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Forums / Staying well / Chronic Pain - good days and bad days

Topic: Chronic Pain - good days and bad days

17 posts, 0 answered
  1. Elithia
    Elithia avatar
    41 posts
    14 January 2021

    Hi lovely people,

    So my main mental health challenge these days relates to living with chronic pain. I wondered if there might be others in the same situation?

    It's a tricky topic: it doesn't fit neatly into anxiety or depression, and so I've posted it here.

    I'm thinking of a thread where people can share their good days (strategies that work; small victories; celebrations) as well as bad days (hitting the wall; or just those dark nights of the soul when pain gets in the way of sleep).

    If you are living with chronic (or acute) pain, and this thread sounds like something you'd be interested in, I'd love to hear from you.

    Thanks for reading.

    Wamest wishes,

    Elithia

    1 person found this helpful
  2. blondguy
    Life Member
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    blondguy avatar
    11075 posts
    14 January 2021 in reply to Elithia

    Hi Elithia

    No problem at all. Chronic pain can have an impact on our mental health so its a very relevant thread topic and thankyou! I have a close friend that was diagnosed with Rheumatoid Arthritis and she has been experiencing chronic pain on and off for the last 20 years..(the good and the bad as you mentioned)

    I dont have her pain yet I have seen her struggle with her mental health/anxiety/depression as a result

    Great thread Elithia.....I hope that others with chronic pain can be a part of the discussion

    my kind thoughts...Paul

    1 person found this helpful
  3. Elithia
    Elithia avatar
    41 posts
    15 January 2021 in reply to blondguy

    Hi Paul,

    Thanks very much for your reply and your encouragement. I was sorry to hear about your friend - 20 years is a long time! Hope she is doing Ok these days.

    I've been struggling with my pain levels quite a bit today. Just the end of the week, I suppose. My pain meds make me feel woozy and anxious, so it's a bit of a tough choice sometimes! Pain, or feeling crappy from the meds. Argh!

    Anyway, thanks again for your reply. Hope things are well with you?

    Kindest wishes,

    Elithia

  4. Harpbird
    Harpbird avatar
    155 posts
    1 February 2021
    Hi elithia, your so right, chronic pain doesn’t fit with depression. My gp says my pain has caused depression. I told him I have suffered this high pain for a good 20 years, it hurts, stops me living my life Life I was, so active, never stopped, I would never give it a thought to sit and put the tv on . I struggle to get my steps in and I try hard. I know we have to stop thinking about the things we can’t do and think about the things we can do. But to do things sets off a flare up and just not worth it. That’s what causes depression.
  5. Elithia
    Elithia avatar
    41 posts
    2 February 2021 in reply to Harpbird

    Hi Harpbird,

    It's good to hear from you.

    Sounds like you've got lots of experience with chronic pain, and that it really changed things for you. There's a lot of grief, isn't there, in losing functionality? Like losing part of oneself.

    I totally get what you mean about flare-ups and a low mood. It's really tough to accept and live within limitations. My pain condition is still fairly new but it's likely to be something I live with for the rest of my life. It's scary to face the reality of my new limitations.

    It would be great to hear about any coping strategies that have worked well for you, if you feel like writing back.

    Warmest wishes,

    Elithia

  6. blondguy
    Life Member
    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    • A member of beyondblue's blueVoices community
    blondguy avatar
    11075 posts
    2 February 2021 in reply to Elithia

    Hi Elithia....excuse I for the super late reply

    Ive been okay as I dont experience ongoing chronic pain. I am on the forums doing what I can to assist people with anxiety/panic attacks/depression from my own lived experience

    my close friend has Rheumatoid Arthritis and its bad news that causes her a lot of chronic pain..Its awful and she is the same with the same meds

    Only if its okay can I ask you about the source of your pain?

    Great to have you as part of the forum family Elithia :-)

    my kind thoughts

    Paul

  7. Harpbird
    Harpbird avatar
    155 posts
    2 February 2021 in reply to Elithia

    Hello Elithia, thanks for replying that in itself helps. X.
    That’s exactly it, its the grief in loosing your ability to do just the normal everyday things.

    Sure is scary to know the reality that I probably will be in a wheel chair in the not too distant future.
    Suppose looking at it I do have coping strategies. Well I did have till today. I cared for my two 5 yo grandsons 5 days a week while my daughters worked and well tomorrow they start kindergarten. So now I will be looking forward to the school holidays lol.

    I have started to feed the wild birds that come in, there are so many different kinds.
    I now have my orchids and Hoya plants in hanging pots along a chain between two trees at shoulder hight so I don’t have to bend at all to care for them.

    i do enjoy meeting friends on a ok day for a chia latte yummy.

    I love fishing so much, I could never get anyone to come with me because if I had bait left there was no way I would come home. Lol But now I watch any fishing show I can . Suppose that counts as more of distraction strategies?
    thanks harpy

  8. Harpbird
    Harpbird avatar
    155 posts
    3 February 2021
    Well I had my GP appointment yesterday and got a copy of the report from the spect scan. I have researched a few of the problems found, I have cervicothoracic scoliosis. Cervical, thoracic and lumbar spondylosis. The thoracic has D.I.S.H. . I am actually relieved, now I know all this extreme pain isn’t in my head. Well I knew it wasn’t but some think it is. We know our bodies and when something has change and is not right.
    Now for pain specialist to get on with my pain relief plan .
    My dr also gave me a referral to a psychologist. I have rang them for an appointment but they too are busy and will get back to me .
    hope everyone is have a good day . Harpy
  9. Elithia
    Elithia avatar
    41 posts
    3 February 2021

    Hey Harpbird,

    it's good to hear back from you!

