Any ideas please?

[J_J_758]

Good afternoon everyone!

I’ve tried to manage Chronic pain for 18yrs, I’ve sparred with my GP’S regarding opioids and been referred to the pain management team who. Immediately treated my RLS with pregablin morning and night and for the most part it’s v successful.

My right leg/foot was crushed and rebuilt I then broke my left leg in 2021. My mobility and balance have been significantly compromised but I still hobble along as best I can with the aid of a hiking stick! From 12pm -8pm I am really struggling with a lot of pain and swelling different to my RLS symptoms.

I’ve been strong armed into reducing my tramadol (200mg to 50mg) by 10% each WEEK which I am just at the end of and I’m feeling awful 🤯🤢😩

Any ideas???

FYI I’m allergic to NSAID pain relief

Please help 💛

[OSTEOARTHRITISRA]

Not sure if will help Depending on dose of pregablin

After seeing a good pain nurse she said to me a out halting

Tramadol altogether and

Increase your pregablin to 600mg and a sleep med increase the same time

I queried it bit no she said I'd be fine with withdrawal I said ok so she contacted doc and doc agreed

Seemingly it's a way to stop withdrawal

Everyone different though

This is wot they done with me

P.s I do get low dose fentynal as well

[J_J_758 in reply to OSTEOARTHRITISRA]

Thank you for such a quick reply. I’m only allowed 150mg pregablin and they are only prescribing in 2 week’s prescription 🙄never happened before with any other medication. The pain that the tramadol effectively managed especially in my right leg has re-emerged especially in the right foot and above the knee where both bones were broke I’m exasperated! It’s a long afternoon and evening to be sat in pain everyday!

I appreciate you sharing your experience with me 💛

[OSTEOARTHRITISRA in reply to J_J_758]

I some surgerys go over top if your long term your meds should be monthly or 2 monthlyNot sure if your allowed

As your surgery seem a bit strict with meds maybe ours done a sweep on the repeats because of the addicts

But my gp over write mines to 2cmonths saying I'm fine

P.s not sure if your gp maybe

Give you

Tramadol increase along side your pregabalin

And if you can take

Naproxen along side as well as your in a lot of pain

[J_J_758 in reply to OSTEOARTHRITISRA]

I’ll have to call them on Monday, I’m allergic to naproxen unfortunately.

Thanks for the advice 💛

[trishj46 in reply to OSTEOARTHRITISRA]

PLEASE BE AWARE OF NSAID____I HAD GREAT RELIEF TILL I FOUND THEY WERE

TOXIC TO MY KIDNEYS___NOW HAVE KIDNEY DISEASE STAGE #3.

[OSTEOARTHRITISRA in reply to trishj46]

I've been on Naproxen for 6 years now

Do ha e a long reiview with doc this week

Will mention the lenth of time maybe see if anything else or inflammatory

[OSTEOARTHRITISRA in reply to trishj46]

Sorry to hear about your kidney disease Wishing you well

[trishj46 in reply to OSTEOARTHRITISRA]

I know it is very hard to find anything anti-inflammatory without it being NSAID.

It was very hard to stop it, please its not worth it, but it is between you & your doctor.

But my doctor knew I was on it-----took 3 years .

[trishj46 in reply to OSTEOARTHRITISRA]

Thank you! HUGS!!!!

[Bevvy]

I have long term nerve pain due to Cauda Equina syndrome. Don’t know if it could help in your situation but I take duloxetine for pain. I also take 50mg Tramadol at night which aids my sleep and doctors are fine with that. I can take additional Tramadol for excessive breakthrough pain but on the whole duloxetine makes things manageable.

[J_J_758 in reply to Bevvy]

Thank you, I will look into that I’ve no knowledge of Duloxetine. I’ve got till Monday when the surgery opens again to read up about it,

[studebaker in reply to Bevvy]

I also take Duloxetin 60mg for pain, which works for me. I also have Hydromorphone slow release and Hydromorphone 1mg breakthrough, which I need very rarely since I started Duloxetin.

My life is so much better with present treatment.

[J_J_758 in reply to studebaker]

Thanks for the reply I’m reading up on Duloxetine as we speak! Unfortunately where I am it’s a battle every time for effective pain relief I think the GP must be under tremendous pressure not to prescribe medication like Hydromorphone. It’s exasperating at times.

