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Back Pain

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I've had neck and spinal pain for some years now and it has been getting worse over the last few years.
For a bit of background I have Ehlers Danlos Syndrome (EDS) and Psoriatic Arthritis (PsA) which have both contributed to the rate of deterioration and symptoms.

About ten years ago I was diagnosed with cervical joint issues causing nerve impingement however surgery can be problematic with EDS so the symptoms aren't yet severe and I can manage them. At the same time degenerative disc disease was also diagnosed.

Since then I have started to get a lot of SI pain and lumbar pain. My rheumatologist has been injecting steroids into my SI joints to calm the inflammation but the effects only last for six weeks or so. It does nothing for the lumbar pain. The last MRI I had was about 18 months ago and it showed that I have a few lumbar haemangiomas. I think it's these that are currently causing the excruciating lower back pain I'm currently feeling. At my most recent rheumatology appointment about ten days ago I said how much I'm struggling and I'm getting a referral to a spinal team at a different hospital who are supposed to be very good. I really hope they are and I hope my appointment isn't too far away as I'm barely able to stand long enough to brush my teeth before my back gives out.

Anyone got any back pain stories they would like to share or gentle exercise ideas?
Bear in mind I can't get on the floor or kneel without my kneecaps getting funny ideas  :f_laugh:

Have you tried Buprenorphine patches? Prior to my AI I used to wear 30mcg patches (20+10) and they were pretty effective as pain relief for me. Definitely worth a go if you've not tried them I would say. I miss them! It's unusual for Buprenorphine to cause AI and I suspect the AI was caused by the morphine and tramadol that I regularly took prior to my tumour removal but it wasn't picked up until I was off the oral drugs. I do now have Buprenorphine patches prescribed again but as I haven't been mentally well enough to be able to go anywhere or do anything, haven't been using them recently but hopefully that will change.

You have my empathy  :f_hug:

Sunny Clouds:
I've had arthritis for 40 years and it used to drive me potty.  Then one day, I turned the usual advice back to front.  I'm not saying that what works for me would be best for anyone, but I do say it's worth exploring seemingly daft options.

I used to take oodles of painkillers.  I also tried again and again to ignore the pain, but to no avail.  In the days when I was fit, if the pain was really getting to me, I would go for a run, even in the night, to trigger the brain's natural painkillers.  I've tried to do that in other ways, too.

Then one day I tried something different, initially by accident.  If a bit of me hurts and I notice it, I've got two overlapping strategies, but both revolve around focussing on whichever bit of me hurts.

The first is that with bits of me that regularly hurt, I've attached a silly memory to each one.  Humour helps me.

The second is that if I'm distracted suddenly by pain, I use what I think of as my fire alarm technique.  Imagine you're somewhere with fire alarms and they go off.  You instinctively react. You look up at the clock.  If it's not the usual fire drill time, you take action.  If is the usual fire drill time, you carry on with what you're doing.  How loud or annoying that alarm seems will depend on your  mood not on the actual alarm, unless it changes, when you're back to first reaction.

So if I have pain that's distracting me, I do a quick inventory.  What's hurting and why?  If there's no new pain, my subconscious heaves a sigh of relief and I can get on with what I'm doing, the pain suddenly being largely unintrusive.  If there's a new pain or a different pain, I take action.

I rarely take painkillers.

I'm not saying pain doesn't bother me, just that this system works for me for most sorts of pain I get.

That being said, I've also had surgery on one joint, but it was a bit of a mess and needed the cartilage tidying up.

Fiz, I've been on fentanyl patches for about 15 years due to regular dislocations and inflammation pain. Patches are brilliant aren't they at levelling out the pain? I'm pleased they worked so well for you.
Unfortunately I got psoriatic arthritis on top of the EDS and osteoarthritis so my pain levels have escalated. Now the haemangiomas! I'm now no longer able to take NSAIDS due to having stomach ulcers which is annoying as they helped quite a bit.
Sorry, this sounds like a right whinge  :f_blush: .  It wasn't meant to.

Sunny, I have many tools in my pain management tool kit which all help reduce the pain levels. I work on the percentage theory. For example:
1. Meds reduce my pain by 75%
2. A hot bath reduces pain by a further 5%
3. Distraction a further 5%
4. Applying heat/ice to painful area 5%
5. Sitting in the garden/getting fresh air 5%

Any combination of these can work in helping me cope on a daily basis, but I do need my baseline pain meds to get me through the day. I also know that my fatigue levels influence my pain levels which I find very difficult to manage. One of the features of both EDS and PsA is chronic fatigue; throw in fibromyalgia and narcolepsy that sometimes it feels that I've got it coming at me from all directions  :f_laugh:

One day I'll get the hang of juggling all these things!

Sunny Clouds:
DD - I like the idea of your percentage approach.  I hadn't come across that or similar before.  Whilst the techniques I use mostly work for the pain I currently have, that extra system is now tucked away in my armoury for future pain.

I wonder what else it would work for. 

Hang on, was this thread supposed to be you helping all us?  Oh well, whether it was or not, that's what it seems to have turned into!  Lovely DD, in pain, but still offering ideas that will help others.


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