Unbearable shoulder pain

[Ckonly]

Hi I’ve been diagnosed with lupus/RA for over 6 years now, I usually have a steroid injection in my shoulders every 6 months, I’m overdue at the minute and the pain is unbearable tried everything ! Rheumatology say they are not seeing anyone until June and my doctor says there’s nothing he can do and just upped my steroids , I’ve not slept for days now properly, I feel lost I have 3 small children to care for can’t use my right arm at all just constant pain! I’m in the cornwall area, does anyone know if I would be able to go a &e? Just don’t know what to do!

[svfarmer]

Hi I really do sympathise with you, I get a steroid injection in my knee every 6 months, the last one my GP ministered and just didn’t work unlike my rheumatologist which always gives relief, must be so tough having 3 small children to look after with this pain - maybe phone nhs 111 and get their advice, they may be able to book an appointment for you to be seen , worth a try xx

[Willow1414]

Dear CKonly

I’m wondering if you try again on the rheumatology help line , sometimes another nurse might take a different approach and sort this our for you ..

I think Calling 111 and discussing it with them , you might be able to get it at an out hours doctors ?

Do hope you get sorted ..

🦋❤️

[Ckonly in reply to Willow1414]

Thankyou so much I will try again .

[happytulip]

I really really feel for you because I rely on infusions and injections of steroids to have a functioning shoulder.

In all honesty A&E will do nothing other than give you pain killers I suspect. I used to work in A&E and methylpred injections were never given, it's just not what they do.

I suspect you've tried absolutely everything possible. I'm just thinking outside of the box here but I was extremely surprised by the results of CBD cream that I bought from H&B. It cost a fortune but really helped. It's also helped my bursitis.

I hope you get some relief and range of movement back. I really feel for you x

[Hidden]

Have you tried arranging your pillows so your shoulder isn’t taking any weight, and your spine and neck are aligned? I even saw a special shoulder/body pillow the other day. I know this won’t take away the inflammation as the injection will but in the meantime it could take pressure off your shoulder. I have it too, but not as extreme. I have found some exercises that help too. Try YouTube. If you don’t have any pain med can you take acetaminophen 1000 mgs 3x a day? It could help.

[Waulahn5]

So sorry for what you are going through. Invest in a tens machine if you can,they are not expensive. Maybe that would help? It has helped me.

[FGrant13]

If you can it may be worth going private for the one appointment. I had similar issues and I also have small children and it was almost impossible as you can’t pick them up without causing more pain.

[rodders1941]

Ckonly hi sorry to hear you are in difficulty ,yes you can go into A & E thats what we pay for ,

the NHS is not a charity we the common people have paid it , please go in to your A & E lm sure they can help you . take care and god bless Rodders 1941

[CecilyParsley]

I am so very sorry that you are in such pain. I cannot imagine how hard it is for you with young children. I do not understand why your GP cannot do the injection? My GP did mine in my shoulder after a dislocation. I hope that you get some resolution. Xx

[happytulip in reply to CecilyParsley]

It all depends on the scope of practice of the GP in my experience. Most aren't trained during their rotation to do IA injections, but if part of their training landed them 6 months in orthopedics or rheumatology then you might be lucky.

Equally, some GPs go on to extend their practice by doing injections into joints which is so extremely helpful because it doesn't mean ringing around on Rheumatology help lines etc.

I know in A&E we never did them because it was seen as a long term treatment which meant that it should be done by someone with the skills, consent forms need to be done etc. Instead they would just give out boxes of pills but when you need a steroid injection nothing else will do, in my experience anyway.

Things may have changed now but I don't know. I think this pandemic will bring about alot of changes that benefit patients eventually. At least I hope so.

[Loopyru]

Hi am so sorry that you are in so much pain. It’s even harder when you have young children. I too have shoulder pain but only intermittently but I find a warm/ hot wheat bag really helps if you wedge it in behind your shoulder and lean on it . Take care and hope you get some help soon

[Ckonly]

Hi everyone I’m new to this page only found you last night ! Can’t believe I haven’t known about it before in 6years! I’ve just been on the phone to a lovely rheumatology nurse, bit different from yesterday’s experience! So glad I tried to ring again! She’s going to speak to a registrar and hopefully get me in to go to Truro hospital , so fingers crossed . Thankyou for all your replies, it’s wonderful to know there’s others out there in the same boat! X

[happytulip in reply to Ckonly]

That's brilliant news!! I think medical teams are beginning to realise that regular patients are missing out on their routine treatments and that they need to be a bit more proactive in helping non covid patients during this pandemic.

I really hope they can help you and it makes a world of difference to you.

[CecilyParsley in reply to Ckonly]

Oh that is amazing news. Well done for persevering. Good luck xx

[daniel55]

Hi Ckonly sorry to hear your situation because I know exactly what your going because my shoulder has been killing me for months waking me all hours of the night pain in my upper arm for the last few weeks and now right down to my fingertips nearly in tears and not knowing what to do with myself can't put my bra on myself or my tops without help I asked my gp but they have an assessment list before you can have treatment or referrals which is 50 weeks long there are no private clinics for steroid injections at the moment (that is how desperate Ihave been ) rheumatologist said he wants me to have physio before he will give me a steroid injection but I guess the waiting list for this will be just as long. I do really sympathise with you being like this and looking after 3 children. Have you tried putting a hot water bottle round your neck I find this soothing sometimes or I have had recommended to me to lean forward and bend over slightly and let your arm dangle down beside you and swing your arm backwards and forwards it is supposed to loosen up the joint hope you get some help soon, big hugs and good luck xx