To actually cry over this fucking shoulder pain?

[TheOGWanKenobi]

This is really fucking me off to the point of tears, and I usually have a high pain threshold.

A couple of years back I dislocated my shoulder and have partially dislocated it a few times since then. I've had physio etc and usually do my exercises religiously. I've had some recurrent shoulder pain, investigations were delayed due to lockdown etc. It turns out the pain is actually due to a calcium build up, not previous injuries. I am waiting for an appointment to have barbotage (calcium broken up and sucked out) and they will do a steroid/anaesthetic injection as well.

I'm used to the injections as I also have connective tissue disease so have had them in different joints and they work well for me, so I'm hopeful the shoulder treatment will solve it, but there will be a long wait for this. I currently am prescribed nortriptyline/naproxen/codeine and tramadol anyway to manage the pain of connective tissue disease, I take them the codeine/tramadol on a "when needed" basis and try to use it as little as possible. However they aren't even touching the shoulder pain even at max dose. It really really fucking hurts and I can't do my shoulder exercises as I can't move the bastard thing.

The GP won't do anything other than refer me back to physiotherapy (which I have already had! plus it's a telephone appointment ) They won't prescribe oramorph or morphine patch as (just to add to my woes) I also have epilepsy. I've recently added Keppra to my meds as my seizures weren't controlled (they were the cause of the shoulder injury) I said I would take the increased seizure risk as the pain is 24/7 and even a small dose for a short period may help me "get on top of it". But they won't prescribe it. I have left messages for neurology to see if they agree it's too risky and rheumatology to see if they have any other advice.

Fuck me it hurts. I've cried today and I am usually really hardcore I live with chronic pain, I have given birth without epidurals and when I had my last tattoo I didn't even "feel" it. I've put my dislocated shoulder back in myself (I know now you're not meant to do that). So I'm not a wimp but this shoulder pain is too much! I've tried gel, heat, patches etc etc. Freeze gel and ice is the only thing that makes a small dent in the pain but it's still so bad.

I think I just want a vent and lots of sympathy but if anyone has any experience or advice it would also be great! I know I have "complicated" health making things difficult but the thought of having this level of pain until I get an appointment is bringing me down a lot.

Ooh that was long sorry.

I’m on my second bout of frozen shoulder. You have my sympathy.

Ooof @Onlywomengivebirth (fab user name btw ) Frozen shoulder sounds horrific, and a second bout Can they do anything? A friend of mine tore his rotator cuff and I remember him being in agony waiting for surgery.

Shoulders are twats aren't they. I have ankle/hips/knee problems but at least then you have the option of crutches or a wheelchair. Shoulder pain is so restrictive, I can't raise my arm at all. I can't drive either (and was enjoying having my licence back after my seizures were proved to be only from sleep). Typical!

Oh I sympathise. I had a rotator cuff injury which turned into a frozen shoulder. The most pain I’ve experienced. Gentle hugs xxx

I'm hypermobile and my shoulders decide to go a bit out of place while I'm asleep. You don't realise how much you use your shoulder until it hurts! Mine sort themselves back out fairly quickly, it sounds awful it being so bad for that long!

I have no idea if this is only a thing for hypermobility or not, but progesterone really messes my joints up, so the week before my period and the few days that follow it are worse. Any chance that pattern is happening?

This might of no use at all given your specific condition, but have you considered an osteopath?

Ooh sympathy is making me feel better thank you 

I've tried keeping a log of things like that @girafferaffle when I was also trying to identify seizure triggers but it doesn't seem to be related. I don't really know what osteopaths do @vinoandbrie but if the pain is from calcium deposits I'm not sure anything but getting them removed could do much? Which is why I was about telephone physiotherapy, I've already had F2F physio and do the exercises as much as I can - I physically can't move it at the moment. Actually typing this has made me a bit angry that the GP has basically shrugged his shoulders (see what I did there ) and left me to it.

I'll see what neuro/rheum say but realistically that won't be until Monday.

I think when you're "complicated" they all seem to disagree about whose problem things are. Definitely doesn't help speed things up.

Yes that's very true giraffe. ! I can understand the GP being reluctant to have the responsibility of changing the pain meds due to seizure risk. I think it's neurology I need to speak to. They were the ones that originally "authorised" the tramadol even though it increases seizure risk. They understand that there has to have a balance of living your life, do I want to minimise my seizure risk but then live in pain 24/7?

