found a good primary care doctor. After I get my insurance together I plan on getting different Specialists and hopefully they're good ones. I'll be praying that you feel better and hopefully find a better doctor that will listen to you and actually help you.

 

[Tulip]

The rheumatologist who diagnosed my fibro 7 years ago retired shortly thereafter. His successor does not deal with fibro, nor does any rheumatologist in my local or any surrounding area. So ... my primary care doctor referred me to the Cleveland Clinic. And guess what??? The Rheumatology Department at Cleveland Clinic refused to see me BECAUSE THEY DO NOT DEAL WITH FIBROMYALGIA!!!! I see a pain doctor, take meds, receive regular deep tissue massages, exercise, try to remain active, but I feel pretty much like I'm fighting this battle alone. Does anyone else have trouble finding a doctor who will deal with Fibromyalgia?

 

[SBee]

@Tulip in a word YES.
I was diagnosed with fibromyalgia in December from a pain clinic ( in UK), they mostly suggested lifestyle changes, which I do try to implement. However she did advise my GP that some of my symptoms also indicated an inflammatory arthritis and after investigations I was diagnosed with seronegative inflammatory arthritis and central sensitization syndrome to go alongside the existing osteoarthritis.

He then said point blank ' we wont be dealing with the OA or fibromyalgia here ".

A single GP at my surgery has been helpful and supportive, but I do feel these days seeing a dr is a bit like attending a court - you have to argue your points across in a calm and very well researched way.

I think trying to live with fibromyalgia is very much down to our own hard work,I think we are pretty much on our own with this, its us who are experimenting with what works for us - or doesnt - hopefully if we choose to do so with meds a dr will prescribe, but generally we seem left to our own devices. hence the important information and support from forum members .

 

[sunkacola]

The rheumatologist who diagnosed my fibro 7 years ago retired shortly thereafter. His successor does not deal with fibro, nor does any rheumatologist in my local or any surrounding area. So ... my primary care doctor referred me to the Cleveland Clinic. And guess what??? The Rheumatology Department at Cleveland Clinic refused to see me BECAUSE THEY DO NOT DEAL WITH FIBROMYALGIA!!!! I see a pain doctor, take meds, receive regular deep tissue massages, exercise, try to remain active, but I feel pretty much like I'm fighting this battle alone. Does anyone else have trouble finding a doctor who will deal with Fibromyalgia?

Yes, this is very common, and I am so sorry you are having this experience.

What @SBee says above is very true. Mostly, it is up to us to do what we can to help ourselves deal with this. It's frustrating to many of us to realize this, but that is only because we are conditioned in western society to think that doctors are the ones with the answers and can always make things better.

I found that once I fully accepted the fact that doctors were not going to be able to help me past prescribing medications and that if I wanted more than that I was going to have to find out for myself what other things would help, that frustration and the resulting anger and tension and stress was able to leave my life. And that in itself helped. Then, I worked on finding out what kinds of things I could do for myself, and that helped more.

If you are seeing a Pain Specialist at a Pain Clinic, then you have people who will work with fibro patients, and that's the best you are going to get, because a neurologist, or a rheumatologist cannot do anything more for you than the people at a pain clinic can! The only thing any doctor can do once it is determined that you have fibro is give you medication for the pain.

But it's important to remember that medication is only a small part of the treatment for fibromyalgia, and the rest of it is up to us to provide for ourselves, because there's no medication that will take it away, cure it, or even work well for everyone with fibro.