Chronic pain — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Chronic pain

kayleighannie
kayleighannie Member Posts: 5 Listener
Hi I’ve had pain ever since I can remember and have been officially diagnosed with hypermobility syndrome and fibromyalgia. However after researching in community I feel like my fibro symptoms are so much more intense, longer lasting and worse than a lot of people. Having researched I feel like I may have Hyper mobile EDS as I have all symptoms expect one, how do I go about finding this out/getting diagnosed? 

Comments

  • janer1967
    janer1967 Member Posts: 16,322 Disability Gamechanger
    Hi and welcome to the community, there are other members on here who suffer with these conditions and I am sure they will connect with you and offer advice.

    I would suggest you speak to your GP about your concerns and ask them to refer you to the relevant specialist

    We also have a section on managing pain on here which you may find useful
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Welcome to the community @kayleighanne! Thank you for taking the time to share this with us. It's sounds like you have waited a while to get diagnosed. 
    Scope

  • kayleighannie
    kayleighannie Member Posts: 5 Listener
    Hi @Chloe_Scope I really did. Looking back at my medical history it’s likely I’ve had it since being a child. Which is why I’m reluctant to go back and ask about EDS because I just think How much longer is that going to take 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @kayleighannie, that's understandable! The choice is yours, you are always able to go back. Have things been put in place to support the current diagnosis?
    Scope

  • kayleighannie
    kayleighannie Member Posts: 5 Listener
    Not really no, I only a couple months ago was given an NHS wheelchair which I can’t even use because it’s too heavy. I had to by my own walking stick and am expected to buy myself a new wheelchair too, which I can’t afford so will have to do without. 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    edited July 2020
    Hi @kayleighannie - Sorry, I've just noticed your post. I have the hypermobile type of EDS (hEDS) so have some understanding. May I suggest you have a look at Ehlers-Danlos Support UK: https://www.ehlers-danlos.org/ as they help people with both EDS & hypermobility syndrome, which is now more commonly called Hypermobility Spectrum Disorder (HSD). There's a lot of info there, & you & your GP might find the GPs Toolkit helpful. See: https://www.rcgp.org.uk/eds 
    There is also info on getting a diagnosis. A referral to a rheumatologist is usually the way to go, but a dermatologist could also be useful. It depends if either have a knowledge of hypermobility, & associated skin issues.
    For chronic pain, see links from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links
    And also try this: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf       a relaxation exercise which helps combat stress, which can then cause more pain. I hope some of this may help. :)
    P.S. Just saw your last post, & I wonder if you would find elbow crutches more helpful? A referral to a physio to assess the correct length of them & if they're suitable, means you can 'borrow' these freely from that department. Something I use as my pain is increased if I sit, so couldn't use a wheelchair. I also found a stick difficult to use where I live (too many cobbles!)
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @kayleighannie, how are you doing today? Just wanted to check in. :) 
    Scope

  • pocpoc
    pocpoc Member Posts: 5 Listener
    Im a fibro sufferer,i find when im stressed my pain level rises , ive recently had a breakdown and never slept so much lol not a choice ,i think my brain knew i was exhausted and shut me down as much as poss.Ive found fibro sufferers get fobbed off and everything is put down to fibro,which isnt always the case. 
    im interested in your hypo sensitive symtoms ,excuse my spelling!
    Are your long painful if you touch or itch ,as if you have been punched rather than touched.? 
    My depression has been treated as mild for 20 years ,how ive kept going this long i really dont know,im now being treated for severe depression,anxiety and meds i should of had years ago..   

  • Ross_Scope
    Ross_Scope Posts: 7,436 Scope online community team
    @pocpoc

    I hope the new treatment works for you :) 
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.

Brightness

Complete our feedback form and tell us how we can make the community better.