Pain Management Clinic

Ray212

Really dissapointed with pain management. My story goes back a few years so I will be missing a fair bit out and its a bit pointless but after waiting a year to see pain managment about my back the overall experience was underwhelming.

My back problem is one where pain will start in the base of my spine as I walk or move or mainly when standing slightly bent like when you do the washing up. The pain will just keep ramping up until I have to stop or sit down, where it will dissapate after a while.

When walking it will start after a few meters. I tried washing the car the other day and managed to wash just the bonnet before I had to stop.

Anyway so initially I saw a pain management physchologist who I spoke to about pain, did a couple of tests and she said I would beneft from seeing a speciliast physio.

Great I thought, getting somewhere. So the physio was nice, friendly but wasn't too keen on running any more scans. Said they could see from my last scan there was a bit of swelling around a disc and osteo whatever it is but thats quite normal.

So I said well where is the pain coming from. Anyway after 7 sessions after basically just talking about keeping a steps diary he established my pain must be coming from a injury I had almost 30 years ago and while the physical injury has gone my brain is still remembering the pain and sending the pain signals.

I just couldn't believe it, after a year wait and multiple sessions I am being told my brain is interrupting signals from my back as pain signals. And worst part is, there is nothing they can do.

I am beside myself at this point, I didn't have this pain 10 years ago but now all of a sudden my brain is getting pain signals. Something doesn't add up and the whole thing just felt lazy.

So I am in near constant pain when moving and being told nothing they can do and pain killers won't do much so what I am supposed to do, just spend my life in constant pain?

They said maybe weight management could help. But was also told that even if I lost weight it would make little to no different to the pain. Right so yeah thanks.

So after 6 months waiting for weight management I have been discharged from pain manangement as they "Hadn't heard from me for 6 months". Yeah that would be because I am stuck on a year long weight management waiting list.

So now to go back to pain management which they told me to do after weight management I need to be referred again.

And then I expect I will be back to being told about phantom pain signals.

Overall it wasn't the experience I was expecting

Jimm_Alumni

Hey @Ray212, I can feel the disappointment and frustration. I mean, I am feeling it myself after reading all that. 

I'm honestly getting more and more disappointed with our (me and my partners) own experiences too, she has been on a waitlist for a waitlist to get some therapy. 

Have the clinic suggested no alternatives at all to help? There's no possible therapy, medication or physical?

Ray212

Hi,

No nothing which is bizarre to be honest. I mean the idea of pain management if they can't fix or help with the problem is to help/teach you to live with the pain but I haven't received any of that, just a "not much we can do, but come back at a later date anyway"

I asked about a new scan as my last scan was 2018, they said as the pain is in the same place its unlikely to be any different from the previous scan. But the pain is a lot worse than when I had that scan done, back then I could actually wash the car, slowly I will admit but I could get around it, now I can't even do one panel.

I was never expecting miracles but to come out no better than when I went in just seems a bit nuts. Any medication won't act quick enough as the pain disperses from instantly to 10 minutes or so when I stop or sit down and they don't want to give opiod medication because of the long term affect.

So right now I have not made a complaint but said to my GP quite strongly that its incredible people are just left like that with on reasonable therapy or help or anything else. There advice was to come and see them in March and get referred back to ------- pain management!

Jimm_Alumni

Opioids are a lot to be taking long-term, there is quite a bit of danger with them give their addictive qualities. I assume over the counter painkillers don't touch it at all given the nature of it, plus long-term use of those isn't desirable either.

I'm not sure what a complaint could achieve, but there has to be other options available than just weight management/waiting longer?

chiarieds

Hi @Ray212 - I hope you take my comments in the way intended, that I hope you find them helpful. Whilst to a certain extent I agree with Jimm, opioids have been found to be mainly ineffective for chronic pain, i.e. that which lasts for longer than 3 months.

Understanding about persisting pain has also changed over the years, as has understanding about many disorders. As we age having some degenerative changes in our spine, such as those you mention, is also completely normal; the strange thing is that some people seem to experience no pain at all despite such degenerative changes, whilst others do. Having been interested in looking at chronic pain for some time, I'd also say that what your physio has said does actually make a lot of sense.

Please don't get me wrong, your pain is real, but our brains can remember previous pain from when it initially tries to protect your body. However, sometimes later, altho any prior tissue damage may have healed, & this protection is no longer needed, our brains remember past pain, & respond by sending out pain signals that we don't need (nor want!)

I'd disagree that losing weight if you are a tad overweight won't help in the one sense, as being a healthy weight reduces stress on your joints, & eating a healthy diet has so many other health benefits anyway.

You might find some of the things in this link worth exploring, bearing in mind everyone is different, & often it's a combination of different modalities that seem the most effective: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

As to how your brain can interpret those pain signals, which are real, here's a somewhat light-hearted video, which nonetheless simply explains this serious concept by a neuroscientist:

 https://youtu.be/gwd-wLdIHjs?si=lRltu5QFXmbCAJib

Ray212

Funnily enough the physio gave me the exact same link

chiarieds

Well us physios must think alike, tho I'm a long-retired one!

