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

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

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

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

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

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

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

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

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

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

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

Hi Harpbird,

I haven't read through all the thread here but I thought I'd briefly post a comment as I saw yours - sorry to hear what you're going through. I have chronic pain from a lumbar spine disc problem (nerve pain). I read a couple of excellent books on pain management from the library where I live and my physiotherapist put me onto Utube talks by Lorimer Moseley, who is a physiotherapist in Australia and worth listening to.

I get bad flare up days but the pain is still not near as bad as it used to be - I use heat packs, I walk as much as I possibly can, swimming or walking in water is great - also a few stretch exercises - and learning about neural pathways and how much your mental health is connected to chronic pain - Moseley's talks are good to help understand this. Fatigue/anxiety can make pain flare up badly.

Don't know if you have a pain management centre available to you at a hospital near you? Anyway it might be worth looking for some books on chronic pain in a library near you for techniques to help you cope - distraction is also good - notice while you are absorbed in something you enjoy you don't feel the pain as much?

I wish you well. Lots of good Utube talks on chronic pain management. I hope you find some help chronic pain is horrible but you can learn how to manage it as well as you can.. good luck! Cheers.

Hi hanna3,

thanks for your reply, yes I have been to an intregrated pain management at a large hospital near me , 18 months I followed it through , did everything they asked. The thing is going all that way ( only 50 min drive) to be there for 5 hours a day, then to make the trip home. I need a driver as I can’t drive that far. I am limited to 25 mins to prevent a flare. All I felt like I got out of it was that the pain is in my head. A few others did to but the quit coming.

two years after that I went private to a pain specialist to help me get off the amount of pain meds I was on. I actually cried when he said that the pain isn’t in my head . Took 7 months to wean off those meds ( going through the withdrawals was horrendous, something I never want to have to go through again) to change them at lower doses.
He gave me a book to read ( it was just so repetitive I gave up reading it)

I can distract myself, my grandkids are my world and am too busy to feel the pain. Or can crochet for a bit or make macrame floating shelves.

I will search the out those sites you recommend. Thank you.

harpy

Hi Harpbird,

No it's not in your head, the pain is real! What they mean I think is that when pain lasts too long, the brain starts over-reacting to it and makes the pain feel even worse. It gets over-sensitized and sends pain signals when there isn't any danger to your body occurring; and things like stress, anxiety, worry, fatigue, makes this even worse.

Chronic pain is absolutely horrible. I have it and there are days when I could scream.... but I know they settle down and I go back to being pretty OK. I really understand how much you must suffer from it, I remember telling my doctor I didn't know how to survive through it at times - but the stretching/meditation/heat packs/exercise has made it much more manageable. I still wish like heck I didn't have it, but I can manage it more or less OK...

I had a steroid injection into the spine and it helped slightly for a few weeks, that's about all . I was really hoping it would give complete relief but nope! So then I concentrated on yoga stretches, heat, relaxation, careful exercise, and laughing at funny things actually is really helpful!

I think people who suffer from chronic pain are incredibly brave - people who don't have it just don't understand how exhausting and debilitating it can be. I really hope you find something to give you some bit of relief!!! I find it frustrating that people think I've just got a bit of back ache and suggest I use a couple of cushions when I sit down - it's nerve pain from the disc pressing on the spinal cord and it's like being boiled alive, but people just don't get that!!!

Really here to give you support when needed my friend!

Thanks hanna3,

your reply was lovely, I did have a big reply done this morning but it just vanished into cyberspace lol

I have done a full intragated pain management course in a major hospital, it was so hard I put my all into it. I came away with nothing but being let down. Traveling is my spines worse flare upper. The days were 5 hours long.

I ended up going To my GP and asking him to be referred to a private pain specialist, ( one I had seen before), it cost a motsa but he was so caring, told me my pain wasn’t in my head as I was lead to believe , he said you just have to see your scans to see where my pain was coming from. Well I got him to help me come off my meds . It was the hardest 7 months I have had. He was going to insert a stimulator in my spine , everything was set just had one more appointment to fill out forms, one of the last questions was had I had cancer in the last 24 months. I said yes it was 19 months ago. Well that was it , they can’t insert the pain stimulation in my spine . I was gutted. He change my meds and lower doses to re-set.
He also recommended a book , got it here somewhere, yes I did read it but it was just so repetitive.