    Wow - that's an intense diagnosis from your GP, a lot going on. I can imagine how affirming it was to know there was a real cause for all your pain. I bet it was confronting looking at your CT scans - spinal scans can seem a bit intimidating! I'm so glad to hear you're being referred to a pain specialist and a psych. That's wonderful.

    I've got spinal issues too: cervical stenosis and some forminal stenosis which is impinging the nerves in my right arm and shoulder. So yeah, scary CT scans at my end as well. I've got conflicting opinions though, and my physio seems confident it can be managed without surgery. We'll see - I'm not real keen to have fusion done.

    I loved the sound of your coping mechanisms! And wow - two grandsons - that must take a lot of energy and bring a lot of smiles. I love birds too (obviously), and your hanging garden sounds so beautiful. I was out in our garden yesterday watching the bees in the coriander flowers (we've let them go to seed)... they were just loving it! Honeybees and native bees. And some big bumblebees in the sunflowers.

    I have to keep this short tonight but will check in again soon.

    Take good care of yourself, Harpy.

    Elithia x

    1 person found this helpful
  10. Harpbird
    Harpbird avatar
    155 posts
    3 February 2021 in reply to Elithia

    Yes it was a little daunting getting the results but I know my spine will only get worse . I always wondered what happens to your spine when you get diagnosed with phase 4 degeneration? Seem it turns to spondylosis?

    yeh the spine pain is the pits but it’s the referred nerve pain that never lets up. I put off surgeries on my neck as I know about the domino effect and would rather wait and have less surgeries.
    have you been given the option for a spinal cord stimulater? , I was offered it in 2010 ( as I had drop foot and needed two walking sticks to get around) got all the test done , shown what they will do and given a date for it to be put in. Then all the paper work Was almost done, got right through it till a question, have you had cancer in the last two years? I said yes 20 months ago, Well that was it , end of my chance for big pain relief. 4 Lousy months took all my hope away.

    oh my word, my grandsons are my life. It’s such a different love to your own kids. If they only know how much they mean to me, pretty much saved my life. I have another grandson Wilby, my angel baby and now we have his little sister who has just turned 4 months. She has rescued our hearts.
    Yes I love birds, is that the yellow tailed black cockatoo in your photo? We get them here in huge family groups, eating the seeds out the pine cones. They drop them and when they land on the roof almost like a small bomb going off, I would hate to be hit on the head by one lol, xx

  11. Elithia
    Elithia avatar
    41 posts
    6 February 2021 in reply to Harpbird

    Hi Harpbird,

    Yes indeed, it's a yellow-tailed black cockatoo. We get them around here too, on sunny days when they all flock down to the coast. I've planted some banksias and am looking forward to the day when they stop in to crack into some of the seeds.

    Sounds like you've really been given the runaround on more than on occasion! I'm really sorry that's happened for you.

    I've had bad referred pain from an impinged nerve in my spine for months now.

    Thanks Harpy :)

    Elithia x

    1 person found this helpful
  12. Harpbird
    Harpbird avatar
    155 posts
    7 February 2021 in reply to Elithia

    Hi Elithia,

    My spect scan also showed arthritis in shoulders more so in the right side in Rotator cuff.

    Do you like coffee or tea? Oh boy I enjoy a good cuppa. But can only use the take away mug or my own sippy cup, lol

    I do live with a heat pack on me. I made my own in a T shape , so it wraps around my neck and down my spine past my waist. It’s heave when it’s really hot. I found a heated pool good too, but live over 20 km from the nearest one.

    With your nerve pain do you get what feels like a phone on vibrate under your skin? I get it constantly in my right shoulder blade and on my thighs,

    hope your having a good day.
    harpybird xx

     

  13. Harpbird
    Harpbird avatar
    155 posts
    12 February 2021

    I have had a rotten last couple of weeks pain wise.

    Constantly ringing pain dr to be told no appointments available.

    Then I ring pain clinic today and they say they sent permission forms to continue pain management to my GP on the 24th last month.

    Finally got onto my medical centre and they looked and recon my GP hasn’t received any forms and she will ring pain dr to find out where they are.
    Then in her next breath says she will forward them into my gps inbox now. I am so mad some one is lying 🤥. Meanwhile I am suffering. grrrrrr

  14. Harpbird
    Harpbird avatar
    155 posts
    18 February 2021 in reply to Elithia
    Hi Elithia, I hope your doing ok, thinking of you.
  15. Harpbird
    Harpbird avatar
    155 posts
    11 March 2021
    Good day today for me , my pain specialist finally got back to me and I start my first course of injections in my neck tomorrow. I can’t wait.
    I hope all you fellow pain sufferers are doing ok.
  16. Harpbird
    Harpbird avatar
    155 posts
    12 March 2021 in reply to Harpbird
    Well 1st injection went in right side C5/6 nerve root. Got intense but only for a moment then everything from there through shoulder and down arm into hand had massive pins and needles and went numb. My daughter took me home and by then the intense pain was horrific , I went to bed and it lasted two hours, I was almost about to call an ambo. But husband came home and got my meds. Now it’s all good phew. No pain in hand is not what I am used to, feels good. I am booked in again in 2 weeks for bilateral injection at next level. Suppose a couple hours extra pain will hopefully give me a few month’s relief. 🤞
  17. Harpbird
    Harpbird avatar
    155 posts
    1 May 2021 in reply to Elithia
    Hey Elithia, how are you coping ? Low pain I hope for you.

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