Dealing with chronic pain
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Does anyone have any insight into coping methods for muscle cramping and nerve compression?

Hanzy321Hanzy321 Member Posts: 2 Listener
edited August 6 in Dealing with chronic pain
My condition has not yet been diagnosed. I have a rare issue with my muscles which has lead to cramping, muscle knots, muscle weakness, tension, and compression of my nerves mainly on my left side. 
In my latest referral I was told it could be one of thousands and as there is no cure for any, they wouldn't know where to start with further testing and advised to manage the condition best I can and will likely require wheelchair use as it progresses. 
This has impacted my mental health a lot, but I find talking to others with similar frustrations allows me to feel understood in a world where others find it hard to accept those with invisible illness.
As I look to start a family in the near future, I am searching for further insight into coping methods others use, for both their general home and work activities as well as mental health.
I hope to also share my own experiences and things that help me get through each day and help others where possible. 

Replies

  • steve51steve51 Community champion Posts: 7,015 Disability Gamechanger
    Hi @Hanzy321

    Good Evening & Welcome it’s great to meet you today.

    I’m one of the Community Champion’s here at Scope.

    Yes I also have Chronic Pain (Neuropathic) which effects my right-side (Nerves)

    Please let me know if you need any help getting around?????

    @steve51  

  • chiariedschiarieds Community champion Posts: 2,986 Disability Gamechanger
    Hi @Hanzy321 - Welcome to the community. Thank you for joining & sharing about yourself. Whilst some conditions can be difficult to diagnose, I'm surprised you were told it could be 'one of a thousand things' with no cure for any. Have you considered asking for a 2nd opinion? I appreciate it's very difficult at the moment, but as referrals can take a while anyway, it might be worth discussing with your GP, or just ask for their opinion in general.
    If a specialist doesn't know what you've got, I don't know how they can presume you would need a wheelchair, or know whether your condition would be progressive, or not, anyway.
    If it's any comfort to you, I was told when I was 21 that I'd be in a wheelchair by the time I was 40. This prior to a diagnosis. The Dr I saw said he thought I had a certain disorder, but he couldn't remember the name of it! I think he was correct (from the bits he could remember), apart from the fact I'm more than a tad older than 40 now, & I don't have a wheelchair. About coping methods, there's a great thread here on Scope about anxiety. Please see: https://community.scope.org.uk/discussion/72871/dealing-with-anxiety#latest    which may be of interest.
    Please do join in with the discussions on the forum, & share your experience too. :)


  • Tori_ScopeTori_Scope Administrator Posts: 196 Pioneering
    edited August 4
    Hi @Hanzy321, it's great to have you here! I hope that you'll be able to find the information you need on the online community, as well as forging new connections with members and sharing your own experiences.

    I hope that you found the link that @chiarieds sent useful? You might also find that the following discussions on dealing with chronic pain could give you some more insight into possible coping methods. You can also head over to the coffee lounge to find like-minded people who can offer more general tips and advice.

    I'd also recommend that you take a look at the discussions on this page, which provides peer support for disabled parents. This might give you some insight into how best to prepare for starting your own family.

    I look forward to reading more of your posts! Please let me know if there's anything at all I can help you with, or direct you to. I'm new here as well, so we can work it out together!

    Tori
    Online Community Coordinator
    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,519 Scope community team
    Welcome to the community @Hanzy321, sorry to hear your disability has had an impact on your mental health. Just wanted to check in to see how you are doing today? :)
    Community Partner
    Scope
  • cupcake88cupcake88 Member Posts: 289 Pioneering
    Hi there and welcome nice to meet you . I’m sorry to here of your pain . I get bad muscles due to my medication . I have pain killers but some times they don’t work I tend to use muscle rubs like tiger balm 
  • janer1967janer1967 Community champion Posts: 2,241 Disability Gamechanger
    Hi @Hanzy321 Welcome to the community glad you have joined us here.

    I cant really offer any advice but have you been referred to a physio they may be able to help with some suitable exercises 

    Have a look around and join in any discussions and I look forward to seeing you arond
  • Hanzy321Hanzy321 Member Posts: 2 Listener
    Thank you all for the comments ❤️ I definitely feel welcomed and already a level of understanding I found difficult to come across so far

    Thank you @steve51, I'll let you know if need any assistance  :)
    @chiarieds thank you for the link :) and the wheelchair use estimation was by a physio prior to my final referral (mentioned by age 60) but actually before the numbness began to effect my legs just a few months later.
    Current regular private physio helps to break down the main tension for a few days, and prevents it getting as bad as it would get without it, thankfully enabling me to walk down the aisle last year! 
    I was close to not being able to use my left leg at all before the physio so is definitely a muscle tension issue rather than neurological, which is interesting yet still no apparent cure for that sort of thing.
    While the physio and stretching helps, it's still progressing and my phsio recognises the new areas of sudden tension I've found without me having to say anything so that's reasurring in a way. However once that's broken down and the nerves are released, the pain sets in as it re-tenses a few days later. 
    @Tori_Scope thank you for the link 👍 I think learning to cope with the increasing discomfort is becoming challenging, but at least the current warm weather is helping a bit :) 
    @Chloe_Scope I'm doing OK this week thank you for asking :) I managed to distract myself with writing a fiction novel I'm working on so have had less down moments, hope your doing ok :) 


  • Tori_ScopeTori_Scope Administrator Posts: 196 Pioneering
    No problem @Hanzy321 :) I'm glad that the weather is helping a bit at least. 

    It's so cool that you're writing a book! What is it about? 
    Online Community Coordinator
    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • steve51steve51 Community champion Posts: 7,015 Disability Gamechanger
    Hi @Hanzy321

    No probs my friend.  😎😎😎😎😎😎

    Yes it’s good to find something to distract yourself ☀️☀️☀️☀️

    I work on pc’s during the day  & my brain🧠 is frazzled by the end of the day.

    I do hope that you are enjoying the ☀️ 

    @steve51



  • chiariedschiarieds Community champion Posts: 2,986 Disability Gamechanger
    @Hanzy321 - Thank you for your kind reply. I'm pleased physio helps a little, & belated congratulations on your wedding. Exercise, including breathing exercise, & gentle stretches are my mainstay.....I have for quite some time been doing the exercises I used to teach, as I'm a physio (tho it's been a long time since I worked as such). Still, it's always good to hear when someone says physio helps.
    Pain is a difficult thing to manage I know, as I have a daily battle with it, but have found other things like distraction & mindfulness can also help, & I've been taking cannabidiol (CBD) for 2 years, which dampens the pain down a bit. As others have found, it's often a combination of things that helps the most; it's just finding whatever your 'winning' combination might be.
    It's great you're writing a book (your form of distraction!), & I hope it's going well. :)
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,519 Scope community team
    Sounds really interesting @Hanzy321 What is your book about? I'm glad you are able to have a form of distraction, I hope it keeps you busy. :)
    Community Partner
    Scope
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