Lived Experience Forum

[ClockFace]

@Dimity 

Back issues are a real challenge. They are unlike other sources of pain, so many people have the view that because its not so easily quantifiable or visable. A sore arm, you can see someone carrying that, you can see them holding back, holding the arm gingerly etc. Sore leg, there is a limp but a sore back, its not something you can really avoid using, take pressure off in anyway, there is no real visable signs that your actually in pain for the most part. You might be hunched over a bit, walking slow etc. but people write that off. 

Im really sad for you that you are going through challenges with your back. Having my own issues, I feel for anyone with severe back pain. I have other chronic pain issues and there isnt anything that compares to chronic back pain. You cant be gentle, take the pressure off or anything like that, no matter what your doing, your engaging your back and its eventually going to hurt as a result. 

If you have muscular issues as a result of your pain, Tiger Balm is my go too for a heat rub type thing, its far better than anything else Ive used. It helped me a lot in the early days but as the muscles became more messed up it helped less, though I still use it for strained muscles, particularly in my neck which helps relieve headaches. Its also really good for headaches etc by rubbing on your temples.

If your GP isnt supporting you fully with your health issues, any but inparticular your back, really consider changing GP. Its so important that you are supported by your GP, they need to be on your side and understanding, especially when it comes to pain medication. 

If your on strong pain medication, request to see a pain specialist. There are lots of options, not just typical pain medication, some anti-depressants can assist in pain relief and so forth. There is also pain relief that lasts much longer than typical stuff that you would be prescribed by a GP. They all have pros and cons which is where a pain specialist is helpful. 

The other reason to have a good GP who is on your side is if you are going to suffer significantly long term and you are limited or restricted as to what you can now do. You might want to apply for a disability parking permit, very helpful to minimise the strain of shopping etc. You might also want to apply for NDIS, which I am in the process of doing, a good GP is the cornerstone of this process.

If I can provide any help or advise Im more than happy to do so, so many people find it hard to accept what people with back issues are going through, but those of us who are going through it understand and we should stick together and support one another.

[Emelia8]

Thanks @tyme @Shaz51 @Dimity 😊💝

Thats a wonderful response @ClockFace  and so full of helpful advice. I completely agree with everything you have said.

Yes,  it is sooo important to have an understanding GP who helps you negotiate the many options available to us.

I was very fortunate with my GP,  as he was able to keep my mental health diagnosis (Complex Ptsd) as a seperate issue to my physical health. And therefore not just write everything off to MH. Sadly I think not all do that. 

I also agree that a pain specialist can be helpful. So @Dimity  this may be an option you may wish to explore. They can certainly help you negotiate the medication options available to you. And other possibly helpful treatments too. 

@ClockFace Its clear that you've 'been through the mill' with your back pain. I'm sorry 😔.  But thank you for being so willing to share,  and doing so in such a clear way. 🌷

Emelia

[Shaz51]

Sending morning hugs @Emelia8 , @Dimity , @ClockFace , @tyme 

Last night And now my leg is feeling kind of  numb 🙃 

[Appleblossom]

Great thread @Dimity 

Thanks for tag

It is good read people's contributions @ClockFace @Shaz51 @Emelia8 @hanami @tyme 

Bulges do not necessarily mean surgery @hanami 

My back journey has been long. Since the mid 1980s.  Cervical spine bulge was most prominent back then, although it did include lumbar issues.  I have had to move between conventional and alternative medicines a bit, but on a shoestring.

I had one gp give me such a deep and thoughtful response with my xray up on the wall.  He said avoid surgery as I was a musician.

Another masseur encouraged me to keep active in the garden and I did.  It was just after leaving my exhusband.  My style has been SIMPLY: keep rotating activities and keep moving.  My neck pain improved immensely though it is still stiff and has limited range of motion despite years of stretches and exercises etc.  My son said I was getting younger!

I have also had Medical Gaslighting due to MH stigma by a recent gp which was very shocking to come to terms with.  

I say my osteo saved my life.

My previous physio warned me my lumbar would be a problem and it has been difficult to sit as my lumbar spine is getting worse.  My new approach is to lie on back rather than sit.... and keep moving.

