Venting! Doctors suck!

[thparker13]

Sorry I’m venting today, just left a surgeons appointment for him to spend maybe 10 mins with me and no suggestions after I waited over an hour and a half to see him.
So here’s the deal, I’ve had chronic neck pain for over two years now, I’ve had so many injections and have now done ablation twice in different levels since they weren’t hitting the target the first time (go figure, even when I told them they were to low), any who, another surgeon noticed I have a cyst and suggested that might be what is causing my pain and headache so he suggested I speak to another specialist to see what he thinks. I was just grateful at the idea that finally, after two years, someone looked harder and noticed something… well I was so excited to get this appointment today and looking forward to answers just to be deflated and dismissed. He told me that there was nothing for him to do and the cyst couldn’t be causing me issues and walked out..
I can’t help but feeling so frustrated, I’ve literally been in so much pain for over 2 years. I understand that my MRIs only show slight issues, but it’s those issues that are causing me great pain! I’m not asking for surgery, I’m not asking for pain killers, I’m literally asking for answers!
I think what is so frustrating is that there is pain, I have mobility issues, physical therapy didn’t help, injections haven’t helped, ablation hasn’t helped but it’s ok for them to just suck it up and get passed it. I promise you, if any of these doctors suffered the way we do, they would immediately be treated and yet we are told to just live with it!
I’m so irritated, frustrated and completely defeated! Chronic pain is no joke and is utterly exhausting, and yet most people have no clue what it feels like to live everyday like this.
If any of you have any suggestions, please, I’d love to hear them! I take plenty of meds and supplements, I’ve done PT, I sadly can’t afford acupuncture or massage, if there are any other suggestions, I’m here.
Thank you!

 

[JamieMarc]

@thparker13 What about neck stretches and self-massage? Have you examined your sleeping position and evaluated how your pillow(s) might be affecting your neck? Just some thoughts. There are other neck exercises, too, that you can search for on YouTube.

I have osteoarthritis and cervical radiculopathy in my neck. I have found a pillow (after many tries) that works well for me, and employ daily neck stretches, especially in the morning, as well as self-massage throughout the day. I'm also careful about my neck posture in relation to whatever task I am performing. I do take medication, also. And supplements, like you.

Hugs, my friend!

 

[thparker13]

Thank you for responding! Yes, I have the same issues as you with my neck along with multiple levels of bulging discs, but they say that is normal. I also have a slipped vertebrae, but not enough for them to care about as well.
I have tried soooo many pillows and found one that works for me as well.
I do try to do some stretching and massage, but the pain is mostly centralized to the center so it’s hard to fix that.
Just frustrating when I know there is a problem but yet there are no true answers!

 

[sunkacola]

Just frustrating when I know there is a problem but yet there are no true answers!

I fully get this. And unfortunately, that seems to be what those of us with fibromyalgia have to deal with all of the time, one way or another. At least, we can come to this forum and understand and support each other.

 

[Fibromom3]

I’m so sorry for you. I completely know what you are talking about. I went to do many pain specialist that did nothing to help me and I just wanted to jump off a bridge. It wasn’t until I flew out to John’s Hopkins hospital in Baltimore that someone made me feel like I wasn’t crazy. They believed me, and helped me get on a road to help. Please let me know if you have any questions. If you are anything like me you are not “med seeking” you just need medicine to help you feel better. My new specialist said only 5% of people that go to pain specialists are med seeking… the other 95% just need real relief from the awful pain we have. Don’t let people shame you.

 

[sunkacola]

Hi Fibromom, I'm glad that you finally found some reasonable help from doctors. And...I am interested to know what the folks at John's Hopkins did that helped you get on the road to help. If you don't mind telling us, that is...I think it might be helpful for others to know what was helpful to you.

Interesting statistic on people and pain specialists I don't know if that is technically accurate or not, but I completely believe that it is, or is at least very close to being true. The fact is, if a person were simply seeking drugs there would probably be easier ways (although illegal) to get drugs than to go to a pain center and get drug tested and have to fill out innumerable forms and talk to doctors. None of us who go through this think it's fun.

And yes.....do not let ANY one shame you for wanting to get some relief. Anyone who tries to do that simply doesn't have a clue what it is like to live with this every day. I don't blame anyone for not understanding, but to try to make someone ashamed or refuse to believe what we are saying is genuinely cruel.

