Hey, newbie here with a whole wirlwind hoping someone can advise me on.

[rarebraindisease28]

Hey, im new to this site, from South Wales.

i currently have an arteriovenus malformation (AVM) in my brain, degenerative disc disease since i was 16 for almost 12 years. i have rhumatoid arthritis along with psoriatic arthritis, ive got a whole host of other issues too.

The GP prescribed Morphgesic (Basically same as MST) im now up to 60mg morning and night with 600ml of oramorph for breakthrough pain which i use up a month, im on gapabentin 600mg 3 times daily along with baclofen 3 times daily.

this has messed my life up. teenage years los and im now approaching my 28th birthday with a life noone wants to live.

i tried to explain to the gp i cant live like this and i need something else. he wont prescribe me anything different, ive asked to come off the morphine but he said not allowed to. hes re-reffered me back to pain management but all they did the last time i saw them was write down a whole list of my life and sent me home with no intervention..

im litterally at the end of my teather and life almost and i was wondering if there is any advice you lovelies can give to help me try and find the light at the end of the tunnel. thankyou x

[Jjflash]

Gd evenin rarebraindisease,yet another person on here who is going thru so much stress.Poor thing and you're so young.Some of her meds I've not heard of but I like yu think your dosages are extremely high.I don't know about your doctor's surgery but is there not another gp there who can evaluate your meds thru fresh eyes.It sounds like yu should keep going with your meds tho till yu get a different assessment.Have yu got a walk in centre close by who yu could chat about your concerns going forward.Dont know if yu think changing GPS is too extreme as they mite see things the same way.Yu could try talking to the main person at yer pharmacy for a different opinion.Another option is going over your dilemma with staff at the NHS website.I hope yu get some peace of mind and a more agreeable solution.Fingers crossed for you.Best of luck and welcome to another newbie.

[Moonshine15]

Hi another 🏴󠁧󠁢󠁷󠁬󠁳󠁿 Here, I’m so sorry you are going through all this at such a young age.

the first thing you need to remember is that you are in charge of your own care and treatment, I can understand why you don’t want to take such a large cocktail of meds, but please don’t just stop them you need to come off them gradually when you do under medical supervision.

I’ve also attended pain clinic and not gained any benefit, if I were you I would go to a different GP or change surgery.

I don’t know your financial circumstances but could you afford to pay to see a private orthopaedic surgeon it’s around £185

Wishing you loads of luck 💐

[costabuck]

Hi I’m also in South Wales and have suffered with chronic pain which started in my early 20’s. Welcome to the site and whether it’s to “vent your spleen”; try to get some help and advice, or just to ask questions this website does help if it can through the members. No ones says they live happily with pain and the people on here understand what’s it’s like to live with chronic pain.

It’s never easy dealing with chronic pain and especially it’s early on in your life.

If you have any concerns then we are here to help if we can.

[rarebraindisease28 in reply to costabuck]

Where abouts in South Wales are you? And thanku for the lovely welcome x

[costabuck in reply to rarebraindisease28]

Just outside Swansea how about yourself?

[AVMWarrior in reply to costabuck]

Wow were super close, I'm in Llanelli xxx

[rarebraindisease28 in reply to AVMWarrior]

Im in Llanelli too! Wow such a small world!! Who is your surgeon? Are you treated in Morriston or Gllangwilli? xx

[Someoneiam]

Ik how you feel iv had fainting and nerve issues and weakness in legs and other things, starting from the age of about 13 to 14 and got a-lot worse at 16, I would recommend looking up tramadol, or Amitriptyline as these are what helped me. I do hope you get help soon, and find something that will help.

[MSTKing]

Hello, if you are unhappy with your GP you can ask to be seen by either a different GP or practice - make sure they are happy to come out and see you, rather than you having to travel to get to a practice.

I'm on MST nearly a gram a day) - but I know it affects people in different ways. It maybe the combination that isn't right for you so I would ask to be re-referred for review at a pain team. When you go to your appointments always try to write out your key concerns, because it is easy to get distracted - even if you don't manage to get your concerns heard you can at the very least give them your note. I would also try and ask someone to act as an advocate - a friend or professional - so that appointments can focus in on what you need to happen.

So, my suggestions - get a different GP or practice

Ask to be re-referred to the pain clinic and make sure you take someone with you to the appointment

Always write down the top key things you need to speak about. Try to list them, so it is clear.

Also, is there a charity that deals with your condition. If so, is it worth contacting them and asking if they can support you to get a resolution?

I hope some of that helps, it is so tiring to be not heard and struggling when meds are unsuitable/don't work for you. I wish you luck.

[Hidden]

Chronic pain is the worst. Really messes with your mind. I truly can relate as I have my own chronic pain due to several issues. My thoughts: yes back & forth to different Drs & pain management is frustrating & exhausting when one does not feel well. I did get off potent meds. For me they caused more problems. You have a lot for a young person. If possible, a different pain management or specialist, I did not see your statement of rheumatologist. Is that an option? Is physical therapy an option? The combination you have sounds terrific. Frustrating when Drs bounce one back and forth. Have you had any injections for pain. I have, but they don’t last long. Just trying to help with my personal experiences and to have psoriatic as well as rheumatoid, I would as stated see rheumatologist if you have not done so already. With special and positive thoughts. Be well. You have to be your own advocate

[madcatlady58]

I'm sorry that you are suffering so much pain. Have you been seen by a rheumatologist? They should be able to help with your RA and psoriatic arthritis (although I appreciate that it is difficult to get appointments anywhere at the moment).

[Delzek]

Hi RBD, 28. I understand exactly what you are going through pain and medication wise ! I take Zomorph and Oramorph I have stopped the Gabapentin and Pregabalin, due to Chronic pain (old spine fracture and Degenerative Skeletal disease) . You have to Realise that Your Dr can "Recommend " you take this pill or that potion ! But you do NOT have to take any of them! Your Consultant is really the person you need to speak to, not your Dr if your Dr is not listening! Call the Pain management team where you were treated ask to speak to your Consultant and your Consultant will do the right thing (He/She may not do what you want, but will advise what you need) Dr's sometimes try to circumvent the Consultant due to cost's i think ,but I have found that calling the Consultant's Secretary usually gets things done ( I did it direct without waiting for a new Dr's referral) Consultant's like Dr's will try to keep you on the lowest amount of painkillers specialty Opioids! So you should be OK by calling them. Good luck 👍