I can distract myself , I crochet, make macrame floating shelves and hanging baskets. I take my time and break it up.
I am seeing a psychologist but sometimes I know the don’t get it, they don’t suffer chronic pain 24/7.
today is an ok day, just me and my dog in front of the telly near the fire. Hugs xxxx

Hi Harpbird,

Sorry busy day today - sounds like you were having a nice one! Good on you. Sounds like you've been very proactive in trying to get help for you problem - is yours in the upper spine - thoracic? Just wondering if you have tried swimming/hydrotherapy? The TENS (I think that was what you were talking about, the nerve stimulator) would have been a real help, what a shame.

My GP tonight said she was thinking of getting me to see a surgeon as mine has been so bad, but I would prefer to keep on with physio and start doing some more swimming... going to talk to the physiotherapist here on Wednesday... spine surgery doesn't thrill me... I'd rather try anything but that first.

You sound like you've tried a lot of things and are just doing the best you can... I think Lorrimer Moseley's best video was called Taming the Beast... it did help me.. I got off most of the painkillers the doctor put me on and gradually walked a bit more and a bit more - and used heat packs... and muscle relaxation - and the physio... but I still can't walk long distances and it's tiring. On top of my sight problem (losing sight in my right eye) it makes life rather difficult at times and I do get weary!!!

Off to have a cuppa and watch some TV and chill for a while... It's lovely to chat with you and I wish we could think of something that would help us both!!!!!! Feel free to vent anytime... I had horrors at the thought of spinal surgery tonight... I'd rather give more intensive physical therapy a go first... eeeek.

Take care of yourself dear lady! At least we both know how exhausting chronic pain is... hugs!

Hi ya everyone, not doing too good today, head is taking over myself.

my pain has been my enemy for far too long than one person should suffer.

I spent all Wednesday with my mom and Thursday morning with my daughter and grandson then went to my osteopath appointment. Then come about 4 in the afternoon I felt like I had just ran a marathon, the fatigue was crippling so I got a rat test of my daughter and tested positive for covid. How can you be fine one minute and taken out the next, Oh my word I am so fatigued, I just washed the dishes and that felt like a marathon. I am really over all this pain .

Hello Harpbird,

Although I am glad to see you again, I'm so sorry things have been so bad. Are you saying, both you & your daughter have tested positive for COVID-19?

I've had some health issues to deal with & the fatigue I've felt was unexpectedly more severe than I imagined it could be. I've had fatigue issues due to sleeping poorly, but this was different. I could sleep while in pain. But this last day or so has felt less intense,& I slept poorly last night, because I couldn't get comfortable.

For me, it seems having physical pain, having depression or being prone to it, & similarly for anxiety, seems to feed on & into each other, making all worse as a result. & if any of these causes one to feel in any way debilitated,, unable to get on & do what we want or need, & heightens our awareness of not being able to do as we once did, losses & grief, all become involved.

& time stretches & it can feel as if the feelings, (physical & psychological) will never let up. Of-course it feels horrible & we need whatever help & support we can get hold of, & not to be fobbed off with "oh, it's all in your head".

& what I have is no where as intense or as debilitating as what yuo, Hanna & Elithia h& others I've seen on BB, have described.

🎶❤️☮️❤️🎶🐦☮️❤️🎶🌹

mmMekitty

Thanks Mekitty, thankfully my daughter is negative, she has been testing her family every day. With a gorgeous new bubby to look out for. I get our rat kits of her as she gets a few for there business. Yes my osteopath explained that when you get covid It has a lot of inflammation with it and as my body is riddled with inflammation I will hurt a lot more. I just don’t know where I picked up the covid ? I am so pedantic about sanitizing and masks, my family joke I should buy a sanitizer company lol. I was meant to meet up with my spine dr this coming Tuesday so I have to ring tomorrow and cancel that and who knows when I will get in. I also have to cancel my skin check on Thursday which is extremely over due. I am just feeling so alone. Hubby has moved out into the caravan living it up in the air con. I am trying to care for myself with a high fever under a fan. I haven’t eaten today, just could stomach it. I have been sipping water. My mood is just so low.

