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).

I have hyper mobility and particularly bad pain in one hip. I found pain clinic the most depressing place I’d ever been. Had a steroid injection there, and it gave me the resolve to do the strengthening exercises. I can’t tolerate nsaids, even with ompeprazole. GP has green lit me to have codeine, but I’m very careful not to have it even daily (recovering addict) so I manage it with exercise and heat treatment.
Honestly, building up the muscles is the best ‘cure’

And look after your feet! What do you wear?

Really consider EDS. You don't have to have stretchy skin.

I have it,it varies between different people. It is a shitter, but better the devil you know, then you can find some sense of validation and control.

Best thing you can do is join the Zebra Club, Google it, has changed my life. So much more than just exercises, not just for EDS, but any kind of hypermobility. A supportive community, regular expert lectures, plus all the pain relief and gentle rehab classes you could ever need

It is hard to get a diagnosis of hsd or eds unfortunately, much of the research is relatively new and many rheumatologists not as au fait as they should be. I was advised to contact local branch of EDS Support UK, ask the coordinator who diagnosed them . I did this and saw a private consultant geneticist within a couple of weeks. Possibly the best £200 I ever spent. The relief of knowing and being seen was amazing.

You have my sympathy
Best of luck xx

I use the curable app as I understand my mind and body are confusing pain signals and I'm trapped in pain loops. Understanding why we experience pain was a big moment for me. I still experience pain but I can manage much better unlike before when I was on 8 coedine a day to get through

@Escapetothecountryplease That is really interesting. I’ll look into it more! I’m in an EDS group on Facebook and it has some helpful info.

I’ll look up the Zebra Club. Thank you so much, messages like this are really helpful when I’m feeling so fragile with it all. Xx

Try the autoimmune protocol.

You can find it online.

If you have the means then see a nutritional therapist.

You know your pain better than anyone and if you know that what the consultant says just isn't giving you answers then don't be put off persuing this further. There will be a reason this is happening and you just might not have seen the right person yet. Talk to your Dr about Bupranorphine patches, they were life changing for me. So much so that I am more afraid of life without them.

I hadn't read all the posts, but just did. If you also have gut sensitivity, the sister condition to EDS is MCAS , unfortunately this also causes many drug reactions.

Regardless of diagnosis, you can start to help yourself feel better with the zebra club. the founder Jeannie Di Bon has plenty of free content on utube/ Facebook etc.

Orthopedic very rarely understand hypermobility unfortunately. It's predominantly a surgical speciality, and this isn't the solution for us.

In shoe orthotics will help, sketchers may not be supportive enough. Hoka shoes while pricey are great. Ask for referral to orthotics, not podiatry as then you can also discuss braces and lycra Orthotics for support. Like an exoskeleton! In the meantime, try some runners compressing leggings. They will hold you together.

Kinesio taping is helpful . If you go to chiropractor or oestepath, ask them not to crack and adjust you. But they could teach taping.
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Another with EDS here. I got a rheumatologist who also has EDS and she was fab. She had a no nonsense approach to. Here's your diagnosis now go use it to build your support network. This got me the referrals I needed for the pain clinic, she told my GP what meds I should be on and dosage etc and other referrals. Other doctors then a little more willing to treat me and offer solutions. Before the diagnosis I was literally told there was no way I could have dislocated (insert various joints) as it's so painful, I would really know about it if I had. I fucking had. I was only believed when DH was able to sit next to me and verify as my witness that he saw my fingers we dislocating.

Go back round again with your GP for a rheumatologist appointment but see if you can get one with someone who has experience of EDS. It's only recently taught in med school, just 30 mins I believe, but it's a start.

Getting orthotics is a very good idea when you're hypermobile, as it vastly reduces the stress on ankles, knees, hips, lower back, mid spine and neck just through putting your legs into the correct alignment. You'll likely need to go up 1-2 sizes in footwear to fit them in. Running shoes are very good, as are men's shoes, to give the space for your feet to spread out rather than roll inwards. Lace ups are far safer than slip on/offs. Do not believe the shite Skechers come out with, especially not their memory foam nonsense, as that puts more stress on your joints/ligaments/tendons.

On top of that, gentle, controlled exercise like resistance machines are brilliant, as they control the range of movement to 'normal' and it's therefore far harder to damage yourself as you strengthen your muscles to try and hold good posture and prevent a significant proportion of unintentional hyperextensions. And swimming - well, floating about, really - feels so good. Careful wobble board work is also very effective at training core muscles and proprioception (your awareness of where your body is in space - something that can be lacking when you bend over the normal range).

Other than that, cold packs, taping, being absolutely fanatical about good posture and ergonomics and unfortunately, being realistic about what the NHS is going to prioritise for referral, diagnosis and treatment (so accepting that a lot of this will involve personal expense) means that you may get at least some respite.

