To think if I can’t take painkillers every day…

[duvetdayy]

…I will end up going mad???

Long story short I suffer from chronic pain for as long as I can remember. I have hypermobile hips/knees/ankles and have had many tests to rule basically everything else out. These joints give me severe pain regularly but no doctor wants to diagnose me with hypermobile spectrum disorder (or, in fact, anything!) because they don’t believe getting a diagnosis makes any difference.

I am a teacher and I work long hours on my feet a lot of the time moving around the classroom. Equally sitting for long periods is painful.

I have been resorting to taking ibuprofen daily for some relief and I regret it so much because I used to limit my painkillers. But taking it daily has helped and now suffering through the pain without them is worse. I am also prescribed omeprazole to protect my stomach but my GP told me to avoid daily painkillers.

What the fuck am I meant to do then? I can’t keep being in pain every day. I’m 29. I literally can’t do this every day.

I’m posting for traffic - how do people manage their chronic pain (except for physio, weighted blanket… and I’m going to ask for a referral to a pain clinic).

You need to push for a diagnosis - this will enable you to request reasonable adjustments at work, like e.g. a standing desk, kneeling chair, etc.

Glucosamine sulphate with chondroitin might help (speak to doc for approval first!). You can get it OTC at pharmacies, Holland & Barrett etc.

Play around with your diet to see what effect any changes have - generally lots of healthy fats and protein will be good, but you might potentially see benefits in cutting out refined sugar, caffeine, alcohol, dairy etc. See what works.

Wear knee/ankle supports when moving around a lot. Deep Freeze spray could help with pain, as a short term fix.

Sympathy and solidarity, because it's hard!

How do I cope? Generally, not very well. I guess I'm lucky in that my pain fluctuates daily so some days I need just a morning dose to start me off, other days I can't even walk a step for pain it's that bad.

I'm only on paracetamol. Pain clinic suggested lose weight, exercise more, and meditation despite the NICE guidelines saying exercise can exacerbate it🙄

Ibuprofen taken long term causes neurological problems, some study was just released in the last year I think. I was taking maximum dose on my doctor's orders until I read that. I have Long Covid which causes just about everything that could go wrong, and pain. I was given shots in my knees which worked well, but the rest of my body was suffering. I started taking amitriptyline a few months ago for migraines, and it works quite well for pain too. It was a miracle drug for me. I feel so much better! No idea if that would work for you of course, but it's worth an ask next time you see your doctor. I benefit from long hot soaks with epsom salt and CBG tincture as well.

Amitriptyline has helped me enormously- I've had sciatica for years and it's taken very nearly all of the pain away. I was taking the maximum dosage of paracetamol, ibuprofen and codeine every day (and it wasn't really touching it) but I don't take anything now except the amitriptyline.

I’ve tried so hard for a diagnosis. I went through so many tests once a physiotherapist was like “do you realise that you’re not meant to be able to move your legs like that…?”, just to rule other things out. When I went to see a consultant at the end of it all, she said “well a diagnosis doesn’t change anything. Plus I am hypermobile and I never let it hold me back!”

I’d been trying for years to find out what it was and constantly been fobbed off and it was just the final straw. I know I need to go back and try again. Luckily my work are very supportive anyway.

I will speak to my GP about that, thank you! In terms of diet, I’m coeliac which I thought might be the root of it but it isn’t as I’m still in pain daily. Maybe something else should be cut out. The supports and deep freeze do help.

Thank you for your advice!

I use magnesium sprays, supports for various joints, lots of heaters and massagers, and recently have started using a red light therapy wrap.

It can be a bit hit and miss but there are things that will help.

Agree with the above posts but as someone who has lupus and other painful conditions I literally could not survive without daily painkillers - I would have no quality of life at all, and so there are times when people (like me) are prescribed daily long term painkillers. If you need them you should push for them, but ibuprofen is one of the most damaging ones stomach wise so you should be on other things. I take Tramadol and amitriptyline daily for pain relief and occasionally Cocodamol 30/500 (not at the same time as the tramadol).

Have you read up.on Ehlers Danlos Syndrome, my daughter who's 24 was diagnosed with it last year. It's genetic and it's common to also have fibromyalgia and some MH problems. She has been under a consultant but has been told there's nothing that can be done to ease her symptoms. She lives daily with chronic pain, it's heartbreaking to watch her suffer and not be able to take the pain away. If you want to private message me, please do x

I have arthritis in one hip and both knees and I used to take 8 paracetamol a day along with other pain meds. I got to a point where they were ineffective and after seeing pain clinic I went on to Buprenorphine patches about 7 years ago and have dropped most of my other pain relief, still on nortriptyline.

I take daily painkillers.

Your doctor is sort of right and sort of wrong.

Some people develop tolerance for painkillers and wind up needing stronger and stronger painkillers. Eventually they are on very strong painkillers and even those lose their effectiveness.

If you are only using over the counter painkillers then this is unlikely to happen.

