Inflamey person to a&e

[Chopmyarmsoff]

TL;DR I have severe pain ( worse than breaking limbs/childbirth/dental surgery with no pain relief), no one knows why and painkillers no longer work. Would I be unreasonable to go to a&e in desperation?

Long background: I was diagnosed four years ago as having an undifferentiated connective tissue disorder. I’ve had pain for years that no one could explain so getting this Dx was a big deal. I was treated by one department (ophthalmology) with biologic medicine for inflammation which had a knock on effect with the CTD and I didn’t suffer for a few years.

It started to come back with a vengeance. First around my elbow then my wrists and ankles. Previously it was only ever flaring at one location at a time. Now they’re all hurting

My usual rheumatologist has been off sick for two years so the past few times I’ve been I’ve been seen by another who says I don’t have a CTD I’m just an inflamey person (!)

This is clearly very helpful. I currently have a big problem with the tendons in my wrists, hands and forearms, they’re very swollen and extremely painful. It’s usually seen in milder cases in professional weightlifters and rowers but I can’t even lift a cup of tea or turn a door handle let alone repetitive sports. My rheum sent me for a scan which the consultant doing it diagnosed this was mechanical response to inflammation but they didn’t know why I had inflammation so my Rheum has decided it’s a mechanical problem, just as he did with my elbow and referred me onto orthopaedics. It takes so long to get the ortho appointments that the joint I’m referred for usually has settled and another started up. They have said the inflammation needs dealt with and then there will be no mechanical issue. Rheumatology say the inflammation is as a result of the mechanical problem. Neither are willing to help treat me. My GP always says nothing they can do and to speak to the rheumatologist.

I know it’s inflammation that’s the problem because I get it in my eyes and bowels too and they don’t have skeletal mechanics involved. I’ve had bloods show something autoimmune is wrong but they didn’t clarify what exactly it was. all I know is it’s not rheumatoid arthritis as those bloods are negative.

Painkillers aren’t working anymore ( I can’t take nsaids) - codeine/dihydrocodeine (strong dose) isn’t touching the pain right now. I cannot use my hands at all for any kind of weight bearing/lifting. I couldn’t even take my own trousers down. It’s got so much worse this past week.

I’m getting scared that everyone is ignoring it or thinking it’s not important but I can’t look after my kids properly. I don’t suffer health anxiety but I’m getting a bit panicky now. I’m floored with pain and fatigue or because of mediocre pain medication. This morning I woke up in so much pain I couldn’t move or get up, I cannot help with my toddler and I cannot drive with the pain/meds. I’ve never felt pain like that before, breaking bones and childbirth was nothing.

I don’t know where to go anymore. I cannot live like this. I don’t want to live like this. Would I be unreasonable to present at A&E with this pain asking for help given no one else is willing to help?

If IABU about a&e please someone suggest what I can do? I cannot wait until October to see someone. CBD oil on order in case that works. I’d eat the content of my child’s nappy if someone said that would cure me.

What tests have you had? As for now, when my joint pain flares a hit bath really does help. No lasting effect, but some temporary relief. Paramol and anti inflammatory tabs help take the edge off. What anti inflams have you got? X

I honestly don't know if going to a&e would help.

But I feel for you. I have chronic conditions and suffer chronic pain and exhaustion/ fatigue.

Have you seen tried on medications such as gabapentin, pregabalin, amitriptylene? These are all usually useful for helping to not stop, but calm down the nerve pain and other pain, and certain feelings.

When mine flares up to it's worst, I cannot use my hands, I cannot move my body properly to get about. And I can't speak or hear properly.

Have you seen tested at rheumatology for fibromyalgia?

Have they looked for bursitis?

I'm appalled they aren't doing more. I hope you get better soon and get some answers.

I don't think you are being unreasonable in the slightest.
I have two adult daughters with Ehlers Danlos Syndrome and the pain they have is awful (inherited from their Dad's side)

But I don't think you'll get any help from A+E especially on a weekend....they just aren't set up to help with pain without an obvious cause like accidentally cutting off a toe while mowing the grass!

Heat CAN help. And bracing the painful joints. Both of my girls have splints for wrists, fingers and ankles and both rely heavily on heat wraps and pads. Gabapentin also helps... is that worth asking about?