 

[thparker13]

Hi there Fibromom! Thanks for responding!
It’s so frustrating to see how these doctors just shrug off fibromyalgia like it’s nothing.
I did however go see a new Rheumatologist earlier in the week and to my surprise he said he feels like he knows what is going on with my body, and also said, it’s not to say I don’t have fibromyalgia with this but he believes I also have Non radiographic axial spondyloarthritis. What a mouthful! I am not trying to understand this and what this means to me as well.
I also see a pain specialist, and mine continue to throw whatever I want or don’t at me, I’ve explained that pain pills give me constipation, and can’t tolerate them as they make me itchy as well.. so their answer was to add another medication.. I absolutely cannot take more medication! So frustrating!
I am however happy to finally find a rheumatologist that is going to work with me and has answers, as were the only said, and I quote “I’m sorry you are hurting, there is nothing I can do for you, it’s in your head, download an app for mental health, this is what fibromyalgia is, a mental thing” I literally was crying, I was having an awful flare-up and his remarks left me exhausted and angry!
I too would be interested in hearing about what John Hopkins had to say! Here in Las Vegas, we don’t have the best healthcare, and the closest to me would be me going to California or Arizona in hopes for some answers.. instead I rely on finding the best doctors for me that my insurance will cover.

 

[Sibergirl]

Thank you for responding! Yes, I have the same issues as you with my neck along with multiple levels of bulging discs, but they say that is normal. I also have a slipped vertebrae, but not enough for them to care about as well.
I have tried soooo many pillows and found one that works for me as well.
I do try to do some stretching and massage, but the pain is mostly centralized to the center so it’s hard to fix that.
Just frustrating when I know there is a problem but yet there are no true answers!

I feel like I could start my own cervical neck pillow company just because of all the ones I’ve bought and never returned that are stacked inside my daughter’s old room. Also, I think you mentioned in a previous post something about doctors thinking you were medication seeking? I had a pain management doctor do that to me. It was so incredibly horrible, that I cried all the way home. I called my husband stayed on the phone with me while I drove home because he was worried I was crying so hard that I was gonna crash into something. It was early evening and I didn’t wanna stop on the side of the road just to stop my eyes out. I’ve never been treated like that before by a doctor in my life. I looked at him and I said, “I am a suburban homemaker who used to be really active and suddenly is in the worst pain of my life, every single day, all day long, and all I wanna be able to do is walk my dog and just be with my family, and be normal. And you’re accusing me of coming here looking for drugs?!? I don’t even want hydrocodone.” All this was in the middle of Covid and everybody in the room had masks on and I couldn’t read their faces. It was so incredibly awful. I felt like I’d been psychologically assaulted. Needless to say, I never went back, but I did call them the next day, and I read them the right act and said I would never ever ever refer anyone to their practice. I told him that I didn’t care how many people showed up, trying to shake them down for drugs. They shouldn’t just assume that of everyone who walks through the door. Then I left a scathing review on the Internet.

 

[thparker13]

It’s been rough for sure! I’ve had so many surgeries, I have so many doctors for various things and never have I asked for pain meds, I ask for answers! I just want to know how to feel so called normal and participate in my life! As of lately, I have been struggling, I feel as if I have no life and all I feel is pain! It’s absolutely exhausting and nobody gets it because it’s not on the outside where people can see it!
Thank you for responding, it’s never nice to hear that someone else is going through this too, but it’s also nice to know I’m not alone in the struggle!
I wish doctors had to have better bedside manners for sure and stop assuming everyone is seeking meds. I get it, they see a lot of people who are, but what about the ones that are not!

 

[Anabrock]

I really feel for you thParker13. It sounds awful!

This reminds me of when I had cancer recently. Everyone was saying how well I was coping and were amazed at my calm. The thing is, having had fibro and hypermobility symptoms for 15 years+ I was used to having to justify my symptoms and justify my pain, give them extra evidence I was telling the truth etc. I was surprised if I *wasn't* gaslit and disbelieved, or had it blamed on my mental health. When I got cancer, everyone believed me (of course), everyone took it seriously, gave me a treatment plan, a prognosis, useful case histories of patients who'd trod my way before. When I complained about severe pain post-op, they didn't argue, they just gave me the good stuff. When I expressed concern about the amount of morphine I was taking, I was reassured it wasn't harmful in the short term. They actually argued with me when I asked for paracetamol (aka Tylenol) and said morphine would be better as I'd be in significant pain. Can you imagine doctors treating our fibro like that?

It sounds weird to say it was easier to deal with cancer than with fibro, but it was (for me). So I hear you. Having a painful, mysterious condition which ruins your life while specialists have no idea what it is, what causes it, and may even doubt it's real... that's horrible. Way worse than my cancer.