However, ibuprofen is apparently bad for your stomach - my GP is now saying take omeprazole with it.

Maybe look at alternating ibuprofen and paracetamol?

If you have had the pain for a long time (six months plus) then you may have central sensitisation issues and SSRI's may help.

Yes, I don’t have the stretchy skin or scarring associated with hEDS. My hypermobility also isn’t generalised - it’s localised to my leg joints. I do get very sore and sensitive skin though, as in it hurts to touch it lightly when it’s flaring up and I can get a lot of fatigue which led me to think it could be fibro, but I think it’s the hypermobility.

Thank you for your kind words, and I’m sorry to hear about your daughter but honestly it must mean a lot to her that you are supportive. My mum is super supportive of me and it helps massively. X

Paracetamol makes me want to vomit because I overdosed on it when I was about 20 and I just associate it with that which is annoying!!

Yeah I’m not worried about becoming desensitised to painkillers, more that I honestly have enough stomach issues as it is without adding to it 😂 also I really would just like to not be reliant on mediation if I can possibly help it, but I’m open to anything really.

Do you use any supports?

Cannabis vape or gummies.

Physio! I was diagnosed, given exercises and it's helped so much. I can squat down and come back up without pain for the first time in years!!!

I initially self referred as I'd dislocated a knee, but was quickly diagnosed with hyper mobility and hip issues following pregnancy 4 years ago, and the full issues dealt with. I'm early 30s for info.

Oh! Special sweets or vape might work. You can be prescribed privately online.

I do! I have some ankle supports and knee braces that I wear when necessary.

I found NHS physio of limited use (although I was limited to 4 sessions).

Things that might help:

Acupuncture (helped me)
Decent shoes - Skechers worked for me but you might need more support
Regular session with someone to do exercises to strengthen the muscles around those joints

@Pigeonqueen I think the difference is that you have a lupus diagnosis so the reason for your pain is clear. The guidelines for managing painful conditions are different from those for managing chronic pain with no underlying condition.

@duvetdayy I’m a GP, you said you saw a consultant about this, what was their specialty ?orthopaedics ?rheumatology - and what did they ultimately think was causing the pain, or did they say they believed this to be a chronic pain issue with no underlying cause (other than the hyper mobility which can cause a degree of pain)? It’s a bit odd of them to have sent you away without a clear explanation of what they think the problem is. Do you have a copy of their clinic letter to see what they actually said?

If you haven’t seen a rheumatologist about this yet, I would ask for a referral to see one from your GP. A rheumatologist can make a clear diagnosis of something like fibromyalgia if they feel that’s what’s happening and can help to exclude other serious causes of long term joint pains.

To a certain extent a lot of people would find it difficult being on their feet all day even in their twenties, especially with hypermobility but I agree being on ibuprofen forever isn’t the answer. If you are carrying any extra weight it’s worth trying to lose weight, and also worth checking if you are flat footed and might benefit from orthotics. I agree with a pp who said wear bouncy soles shoes like Sketchers if possible too. You might be able to get some adjustments made at work to allow you to sit down more often too.

Wow, that is interesting. I too have 1 hip replacement and the remaining hip and both knees riddled with arthritis. I'm prescribed 500mg of slow release ibruprofen with omeprazole, which I hate taking, plus 60mg codeine which knocks me out too much to drive.

Never heard of Buprenorphine patches and never been offered them. I will ask my GP.

Your idea of a pain clinic (assuming that underlying causes have been clearly ruled out) is a good one also.

@thenightsky I think a buprenorphine patch will be way too strong for you if 60mg of codeine knocks you out! The lowest buprenorphine patch is equivalent to about 750mg of codeine over 24 hours…

So it was following blood tests for lots of things including rheumatoid arthritis, a dexa scan, knee x ray, hip x ray which showed a mildly shallow socket which I was told was inconsequential and then an mri with dye injected to look for a labral tear.

The consultant was in trauma and orthopaedics. She said that maybe it was the hypermobility but that she couldn’t diagnose me (fair enough), that she didn’t think a diagnosis would make any difference to the treatment I could access (also fair), and that she used to row for wales with her hypermobility and so she couldn’t see why I let it hold me back. I have a copy of the clinic letter and it said that I have chronic pain and should have physio and was being discharged from orthopaedics.

I have been sent away many times by medical professionals without being told what they think the problem is. Once a GP didn’t look up from typing and just said “it’s muscle pain”. I was 19 and too shocked to push him.

The pain I have is not consistent with anything that my colleagues experience being on their feet all day.

I am going to pursue a rheumatology referral now, but that meeting with the consultant just made me not ever want to bother again. It was the last straw.

Don’t take ibuprofen daily, you need to see the pain clinic. I’ve been on oxycodone for 10yrs for chronic pancreatitis. Have also been on fentanyl. Managed to keep working as I don’t feel drowsy on them as I went up the painkiller chain very slowly. I couldn’t live without them, but an reducing at the minute