At my wits' end

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5 years 5 months ago #22772 by wernie
At my wits' end was created by wernie
Hi everyone,

I'm new here, so still finding my way around. I really feel like I'm getting to the point where I don't know what else to do / what other healthcare professionals to visit. I'm 30 years old and have had chronic back pain for 12 years. I didn't have any accidents or trauma that set it off that I know of. Up until 1.5 years ago all of my scans, tests, etc. were clear and no one had any explanation as to what was going on. I tried remedial massage, trigger point injections, PT, Endep (and I believe another similar medication), yoga / stretching, acupuncture, and a back rehab program at one of the hospitals nearby (which was 2 weeks every day). I'm probably a few things I'm forgetting off the top of my head.

I had started to feel like I was getting a small amount of relief after doing acupuncture for a little while; however, during that time (~1.5 years ago) I had some incident where I went to stand up out of a chair and I could barely walk. Subsequent to that, the MRIs showed L4-L5 and L5-S1 bulging disc, disc degeneration, annular tearing, and nerve impingement. Everything has just gone downhill and is so much worse since then. I had two epidurals, did more injections, was on Lyrica for months (although I've since come off of that because it didn't do anything for me), went to a musculoskeletal doctor who did acupuncture, tried hypnotherapy, tried the osteo, have been doing Pilates regularly over this time, and am now back to the person I had been seeing originally for acupuncture. Things like Panadol Osteo or Voltaren do not do anything for me and I'm not currently on any medication. When I had the chronic pain prior to this I seemed to just deal with that level of pain and could handle it, but now I have horrible back pain, get pain in my left hip flexor (sometimes a weird sensation in my left foot), and have recently developed sciatica in the past few months, which is absolutely awful. The acupuncturist has said to me about trying treatments closer together and that if the sciatic nerve pain doesn't go away after my last treatment (it didn't) that it could be a bony compression, which is harder to treat. I've been told in the past that surgery isn't an option because there would be nothing to operate on (and I'd prefer not to go that route anyway!). Does anyone have any recommendations of who to see next? At this point, I don't care where they are in Australia, I'm just so over all of this!

Thank you :)
The following user(s) said Thank You: Peter

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5 years 5 months ago #22773 by jo.m
Replied by jo.m on topic At my wits' end
Hi Wernie,
Firstly welcome to the forum :) I'm so sorry that you're having such a tough time but rest assured that you will get plenty of support from all of us on the forum.
It sounds like most of us here that you have been dealing with pain for a long time and although you've had times where you have managed it, now you are having a rough time :(
I think it might be time to get referred to a Pain Clinic so that you can get professionals helping you, who are specialized in chronic pain.
It's important for you to get back on track and find the right people to help. Where are you based?

I'm currently managing my pain with the help of a rehab provider (Gold Coast) I Have a great GP who specializes in pain, a rehab physio and an OT who I see regularly and I am following a management plan to suit me.
I can appreciate your spinal problems (although mine was C5/6) which I have had for 15 years and had surgery this year but the nerve damage has already been done and I too suffer sciatica which I agree is awful!!!
I hope you will soon get the help you need and I'm sure lots of people on here will give you advice based on their own experiences and then maybe you will be able to try something new which will help.

Good luck and keep us posted

Jo

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie

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5 years 5 months ago - 5 years 5 months ago #22774 by Peter
Replied by Peter on topic At my wits' end
Hi Wernie,

Welcome to the CPA Forum.

Boy you are describing a lot of the symptoms I grew up with, but the difference is, I actually had been involved in a MVA when I was young, so there was some damage.
And I know the sciatic pain when it first comes in is utterly excruciating and very hard to deal with. It does dull down in time, but that is usually after you have learned what to do to stop making it worse and how to rest it. I'm afraid that is something that you'll have to find out for yourself.

I had acupuncture on my back, hip and leg to help deal with the sciatic pain many years ago. And it didn't last a long time, because it was/is mechanical pinching. But boy when it worked it felt wonderful. So perhaps if you do get some relief, you might want to keep it up, just so you don't have to go on medication. A small amount of relief is better than no relief at all.

The one thing that helped me the most years ago, was finding a good sports physio. She taught me exactly what I need to do to strengthen my body to support my spine and how to go about it. That saved me a lot of trouble during that period.