Beware many eds groups/ forums have terrifying stories. Not everyone has awful outcomes - there will be more people with greater problems in the forums. Those who are managing well aren't in there! They are out living their lives.

Cutting down on sugar and
paleo diet (but I cannot keep to it)
Heat, hot baths or infrared sauna
otc co codamol at night
gabapentin
any anti inflammation supplements
ginger, fish oil, curcumin etc

You can get hip ones too. I have painful knees due to flat feet (diagnosed by physio) and also occasionally get frozen shoulder and the supports can definitely help I find, I realise that it is working on the muscles and physio but on bad days such a help.

I also have an electronic leg stimulator which I love when I am at a desk all day.

Long term pain sufferer here. Firstly ibuprofen is really not good for you long term. Paracetamol is much safer. Other painkillers like tramadol, cocodamol are great occasionally but they make me quite sick too. You want a doctor that understands your diagnosis and will prescribe proper pain meds too.

Secondly, a proper diagnosis will make your employer make adjustments for you. Your current employer may be understanding but your next one may not be. My previous firm gave me everything I ever asked for without any questions but my current one wouldn't give me anything without specific doctor's letters for every little bit that I needed (standing desk etc).

You need to see a different doctor, one who will actually help you, ask for a referral to a pain management clinic as well. I'm the same age as you and have a chronic joint condition, it's agony. Only way I can get through a 12 hour shift is taking very high doses of very strong pain killers, unfortunately the only other fix is a double knee replacement.

Thank you so much everyone for your suggestions and advice. It means so much to hear that I’m not alone with it even though I wish no one had to experience chronic pain.

Only 70% of people with EHD have stretch skin. A orthopaedic consultant asked my daughter did she have stretch skin. She said I don't think so and he told her she couldn't have EDS then. It turns out her skin is very stretchy and she has pretty much every symptom. To her, her skin was just her skin.

She finally got a diagnosis from a rheumatologist. It does mean that she can get accommodations at uni and work placement but realistically, she doesn't get much.

It's so annoying - 'oh you're bendy that's cool'.

I'd second the recommendations for decent orthotics, I wear mine nearly all the time and live in running trainers.

Also second the recommendations for physio. Ideally get a physio with a decent knowledge of hypermobility - it may look like the correct muscles are working but often it's not the case and the 'wrong' muscles are having to do the job and can end up very sore.

I also have regular sports massage to help with all the muscular tightness and imbalances - that one's a balance of having them regularly enough to be (slightly more) comfortable and not too regularly that my limbs are wobbling about all over the shop!

I’m a Rheumy nurse and I would definitely push for a Rheumatology referral, especially given that you’re diagnosed with coeliac. I did wonder about Fibro but if ibuprofen helps there may be something inflammatory going on. There are some autoimmune conditions that don’t cause raised inflammatory markers. It’s worth pursuing.

Following

Fucking hell. I'll step away from that idea then!

I have HSD and I think they do only tend to diagnose when it’s generalised, even thought there is technically a sub category of localised HSD it’s not something the NHS have codes for (I believe) so can’t be putting on your record as it just doesn’t exist to them.

HSD you still have to hit a certain amount on the beighton scale which you may or may not.

In terms of managing, I did used to take quite a high dose of Naproxen but don’t anymore. I do take Amitriptyline for some nerve issue I’m still getting investigated but doesn’t do anything for my muscles.
I manage with a variety of things, orthotics gave me some insoles and they were great but aggravated my ankle and then they gave me an ankle splint which has also been magic.

I use salonpas pain patches, deep heat, hot water bottles and heat packs, Cbd balm from Holland and Barrett, Cbd supplements, I don’t do physio as much as I should but it really is so so important. Splints and braces as needed. Massages can be helpful as well as compression mostly for the biofeedback so you know you’re not accidentally hyperextending

My physio said she didn’t find the label of hypermobile very helpful, the main thing was to build strength and support. Like someone else commented I’d really recommend physiotherapy. But you may have to try a few to find a good one. (Annoyingly my excellent ones were at the hospital so I couldn’t access them once I’d been discharged. (I had had a torn
meniscus.))

You have to do the bloody exercises though!

There's some recent work on high dose curcurmin (turmeric) for musculoskeletal pain which looks promising. On the continent glucosamine is also used as a prescription painkiller similarly. If needing a regular painkiller would suggest regular paracetamol rather than ibuprofen from a safety profile perspective with similar pain-killing abilities. Key is using it regularly though, rather than adhoc

I was recently referred to a musculoskeletal assessment clinic for an ongoing issue. I’ve been in pain for 6 years and surgery didn’t help. One of the options was to be referred to the pain management clinic. I’m not going there yet - still one other option - but I did think it would be useful as I’ve been trying to manage it on ibuprofen but I know there are other options out there. Good luck OP.