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).

Would agree with the point about orthotics. I had mine fitted at the hospital although they are standard ones, not bespoke, but the woman who did the fitting for me said definitely lace ups and advised what types are better (something to do with how rigid the sole is)

I'm sorry to hear you're in daily pain. It's the pits; it makes you miserable; and and then when it's lowered your mood, you feel every twinge and ache more. So it becomes a vicious circle.

Standard painkillers often don't work all that well for chronic pain (chronic in the medical sense, ie long lasting). They also have a lot of potentially nasty side effects.

I really wouldn't advise you to go down the opiate route if you can avoid it (that's codeine, dihyrocodeine, buprenorphine, oxycodone, fentanyl etc etc). Look at what's happened in America -- massive problems (for individuals and society) with addiction caused by doctors prescribing opiates.

Taking omeprazole can help protect your stomach from ibuprofen, but longterm regular ibuprofen use can cause irreversible kidney damage. That would worry me more. (The same goes for other tablets in the "ibuprofen family" - naproxen, diclofenac etc).

Pain blockers such as amitriptilline or gabapentin help some people. They can also have sideeffects +++ but not everyone suffers with that;they are worth trying. I'd avoid pregabalin if you can,. There's a reason it's a drug of choice in prisons - gets you high and is addictive!

So what else can you do? There's some truth in the suggestion that a diagnosis won't make a difference - you should treat the person, not the illness. But it might help you plan your way forwards.

Psychological intervention can help with dealing with chronic pain. You may have it for years but if you can learn ways to rule it, rather than it ruling you, then that is a less scary idea. CBT helps some people. Yoga helps some. Relaxation therapies. Anything that allows you to be mindful, be that family, hobbies, sex, anything that stops you focussing on the pain. More yoga. Regular exercise (important!), optimise your sleep patterns; don't use alcohol as a painkiller. And acknowledge the pain, not trying to fight it, but accepting that it's there, but you can work through it somehow. If you fight pain, your body and mind tense and the pain gets worse. If you can relax into it, it fades. If the pain is lowering your mood, it's well worth trying antidepressants; they are not painkillers but can boost your mood enough so that you can get back on top of the pain.

(I used to be a GP. I had a professional and personal interest in chronic pain. All the above advice is generalised, obviously, but follows official recommendations. https://www.nice.org.uk/news/article/nice-recommends-range-of-effective-treatments-for-people-with-chronic-primary-pain-and-calls-on-healthcare-professionals-to-recognise-and-treat-a-person-s-pain-as-valid-and-unique-to-them).

You don’t need a diagnosis for reasonable adjustments. You can ask for what you need and an OH assessment might help form work. You can also apply for Access to work which help with funding adjustments at work.

Contact your union, they will have information on reasonable adjustments

https://neu.org.uk/advice/equality/disability-equality/reasonable-adjustments

I have hEDS and chronic pain (also no stretchy skin). I have an opioid allergy and severe GORD so quite literally the only painkiller I can take is paracetamol.
I use a lot of ASMR (genuinely it helps, but it will depend on whether ASMR gives you tingles or not). It's ultimately a form of mindfulness so whichever form of that works best for you.

If you're hyper mobile then strengthening the muscles around your problematic joints is by far the best thing we can do. It helps, it's not a magic bullet, but I would be far worse without it.

Also heat. In winters now I live with a hot water bottle practically surgically attached to me.

Braces aren't a terribly good idea (and I do have some rather loose joints). They weaken the muscles around the joint if you wear them long term.

I really sympathise. It's not reasonable to expect you to manage without painkillers and even worse to deny you a proper diagnosis. I spent a lot of years trying to battle on but have pretty much given up work now (late 50s).

I have a lot of musculoskeletal problems and am on a cocktail of daily painkillers: OxyContin, pregabalin slow release ibuprofen (with esomeprazole) and paracetamol. I'm been under a pain clinic where I had lidocaine and ketamine infusions but I'm taking a break from them at the moment. I do physio, have treatment with an osteopath and use bracing, heat and ice. I'm not in the U.K. so my doctors aren't rationing my pain relief because of money. Of course dependence is a potential problem but I have been on a stable dose for years, so the argument that patients will just need higher and higher amounts is not always true. I really need an ankle replacement but my other problems will make the surgery and recovery tough.

I have tried other meds: codeine made me dizzy and made my throat so dry I kept getting infections. Tramadol kept me awake and Buprenorphine patches made me nauseous (one way to lose weight 🙄). I did persevere with it for a bit but then developed an allergy to the patches. I have tried cortisone injections but they didn't help.

As well as stomach problems, long-term ibuprofen can have a bad effect on the kidneys, so my creatinine is closely monitored.

Another vote here for Jeanie Di Bon on you tube… she’s amazing. She has EDS and can demonstrate helpful vs unhelpful ways to move and strengthen with hypermobility. She also has a paid section called the zebra club but as a start look up her advice and exercise videos on her you tube channel.

I feel your pain (literally)
I'm a t.a so on my feet all day in school and waiting for new knees.
I take paracetamol and ibuprofen morning and night, volterol extra strength gel helps, also knee braces.
Hope you manage to find some relief.

Braces are standard issue for hypermobility. This idea of weakening muscles is outdated. They reduce the oversensitivity of that area, allowing it to calm and heal. Then you can actually start to rehab it ,and facilitate living a bit more life. Amazing for me

@mauvish one of the reasons for the addiction problem in the US was the drug companies refusing to acknowledge that their slow release painkillers might not last quite as long as they thought. Surprise surprise, not everyone metabolises medication in the same way!

