Undiagnosed and rare conditions
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Undiagnosed pain condition

harry01harry01 Member Posts: 172 Courageous
Hi,

I don't really have a name for what I'm living with because noone has put anything on my record but 'chronic pain'. 

To be honest I don't want to think about it but I've basically found myself in s situation where I physically can't brush my own teeth and noone even believes my condition is a thing. 

I'm just writing this hoping it connects with someone where they haven't yet received a diagnosis and maybe feeling huge social pressure to almost act as if they don't have a problem. 

Replies

  • harry01harry01 Member Posts: 172 Courageous
    It's interesting because it seems that social pressure plays a surprising role in the worsening pains and episodic spasms. Over the last two years I've had nonstop penile pain. 

    It's a horrid way to live and it seems pretty sad as this was always avoidable. 
  • harry01harry01 Member Posts: 172 Courageous
    Was just going to add that I'm not hugely a fan of 'invisible' but let's say it's unseen. 
  • Hugo_LambHugo_Lamb Member Posts: 12 Courageous
    Hi Harry,  

    It sounds very difficult for you.  For a long time I had undiagnosed chronic pain, and it came through being fortunate enough to be able to afford countless private tests and seeing several doctors that I finally got diagnosed with EDS (hypermobility).  I pretty much always have pain somewhere, whether it's my wrists, shoulders, lower back, hips.  If I would have any advice for you, it would be this: 

    Talk to your GP again about this.  Even if there is no specific diagnosis, you can be diagnosed with chronic pain and receive the support available associated with such pain, e.g. I get extended breaks in exams.  

    In terms of dealing with it on a daily basis, meditation really helps.  While chronic pain may not improve over time, I've certainly found that you can definitely manage it and have a fulfilling life at the same time.  For me, it's about acknowledging the pain and not trying to fight it because it's a losing battle.  Meditation really helps in accepting the pain and not letting it get you down, because I know the frustrations of not being able to do simple tasks without sharp or constant dull pains.  

    I'd also recommend finding things that you can do without pain, and focusing on them.  If you work, find a way that you can work in a way that minimises the pain, e.g. dictation instead of typing.  Or try finding a hobby that you can do without pain.  I don't know you condition, but for me music has been great for me.  I play the guitar, and for me that also really helps unstiffen my joints and is a great release mentally.  

    It isn't easy and I can't say I deal with it perfectly, but these are just some tips that I found have helped me.  

    All the best, and here if you want to chat.

    Hugo
  • Ross_ScopeRoss_Scope Posts: 4,608

    Scope community team

    Hello @harry01 and welcome to the online community :) 

    Sorry to hear you're going through a difficult time and nobody is taking your claims seriously, you deserve help and support. 

    The NHS have a great resource that you might find helpful about getting help for your pain.  And I'm sure that other users will also be able to offer their insight to you as well, I see you've already received some great tips above.
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  • harry01harry01 Member Posts: 172 Courageous
    Thanks Hugo. A lot that you're saying makes sense to my experience. I respect you giving me your own personal account. I would like in some way an acknowledgement so that I can improve my quality of living. For 30 years I could clean my teeth but when I injured my right arm I physically couldn't. It would have helped me if I was realistic about where I was working from but the doctors I saw viewed my pain condition as far more psychological so they provided no carer to help me clean my teeth. That has been something I really wanted to address.

    I probably should say that I do think that psychology was a big part in making the symptoms worse. The original cause was from something I did to my back at 4 or 5 years old but the pain was not nearly as bad till I had these episodic spasms at 21, 25 and 33. Extreme stress and mental I'll health tie them together but the physical disability is emphatically real and they kind of alluded to 'body dysmorphia'. 

    I just thought I'd say that because it was the reason I lost trust in the health service. They wanted to talk about 'schizoid personality disorders' and 'autism'. They could at the very least diagnose conversion disorder what they now call a functional disorder.

    I just want an acknowledgement of a condition that I can refer to to back me. In my opinion my mental health suffered because I had no means of even explaining something complex. Who pretends they can't clean their own teeth. I don't even know where to start with that. No wonder I got mentally ill.
  • harry01harry01 Member Posts: 172 Courageous
    Oh, and thanks Ross. 
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