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Tired of my doctors and my health

I wish I could focus on being happy as well as healthy, but it's hard to do things I enjoy when going somewhere could cause a breakdown, or walking too far makes walking at all agonizing for the next few days.

My doctors are so dismissive. I don't know what's wrong with me. Pain is going all the way up both of my legs and I don't know why.

I still don't have a definite diagnosis for my mental illnesses.

My GP won't properly discuss the idea of a cane because people would then see me as disabled.

My psychologist cannot go a single appointment without making a value judgement that makes it clear she doesn't think as much of me than she would a "normal" person my age.

Everything l hear from them is essentially "don't look sick, don't look disabled, don't question us".

l wish one of them would say "here's some ways to get better, here's how to make the most of your disabilities, ask away" 

l need them to help me, not fix me.

l wish one of them would actually listen to me and help me, rather than trying to turn me into some sort of "ideal" human, but that seems increasingly unlikely.

I'm losing the energy needed to constantly fight the people who are meant to help me, and I have no idea what to do. 

Re: Tired of my doctors and my health

Hey @Tiny_leaf I can hear how frustrating this must be for you, I'm sorry your doctor and psychologist haven't been listening to you Smiley Sad Doctors should definitely not be dismissive! Having a GP and psychologist that you can trust and makes you feel heard is so important

 

For many years I struggled with chronic fatigue, pain and nausea and I also had a GP that was dismissive and a psychologist who would just tell me to do things despite my symptoms ("push through" type of mentality) which was incredibly unhelpful. I ended up seeing a specialist and finding a new GP by looking at options in my local area and reading the blurbs about their interests on the website. The paediatrician tested me for a lot of things and I ended up finally getting a diagnosis. Is finding a new GP an option for you?

Re: Tired of my doctors and my health

Hi @Tiny_leaf , it sounds like you're having a tough time. 

I can understand how frustrating it must be having a dismissive GP and psychologist and also not knowing why you don't feel right. 

If you feel like you haven't been getting the help you need from them, maybe seeking out to see a different GP might be another option? That way you may be able to get two points of view about your health. 

I've also noticed from experience that sometimes you just don't click with certain GPs and sometimes it takes some time to find one that you trust completely and believe has your best interests at heart. 

Whatever you decide to do, I hope you can start to feel better soon!

Re: Tired of my doctors and my health

Hi @May_ and @lr8991.

Thank you for responding.

I'm going to look at a new psychologist. I'm only staying with my current one because even though she's judgmental and unhelpful, she's very good at diagnostics. Hopefully I'll stop seeing her soon, if every adult around me stops trying to make me "see how it goes" for even longer...

 

My GP's a bit harder... I generally like him, and he's the best I've found, but he's just not being helpful with this specifically...

Is it possible to have two GPs for different issues?

Like, one for chronic pain and one for everything else?

Re: Tired of my doctors and my health

@Tiny_leaf  you can definitely see two GPS Smiley Happy 

My main GP I absolutely love, however she is often hard to get appointments with so whenever she isn’t available and I need an appointment I have a second GP that I go to

Re: Tired of my doctors and my health

@lr8991 thank you!

That's definitely something I'll look into.

Re: Tired of my doctors and my health

Hi @Tiny_leaf! I'm really sorry that you're going through so much pain. Smiley Sad My sister and I have had chronic pain (different diagnoses and different body parts) and it was so frustrating not knowing what was wrong with us or what to do. We also encountered a lot of doctors and professionals who were unhelpful, judgmental or had a poor bedside manner. It makes me sad that so many are not supportive because most people are not pretending to be in pain. Sometimes, all we really need is for a professional who has seen those symptoms before and knows how to help. Those people can be hard to find but we have to keep trying in order to get better.

We found that there were a lot of ways that we could help ourselves to self-manage our pain while we waited for sessions and treatment. There are some really great self-help books out there that provide strategies for managing chronic pain and other illnesses such as 'Living a Healthy Life with Chronic Conditions' and some really good e-books if you look online. I also tried to exercise the affected body parts as much as I could through YouTube videos and online tutorials while waiting to see someone who knew how to help. With chronic pain, it is very important to keep using the affected body part so that you don't end up losing function. I can't speak for everyone, but our problems got worse when we didn't move our limbs. Massaging the painful areas with cheap massage tools really helped to reduce the muscle tension that was contributing to my pain. For my sister, constantly touching and putting water where the pain is a big part of her treatment because it is supposed to help her become less sensitive to ordinary sensations. Listening to guided meditations, especially ones that involve progressive muscle relaxation, might also help reduce pain and tightness.

