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Need help talking to doctor

I've had an.. interesting journey through the mental health system. I was given a few diagnoses and a fairly strong course of medication. 

I could write an essay on why those diagnoses were so amazingly inaccurate.

I asked my gp for a referral to a clinical psychologist so that they could review the diagnosis, and he told me a new diagnosis would just be another label and that we should focus on treating the problem, not on naming it.

The thing is, I like labels. I find data and studies useful. I like being able to find others who've had similar issues. And I kinda like to understand what a problem actually is before I try to fix it.

I eventually "won", and got the referral. 

I got a proper report, accurate diagnosis, and a review by a psychiatrist. 

Which is where I found out that I had been on the wrong meds for my condition, and that they had a whole heap of side-effects that no one had bothered to tell me about.

It took an accurate "label" (diagnosis) for me to get an appropriate treatment plan.


In the meantime, I developed a chronic pain condition. 

My gp, in his infinite wisdom, said a new diagnosis would be just another label, and that naming the problem wouldn't fix it. Smiley Frustrated

He told me to exercise more. Exercise makes my pain much, much worse. And not in the normal delayed onset muscle pain way either. So I'm now trying to get a diagnosis, eliminate as many possibilities as I can, and am learning more Latin and ancient Greek than I ever wanted to know.

While at the same time trying to convince my gp to do his damn job and help me figure out why I'm struggling to walk.


I need to have a really serious talk with him about the importance of accurate diagnoses when working out my treatment plan, and I need to explain to him that lack of one has caused me a lot of harm in the past.

I also have to do this in a respectful, effective and honest way. Does anyone have any advice or ideas or anything? Literally anything would be useful right now.


Re: Need help talking to doctor

Hi @Tiny_leaf! I get what you mean about labels. They can be really helpful for some people for a lot of reasons. It can be a weight off your shoulders and feel like you're getting somewhere by knowing what the issue is, for example. I'm one of those people who is generally more concerned with whether the professionals are able to help in some way but everyone is different and it also depends on the context and type of problem I'm dealing with. Inaccurate diagnoses can be such a pain, especially if they are blindly accepted by other professionals, who then perform the wrong treatments.

It can be really hard to get a proper diagnosis for a chronic pain issue. Things that can cause chronic pain don't often show up on scans or tests. Smiley Sad I can kind of understand your GP's thinking because in some chronic pain conditions, there is no physical injury or the nervous system is sending constant pain signals and going into overdrive when it shouldn't be. But at the same time, I'm not a doctor but I feel that he should be trying to rule out other causes and conditions instead of just dismissing you. Even if a doctor says that the problem is 'functional', which means that they cannot find a physical or structural cause for the problem, then it is still a diagnosis and most functional issues can be treated and reversed. My sister's problem is kind of like the hardware (her organs and limbs) being normal but the software (her nervous system, perception of pain, movement, etc.) is 'misfiring' and glitching.

I have had to talk to doctors and express my concerns about my treatment. I find that I'm more likely to stick to a treatment and be more optimistic when they explain to me why they are doing what they are doing. I usually print out some notes and write down questions to ask the doctor at each appointment. I have also been on more than 10 medications for my eyes and so far, I haven't had much relief and the problem just keeps coming back. I downloaded an app called Flaredown which I can use to rate my pain and how active my conditions are and chart them against the treatments that I'm doing to see if they are providing any benefit. It could be more persuasive to show the doctor that your condition is not improving despite his suggestions. Keeping a diary or tracking your mood can also be beneficial when you're receiving psychological treatment because people tend to like seeing if they're feeling better and whether the treatment is helping.

Sometimes it can also be helpful and persuasive to tell them, 'I really liked coming here and respect what you have to say, but I feel like I need to get a second opinion because after all this time, we still don't know what the issue is and nothing is helping.' That could push him into doing some more investigations. I've had to do that with someone for my eyes. If they are an ethical person, then they shouldn't have any problem with that and in some cases, may actually recommend someone else you can see. I've actually had professionals refer me to other people when they don't have enough expertise to treat the problem.

