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Re: TW: No one cares about me

Hi @skyfireinferno99! Well done on getting a job! I'm sorry to hear that you're struggling so much. It can be so hard moving so far away from your friends and family. Smiley Sad Personally, I wouldn't have the courage to be able to do what you've done.

Chronic pain can be so difficult to deal with, especially when you have received some unhelpful advice about it. My sister and I have also experienced chronic pain that went on for years and I can relate to the feelings of hopelessness and lack of support.

Personally, I think your pain specialist sounds dodgy and rude. I'm really appalled by what they said. My sister was also told repeatedly that there was nothing that could be done for her complex regional pain syndrome and functional neurological disorder and that it was all in her head. She has been basically bedbound for months and has developed osteoporosis, vitamin D deficiency and spreading of her pain and symptoms as a result of the lack of support we received. Now she is in a new hospital under the care of an amazing team. Although she still cannot walk, they are doing things to help her regain her mobility every day. Every day, she does hydrotherapy and they put her into a wheelchair for longer and longer periods. They are always trying new things to see what works and what doesn't. She still screams in pain (we were told that she would be in greater amounts of pain before she got better) but even though she is still dependent on us for care and her case is severe, they are still doing something to help.

The fact that you are well enough to work and go to the gym despite being in pain is really promising. If this new team hasn't yet given up on my sister who has even less functionality than you, I don't see why something can't be done for you, or at least tried. Chronic pain can take ages to get better, but new ideas and treatments are being developed all the time. I guarantee that there are things that your team hasn't tried with you. If you aren't ready to give up, there is no harm in getting a second, a third, or however many opinions you need. My sister and I had to seek multiple opinions at various hospitals and practices and encountered a lot of dodgy ones like your pain specialist before we found professionals who had experience in treating our specific issues. Like you, our scans came back normal, but that does not mean that we are not in pain or that the pain is all in our head. I am now 95% better than I was a few years ago after finding a good physio with expertise in treating my problem. A large percentage of people actually make a good recovery from chronic pain, especially young people.

If you do end up seeing someone else, we found that it was helpful to go into the appointment with an open mind. We received different diagnoses and vastly different opinions, even when we saw another specialist in the same field. Some had good bedside manner and treated us with patience, optimism and understanding, and some didn't. Some diagnosed us correctly, and some were completely wrong or failed to pick up on our conditions. If your gut instinct says, 'I need to get away from this professional', then it is usually correct, and it's okay to walk away and see someone else.

Sometimes it can also be more helpful to take part in a rehabilitation program with a lot of professionals working together rather than seeing one professional, which is what they are doing with my sister. You could also ask your psychologist to show you some techniques which can help with chronic pain. Whatever goes into our brain or body can change our perception of pain. It's a bit complicated, but this is known as the gate control theory of pain. We found that some psychologists were more experienced with this than others though. As strange as it seems, there are even research-based apps that can change the perception of pain and theoretically shape pain pathways. They are based on the principles of graded motor imagery and made by NOI. Have you thought about trying any of these?

Finally, all pain is produced by the brain, whether it is acute or chronic. So I don't see the point of your specialist telling you that it is all in your head. That doesn't mean that there aren't things that can treat it or that the pain is psychosomatic or imagined. I really hope that you can get some relief from it. Heart

Re: TW: No one cares about me

Hey @WheresMySquishy 

 

Thanks for replying and for posting that information. I am sorry to hear about what happened with you and your sister. I am glad that you both found something that worked for you. Even in the past, I have been told that I don't exercise and that's the reason I am in pain and I should just get over it. No one understands how much it hurts and how much effort it takes to do even simple things. The pain specialist said that I am high functioning so nothing can be done. My pain has in fact increased since that appointment with him. I don't think that there's any help for me. I just have to accept it and live with it. No one cares about me anyway. With all things considered and everything else I have going on, I don't think I can try anymore. I did all I can and I am doing all I can to help myself but nothing works and no one cares about me. Like autism and ADHD, it's just something I have to live with.

 

Thanks again for the information. I do hope that things start to look up for you and your sister Smiley Happy 

Re: TW: No one cares about me

@skyfireinferno99 "exercise" is quickly becoming my least favorite word.... do you get told to do yoga too?

I use a cane, I swear there's a sign on it somewhere that just says "tell me about yoga" Smiley Frustrated

 

That pain specialist sounds infuriating... you must be trying really hard to sort all this stuff out, if the answer was as simple as "just exercise" chances are you would've found it by now..

 

Would you be interested in some links on coping with an autism diagnosis?