Sorry, just re read your post re meds. Why can't you take anti inflams? You are stuck if you can't take any type? Codeine does nothing for my joint pain, tramadol is more effective? Steroids if you find a sympathetic GP who'll prescribe?

You've been under Rheumatology for a while, what tests have they done? Is there a Rheumatology help line you can ring for advice? Xx

In the nicest possible way, what do you think A&E will be able to offer?

I think steroids would potentially help- strong ones like methylprednisolone. If present to a and e if I was in that much pain.

Steroids would work, but at relatively high doses finding someone to prescribe without a diagnosis is difficult I think. I've tried a&e with a diagnosis and previous documented use and they prescribed 1/5 of my usual dose.

If you do try a&e tomorrow lunch time I'd plump for. I hope the op has a helpline, that's without fail usually. Hopefully she's asleep by now. It's horrendous. :(

I was going to ask about EDS too - a friend has it and it gives her crazy pains. Particularly when you said it involves smooth muscle too.

For some reason there seems to be a reluctance to diagnose EDS (there are several different key types of the disease) or Hypermobility syndrome. People without relatives also suffering to signpost a diagnosis can often be well into adulthood before being diagnosed- or kids will be diagnosed and then the parent(s) as a result of that diagnosis. And yet it can be a horrible disease and it’s not as super-rare as it was (I suspect because diagnosis has got better rather than there being more sufferers) - certainly even if GPs don’t think of it then specialists should be very aware of it.

Fingers crossed they can do something for you.

Another thought - if you are being passed back and forth with no sign of help could you get a referral to a pain specialist, to deal with the excruciating pain you are in, regardless of cause?

Do you know anyone who can get you some weed? My friend has absolutely terrible RA and Fibromyalgia, plus several post surgery issues which cause a lot of pain. She rates her daily pain at a 5/6 but has regular flares of 8/9s.
Her pain meds would put me in a coma I reckon, they are that strong but she has days where it barely touches the sides and so will smoke a bit of weed which instantly helps.
She also uses CBD as an alternative but I don’t think it’s as effective - I might be wrong so I think it’s 100% worth trying a decent grade CBD (have another fibro friend who swears by it)
I realise I’m advocating something some people wouldn’t like nor tolerate, but the evidence for medical use / pain management is there.
So sorry you have to deal with this

Have you been tested for vasculitis?..this is a rare autoimmune disease ( there are 17 varieties and it's notoriously difficult to diagnose )...the symptoms you describe, joint pain and bowel problems suggest this could be a possible cause....the white blood cells in your blood start attacking the body causing all manner of systemic symptoms
Have you had bloods checked...especially CRP and HLAb27 ( can identify ankylosing spondylosis and inflammatory bowel)
However these can be negative and you can still have vasculitis
It took me 18 months to get my diagnosis...I initially had problems with my eyes ( painful and red) associated with swollen painful joints and extreme fatigue
Finally developed a rash on my shin which I assumed was dermatitis but eventually broke down and became ulcerated ...biopsy confirmed vasculitis
I definitely think you need to go back to GP and mention these symptoms again
I've been in steroids and methotrexate for last 18 months to get me into remission , although I still have terrible fatigue and have been left with permanent neuropathy in feet
I couldn't take nsaids (especially naproxen) as I think this exacerbated my symptoms
Good luck ...I found that medics didn't take me seriously which delayed my treatment and were actually shocked when my biopsy came back positive....( and I'm a HCP!)...keep ,pushing for answers

Oh my god, it sounds awful

My OH has behcets disease (autoimmune condition where the blood vessels get inflamed) and when he's having a really bad flare up sometimes they give him steroids. I don't know if that would work for you?

Are you on any immunosupresants?

I'm not sure what A&E would do tbh?

Can you afford to pay and speak to someone privately? Even for just one appointment to see what they say? I know it's silly money for most people, but might be worth it if it's physically possible?

My OH took years to get a diagnosis (and tbf that was even when he had private health insurance through his old work I think). I'm still not convinced that they really understand what is going on with him, and he gets flare ups despite the gazillions of drugs he's on, but at least he can function the majority of the time.