I think it is also a good idea to keep a diary of your activities. Looking back on it, you might be able to identify triggers for your pain or times when the pain is less. I kept a timeline of my experience, who I had seen and what I had tried, and gave it to my doctor. Perhaps you could make one for a new GP. It also helped to make a plan about when to do self-care and exercises.


I have also posted about some ideas on my thread here. Although the suggestions are targeted towards FND, they can be useful for other forms of chronic pain too.

Let me know what you think of these suggestions. Smiley Happy I really hope you can get better.

Re: Tired of my doctors and my health

hi @Tiny_leaf 

that sounds extremely frustrating on your part - particularly with such a pressing problem. No GP nor psychologist should be dismissive of a paying client. To hear that is extremely frustrating! You are doing the right thing, looking for another psychologist and someone who is not dismissive - it will help you a great deal Smiley Happy

 

I am personally not a person of experience in this area, but as @WheresMySquishy mentioned, there are plenty of coping strategies/temporary solutions. 

 

I do like the idea to keep a diary, and try to exercise when comfortable.

 

I would also try maybe a calming bedtime routine (a bit out of the blue, I don't think you mentioned any problems with sleeping, but anyways Smiley Happy). Whatever makes your body comfortable during this time (say around 45 - 60 min before bed time) is best. I have recently been using a lavender oil spray to calm myself down (I am often prone to having panic attacks and stressful thoughts at night :/). It's just lavender essential oils and water - add as much lavender as you wish, it's not a touchy recipe Smiley Happy. I spray it on my pillow and spray it in the air in my bathroom after I cleanse and moisturise my face. Lavender is such a relaxing smell!

 

ASMR has been a lifesaver! Autonomous Sensory Meridian Response is a tingly sensation that can appear anywhere on the body, from quiet whispering, tapping, scratching, eating and pretty much anything you can think of (known as triggers)! It helps me so much when going off to sleep. I'll just turn on my playlist and doze off in a flash! You can find some great videos on youtube, but you can also find some varieties on Tingles, which has no ads, and you can pay for their premium option to download videos to play offline, access all their playlists and more!

 

A few people I would start off with are ASMR Darling (her trigger videos are absolutely wonderful, but you won't find her on Tingles), Goodnight Moon ASMR (she does a briliant series called Babblebrook, where she dresses up as witches and mermaids and an inkeeper and an elf and so many more! You can find her on Apple Music and youtube but not on Tingles), Olivia Kissper ASMR (she does a lot of ambient healing videos, but she is available on Tingles and Apple Music), ASMR Psychetruth (this company does the works! Roleplays, massages, facials, haircuts and so much more! They are available on Tingles, but not on Apple Music), ASMR Glow (she does wonderful relaxing roleplays and trigger videos, very much Sci-Fi inspired! She is available on Tingles, Apple Music and Youtube). There is also Crinkle - Luvin ASMR, Zach Choi ASMR and Eat Life With Kimchi. I'm pretty sure however that you will find plenty of your own favourites!

 

I hope that this may have helped you a little, maybe not at all, but I hope you have a good night's sleep!

love and hugs, 

blobby Smiley Happy

P.S. ASMR will get you addicted!

Re: Tired of my doctors and my health

@WheresMySquishy thank you. Smiley Happy

Exercise for me makes the pain a lot worse unfortunately, and because I don't know the cause it's hard to figure out how to strengthen them without damaging anything...

Though I have tried massage, and it works really well for me luckily.

Re: Tired of my doctors and my health

Hi @blobby 

Thank you. And yeah, plus the appointments cost heaps, which doesn't help my frustration...

 

And I actually do have problems sleeping for heaps of different reasons. I've heard of bedtime routines to help calm down emotionally, but not heard much mention of trying to also make myself more physically comfortable (or I forgot it...that's also possible), but I'll definitely give it a try.

 

And I've heard a couple of ASMR videos, they don't seem to work for me? Like, I don't get the response, so for me it's just someone making weird noises... Though I do get a similar response with certain music, so maybe I can experiment with that a bit.