Coping with chronic pain

Hey @Tiny_leaf 

It must be so frustrating seeing doctors who are rude and dismissive of you. I really hope this new rheumatologist is not like this and that you feel heard and understood by them. Perhaps before you go in you could have a list of things you want to talk about in the appointment and what you want to get across or learn and use this during the appointment. Sometimes in specialist appointments they can feel a bit rushed and we can get a bit flustered and can easily forget something that we wanted to discuss so having it written down might help. 

The tape causing rashes sounds downright difficult to manage, how are you going today with the pain? Maybe we could talk about some things that could help to comfort you and make you at least a bit distracted?

💜💜💖

@TOM-RO I do all of that already and they don't listen.

I'm asking how to cope when even though I've said everything perfectly they still don't listen.

Hi @Tiny_leaf, just wanted to check in and see how you're doing with everthing today? 

I don't know... 

Hi @Tiny_leaf I'm sorry to hear that your experiencing such pain and that you're having to deal with rude and dismissive doctors. I can only imagine how awful that must be for you.  Please know that you're not alone in this, and that we're always here to chat 💙

Hey @Tiny_leaf, it sounds like you are doing everything you can but you aren't being listened to. To answer your question, in that case, it might be helpful to try and adjust your expectations. You can try to remain hopeful and also acknowledge that it is possible that they may be dismissive and your needs may not be met. It could also be about planning something nice for yourself after appointments if you know it is going to be difficult. Also, what do you need if they still don't listen? If they are dismissive and rude?

You are in a really challenging situation and I am sorry that you are in this position ❤️ 

Hey @MB95 thanks for sharing! I'm sorry you've been having so much ongoing pain 😞 I think @Tiny_leaf is right, it's pain that doesn't go away for a certain amount of time.

I feel you about worrying doctors will tell you it's in your head. Some might.. But usually doctors are better about it these days.

Well I found out because I thought it was going to get better after ages of trying different treatments because I'd gotten better in the past, but when I saw my dermatologist the most recent time she said it wasn't going to go away but that it could be managed and that my nerves had become hypersensitive or some shit. I was NOT happy when I heard that.. ***TW* I told her, rather dramatically I'd rather die than have this pain forever**** Like the pain itself isn't that bad, it's just where it is and how much it gets in the way of things and how much I have to pretend it isn't there I think I've told you that before lol.. But um honestly I guess chronic pain is something you can say to other people to communicate that you've been in pain for a long time, you don't need a doctor to give you a diagnosis to validate that. Sometimes you can go for years without knowing what's wrong with you so it can be good to have 'chronic pain' as a label in the meantime. When I was younger and had this same problem it took 2 years to diagnose and treat (but then it went away for a while..) and now I bloody hate going to doctors because it's so scary to go but paradoxically I get really worried about my health when I shouldn't so I go too much to doctors. I still think my pain is in my head despite like having a diagnosis. It's what my parents told me growing up. And what pretending nothing is wrong has told me. Honestly it's really fucked me up psychologically and I don't know why 🙃 so I'm the worst person for advice

This was a vent about me omg I'm so sorry 🤣

I think you should definitely see a doctor because your pain is real- just make sure it's a doctor you trust and I guess yeah sometimes you do need to be in the right headspace. But sometimes the pain in itself sort of makes things worse so there's no best time. Idk

And yeah chronic pain doesn't have to be permanent, it can be intermittent, constant, minor, debilitating, or anywhere in between. I think it's just something where you have it for longer than a few months or something idk the actual cut off but we don't gatekeep here- anyone is welcome to vent about any sort of physical symptoms or pain or like anything relevant on here and everything is valid

Thanks guys. I didn't realise I never replied to these but thanks for sharing your stories! My pain has been pretty intense lately and leaving me on the verge of tears cause nothing really helps and I don't like taking medication so try my hardest to avoid it. I can barely sit atm which is definitely an indication that it's become so much worse but I'm so scared to go and get it checked out incase there is something wrong but then also incase there isn't and I'm just being a sook and need to suck it up. I'm also scared to see my GP atm anyway for other reasons so there's that too. But this pain is killing me atm and I feel like such an old granny because I can barely move. Actually, my granny is more mobile than me so that's totally not fair to say 😂

@MB95 if your doctor describes that level of pain as "nothing", you need a new doctor.