It's just weird, I'm used to living with all this stuff and just get on with it normally, but now this shoulder thing which is probably the least "serious" thing I have going on, is the one that's bringing me to tears! I don't remember the pain being this bad even when I dislocated it.

You say you've tried patches. Were they lidocaine patches? I've been prescribed them for years for hideous shoulder pain and they really do help. They're not a magic bullet, but make things less agonising without a million hard-core tablets. I just take 30/500 cocodamol with them. Unfortunately the NHS has just withdrawn them from the prescriptions list as the NHS has decided they aren't effective (?!!!). I'm pretty certain I can buy them in from America or elsewhere that they're sold over the counter though if I look hard enough.

Anyway, long story short. If you haven't tried lidocaine patches, they may help. DM me if you want to know more about them.

I don't have any advice but I hear you. I've had a frozen right shoulder which is healing .... but now I'm having the same symptoms in my left.

I'm in bloody agony: can't sleep, can't get dressed, can't put a coat on without gritting my teeth. Its horrible.

I'm lucky enough to have PHI through my DHs work, but its still taking months to go from consultant appointment to diagnostics to steroid injections and back again.

I just want to be pain free.

My sympathies. I got diagnosed with a frozen shoulder in January. OMFG the pain, the feeling of being so fucking old, no one can understand it unless they experience it. Had a steroid jab yesterday and can still feel it but it sort of feels better. Only woke me up twice last night.

Totally fed up with feeling exhausted just taking a shower and blow drying my long hair and then trying to get it in a bun. Cant wear a bra apart from a stretchy one, taking my coat off takes an age. Its shit.

I am also getting twinges in my left. I'll be like a fecking t rex .

YANBU. I have no idea if my experience will help in any way but last summer I started with sciatica. It was the worst pain I have ever experienced and there was no let up. I couldn't function, unable to put weight on it only able to lie briefly on my "good" side for about 20 minutes so didn't sleep for days. Originally the Doctor prescribed co codamol which made zero difference. He then suggested Pregabalin/Lyrica which is also used for epilepsy. I had a month of pain before they took effect and one morning, I woke up pain free.
They're not pain killers but work with your brain signals. Maybe ask your GP if they would be suitable as they are used in other chronic pain conditions.

Member of the FroSho club too, shoulder pain (and lack of movement, frustration and sleeplessness) is an absolute KILLER, sympathies op.

Gentle high-5 with my working arm...

@Onlywomengivebirth

I’m on my second bout of frozen shoulder. You have my sympathy.

Me too,the pain is so bad, I can empathise completely. I hope you are feeling better soon OP.

I had a diagnosis of frozen shoulder and had steroid injection that did funk all.
I paid for a physio appointment, she spent 20 minutes examining me nd questioning me and worked out that it is referred neck disc pain.
Good luck

@Mydogisagentlemanydog - that's where my consultant is heading with my shoulders.

My consultant said that they've seen a significant increase in shoulder problems over the past couple of years. They don't know if it's a side effect of covid, vaccines .... or simply hunched over laptops at the dining room table and not moving as much.

I'd contact rheumatology and ask for an earlier appointment for your shoulder. I may just be lucky, but I've been brought in early to have injections to tide me over. The trouble with them is that because they can damage the tendons if not intraarticular, they're reluctant to risk it until absolutely necessary (which yours sounds like) and are generally limited to no more than two in any small area.

However, perhaps they would consider an im pulse one instead? They don't have so much of a risk because they aren't concentrated right in the vulnerable area and although that means they aren't quite as effective, they're certainly helpful without preventing the actual procedure going ahead in due course.

I sympathise. I've got AC joint damage and a 'small' tendon tear thanks to PsA and EDS dislocations. I believe the tear is unlikely to heal but they won't repair it unless it progresses enough for my arm to be hanging off. I had DP leaning his entire weight on the joint to try and distract the collarbone slightly on Monday and I've been sleeping in a nest of pillows to stop me rolling onto it, dropping it back or lifting it over my head in my sleep ever since. It's improved hugely since that as it pinged back into place the following morning, too.

Pity I'm allergic to most pain meds and anything affecting serotonin sends me batshit so I can't have those either.