Hi Harpbird,

You may never get a clear answer as to how you caught COVID. Testing everyday, I would think you have found out early, & that's good for others around you.

Given your other health concerns I would suggest you keep in contact with your GP, & monitor those symptoms.

It's good to keep drinking water, after all the sea level is rising around Croix's iceberg. I don't know if you saw, I thought there needed to be a big band, for Croix to enjoy, & i have assigned instruments to various BB members, & (unless you have another preference,(, you are playing 🥥🥥. You can surely fit them in your suitcase, practise anywhere you like, & drink from them when you are resting. 😸

I tried to stick to instruments for which there is an emoji.

So, perhaps, put some music on, or anything to have some sound around you, or if it gets too lonely, make enough noise to wake up that bloke in the caravan.

I wonder, do you & hubby have two phones?

I'm not really too far away. 😺

mmMekitty

hi mmkitty,

oh no I wasn’t testing every day, my daughter is, so if she gets a positive she will know best how to keep her kids safe. Definitely keeping my gp in the loop, though not much he can do for now. I canceled my spine docs appointment and rebooked , only have to wait 3 weeks so that’s good. Also my skin check is a two week wait. So I am happy about those. Not sure if I can drink that much water to save Croix 😁 Oh you mentioned 🎶, now you do have my attention , music 🎵 always puts me in my happy place. I love the 50s/60s blues . In 2009 I learnt to play the harmonic to that genre, my teacher, who called me harpbird, he always tried to encouraged me to do a gig 🎤, yes, he talked me into it and I did a gig in Newcastle. A Bonus, the harmonica can go in my pocket lol. Might get the pots and pans out and play the 🥁 that might drown out the lodger in the caravan. Yes we each have our 📱 mine has kept me going, I have found a few games that I am enjoying. thanks for chatting. Hope you have very meowy good day. 🌈

Glad you could rebook the appointments .

(Drink more water)

& enjoy music. Pots & pans is a great idea. 😺 Singing, too?

(Drink more water)

& you could write "The Covid Isolation Blues"

(& drink more water)

I have an app on my iPhone - Garage Band. Glitchy, (& it doesn't have a Harmonica), but I like to mess around with the piano on it. I can't do the editing because that stuff doesn't read aloud everything I need to work it, & the voice gets annoying when I need to hear the music. But, if you had that or something like, I think you could have a lot of fun with it.

(Fill your water glass again)

I tend to prefer jazz &/ classical. More often small numbers of players, or solo. Part of that is because I have lost a lot of hearing in one ear, & the same note heard first in one ear & then the other will sound different.

(Have another glass of water)

& I also can't sing as I used to. I'm trying to enjoy more contralto than I once did, & that was because I wanted to sing as wide a range as I possibly could.

(Can I have a glass of water,too?)

So much has changed since then. But I cant seem to stop entirely, no matter that I can't hit notes or smoothly transition from higher to lower registers, anymore, I still sing when I feel like doing it.

(Yummy water)

& now I know about "Harpbird", & will happily imagine a harmonica in your froggy mouth!

❤️🎶❤️🎶❤️🎶❤️🎶❤️🎶❤️🎶

mmMekitty 😺

Hey guys,

I know I'm a bit late to the pain party but I thought I'd share my experiences.

I'm not exactly sure if this counts, as I am undiagnosed but my doctors think I have endometriosis. I'm apparently too young to have the exploratory surgery (which is bull, because kids as young as 9 have had it.)

People tend to think that the pain associated with this condition is only once a month but it's daily.

The pain can be so excruciating that I end up throwing up and unable to eat. In times like that is when my depression decides to kick in.

I haven't had the time to go through and read all the comments here so if anyone has advice of how to stay positive, please let me know.

Thanks, Bee