Another thing I have done is bring a family member or friend to the appointments who can back me up, ask questions and share concerns that I haven't thought of. This can be really helpful if you feel like you need a bit more courage to disagree with your doctor. I'm a pretty introverted person and don't like making a fuss, so this has worked for me in the past.

You could also try asking what are your other options other than exercise. If they are unwilling to discuss other options, then it is a big red flag. Even my surgeon offered me various options and made it clear that it was my choice to go through with the surgery. If they are going on a tangent about exercise or talking over you, try to bring the conversation back to what you want to achieve out of it. For example, 'exercise is fine and all, but what do you think the problem actually is?'


Re: Need help talking to doctor

@WheresMySquishy in theory I'd only care about if the doctor could help as well, but I also like knowing that they're helping me with a problem that I actually have...


And both my "hardware" and "software" are at least a little messed up.. I'm lucky like that Smiley Tongue

My guess at this point would be that it's probably functional/ psychological or autoimmune. But I mean.. even if it is "all in my head", so is my depression, and I'm getting treated for that.


And I agree with ruling stuff out. Even though chances are it's nothing too horrible, there's still a small chance of a degenerative nerve issue or my spinal column fusing or something, which I'd personally like to rule out before my doctor starts treating me for lack of fitness.. Smiley Frustrated


Oh my gosh your poor eyes...! It must be "fun" to fill out the "list all your medications" questions on forms..


Yeah, I need to take more notes during the actual appointment..

And my gp seems to assume I'm exaggerating my pain levels... I even drew a diagram for him, showing where I was in pain and the average pain level between 1-10, so I'm not sure if Flaredown would work with him, but it sounds really useful for the doctors who are better at listening. That sounds like a really good tool for my rheumatologist appointment.

I need to look at the windows store as well, they have some really cool free stuff there that might be similar.


Oooh, asking for a second opinion might work, or suggesting I might need to get one if I'm not making any progress could convince him to look at the problem a bit more.

I think he'd be a bit upset if he felt like he hadn't done what he could/ should of, so asking that might be a nicer way of saying "you're not doing much of your job here"...
I'm glad that you were able to get referred to new people when your doctors didn't know what to do!! I feel like that should be one of the first things that doctors are taught, since no one can know how to treat everything.

And yeah, I take my mum with me for the same reason, though half the time is me silently begging her not to mention yoga or swimming...


I really like the last one!! Asking specifically for other options could be really good, and if he's going to come up with other ideas he'll probably do it after being directly asked.


Re: Need help talking to doctor

I'm actually just going to add that for anyone reading this that the stuff in the health category of that store is often not made by medical specialists, so please don't use it for medical advice.

Free windows apps should not be used for diet advice, or as a replacement for a doctor/ therapist, or anything like that, but a few are trying to sell themselves as that.

Please use sensible caution when looking at health apps, and make sure that they're reliable before using them.


Re: Need help talking to doctor

@Tiny_leaf  I forgot to mention that there are also apps where you can map your pain using diagrams and indicate what kind of pain it is. My doctors asked me what kind of pain I had in my eyes, how often it happens, what times of the day it happens, and whether it was a deep pain or not, so I think they could have some value.

Even if the problem is functional, it can still be diagnosed and treated. It doesn't mean that the problem isn't real. I think a lot of doctors and physios don't know how to treat functional problems, unfortunately, and just kind of try anything like what my sister's old pain specialist was doing. The hospital is now trying to take her off the medications he put her on because they weren't doing much and actually can make her condition worse.

I think ruling out conditions can give patients a lot of peace of mind. I think it is often better to have something that doctors are confident is functional than to have a serious or deadly disease. I read about a patient with FND who spontaneously recovered after being given the diagnosis by a supportive, reassuring doctor, so I think there are benefits in making a proper diagnosis rather than being stuffed around or not knowing what the problem is.