I also suffer from chronic pain, which is why this matters to me. Do have a look through the link above too, & hope some of that may help.

Ray212

Many thanks, I will do

Jimm_Alumni

I defer entirely to @chiarieds on this one physio certainly isn't something I've personally experienced so I admit my knowledge on it is not great. I was hoping through chatting together we might've thought of something! 

I'll give that video a watch too, I do like learning about new things.

chiarieds

Hopefully we have come up with something @Jimm_Scope - in the link above the video are some resources for people to explore if they have chronic/persisting pain, which I hope you may also look through.

The 'Ten footsteps' programme was put together by Drs experienced in patients with pain, clinical psychologists & pain management physiotherapists, to which experiences of those living with chronic pain have been added.

Please could you remove my last sentence which says, 'Please note: an email address and name is required to sign up to the Ten Footsteps approach, however you can use initials' as you no longer need to register or sign up to access this, thank you.

Ray212

I think sometimes it makes it difficult when trying to "live" with pain as because the pain is real you are looking for a physical problem like when you cut yourself or break a leg or something.

For me the pain is so excrutiating I just can't carry on and have to stop what I am doing. Having had several operations the last few years my back pain has topped them all. However I think what bothered me most was I asked about a scan as I feel the pain is worse than it was and was told that I had already had a scan and they were doing their diagnosis from my symptoms and that scan. However that scan was from 2017! A lot can happen in that time surely.

Excerise and losing weight is a real challenge for me, the fact I can walk about 100 meters doesn't help but worse still I am with the EDS service. Its not quite as easy for me to eat less etc at the moment so not moving as much, not eating great, my weight is just going one way and it gets worse per day which is why in desperation I started the path to pain managment some 4 years ago now and I am no further ahead than I was then.

I found the video very good, I have watched it again a few times. This pain hasn't gone anywhere in 9 years, thats when I started getting the back pain, took 4 years to get to pain management and apart from a video and being told the pain is "likely" to be my brain interrupting something that isn't there, I don't feel any further ahead.

I think you feel sometimes at this stage you are just thrown on the scrap heap with a message attached saying "Nothing more we can do".

I am going to have a read through the links you gave chiarieds and hopefully be able to take something away from that.

sunnydays

Hi, I wonder if anyone could offer some advise, please. Im under pain management, I have lumbar Spondylosis and have had several injections and my last was Denervation. Now, I'm on a kind of mindfulness approach by pain management. I can't get my head around it and how it's suppose to help the pain and my restricted lifestyle.

Any advice would be great appreciated. Thank you

Ray212

Well it's a good question. I am still with pain management, the appointments are ridiculously far apart. Talking almost a year.

The whole idea is that you learn to do things "with the pain". By doing some things in a different way or realising that nothing they can do will return you to being pain free.

It feels like they are saying, well we have done what we can and I'm sorry you still have pain but just get on with it while we deal with the next patient.

I am sure its not like that but it sure feels like that!

I am going back to pain management soon, my appointment was last year but was cancelled, then Jan, cancelled, Feb, you get the idea.

Have you had a look at the link chiarieds posted above?

Santosha12

@Ray212 Hi, I can't give advice re pain management sorry except to say my mum was prescribed a very low dose Bupranorphrine patch long term, worked a treat for her for the most part. I had to help challenge her GP for this, of course care needs to be taken with opoids but there's still too often a prevailing view that the risks outweigh the benefits - that was not the case for my mum whose dose did not need increasing and it improved her quality of life.

I would insist on a scan.

Different scenario but I was discharged from my bowel consultant in March 2023 he stated you've got IBS and you just have to learn to live with it. I requested a second opinion, fast forward to April 2024, referred to leading Teaching Hospital and underwent different tests under the Nuclear Medicine Dept which showed 3 other problems/diagnoses. Still don't know if they're fixable, looks like they're not so far.

To add insult to injury received a letter last week asking if I want to be removed from consultants' list as it's very long/reply within 14 days, 🙄 I'd received the letter 2 weeks after written so just in time to stay on it but do not know yet if it was sent because there's nothing that can be done.

I do hope you get help to improve your situation.

FeistyPigeon

https://forum.scope.org.uk/discussion/115143/pain-management-clinic

Hi Ray, so sorry, you sound as though you've been through the mill. I get the impression now a lot of places in the NHS are only too keen to fob you off if they can, especially if you're older + not likely to be productive economically. I suspect cost savings are at the root of some of it, lack of training and time pressures as well. I know well the number of fruitless consultations and wringing of hands…

I won't add too much to the discussion now (feeling a bit rough) but I've had a lot of back pain myself and found this book very helpful (I got a 2nd hand copy for a few £): "Back Sufferers' Bible" by Sarah Keys. It goes a lot into the physiology and why you get back pain, and gives you exercises to improve things. If nothing else it'll give you a lot of understanding so you can hopefully argue more effectively with the practitioners. There are others out there (you could take a look on Amazon). Best wishes, hope it improves x