Chronic Pain Support Thread

Great idea @outlander

I have had chronic pain for long time and it's a day-to-day battle for everyone who has it - it can be like climbing a mountain without the energy to admire the view.

Personally - I do take time to admire the view - after all this effort I have to find something rewarding - and the view is what I have learned about myself - I think - I hope.

It's hard to accept - chronic pain is unlikely to be cured - only managed - and this is hard work - and we get lectures about medication - told to look at the bright side - (is there one?) - that we will have a better time in the next life - (weird that) and once I was asked what I had done in a past life to deserve all of this - (wow - no comment about something I don't believe in.) None of us have done anything to deserve the pain we have now.

We just happen to be the people to whom this has happened - and we can only learn to manage it.

There are treatments - I have found Transcutaneous-Radio-Frequency-Pulsed-Therapy to work sometimes - and that's good for my shoulder - facet joint injections into my lumbar spine have lasted well but need redoing sometime soon - and local anaesthetic injections into my knee have helped a lot - and these work for some people - maybe other people will have luck as well.

Pain is hard work - dealing with it is a lot like dealing with depression - though I think I prefer the physical pain because I do have effective management - and maybe my memories of reactive depression are way in the past - tough though.

It would be great to read what other people have tried - and thanks Outlander - for starting this

I would like to invite @ClockFace to join if they feel like it - I know you are having a rough time with pain right now.

All the best everyone

Owlunar

@Owlunar @outlander

Yeah pain is really bad, Im having a really hard time dealing with being in pain all the time and it increasing over the past few months rather than getting better with all these procedures. Pain affects so much more than just being sore, sleep, diet, mood, memory, concentration all that.

I had an appointment with my GP today, we have had to increase the pain meds Im on, so we went up a step. The pain meds that Im moving up to are really really strong, even the pharmacist said they were strong, she questioned the pain, not rudely, we have known each other for years so she was looking out for me.

I told Mum what was happening, explained the strength of the medication in terms of a medication she takes. Its the same medication basically just with some stuff to minimise the side affects and all that. She got how strong it was and really disappointingly said she isnt happy me being on such high dose pain medication. As I said to her, what am I going to do? I cant sit in agony for the sake of other people being happy.

I said to her that I was over being in so much pain, her response was she was over everything. There was no sympathy, there was no understanding and there was not appreciating for what I am dealing with. She doesnt seem to be getting or doesnt care how miserable I am, how depressed I am at the moment. The whole time I was talking my sister is texting my Mum and Mum is replying, shes texting and says Im listening. I cant get 10 minutes to talk. Like always my sister is the priority, my sister can talk to Mum for hours uniterupted, talk about anything. I cant get 10 minutes. Even after telling Mum everything my sister has been saying about Mum to her support people, its bad enough that she has been listed as priority 1 for housing to get her away from Mum. Still my sister is the only child Mum actually cares about. Still my sister is in a worse position than me and still I dont matter at all.

Dad cares about as much as Mum. I talk to him about anything at the moment and he said I dont know and walks off. If I could get 10% of the support my sister gets I would be able to manage so much better. My sister on the other hand complains she doesnt get enough or the right support, she doesnt acknowledge or appreciate all the support she does get.

Sorry Im feeling pretty ticked off today, Im really having a hard day. Ive been taking a lot of break through medication which is making me feel really sick and everything is really heavy and its hard to walk. It would be nice sometimes to have the support of my family, even just being able to talk to Mum or Dad and it be about me, they express some symathy and understanding. It would be nice to know that they actually gave a shit

Hi @ClockFace

I feel a little weird that when I posted last night I almost predicted what you would have said to you today - that you would be lectured on your medication and would have unhelpful things said to you - and your mother did and said all of that. I am so sorry. I can't know exactly how you feel but I do understand - I have endured that myself from my family and cut ties with my family of origin - it's tough.

Your pharmacist was looking out for you - however - imo it would have been more appropriate if the pharmacist to have had that conversation with your GP - still you will have this happen from time to time - and it is your right to have the prescribed medication.

You do not have to sit around in agony to keep someone else happy. You have to be able to live your life - not someone else's - and indeed you can't have a conversation with your own mother without her texting with your sister - and that is totally thoughtless on your mother's behalf - and your dad seems to be stuck in the argument - he is making his choices which don't help you at all.

I read your other post just before I started to answer this one - so I will get back to you on that - I really understand what you are writing - and this is not acceptable behaviour from a family - alas - this is what's happening.

I'm in the middle of something else myself - I will answer your other post asap -

Thinking of you - this is so hard for you to live through - if you did have family support it would be easier for you to endure - that's for sure

Owlunar

@Owlunar @outlander

It sorta dawned on me today that I get say 9mths pain free after the procedure. The pain comes back, I wait a month for the procedure, 6 weeks for recovery again and another 9mths pain free. Thats sorta best case scenario. So every 9mths I get 2.5mths incredible pain. But atleast I get 9mths pain free. Thats $1400 out of pocket each time. Thats if treating the Lumbar Facet Joint Dysfunction is all we need to do. If we need to treat the Sacroiliac Joint Dysfunction as well then double that. Thats for life, unless they come up with something better.

Then I have cystoscopies every 6mths for the next 5yrs, thats only $330 out of pocket. If they find a tumor then another procedure and more money.

Ive got colonoscopies every 5 years, thats not so major.

Thats lots of planned procedures. On top of them I have doctors and specialist appointments and all my medications. Then psychologist and psychiatrist appointments.

Im leaving home ASAP so there will be increased rent and electricity costs etc. I have to leave home, my family is beyond toxic and I need to be seperated from them.

Im starting to wonder if its all worthwhile though. Once Ive paid all of the above Ill be lucky to have enough money to actually do that but if I do Im not going to have any money left to actually enjoy being out of pain, mentally stable and healthier. Im gonna work to pay for the above but what more, whats the point in that?

Hi @ClockFace

It won't be easy - hopefully your health will improve away from the toxicity of your family. I know mine did.

Stress causes a buildup of cortisol in the body and this causes health problems - getting away from all the stress you have atm will be easier for you.

And yes - it does sound expensive - keep in touch with your financial advisor - there are ways of getting through all of this so don't lose heart - keep the main aim of better health in your mind and yes - we will be here for you

Owlunar

Hi @outlander

I just wanted to reach out to say thank you so much for creating such a wonderful thread 💜

I’m so sorry to hear that you suffer from chronic pain and in my experience, there are so many complexities associated with this 💜

A little while ago, I was searching for some information about a pain condition that I’ve recently been diagnosed with and I came across a couple of really great resources. As such, I just wondered if this would be the sort of thing that would also be helpful for us to share in this space?

Thank you so much again for creating such a wonderful space where people who are living with chronic pain can come together 💜

Take care,

ShiningStar 💜

Hi @sandym

I just wanted to reach out to let you know that one of our lovely Community Guides @outlander has created a thread especially for people who are living with chronic pain and as such, I just wondered if this may be something that’s helpful for you too 😊

Please know that there’s absolutely no pressure to join in - but if you were interested, you’re always more than welcome to drop by 💜

Take care,

ShiningStar 💜