[ClockFace]

@Dimity @Appleblossom @Shaz51 @Emelia8 @tyme 

For those that dont know.

Ive dealt with spinal issues for the most part of my life. I was born with the same disease as the Hunchback of Notredame. It was caught early so the hunch isnt pronounced but it caused spinal issues from an early age. I worked as a manual labour for many years and this ended up resulting in a major spinal injury, buldging discs multiple compression fractures through out my spine. Years of treatment and recovery, but ended up permantly disabled. Recently they found more fractures in my T7-T10 which are years old (unsure when they first occurred or what caused them). They have caused a crushing affect on my vertebrae. I also have Neuropathic pain as along with the pain caused by this. I also have 3 discs that are buldging. 

I have gone through all potential options to rectify the situation and there is no way to resolve the issues, no surgical options etc. However, we are considering the possability of a Spinal Cord Stimulator, at this stage the primary hurdle to having one implanted is my weight. The battery needs to be 5cm from the skin and at my size this may not be achievable. Though I am doing my best to reduce my weight so I am in the best place to have one implanted if it is deemed the right treatment for my pain. 

Im on 3 different types of pain medication, however they are looking at adding a fourth to reduce my 12 hourly pain killer, for a few reasons. Im in pain constantly, the amount of pain varies but doing pretty much anything is a trigger for pain. Even sitting and laying, I can only do for so long before pain gets bad and settles in. 

Its one of my more prominant medical issues, I have a number of them and a number of mental health issues. I have other sources of severe chronic pain but the back is most dibilitating. I see so many similarities between the attitude towards people with spinal issues and those with mental health issues, as I experience the attitude towards both. I always refer to things as spinal issues or spinal disability, as its about my spine. A back problem is more so (in my mind) referring to muscular issues in the back, a sore back is muscular not spinal generally. A I would say almost anyone with chronic spinal pain also has chronic back issues. With the issues I have with my spine have caused my muscles as they are being pulled and twisted as they were not designed to be and this exasperated my issues. 

Im happy to answer or do anything I can to help and support anyone experiencing spinal pain, or any kind of debilitating, chronic, long lasting condition, physical or mental. I have a fair bit of experince with both and if it can help somone else, then atleast my experiences can benefit someone and not be just a horrible series of events in my own life.

[Emelia8]

Thanks for the clarification @ClockFace . And I am sorry that surgery is not an option for you,  as it was for me. I hold out hope for you that a Spinal Cord Stimulator may be approved and fitted. It could just be the answer for you, so I hope you get to find out.  Best of luck in losing the necessary weight,  as I imagine that will be difficult. I'm fortunate I guess in that I am actually the opposite, I'm told I need to gain a little.  Life is unfairly hard for some, and you are one of those.  I think you are incredibly brave. 💝

[Patchworks]

I thought I had a "bad back" until I read your stories 😔 I'm sorry to hear about your spinal and back issues. It's encouraging to read there are solutions for you.

My last scan showed a disc protrusion and a disc bulge. I have sciatica too. I am on an antidepressant but unsure if it helps with pain so I'll ask my Dr about that. I'm too scared to consider surgery so I put up with it and so stretches and pilates. 

I don't get onto the forums very often lately, so glad to see this thread as pain and mental health can be linked so much.

[tyme]

Thank you for sharing everyone. I'm glad to know I'm not alone with my pain @Patchworks @Dimity @Emelia8 @ClockFace @Appleblossom . My pain certainly very minimal compared to everyone else...

[Dimity]

Thanks for your wisdom @ClockFace @Emelia8 and hard-won experience. It sounds difficult and traumatic and I very much respect your suggestions. I'll make it a priority to get reliable primary care. Thus far the worst pain has been the legs,  the back and spine less so, but I need to follow up pelvic issues. 

@ClockFace I hope you can find relief, it's been a long battle for you. Hopefully the spinal cord stimulator will become possible for you sooner than you think. It's not good the compression fractures were undiscovered or overlooked. Do you have physiotherapists and occupational therapists on your team? 

[Dimity]

Hello @Shaz51 I hope your day improved.  Yes pain overnight is a trial but thank goodness doesn't often wake me. An arm or a leg occasionally goes numb.