I'm sorry you're going through this

Thanks all. I needed to have a rant last night about this.
I’ll try and answer questions I remember (on tiny phone and scrolling isn’t fun)
I don’t take anti inflammatory meds because they make me wheeze. I did take naproxen for a while anyway as asthma was easier to deal with than pain but it made me nauseous and vomit.

Rheumatology haven’t tested me for anything as ophthalmology tan loads of tests to determine what autoimmune problem I may have had. Everything came back negative except p-anca which was positive but the sub tests for vasculitis were negative. Was tested for inflammatory bowel disease as there were signs of inflammation in biopsy and fecal calprotectin but gastro-doc said it was only IBS. Rheumatoid factor always negative.

If anyone can give me names for tests to request i’d be grateful. Rheumatology seem to not give a crap what the diagnosis is or isn’t and the eminent professor bloke just wants me off their books.

I was supposed to try gabapentin or pregabalin (can’t rememebrt which) but got pregnant. I’m breastfeeding (trying to wean now) so need to stop before I can try - but I feel being so incapacitated by this that bfing is one of the few things I can do with my toddler together because I can’t get down on the floor to play.

I was told it’s not fibromyalgia because my blood tests do show something but just not something specific. Not sure treatment would be much different.

I was on methotrexate and adalimumab four years ago and while they kept things milder & I was definitely more active, they didn’t get rid of the tendon inflammation. My own rheum was willing to put me back on the biologic medication but eminent professor bloke says because I don’t have a specific connective tissue disorder in his eyes, he’s not wasting nhs money.

He’s convinced everything is mechanical. I’m waiting for him to start blaming my weight (thanks to years of prednisolone for my eyes)

I have wondered about EDS but I don’t really fit the profile for the different types. I am hypermobile (or was until this happened now my tendons inflame and cant move at all).
I have considered behcets before but the doctors never have. I paid privately to see a rheumatologist at the start when my eyes were a problem and I was quickly seen by nhs soon after at his clinic - I couldn’t afford to pay privately now. I can’t work and my DH doesn’t earn enough for us to spare the £250 we’d need.

Hash is my last resort. I can’t smoke or bake anything right now and as much as my eldest loves to bake I’m not sure I can ask them to just add this wee herb and whatever you do don’t eat the raw mix... they’d be affronted if they knew. I’m not sure how hot i’d be on the childcare front when stoned either.

I’ve ordered some CBD that was recommended by my DHs friend who had a meds unreactive RA so I’m really hoping that helps.

I think I will ask about a pain specialist. I didn’t even know such people existed. As long as it’s not Fucking mindfulness.

Ask whether palliative care would be appropriate for you (it isn't just fro end of life care) - they are pain specialists, ask fro an urgent referral.
Also - tell them you cannot go on like this, and it is severely affecting your mental health.
My DD's best friend has EDS - and she is now on morphine which has helped comtrol her pain - she had a fight to get it, but in the end her Mum went with her to appointment and abscially said they weren;t leaving until they got something effective.

When you see doctors take a list of everything you want to bring up, all your pain symptoms all the effects on your mental wellbeing and say what you want the outcome of the appointment to be, say you want a clear plan for the future and frequent check ups. Take out your notebook with your list and tell them you want to get through all your points. Don't be rushed or fobbed off.
There are options that could help you - physio, hydrotherapy, different drugs.

I wish you luck - chronic severe pain is terribly debilitating, and specialists often dismiss it because they are more concern witht he disease itself rather than it symptoms.

Hi there. Pain management clinic is a good first step, as is a Rheumatology help line of they have one.

What I'm confused about is if you have a rheumatologist and a diagnosis of mctd why don't you have a contact/treatment. Who diagnosed you, and have they done anything since?

Anyway, re: tests

Ana: positive in 5 percent of population anyway, but a first line screening for auto immune. It comes on titers and patterns. Titers begin at 1:40/80/160/320 etc. Higher the number the more positive. The pattern is also indicative. Homogenous/nuclear pattern is noir likely to be lupus, a speckled pattern Mollie likely to be mctd. There are a few others but those are the main patterns.