And yep my grandma outmanouvers me as well... she went camping recently and only hurt her knee once.

Do you want to talk about why you don't want to see a doctor?

Unfortunately not really.. my anxiety is pretty well its not great so going to new places isn't really an option for me atm unless I have support and I don't have anyone to go with me so yeah. Plus my GP is really good so I would feel bad seeing someone else but yeah I won't go into over here cause this thread isn't for that! I'm trying really hard to work up the courage though because it's becoming unbearable and today I had to kneel at my desk again for a while because I couldn't sit and I contemplated not even going but my dad also reckons laying in bed just does nothing and will make it worse so idk. Right now I feel like it doesn't matter what I do, eveththing just makes it worse. I'm just over it but anyway it is what it is I guess. 

I love that your grandmother went camping! Mine does the same thing and she walks every morning and stuff and if I go for walks (I do try) I can barely move the next day I'm in so much pain 😂 Gotta give it to the grannies!! Haha 

That sounds so awful @MB95 😞 I'm sorry you're in so much pain. It definitely sounds like it could be worth going to the doctor about this! Could you even do a phone call appointment with your GP to talk about it? Is that an option?

Ugh idk. Lets just say that's all kinda in the same boat as the psych stuff atm. Its hard to explain and this isn't the right thread to anyway but I think I will eventually end up giving in cause I almost cried at work today cause of how much pain I was in and couldn't sit so yeah. I feel like I'm gonna end up having no choice soon cause I won't be able to work otherwise. I'm just over it and my MH makes it so hard to be proactive about my physical health because as much as it stresses me out I also just don't care and feel like I don't deserve a healthy body anyway so yeah its kinda hard to sort it out cause I'm really stuck atm but anyway it doesn't matter. I'm a tough bitch so I'll make it work somehow 😂

Hey @MB95, your pain sounds really horrible and like it is getting in the way of working. You don't deserve to be in constant pain. I can't imagine what it would be like trying to work but wanting to cry because of the pain. I know you are feeling stuck at the moment, so I hope that you are able to sort something out soon. As you mentioned, it can be hard to be proactive but the quicker you get it checked out, the quicker you can have your pain managed which will be one less thing to deal with  

Yeah I guess you're right. I just wish I could organise it all but it just gets too much and I make myself sick over it cause I'm so scared and yeah. I sometimes just wish I had someone here that could help me organise it and maybe go with me or force me to go cause if I have to rely on myself it doesn't happen. Amyway it's all good, I'll sort it out at some stage 

I totally get the anxiety about seeing doctors. I used to have to get my parents to make appointments for me right up until I left school. And whenever I'd go to the doctors and sit in the waiting room I would be panicking so much. Like doctors have taken my blood pressure in the past and have been so concerned but it was just anxiety 😅 Having someone to organise this for you would be amazing I agree @MB95 

Idk some people at the place I used to see my treatment team would offer to help me make appointments or do admin stuff for me and it was greeeattt. I also would see the GP at this place instead of my normal GP cause my normal GP practice TERRIFIED me 😅 And although I was really scared of seeing people at this place where my treating team worked eventually I wasn't getting as anxious to the point of panic before seeing people. Now I see a GP at the old practice I used to go to but it's a new GP and they're really nice so it's a bit easier. I still get a little anxious but no where near as anxious as I used to. And there I go talking about myself again 🤦‍♀️

It's good to talk about yourself lost, we all need a bit of lost in our lives lol That's so cool you had people to help you out at your last treatment place. And it's good you feel less anxious with the new GP too. 

