Back Pain

[ditchdwellers]

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 

[Fiz]

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 

[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.

[ditchdwellers]

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  .  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 


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.

[ditchdwellers]

There's another approach I use that I was taught on a pain management programme when first diagnosed with EDS. It was referred to as the Traffic Light Method.
Using this method involves breaking down each activity or task you want to accomplish into it's constituent elements. Red indicates that you are are completely unable to complete the task without significant risk to yourself and need assistance, Amber would mean that you can undertake the task with plenty of planning and breaks plus some assistance may be required, and green means you carry out the task with any issues.


Let's use going grocery shopping as an example (I'll answer from my own perspective) :
1. Get dressed in the morning. Amber task.
2. Morning ablutions. Amber task.
3. Writing shopping list. Amber task.
4. Putting on shoes and socks. Red task.
5. Loading wheelchair into car. Red task.
6. Driving to shop. Red task.
7. Putting shopping in trolley and bagging up at checkout. Red task.
8. Unloading shopping at home. Red task.
9. Putting shopping away. Red task.


I apply this to lots of things I do, particularly things I need to plan for such as going away on holiday. It helps me work out what I can do if I pace myself and what I need my husband and PA to do for me or help me with. Everything from gardening projects to sorting out piles of paperwork!

[Sunny Clouds]

Personally, I think I'd find that system difficult because I'd be engaging in pedantry over categories, whereas I'd adapt the percentage thing to a rough heirarchy or approximate amounts.

That being said, I have tried in the past categorising tasks into sorts of activity, because I find it easier to do things if I alternate activities, and I find it easier to get stuff done if I feel I've done it to get out of doing something else.  Tricking myself and seeing the humour of doing it which doesn't stop it working.

But I think I could tweak my categories.  Maybe 'need help' could also get seen, for me, as 'something I'll put off if I don't adjust' or something.  I don't want 'need help' as a category, because something I've been in crisis over for a long time is not getting help, having to find the courage to do things myself.

I find myself wondering whether my 'alternate the activities' approach, i.e. alternating a bit of housework, a bit of paperwork, a phone call, a bit of housework etc.  (or different alternations) which for me is primarily about helping me cope with mental stuff would adapt for other sorts of problem.  E.g. for limited physical pain thresholds, alternate physical and non-physical.

Ooh, I love stuff like this that gets me to play around with approaches to coping. Personally, I find that even if something doesn't work for me, just trying it helps in the sense of giving me a sense I haven't given up, and emotional effort is my biggest problem now.  I'm trying to find the word.  A term used for limited personal resources or capacity.

[Fiz]

(((DD))) fentanyl patches out trump Buprenophine any day of the week so you're already on very strong analgesics. I'm sorry that despite that your pain is so difficult to cope with 


Fentanyl can cause fatigue and also reduce cortisol. Might be worth requesting an early morning cortisol levels blood test? Needs to be as close to 8am as possible which is a pain and must be no later than 9am. If your cortisol levels are low that can be treated which if they were low and you were treated for it that would lessen the fatigue. It's worth a blood test maybe. Just a thought.


I think your pain management routine sounds well thought out and like it is the best method for you.

[lankou]

Have you tried a TENS machine?

[ditchdwellers]

Sunny - I love the way you thought about my pain management techniques and considered how to adapt them for your own needs!
Us Ouchers are nothing if not resourceful  .


Fiz- please don't think I was playing pain Top Trumps; that really wasn't my intention and I didn't mean it to come across this way. Pain is pain and so subjective. Plus one person's tolerance and the rate at which they metabolise meds is very different from another person's. 
I had no idea that fentanyl affected cortisol levels and I will definitely ask about getting tested! Genius suggestion. I'm always looking at ways to reduce my fatigue and this may well help.


Lankou- brilliant idea about the TENS! I had completely forgotten about them. I tried one out about 30 years ago when I first started getting pain issues, but the problem was this was before diagnosis and treatment and I was trying to use it on too many joints for it to be effective.
Now I just need to focus on my lower back and no doubt the machines have improved since then!
Do you use one yourself? Can you recommend one?


Thanks my lovely friends for all your contributions and suggestions. It means a lot to me.

[lankou]

Lankou- brilliant idea about the TENS! I had completely forgotten about them. I tried one out about 30 years ago when I first started getting pain issues, but the problem was this was before diagnosis and treatment and I was trying to use it on too many joints for it to be effective.
Now I just need to focus on my lower back and no doubt the machines have improved since then!
Do you use one yourself? Can you recommend one?


Thanks my lovely friends for all your contributions and suggestions. It means a lot to me.

I use a TENS often as it a better option than taking class A prescription pain killers. A TENS has always worked for me as I turn the power up until my eyes water, (which goes away before the 20 minutes are up.)

[Fiz]

DD, I definitely wasn't suggesting your pain out trump's mine or anything like it. Just saying fentanyl out trump's Buprenophine strength wise. Sorry if that was misconstrued. I probably don't phrase things well.


Tens does absolutely nothing for me unfortunately and I'd spent a fair amount of money on a machine. Shame you can't try before you buy!


A couple of times that I successfully lessened the emotional impact of pain, once when I was acknowledging the agony I switched my mind to what 3 things could I hear, see, smell etc and that worked a bit and the other time I chose to focus on and explore the pain. Where could I feel the pain, did it spread anywhere else, was it sharp, dull, achey or piercing, how was it making my body feel etc on both those occasions I managed to relax a bit by deflecting away from the suffering that can tag along with pain. But I have tried those methods on occasion since then with no success so I am unsure whether the pain has been different or whether they were just individual days when I could focus well. But possibly worth a go.

[ally]

I was in Agony yesterday, could hardly shuffle around.  This morning, I realised that my spinal cord stimulator had switched itself off.  I really couldn’t be without it now.  I going to suffer today, until the spikes in my pain levels even out again.  My friends internal battery packed in a couple of months ago.  Due to the impact of covid, he can’t have a replacement battery op, As it’s none urgent.  Meanwhile he’s going downhill.


In all, I’ve had seven interventions for prolapsed discs.  I’m on the waiting list for another one, but, same as above,  I’m lingering in the system.  If anyone on here can’t tolerate restricted meds for any reason, I find lidocaine patches help. They’re expensive, and, not all surgeries will prescribe them.  However, It might be worth asking if your surgery will prescribe them.  Back pain is the pits, so, to anyone suffering, have a hug from me 

[ditchdwellers]

Ally that's truly awful! You poor thing 
I hate the way pain is such low priority on the NHS. Just think how many days of working productivity are lost due to people being unable to work because they cannot access treatment for their chronic pain needs? Not to mention the human suffering involved! It makes me angry. Mind you, there's so much about how the NHS is run that angers me.


Please send my best wishes to your friend. I can't begin to imagine what they are experiencing.