topic Chronic Pain - good days and bad days in Staying well

Chronic Pain - good days and bad days

Elithia — Thu, 14 Jan 2021 10:30:33 GMT

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

Chronic Pain - good days and bad days

blondguy — Thu, 14 Jan 2021 10:53:03 GMT

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

Chronic Pain - good days and bad days

Elithia — Fri, 15 Jan 2021 08:33:13 GMT

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

Chronic Pain - good days and bad days

Harpbird — Mon, 01 Feb 2021 12:00:26 GMT

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.

Chronic Pain - good days and bad days

Elithia — Tue, 02 Feb 2021 10:31:15 GMT

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

Chronic Pain - good days and bad days

blondguy — Tue, 02 Feb 2021 11:48:53 GMT

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

Chronic Pain - good days and bad days

Harpbird — Tue, 02 Feb 2021 11:53:43 GMT

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

Chronic Pain - good days and bad days

Harpbird — Wed, 03 Feb 2021 04:39:00 GMT

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

Chronic Pain - good days and bad days

Elithia — Wed, 03 Feb 2021 08:47:44 GMT

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

Chronic Pain - good days and bad days

Harpbird — Wed, 03 Feb 2021 12:23:30 GMT

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

Chronic Pain - good days and bad days

Elithia — Sat, 06 Feb 2021 10:08:08 GMT

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

Chronic Pain - good days and bad days

Harpbird — Sun, 07 Feb 2021 03:43:56 GMT

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

Chronic Pain - good days and bad days

Harpbird — Fri, 12 Feb 2021 06:13:26 GMT

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

Chronic Pain - good days and bad days

Harpbird — Thu, 18 Feb 2021 04:09:02 GMT

Hi Elithia, I hope your doing ok, thinking of you.

Chronic Pain - good days and bad days

Harpbird — Thu, 11 Mar 2021 08:27:26 GMT

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.

Chronic Pain - good days and bad days

Harpbird — Fri, 12 Mar 2021 12:17:30 GMT

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. 🤞

Chronic Pain - good days and bad days

Harpbird — Fri, 30 Apr 2021 23:13:20 GMT

Hey Elithia, how are you coping ? Low pain I hope for you.

Chronic Pain - good days and bad days

Harpbird — Thu, 17 Jun 2021 23:54:45 GMT

Is there any chronic painers out there?
I have had my 10 injections in my spine and two on my right shoulder.
I had all my hopes pinned on these lot of pain relief, just even to take the edge of for a little while, but I am back to square one and in a very bad head space .
how do you get by ? I am really struggling.

Chronic Pain - good days and bad days

Hanna3 — Sun, 20 Jun 2021 07:41:09 GMT

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.

Chronic Pain - good days and bad days

Harpbird — Sun, 20 Jun 2021 10:26:51 GMT

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