 

[thparker13]

@Anabrock
Wow, I am so sorry you had to go through cancer! That is absolutely awful! I hope you are on the other side now and doing well!
I recently went to a new rheumatologist and was diagnosed with Seronegative Spondyloarthropathy along with Fibromyalgia. I personally struggle with talking about my pain or living with any of this because I know others out there are dealing with so much more, so I do suffer in silence. Only until my husband sees me seriously struggling will he ask me if I’m ok, and that’s ok too. I do expect and want my doctors to figure this out and help me live a better life.
I appreciate you sharing your story with me. I had a friend who her mom suffered from cancer, and I first hand saw the devastation from that and the pain pills they gave her on a regular basis.
I’ve only asked for answers, and have been left with either doctors not knowing what to do or how to treat it or tell me it’s in my head. I think that is the most frustrating part of this!
Thanks again!

 

[sunkacola]

It sounds weird to say it was easier to deal with cancer than with fibro, but it was (for me)

I think this might sound weird to someone who has never had fibromyalgia. But to me, anyway, it doesn't sound weird at all. At least with cancer, no one is trying to tell you that you are making it up, or drug-seeking or a hypochondriac. Of course, on the other hand fibromyalgia is not fatal as cancer can be. But I m not surprised to hear you say this.

 

[Harpy]

Hi @thparker13 , oh I really feel for you. I suffer from full spinal issues and was wondering if you found yourself a good rheumatologist?
I have and he has done so much for me in the last 2 1/2 year and just had 4 ablations this week and will have 4 next week. Then 10 more after that.
I am so lucky to have found him, he really does seem to care.
Have you had a Spec/CT with contrast.
One where they do a full spine CT then inject you with contrast , do another full spine CT. You go away for an hour or two moving, drinking and eating, doing normal things and go back for another full CT ? It shows up so much more . I have these every 2 years now.
Don’t stop searching you will find the right help soon enough .

 

[thparker13]

@Harpy - good morning! I just started seeing a new rheumatologist since the other one, who was really good when I met him, but then turned and said that pain is in your head and needed to take turmeric and ashwaganda. So, the new one seems to be ok, I just don’t get to see him very often and I feel in the beginning it should be monthly, but it’s quarterly.
I have an orthopedic surgeon that I see for my hip and he has me getting an MRI to scan my hips and lower back, which I have had a fusion and disc replacement. My neck also has issues and have had ablation twice and sooooo many injections. I see that specialist next month as well. My bones have apparently moved and may be causing the pain, so I may have to have surgery.
Honestly, I feel as if I’m falling apart from the inside out.
I just want answers, that’s it! If someone could just say, this is the issue and how to fix it or at least allow me to live a better life. It truly is exhausting going to so many specialists, but I keep doing it and hoping for some answers.
I appreciate the response!

 

[Harpy]

@Harpy - good morning! I just started seeing a new rheumatologist since the other one, who was really good when I met him, but then turned and said that pain is in your head and needed to take turmeric and ashwaganda.

I have been taking tumeric and black pepper for years, still waiting for it to help .

So, the new one seems to be ok, I just don’t get to see him very often and I feel in the beginning it should be monthly, but it’s quarterly.

I agree it should be more often, my rheumy is 6 monthly. Though he will see you if you can get past the receptionist.
That’s why I tend to email him as he sees his emails lol which helps

I have an orthopedic surgeon that I see for my hip and he has me getting an MRI to scan my hips and lower back, which I have had a fusion and disc replacement.

I was on a waiting list for lumbar fusion then years later I rang to see where I was on the list. Apparently seeing my very 1st injection worked little did I know they took me off it, tell you what I wasn’t happy. Now my lumbar has calcified itself fused .

My neck also has issues and have had ablation twice and sooooo many injections. I see that specialist next month as well. My bones have apparently moved and may be causing the pain, so I may have to have surgery.
Honestly, I feel as if I’m falling apart from the inside out.

I have had a total of 107 injections and now counting on the ablations to help with some longer lasting relief.
I’ve always put off surgery as I know the domino effect is bad but in hindsight I think maybe I should have Thad the fusing , my spine’s deteriorating too fast now.

I just want answers, that’s it! If someone could just say, this is the issue and how to fix it or at least allow me to live a better life. It truly is exhausting going to so many specialists, but I keep doing it and hoping for some answers.
I appreciate the response!

It isn’t too much to ask is it. There is so much the can do medically now . Surely they can come up with something that can help us .
Keep us up to date on how you go . Good luck