What to do when it’s just all too much? — Scope | Disability forum
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What to do when it’s just all too much?

Tamar
Tamar Community member Posts: 2 Listener
i have chronic pain in my joints. It’s constant. Right now it’s just all too much. What can I do? Resting helps but makes me more miserable. Distraction helps but makes the pain worse. 

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi @Tamar
    Welcome to the community, I am so sorry to hear that you are struggling.

    Are you getting any support about your pain? Do you see a specialist pain clinic?

    There is some interesting information here about meditation and guided imagery for chronic joint pain. 

    Quite a few of our members are struggling with chronic pain and it might help you to read through their posts?
    Scope
    Senior online community officer
  • Han_Solo
    Han_Solo Community member Posts: 114 Courageous
    Welcome to the community.

    I am glad Sam has reached out to you, she is an absolute machine on this forum and does care.

    A pain specialist can keep adjusting your pain meds to find a equilibrium for you. But it will need to be adjusted periodically as your body builds up an immunity to the affect of the drugs.

    I have grown to accept my severe chronic pain and made the necessary adjustments in my life, so the pain does not take over it. I also take (sparingly) sleep meds at night time just to get a half-decent sleep but I do not over use it as I want it still to be effective for me.

    Resting does helps and using a memory foam mattress has helped me with the pain at night time.

    Also, if possible for you and accessible, I enjoyed a good sauna and felt great afterwards.

    Please follow Sam's advice and check out the rest of the forum. 

    The best of luck to you in 2018.
  • sleepy1
    sleepy1 Community member Posts: 297 Pioneering
    Hi Tamar

    Go for a long run (only kidding), as you say doing things can make the pain worse and doing nothing makes you feel whats the point. 
    Anything that makes you feel a bit more comfortable is worth a go even if it only gives some short term relief.  I have a back massage thing that heats up (not sure what its called) that you can put on a chair or a bed that is really good.  Also a foot massage machine that really helps when the pain gets too much.

    Hope you can find some way of easing the pain, sometimes just sharing your struggles with like minded people helps, so you have come to the right place.

    Big Hugs Rosie
  • Tamar
    Tamar Community member Posts: 2 Listener
    Thanks for your advice. I've been through a pain clinic and tried many different meds but they either didn't work or made my brain so fogged I couldn't work- I'm studying for a PhD so need my brain, and studying is great distraction for me. I have a memory foam mattress. I find hot baths help, and warm sunshine(! have to wait for that one!), and a TENS machine for specific bits of pain. But its the overall relentlessness that gets to me, and the fact that nothing works well, or for long. I cant live in the bath, and sleep problems get to me. My GP is not at all supportive, and I feel like I've tried everything- different meds, surgery, splints, pain clinic etc. I do stay mostly positive but it just gets too much sometimes.
  • brookla
    brookla Community member Posts: 1 Listener
    Hi. I've heard that being in water can help ease the joints when you have joint pain. Gentle swimming, a do in the ocean, soda baths, hydrotherapy etc lots of different ways. See which suits you best. Massage can help too, the masseuse does a consultation first so they know about any contraindications. I used to do massage when I was a beauty therapist and even just the relaxation can help pain relief as it allows down your breathing and helps lymphatic drainage. Xx
  • Han_Solo
    Han_Solo Community member Posts: 114 Courageous
    I am glad you are still fighting strong and getting on with your PHD.

    Good on you.

    My brain does get foggy with all the medications at times, so I can understand your frustration there. Some days I take less pain pills and try to survive as long as possible that way but when I need to do something, I increase my meds to the recommended level and I do feel a reduction in the pain. I think it is just me trying to trick my body but it seems to work for me. I am also lucky in having a high tolerance to pain.

    I did save up for a jacquizzi bath spa and it does wonders for my joints but I recognise that is not possible for everyone to have one installed. I agree with Rosie that also posted on here with all the electrical massage stuff as I have some for my neck, all body and legs and it is great but you cannot be on it for too long.

    May I ask for how long you have had this pain for? I have had mine for nearly 20 years and got use to it. There are days (even weeks) when the pain spikes and then I cannot do anything. But for other days, like yourself, I need to be distracted and the pain does recede into the background, but always a constant presence.

    I was also told that hot weather would be good for me.

    Does your chronic pain get worse in the winter?

    Mine does.

    With regards to your GP, I would just change them if possible. It is easier in the bigger cities to do but may not be possible if you are living in smaller communities. If you can, then find one that you feel comfortable with.

    Keep positive and do the Scope community proud and attain your PHD. You will be an inspiration to others.

Brightness

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