Yeah that's cool you were a case worked Bre. I reckon it sounds like a sweet gig to be in but no way in hell would I have the skills for that although I guess I am better at looking after others sometimes idk. It has crossed my mind but I don't even have the skills or confidence to organise that and I think it would make me feel like I've lost my independence idk. It kind of just highlights I'm not good so yeah. Part of me knows I need some sort of help cause it's getting worse and I cant even manage ugh this is getting long and not the place for it sorry. Anyway its all good. Thanks for the suggestion though. 

@MB95 Lol no everyone does NOT need a little lost in their lives HAHAA

It was more common than you might think for people to ask for help with this stuff!

Ikr so cool! I don't think I have the skills or confidence either but so cool!

@Bre-RO that is so cool! Yeah I was looking at the tafe courses! What kinds of things did you study? What are some tough things about it? I guess it would depend on what field you went into.. Is it like worrying about people's safety? You said young people so I assume like mental health stuff and it would be really intense hearing about bad stuff that might have happened or was happening at the time and then worrying about their safety and stuff? If it was working as a caseworker with like with sick people I guess you would be worried they didn't get better and died or something. Idk caseworker seems like the most honourable job lol it combines like advocacy and therapy and caring about the whole person and their family and being with them the whole journey lol I'm a bit biased because I was so attached to my old CM

Heya @MB95 sucks to hear that you're struggling and finding it hard to see a GP. 

I get what you mean when you say you wish someone could organise this stuff for you. I wish I had someone to do that too 😆

I'm actually a huge advocate for getting someone to do that stuff for you. I used to be a case worker and a big part of my job was coordinating care for young people having a rough time. Sometimes you need someone to get things rolling for you and over time it can be easier to manage on your own if thats what you want. Have you ever thought about having a support worker/case worker? 

SAME I wish I had someone to organise stuff for me I have been avoiding all these phone calls and stuff like I have like 5 people I should have returned calls to but never did cause I keep putting it off cause I hate making phone calls @Bre-RO 

Bre I didn't know you used to be a case worker that is so so cool!! What was it like? How did you get the job? I'm considering a bunch of different careers atm and doing something like that is definitely on the list!

It was cool @Lost_Space_Explorer5 😃

It's very rewarding to help people with their goals and so lovely when you see how far someone has come. I went to tafe to study community services and then did another tafe course on case management -  it was a really practical way to get into the work.

There are tough things about the work too but you just gotta make sure you self care/work somewhere that aligns with your values 🙂 

Hi @MB95 I'm so sorry to hear about the pain your currently in. I can only imagine how hard that must be for you right now. You mentioned that you are unable to see your GP at the moment, I am wondering if maybe there is someone else you can see to get this pain looked at? 

We are all here for you 💜

@MB95 I think that if it's pain that doesn't go away after a few months it counts as chronic. 

Like, literally the definition is pain that is chronic (long lasting).

There are a lot of conditions that can cause chronic pain, which means that there are lots of tests and lots of treatments and outcomes.

Like for example, I have chronic pain that's permanant, but my brother had chronic pain for maybe six months that's expected to improve completely with treatment.

Some conditions only show up on really specific tests, so basic tests won't pick them up (I have one of these). Some don't show up on any tests at all (I have one of these as well), but that doesn't mean that they aren't real or don't affect you. And some show up really easily with just one common test, but you'd need a doctor to figure out which tests are appropriate.

Hi @MB95 

Thanks for sharing and for your questions. Yeah, there are some tests. I had an MRI scan and blood tests. My first blood test came back as negative, as in, no signs of a condition, but this was in the early stages. Blood tests after that showed signs. I think when a people have pain at a young age, and are having trouble finding the cause of the pain, they can often wonder whether it's all in their head or not. I've known GP's to attribute such things to stress, and to be incorrect in the end.