I know of a few, but don't want to flood you with them if they aren't going to be useful.

Re: TW: No one cares about me

@skyfireinferno99  I can relate to being told how unhelpful it is to being told to 'just exercise'. One of the 'specialists' I saw berated me for not being into exercise within the first minute of meeting her, said that 'exercise is medicine' and told me to sign up to a Pilates program, which she apparently uses for all of her patients claiming that it is a cure for everything.

I know that exercise can be helpful, but in our experience, it wasn't beneficial unless we did certain types of exercises and had a program tailored specifically for us and our particular conditions.

I'm not a medical professional, but I don't buy the idea that because a person is high functioning, nothing can be done to treat them. In fact, I believe that this should be even more of a reason to intervene in order to prevent potential loss of function and getting worse. My sister and I's conditions both got worse due to leaving them and not having prompt treatment. It makes me really angry that last year, my sister was able to sit in a wheelchair despite her pain but now she screams every time the hospital gets her into one. I believe that this is the result of them taking several months to see and treat her. We were originally told that she would be walking short distances with crutches and be able to sit in a car by the end of this admission, but because they constantly delayed for several months, that's not going to happen and she will need to be readmitted. It's pretty disappointing but at least they are stepping up with the physio and occupational therapy.

Re: TW: No one cares about me

Hey @Tiny_leaf 

 

Sorry for replying late. I got caught up in some things and I couldn't come online. Yeah I do get told to do yoga too and everything else. I tried so hard and waited so long for that appointment, but in the end, the specialist said that since I am high functioning, nothing can be done. It's not that easy to get up and exercise when on most days I can barely get out of bed. 

 

Yeah it would be good if you can post those links here Smiley Happy I probably would have missed something. I don't know what to do about autism and ADHD. I am getting isolated more and more everyday at work and my friends back home have started drifting apart. My family is not accepting of it either. I know it can't be fixed and I am a lost cause, but my depression is only getting worse because of this.

Re: TW: No one cares about me

Hey @WheresMySquishy 

 

Yeah I can understand how frustrating it is when someone judges you in the first five minutes they meet you and they know nothing about your situation. I know that exercise is not the solution for everything and I agree with you that it needs to be tailored. My physio has given me a tailored program, which he guides me through twice a week.

 

The specialist was dismissive towards me because I am high functioning but they don't understand how much effort it takes to do everyday things like getting out of bed, going to work etc. I can manage to do these things just because I push myself a lot. No one understands how much effort it takes to do anything. It's really hard to deal with chronic pain when I have a lot going on. I don't know what to do anymore.

 

I am sorry to hear that they took so long with you and your sister and it got worse, but I am glad to hear about physio and occupational therapy being stepped up. I hope that it gets better for you both.

Re: TW: No one cares about me

Hi @skyfireinferno99 

Thank you for being so open and sharing what you have been going through. It sounds like you are taking on board a lot of different strategies. Moving forward and keeping positive can be really hard at times, when things feel overwhelming what are somethings that help you feel energised?

Re: TW: No one cares about me

Hey @Claire-RO 

 

I have tried a lot and no matter what I do, nothing improves. I don't know what I did to deserve all this. I am in too much pain and I just want the pain to stop but I know it won't. Honestly, nothing helps me feel energised. I have to push myself to get out of bed, go to work and do everything else. Nothing makes me happy anymore and no one cares about me.

Re: TW: No one cares about me

@skyfireinferno99 sorry about how long I've taken, the past week has been crazy for me..

 

This link looks useful, it's basically a welcome into the autistic community:

https://www.autismacceptancemonth.com/resources/new/

 

I love Wikihow, and they've got some brilliant articles on autism. Here's the link to a whole heap of them:

https://www.wikihow.com/Category:Autism-Spectrum

 

I can't find any really good ADHD websites quickly, but I know that there's a bit of an ADHD community out there. But there's a bit of an overlap between autism and ADHD, so you'll find people with ADHD and ADD in a lot of autistic spaces.

Oh; though I just found this one!  https://howtoadhd.com/

 

This website is really cool, and has a heap of stuff designed to help manage sensory issues. It's really good for both autistic stimming and ADHD fidgeting; and the business is owned and run by an autistic person. https://www.stimtastic.co/

 

Finally; this is an autisticat, and his bow tie is the neurodiversity symbol. I know that this isn't a link, but I felt like including it anyway.

Image result for autisticat

Re: TW: No one cares about me

Hey @Tiny_leaf 

 

Thanks for sending those links Smiley Happy I'll have a look.