Hi everyone, I don’t think I’ve posted in here for quite a while, so I apologise. I hope everyone is as well as possible.
So I had a pain clinic appointment today and left in tears.. They are no longer doing the lumbar and facet injections (which is the only thing that’s helped ease my pain) I’m currently taking Oramorph, Gabapentin, Tramadol, Duloexitine, I have mezolar pain patches too. And every day is a battle from start to finish which chronic pain!! I need help getting out and about, up and down off the sofa, getting dressed, showering, etc etc. I’m a 32 year old single parent to 2 children and just don’t know what I’m going to do???! I’m at my wits end and seriously don’t know how much more I can cope with. I have no family around me, and although I have a small, close circle of friends they have lives of their own. I have carers come in 3 times a week but the rest of time I’m left to struggle 😢
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Lynzhoppy1
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I’ve done the pain management course, physio and hydrotherapy to. Oh, plus a weight management programme.
He said he wants to see me again in a few month to discuss my medication and talk about reducing the opioids. Which I totally understand, however I’m only just getting through the day with them. The thought of them taking the opioids away worries me slightly as I think ‘well how am I going to cope without them?’ X
What did they teach you on the pain management course?
It isn't always about lack of funding for these procedures. In many places there just isn't enough theatre space.. Waiting times spiral out of control so consultants have to stop doing them. Hard I know
Breathing techniques, mindfulness, stretches etc to do, it was helpful. I just don’t see what I’ll gain by doing it again?
The waiting times between pain clinic appointments can be up to 18months, I know they are really stretched. It’s just frustrating being told they’ve taken away the only thing that currently helps ease the pain to a comfortable level x
Yes I did, and I often read through the file just to remind myself.
No I don’t think you are preaching and I appreciate your help 😊
I love my children and they are a massive support, but yes they are very demanding!
I love swimming however the consultant said to lay off it for now? I’m not convinced and think I should try going again. I use a TENS machine quite frequently and it does help distract me from the pain. X
Hi Bananas. Cannot recommend acupuncture highly enough. After each treatment, my pain is at a level with which I can cope. Of course, the effect wears off but, with patience, compounds in the body. Am not saying its a magic bullet but a useful adjunct tool.
Re heat pads. Gleefully bought the stick on kind, felt no heat whatsoever, but one hour after the pain hit like a missile. Never happened before, so reckon the “heat” must have inflamed further any existing inflammation. Just don’t know but would recomnend caution with stick on pads. No harm in a hottie, though!
You are too young to have this kind of pain. I especially empathize with you because you are a single mom with a small child. I am 61 with slipped disks in my back and neck. I get the lumbar shots of cortisone. Recently my pain management Dr gave me radio frequency (RF) which is lidocaine and nerve burning. The first time I got RF, it didn't work, but the second time it worked well. Have you considered changing PM doctors? I live in US and I have Medicare so I can switch docs easily. Don't know where you are. I will pray for you young lady. It's a long road to hoe. Back issues that is. Keep your chin up!
Hi, I’ve never heard of radio frequency, I’ll ask my GP about it. I could go to another hospital pain clinic but I just wander if they’ll say the same (about the funding being stopped for the injections) I live in the UK.
Thank you, I really am trying. It’s just really hard x
I'm in the UK and have been having radio frequency injections for a couple of years now from my pain specialist. Ask the pain clinic directly for RF. I know what it's like being young and suffering with back pain/problems and having kids and being a single parent. There's no age limit for back problems I was born with malformation of the spine but it wasn't picked up til I was 28 yrs old when they took a disc out and fused the spine, they told me it would be good for 10-15 yrs that was 32 yrs ago and it's still holding up! Sadly they found arthritis in the spine and that has spread to other joints. I hope they give you RF injections, I've found they work for me except for one time. Good luck x
Hi, thank you for the advice! I will definitely be asking about RF injections. I’ve suffered with my back for 11 years now and it’s gotten progressively worse as time has gone on, initially they told me it was SPD and sciatica from being pregnant and with physio it would go. I had a scan over two years ago where they picked up two different conditions in my spine and pelvis! I’ve got another MRI scan next Saturday and The pain consultant I saw Friday said it’s likely it will now pick up arthritis to (I already have it in my joints) he also said it’s likely I’ll be referred to the surgeons. So I guess I’m just going to have to wait and see what happens. I will wait until I’ve had the MRI and ask about the RF injections. It’s great that you’re procedure has lasted so well! Xx
Is ludocaine rafio frequency? Just thought it was sn analgesic substance for infusion. Nerve burning sounds scary, is it? And is it usual with the lidocaine infusion? Sorry to sound so ignorant, but due to have one next week and the doc is totally uncommunicative and non-committal. Can’t change docs now much as would like to. He came highly recommended and doubtless he will do a good job , but I wish he’d be more honest with me.
In my life I've learned to be resourceful. I may hear 100 no's, but there is someone who will care and say yes. These docs are overloaded. Don't be afraid to stand up for yourself.
I believe the doctors care and I appreciate everything they do. It must be frustrating for them having to tell us we can’t have what we need, however I don’t believe it’s as frustrating for us having to hear that! I tried to fight my case today but got nowhere x
Sorry to hear about this. I'm in a similar situation and am waiting to hear if the injections I was having every 3 months wil still be funded. I've gone 2 months without anything & its ok, but the pain is creeping back. It seems to be a sign of the times that NHS funding just gets pulled.
It does get easier as the kids get older - maybe not the teenager bit but at least they get more independent as they get bigger.
I can certainly relate. My pain control Dr. retired and I was referred to a new physician who was very rude and thought that due to my young age of 56 , lol , that I should be weaned off my opioids. I panicked of course . I have reached a point where they provide little relief . I’m in misery every day just getting out of bed and doing my daily self care like bathing, much less living anything like a normal life is almost impossible. Today I had facet joint injections and had immediate relief. Obviously that is no longer an option for you but here in the states , we have a treatment called Radiofrequency Rhizotomy if the facet joint injections are successful. It is a much longer and sometimes permanent fix for the pain relieved by facet joint injections. Is this a possible option for you ?
I’m so glad the facet injections have helped you 😊 they provided great relief for me to, which is why I’m so frustrated they have been stopped. I will certainly ask about the rafiogrequency treatment, thank you for the tip! X
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