My eye doctors actually have a large file on me which they seem to share with each other (they're in the same office) and read before seeing me. I tend to get put on one medication, then they discover during the next appointment that it's not working, so they put me on another one, and then the cycle continues. I've tried most of the over-the-counter stuff and now I'm onto prescription ones. I've now started to keep a record of which ones I've tried.

I have no idea why some doctors aren't willing to refer a patient onto someone more experienced. My sister's pain specialist never consulted with his colleagues who are experienced in treating CRPS, even when we asked him whether she had it. The nurses and physios even told us to get her to another hospital because no one knew what they were doing or how to treat her when she was under the pain specialist's care. There were doctors involved who had never even heard of her medical conditions as well.

I know what you mean! Sometimes family members can be a hindrance rather than a help. My dad insisted on coming to some of my appointments and sometimes, he would just say some really embarrassing stuff or try to use it as an opportunity to socialise with the doctor. I found that discussing my concerns with my uncle who is a GP to be helpful because he would tell me what kinds of questions to ask.

I think another good question to ask is what could happen if the condition is left untreated. I think a lot of chronic pain conditions have to be treated promptly in order to stop them from getting worse. That could push him into doing something about it.


Re: Need help talking to doctor

@WheresMySquishy that's so cool!!

And it sounds way easier than hand drawing and coloring a diagram...

Do you know the names of any of them?


That recovery sounds amazing!! I wish it worked like that more often, I mean, how cool would it be to get an x-ray of a broken ankle or a diagnosis of anxiety and have everything start to sort itself out!


And same.. at least with functional stuff recovery is a possibility. With some of the more serious stuff all that they can do is slow down how fast it gets worse..


My mum actually has a large file on me, that she drags to my appointments. My doctors aren't great at sharing information otherwise.


And that idea could work as well!! I need to literally take notes from this..


Re: Need help talking to doctor

@WheresMySquishy oh. my. gosh.

Flaredown looks so cool!!


Re: Need help talking to doctor

@Tiny_leaf   There's this one which costs to purchase (I like the idea of it though), this one which comes with a web app, and another one which can also be done online as well as in an app. This one is for fibromyalgia but it can theoretically work for other forms of chronic pain too. Here is another one. I also found this list of similar apps.

If only all conditions could resolve like that!

The file idea is actually really great. I remember writing a timeline of my chronic pain for a doctor. She kept a copy herself. I think bringing some print outs of studies to show the doctor can also be helpful, especially if you want to enquire about particular treatments and already have an idea of what the diagnosis could be. We did this with my sister when they didn't know what was wrong with her. You can find a lot of studies on Google Scholar. Not all of them are fully accessible though and it's hard to know how reliable and valid they are without reading them through. You could ask for his opinion on the study.

I'll try to think up some more ideas. Smiley Happy


Re: Need help talking to doctor

@Tiny_leaf   I think Flaredown is great. It's hard for me to find apps that can track my eye symptoms, so I liked that it would let me write whatever symptom or treatment I wanted to track. I wish it had some more features though.  I wish the app had a mood tracker with emojis or something. The weather tracking only works if I write my state as well.

I've been using another app for medication reminders called MyTherapy which also lets me track my mood and symptoms, but it doesn't let me make my own symptoms so I can't track things like 'eye pain', just 'dry eyes'.


Re: Need help talking to doctor

@WheresMySquishy they all look useful but none of the ones I've seen are exactly what I'm after..

Long story short I'm teaching myself how to program on a new thing in an attempt to get one that I'm happy with based on a mix of all of the ones I've looked at..

I don't know why I'm like this..... Smiley Tongue

I'll check out the links to see if there's anything I've missed though; it'd be way easier than learning how to code...


And I love google scholar!! But the studies that only show the abstracts unless you pay like $100 and/ or join a specific university are so annoying..


Sorry if I'm rambling a bit by the way, my ADD or something is very active rn, so I'm thinking about a million things at once. But it's useful for brainstorming at least. Smiley Happy