[kev60]

hi, I too suffer with pain 24/7 it’s been 7 years now and they call a few of them medically unexplained. I have tried different pain medication and have found Buprenorphine patches helpful started on 5mcg and worked up to what suited me 35mcg was a bit much and made me sick so 30mcg works for me and paracetamol and codeine for emergency. It just takes the edge off otherwise I am bed bound. Hop you find what works for you. Kevin

[J_J_758 in reply to kev60]

Thank you kev for all that info.

I’ve only agreed to reducing my tramadol because the consultant at the pain clinic said he did not rate Tramadol as a good painkiller (seretonin receptors I was lost by then) I’ve persevered with this for 4weeks and the pain in my right leg (both bones broken above right knee and also below ) have raged especially from noon till 8pm. I’ve heard a lot about these patches and their long lasting effects I hate my days being consumed popping pills every 4hrs. I will suggest these on Monday but I do not hold out most hope. There has been a clamp down on prescribing but I will ask.

Thanks again and have a lovely day 💛

[Milkybar]

Hi JJ,

So sorry to hear you're going through so much. I think you have done amazingly well with such a quick reduction! Withdrawals will definitely get less each day & do ask them for meds to help you with that such as a week of sleep medication or buscapan for stomach cramps. I think they have definitely clamped down even more. I like you can't take any NSAIDS. I have spinal stenosis, disc bulge & tons of damage in my back also my knee. I was put on Pregabalin in 2020 600mg & 400mg of Tramadol. The pregabalin helped the sciatica. I reduced it myself slowly to 150mg. The pain specialist doesn't understand the level of pain or how this affects our quality of life, mental health as a result. I tried Duloxetine plus many other medications. Unfortunately Tramadol cause insomnia for me & only manage my pain if I don't try to do anything. They now want me to swap to a Buprenorphine patch. I was an opiate drugs worker before this changed my life. I am also being reduced on Tramadol. The pharmacist took 350mg a week without my or my GP giving the go ahead. I am sick of them talking about addiction as my condition isn't curable. To be honest the pregabalin were far more difficult for me. I know someone who was in a motorbike accident. He's waiting for surgery & is on Zomorph slow release. I asked for those but no luck they're concern is valid as we quickly adapt to pain meds so need it increasing over time. To me I'd rather deal with that & reduce the pain so I can have a better quality of life. I know letters have gone out from public health England due to a handful of Oramorph overdose deaths. I really don't want to go on buprenorphine patches. I said to the pain specialist they aren't as good a pain reliever as Tramadol & he said he knew but that's the option or Cortisol injections. If your pain is predominantly nerve pain ask for a 2nd opinion maybe increase those with codeine for breakthrough pain. Try your local patient liaison service but don't give up trying. I apologise my reply is lengthy. It's so draining fighting for adequate pain relief & deal with so much pain. The patches may well definitely be better than nothing it really is trial & error to find what works for you. I wish you luck & know that you're not alone. My hope is that people like us will stop being treated like drug seekers & be given the help we desperately need! 🙏

[J_J_758 in reply to Milkybar]

Thank you, I feel from your message that you ‘get’ how I’m feeling and what I’m trying to say.

I will be contacting them tomorrow but don’t hold out much hope !

Hope you have a lovely day 💛

[Imagine1]

Hi, I am so sorry that you are in so much pain, I feel for you. I was given Tramadol a few years back and I only took one tablet and I had a huge allergic reaction to it, An emergency ambulance came out because I couldn't breathe and I thought I was dying, they had to resuscitate me. It turns out that I am now allergic to all opiods and opiates. I have to tell all doctors and every time I need an operation I can't have any painkillers only paracetamol which are rubbish. I know that you have to take an anti sickness drug before taking Tramadol otherwise people are very sick. My husband was described it and he wasn't given the anti sickness drug and it made him very sick, so he won't be having that again. I personally as you can imagine don't like Tramadol or any opiate. I can't give you any advice but this is what happened to me and my husband.

[J_J_758 in reply to Imagine1]

Thank you for your reply and sharing your experience with me. 5am here so starting my daily trudge 🙄hope you have a good one what ever you’re up to 💛

[Dancer2021]

Hi, I am also allergic to Nsaids but doc prescribed dihidrocodeine and it helped me last night 🤞.

If thar fails he also said I could try pain patches - none of which I have been offered before.

It just gave me a glint of hope.

Good luck!

[J_J_758]

Thank you I will mention them 💛

[OSTEOARTHRITISRA in reply to J_J_758]

I'm also on dehydracodine with Paracetamol Hopefully you can find the right meds and doc can find a solution for you