The drug manufacturers refused to allow doctors to prescribe the medication more frequently than 12-hourly, when in fact some patients needed it every eight hours. They also put pressure on insurance companies not to pay for more than 12-hourly dosing. Instead they advised the doctors to increase the doses. So the patient might need 10mg every 8 hours (30mg per day) but they wouldn't be allowed it. Instead the doctor would prescribe 20mg every 12 hours (40mg a day). So the patient would be getting a higher dose than they needed some of the time, and nothing for 2 x 4 hours a day when it ran out. In desperation they might turn to non-prescription sources for the gaps when their pain was not controlled. Or because the patient was still in pain, the doctor would increase the dose again, but still provide nothing to cover the period when the medication had worn off.

It's so easy to blame patients and doctors without knowing the full story.

@duvetdayy OK so it sounds to me like things have been pretty thoroughly looked at from the orthopaedics side already from what you’ve said. I don’t think it’s entirely fair from what you say to feel you’ve been fobbed off, you have already had quite a bit done to look into this. However I understand that you’ve still got the pain so it doesn’t solve that problem for you. You have to understand that orthopaedic specialists are basically a variety of surgeon, and are mostly looking at joint problems from the point of view of trying to rule out any serious “mechanical” type problems to fix. It sounds like they didn’t find any for you which is good.

But they don’t have the knowledge and training to eg diagnose or rule out things like fibromyalgia or Ehlers Danlos or inflammatory type arthritis like lupus or rheumatoid arthritis where there isn’t a mechanical problem causing the joint pains. Sounds like you’ve probably had some basic bloods which haven’t shown any obvious problems, which is good, but it is still possible to have some of these issues without it showing up in the bloods. You need to see an expert in joint problems from the medicine/physician side rather than the orthopaedic side. Which is rheumatology.

I agree if you have coeliac disease then you already have one autoimmune disease and it make others more likely too (but that’s not to say that’s definitely what’s happening). Hopefully you’re strict about a gluten free diet (most coeliac patients are!) as coeliac disease itself can cause joint pain issues.

Definitely ask for a rheumatology referral, and make sure you understand what they think the underlying issue is before they discharge you, even if they are able to be clear to you that they feel it is a chronic pain issue with no underlying cause, at least then you know what you’re dealing with and you can look at the chronic pain side of things. If you don’t understand what they feel the diagnosis is then do ask them! I’m always surprised when patients come to see me saying they don’t understand what’s wrong with them when they’ve just seen a specialist about it. I understand it can be intimidating when you’re younger though to ask questions etc. Muscle pain is a thing! So at least that GP gave you an explanation!

Good luck! There is a lot of good advice on this thread including from people who suffer from chronic pain with no underlying cause found which is definitely unfortunately a thing that can happen and can be really tough to live with.

Naproxen

I don’t think it’s entirely fair from what you say to feel you’ve been fobbed off, you have already had quite a bit done to look into this.

With respect, the tests I have had done are a result of years of GP appointments, and they only really began last year. It’s been extremely, extremely hard to get anyone to take it seriously and I have had to advocate for myself the entire time. I’ve been told, as I said, that it’s muscle pain, it’s growing pains, they don’t know what it is so best to just take painkillers (this was before I’ve had any tests). I’ve been told I’m a worrier, I’m angling for a diagnosis…

It isn’t that I didn’t understand what the consultant thought it was, it was that she didn’t give me any actual answer. She didn’t say there was no cause. She said “yeah, it might be this, but it doesn’t make a difference anyway and you shouldn’t let it hold you back.” Totally invalidating. When I was diagnosed with coeliac disease it made me realise that I wasn’t just poorly equipped to deal with the way everyone else felt every day, as I assumed my entire life and childhood, but that I had been ill. I’ve been in pain nearly every day for so many years and I am still without a diagnosis after explicitly asking.

Of course I follow a strict gluten free diet. I wouldn’t be able to function if I didn’t.

Your entire comment suggests that this situation is because I don’t understand what has been said to me. I have not been diagnosed with anything. Please don’t defend the GP who took all of two minutes to dismiss me with “it’s muscle pain” when I told him I couldn’t stand up without intense stabbing pain at the age of 19.

There are different grades of hypermobility so your consultant can get in the bin with "didn't hold me back". I have hypermobility alongside lipoedema, you might like to check that if flesh is painful to the touch. Exercise is what I use to offset my hypermobility, working with a PT to strengthen targeted areas.

Exactly. If she had said something along the lines of “i can’t diagnose you because I’m not a rheumatologist but I can see how much it’s impacting your life and understand why you’d like to actually know for sure what is wrong, so please pursue a referral to rheumatology and don’t worry you can still live a full and active life!” that would have been totally different 😂

I did wonder about lipoedema but the flesh isn’t actually painful to the touch. I think I might see a PT at least to begin with for exercise because I realise I struggle to know when I’m hyperextending my joints.

Have you considered osteopathy? I had treatment (for something different) recently and it really helped me.

No advice but want to offer my sympathy, hope you can find resolution soon to your pain soon. It’s miserable experiencing pain on a day to day basis (obviously).

🌸🌸

Perhaps acupuncture or reflexology would help.

OP I was diagnosed with fibromyalgia and hypermobility on the same
day by a rheumatologist -they put me on amitriptline and gabapentin, and said any more problems and changes in meds needed to ask for another referral back to them. Touch wood the meds have worked for me x

@duvetdayy Sounds good.

My lipoedema isn't painful to the touch (mostly) so if you look lipoedema shape it's possible. It's thought to be a connectivity tissue thing now, similar to EDS. I hope it's not that though x