Then the next very helpful thing was when I attended a multidisciplinary pain clinic. They taught me all about my back, brain, nervous system and how the whole lot is interconnected and how the brain is causing most of the pain, but I have zero control over it. It is apparently all to do with our "Flight or Fight" response.
All that I learned from that pain clinic helped put a lot of things into perspective for me, which made my life a lot better. I have reduced some of my medication, but am also tolerating a lot more pain than I used to, simply because I have accepted the fact I will die with all these problems and there is nothing I can do to change it, except to remain as healthy as I can be, which is also a daily struggle.

I have been doing this for 55 years now. I have learned most of these things before getting to the pain clinic, but they just joined all the dots. The one thing I found to be the utmost helpful of all, was accepting my pain condition and my situation. I stopped struggling against it, constantly trying to find a cure and get back the superman strength I use to have. Once I did that, my health improved and my pain levels dropped. It was the stress of fighting that kept me is such high debilitating pain ALL THE TIME WITHOUT ANY RESPITE!

I actually became more active once I gave up the fight. Ironic isn't it. You struggle to get better and only make yourself worse. Once you give up the fight, you start to improve and then you can get back to doing some of the things you like. Sheesh!

Apart from what I have said to you above, there really isn't anything else I can suggest. It is a very difficult thing for us pain sufferers. When we stand in front of people or doctors, we look healthy and they don't believe us. When they can't find anything broken, they are convinced it is in our psychological mind and what we need is antidepressants. None of that is true! Antidepressants are not going to help us.

Please keep reading as much as you can. But if you feel like joining an online pain clinic that is run for free, you might want to give these people a try, because this course is really good at explaining what is going on in your body: ecentreclinic.org/?q=PainCourse
Read the whole page then sign up at the bottom. I've done it and think it's really worth while.

Remember, you'll always get support and understanding here with us, because we all suffer like you do.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Last edit: 5 years 5 months ago by Peter.

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5 years 5 months ago #22777 by john01
Replied by john01 on topic At my wits' end
"went to a musculoskeletal doctor who did acupuncture"

Hi, Wernie, I don't think musculoskeletal doctors do real acupuncture. I think what they do is dry needling.

Peter (Administrator) possibly knows more about acupuncture.

back pain / bulging disc
90% of pain gone after having both acupuncture and laser therapy while visiting my family in Brisbane (Thanks for the suggestions from the people here)
stay positive, be strong, never give up hope.

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5 years 5 months ago #22780 by wernie
Replied by wernie on topic At my wits' end
Thanks for all of the replies. Jo, I'm based in Brisbane. Would you happen to have any recommendations for where to go in Brissie? I did have a GP say awhile ago about a pain clinic, but he said they would most likely just put me on meds, which I really didn't want to do if I could help it. Although I think at this point I don't really care as long as it helps. I also have a history of other conditions, so I get a bit funny with medication and side effects (mainly associated with weight gain). So how does that work with a pain clinic - I need a GP referral, right? I've read that it can take a long time to see someone, which is a bit worrying for me at this point! Can someone give me an idea of what they do, like how they approach things after taking your history and examining you?

Thanks, Peter. That might be worth checking out a sports physio somewhere. I haven't tried that yet. From what you've said about the pain clinic and what they teach you, that sounds like what they tried to review at the back rehab program I did (which wasn't very good) and the musculoskeletal doctor I saw last year for some time was really into explaining all of that. I have always done a lot in terms of relaxation techniques and yoga to not dwell on things at least and to calm down, although I guess I need to start working more on the acceptance bit! At least I can still exercise and have been able to for most of the time, even if it is doing it through the pain. I know what you mean about the struggle with doctors though, it has been a very difficult time! I even had one doctor tap me on the head and say, 'you need to work on this'. Needless to say, I didn't stick around there for long :S Thanks for the link to that course - I will check it out!

Thanks for the note, John. I agree, I don't think that most musculoskeletal docs do real acupuncture, although the doctor I had been seeing was actually trained in acupuncture, which does seem more unusual. He normally used intradermal needles and then used some traditional (?) needles on a few points. It was another one of those things that gave very slight relief for a very brief time, but that was about it!

I did forget to mention in my initial post that I've also had every blood test that they would possibly want to run to check for anything! All of those came back clear. My grandma has ankylosing spondylitis so that was a bit of a concern, but I don't have the genetic marker for it or anything really indicative of it (granted, not testing positive for it doesn't totally rule out AS). Thanks again for the replies - it really did make me feel a bit better knowing that other people are going through the same thing and can understand what it's like!

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5 years 5 months ago #22781 by jo.m
Replied by jo.m on topic At my wits' end
Hi Wernie

I have sent you a private message

Jo :)

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie

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