I tore my rotator cuff back in 2007 and still suffer now so I feel your pain. I really hope they can help you soon, I’ve had surgery and steroid injections - the injections did help but were very painful at the time 🤦‍♂️🤦‍♂️

I had horrific shoulder pain in November that radiated down my arm. Nothing touched it. I was screaming. It got worse over the day.
GP gave me gabapentin which is an epilepsy drug similar to a poster above mentioned. Took a while to work as have to gradually increase dose etc. Two weeks to the day I realised the pain hadn't come on. It always started about 11am.
Might only work for nerve pain, but worth asking GP.
A TENS machine helped a bit too.

Another sympathetic grimace from the second frozen shoulder club.

2 weeks and counting until my first steroid jab which was the only thing that helped last time. This time it's my non dominant arm but as I now have fibromyalgia, it still hurts like a bitch.

From a quality of life point of view, I think it's unacceptable and unrealistic to expect you to remain with this acute level of pain for an extended period. I'd be tempted to call the doctor and tell him that you're going to head to A&E if they can't help.

So many in the sore shoulders club! Sorry so many of us are suffering, it's shit.

Apologies as too many people to tag everyone individually, but thanks for all replies. I've had lyrica in the past but switched to the nortrip as it worked better for me. It's the orthopaedic clinic, not rheumatology who are doing the injections as (I'm obvs not a medical person as you can tell from my terminology ) as it is done under ultrasound, they break all the calcium up and suck it out, then they do the steroid/anaesthetic injections. The latter jabs are what I have had done previously in other joints by rheumatology but they don't want to do them in my shoulder until the calcium is gone. I've had lidocaine patches before for other joints, they were amazing! My NHS trust won't prescribe them anymore as they're not cost effective apparently TENS machines don't seem to work for me, I've tried a few over the years! Cold/ice seems to be the only thing that helps a bit as it numbs it. I have a big tube of BioFreeze which has been better than the Deep Heat cold one, in case that helps anyone!

YY to the next of pillows, I have been using towels rolled into different sausage shapes too, to support it. I've spent quite a bit of time over the last two years with this shoulder in a sling due to injuries, and in some ways that's easier as you "can't" move it so you don't feel as much pain or automatically try to reach for stuff IYSWIM.

It's not knowing how long the wait will be to get it done that's also hard. I definitely need some better pain relief in the meantime, I'll see what neurology say on Monday. There must be something they can do, what if I needed an operation, I'm sure they wouldn't withhold pain relief because I'm epileptic?! In fact A and E even said, that next time I dislocate it, to come to hospital to get it put back in, instead of doing it myself, as they will give me pain relief!

Why do things always feel worse on a Friday.... very gentle pats, high fives and hugs to all fellow shoulder sufferers...

Also the benefit of a sling is that I can carry my mobile phone around in it (I use a crutch to walk, luckily the other arm, not the fucked shoulder arm). Never thought I would feel nostalgic for my shoulder sling

I sympathise - I had something similar that had me sobbing in pain. Obviously don't do this without checking with a doctor first, but can you add paracetamol into the mix? I took naproxen and paracetamol for mine. For me it was better not to move it at all until the swelling went down as that aggravated it. I pretty much tied my arm across my chest so it couldn't go anywhere. Obviously don't do this if you are supposed to be keeping it moving!

Total sympathy from here!

I've torn and permanently knackered the rotator cuffs in both shoulders as a result of having EDS and using a manual wheelchair and hauling myself upstairs using my arms.. for years.

Surgery for me is a tricky situation (heart problem) and so it was something being ummed and ahhed over by hospitals... and then the plague hit and nothing like that was being done.

As a result, it's now pretty much too late - ill have to live with this fucking horrific soreness, burning, intermittent SCREAMING agony if I push a joint past its range of movement by accident (you know, flinch, trip, jolt it somehow...everything goes a bit distant, fuzzy, black and sweary..)...

I have butec patches but think im going to try and switch to fentanyl (the patches are burning my skin!), various other pain meds (limited as i can't do codein and i can't have ibuprofen)... i can't take pregabalin or amitriptyline (they work, but they also make me inflate like a balloon with retained water that my heart can't handle)...

It is really, quite shit. Injections gives me some relief but it doesn't last forever and for a long while i couldn't have due to covid.