ENA: another autoimmune screening test, usually only done if ana is positive. It tests for antigens, so if you Google most of the elements will begin with anti. Antigens are auto antibodies produced when the body is attacking itself. These tests are more specific than Ana. There is a 4/6 panel test.

The four test for mctd antigens, lupus markers, and sjorgen syndrome (2 types). The 6 panel adds scleroderma and Polymyositis/ fibrosis. There are crises overs between because that's how autoimmune are, but these are the bare bones.

ESR and CRP bloods are routine general, ESR shows inflammation. Should be between 1-20 for women depending on the lab. Mine has been in the 200s which is ridiculous, but a clear heads up to doctors that it's not right lol. CRP is roughly the same sort of test.

My knowledge drops at this point unless it is lupus related. The tests advice are usually the order, apart from esr as crp which I forgot to add in first because they are basics.

Get these tests done, and a print out of results, and that's your starting point.

firstly though play hell with Rheumatology, asking what you are supposed to do, why are you getting left in pain, get someone else to fight for you if you're not up to it. If no luck, get onto pals and use them.

How are you feeling today? Xx

Thanks @domton - it’s definitely not lupus. I have had those tests at ophthalmology. They ran quite a lot but only think that showed was positive p-anca

Why are you not on any treatment? Why did they run auto immune in opthamology?

Outs a minefield. I so feel for you, one spent many days wondering what the point was and what the hell I was gong to do. I started new meds a fortnight ago and they are game changers. I'm pain free, so hold on in there, it is possible xxx

If you are flaring this hard you need steroids, and your rheumy should prescribe them. Xx

Hi chopmyarmsoff what you describe with regard to being unable to move because of the pain sounds very much like how I was before my diagnosis.

To cut a long story short I started with shortness of breathe over summer last year which got progressively worse by December I’d developed severe pain and swelling in my joints to the point I couldn’t squeeze toothpaste out of the tube as well as unable to breathe. Anyway eventually I was diagnosed with myosotis with ILD and pulmonary fibrosis.

Initially all my bloods were normal but then my CK levels became raised. I however had a close family member who is a doctor who actually was able to fight my corner and get the doctors to listen.

Really hoping you get to the bottom of things.

Sorry myositis

You have had good advice. It is clear A+E is not appropriate. They are not specialists, all they could do is refer you back to your GP.

See your own doctor and ask for a chronic pain/pain management referral. Good luck.

Has anyone ever mentioned Thoracic Outlet Syndrome. There are three types...one type (which I had) causes veins in neck/shoulder to be compressed by your first rib or an extra rib, and causes swelling and loss of blood flow into arm. In my case it caused a blood clot and I had to have my first rib removed. In can also effect nerves and arteries.

If the mtx and humira helped to a degree then this shows your problems are indeed from the inflammation.

I'm a bit groggy at the moment due to a flare so may have missed it, were you taken off the meds?

With extreme pain, I would definitely go to A&E, it is an EMERGENCY if the pain is intolerable.

Maybe they won’t help but maybe they will. There is only upside.

For those whinging about ‘wasting’ NHS time, are you really embracing a health service which leaves people suffering...in the 7th richest nation on Earth?!

Going to A & E with a mild sore throat=time wasting. Going in with severe pain is asking the health ‘service’ to do its job.

It's not a case of wastng their time in my experience, it's a case of wasting your own time because they are ill equipped to deal with pain from systemic inflammation.

Painkillers including opiods rarely work, so that's their first line of defense out of the window. The second line is anti inflammatory meds which she can't take. The third line is steroids which they rarely prescribe and usually at too low doses.
What the op meds is a proper treatment plan with dmards/biologics/ steroids/immunosuppressants or a combination of the above. This is not under the remit of a&e, and even if it were, they don't work instantly so she'd been in for weeks if they don't treat the current flare.

This is why I suggested ringing Rheumatology, or asking her gp to ring the on call Rheumatologist for advice. A&E will keep her waiting, give her opiods and tell her to see rheumatology. That's a lot of wasted time when you're feeling like death, to say nothing of the emotional crash when you realise they haven't done anything.

This is my experience. I know it's not the same for everyone, but that's what I would have meant if I'd asked what a&e would do.