I am in so much pain that I just don’t know what to do with myself. The pain is across the bottom of my back and stretching down into my hip has to be the worst I have ever had. I have just come home from hospital after 2weeks & the doctors said there is nothing more they can do for me except for painkillers & I am up to my eyeballs on morphine. The said they will ask myGP to refer me to a spinal hospital (does anyone know of a good one?).
I can’t even stand up straight anymore. I was on Mtx for several years & it didn’t help so I was changed to Leflunomide back in February & that isn’t helping. I have been waiting for a shoulder replacement all year & it has now dislocated. The surgeon is going to try to put me on his list for the op for this Thursday. On Tuesday I have to see him & have a pre-op & another MRI & see if the anesthetist will agree to the op. I am really worried over if I am fit enough but the shoulder needs doing quickly . I am at my wits end with pain.
I can’t think of anything to say to help Holly-willow so I just wanted to say how sorry I was to hear about your pain and to send you a big hug. I hope your shoulder at least can get sorted on Thursday 🤗
Have you had an MRI of your pelvis / hip area. I was in similar pain last year and after my second visit to a a new physio he referred me for private MRI scans and it turned that as well as lumbar spine problems and a few other things I also had a fractured sacrum - the GP I had spoken to on the phone refused to even consider sending me for an X-ray - said ‘at your age (73) it’s probably just a touch of osteoarthritis.’ So if you can get the lower back pelvis area scanned that would hopefully show the cause of your lower back pain.
I’m afraid I can’t think of anything to help your poor shoulder - it sounds like you are in agony, look after yourself in the meantime and hopefully you will be fit enough to have the op on Thursday.
Just wanted to say how sorry I am that you are in so much pain. I hope that you will be able to have the op on Thursday and hope also they can make you as comfortable as possible with your pain in general. Sending some warm and good wishes. Take care x
I really hope the surgery on your shoulder goes ahead holly-willow and I'm sorry to hear you're in such pain. I hope you get a referral to a spinal hospital asap and that you can get the help you need soon. xx
I agree, RNOH, Stanmore is a wonderful hospital. I feel very lucky that it’s my Rheumy hospital. 3 years ago I had the worst pain ever in my back, going into my hip & leg. Was worse than any RA pain I’d ever had. Luckily my Rheumy clinical nurse referred me to the spinal dept there who arranged an MRI which showed my L4/L5 had prolapsed which was pushing on the nerves. I initially went down the physio route but I was still in a lot of pain so eventually had a caudal epidural spinal injection. Luckily this worked however at the same time I had a programme done for me in our local gym, the guy there was very experienced with rehabilitation, etc. Stretching out the spine using weight machines really helps me, last week I was suffering with my lower back but doing the weights at the gym has eased it a lot. Movement 100% helps though I know this is really hard to do if the pain has got so bad & you just want to keep it still & lie down. I really hope you get the referral you need & your pain eases soon. Also I understand what you say about GP’s, I had a bad RA flare up in my shoulder a couple of years ago, went to my GP who just have me painkiller saying I had a frozen shoulder, luckily I’d also emailed my Rheumy nurse who got me to go in the next day, I had an ultrasound/x-Ray which showed it was an RA flare-up & so they gave me an injection. Good luck, I hope you feel better soon.
Sending empathy for the pain you're in. You don't know what to do with yourself when it's so bad. I'm really hoping it all comes together & the op goes ahead on Thursday. My h needs a shoulder op but they won't do it because of his heart, not even by nerve block. He can't take anything stronger than paracetamol & the GP who does steroid injections is on indefinite leave. Crazy state of affairs. Hoping your recovery is as smooth as it can be. Also hoping you can meet with your Rheumy asap to address your meds as they are clearly not doing as they should for you.
keep after docs. Friend recently in agonizing back pain. Docs said nothing to do for her. Just kept saying osteoarthritis. Was not even getting pain meds. Turns out she had malignant tumor on spine. Very serious and aggressive.
sorry to hear your struggling and hope your surgery goes ahead. I worked as an orthopaedic nurse for over 30yrs. Stanmore is probably the top U.K. hospital especially for those needing complex surgery. I would push for a scan of your pelvis, to find the cause of your pain. Stoke Mandeville in Berkshire is also a specialist spinal centre.
I too have quite severe lumbar pain which radiates into my hips and groins.
The neurosurgeon won't operate on me further due to my RA being out of control and me still being on oral prednisolone. I will be reviewed early next year. He doesn't believe that a lumbar fusion would solve my pain issues.
My rheumatologist says my issues are not RA related. I'm changing meds at the moment.
50 metres is around my maximum walking distance without extreme pain atm.
I would be interested to hear if you get any success in pain management or increased mobility.
This sounds very much like severe sciatica, Holly. Back in 2006 I had it and because there was a five month wait for an MRI scan, way back then, I paid privately to have one. I had two bulging discs in the lumbar region and the Physiotherapy Department were giving me the wrong exercises to do...making it worse. Hopefully someone has already organised an MRI, if not do ask about one. Xrays don't tell the story. If they find you have a similar problem an injection into the spine can work wonders...it is a quick procedure and usually added on to the end of a surgical list. My lovely GP at the time, sat back in his chair, chuckling away with the words...It's a hell of a pain, I know, but there is nothing that I can give you that will take it away. What did help me was not doing anything over Christmas and New Year, not even making a cup of tea, at the insistance of my husband. That complete rest helped no end, but I am aware that not everyone has the luxury of being able to do that. I hope you can get some relief soon...it's a 24 hours pain! xx
My niece gets this, the only thing that works for her is going to an osteopath, or getting a Thai massage.
oh holly-willow I'm so sorry you still have all the pain. I cannot believe they discharged you without finding the cause/causes. (Well on second thoughts yes I can believe it). I pray you get your shoulder sorted tomorrow. I'm still on the morphine and co-drydamol. My back is slightly better I can now sit in a chair for a little while and my Rheumatologist is organising a back X-ray for starters. But the nights are still he'll. Let us know how you get on. And just know we are always here to moan at, shout at or whatever you need to not feel alone.
Morning, I presume you've tried heat packs and/or wrapping up in a heated blanket. Sending you healing thoughts and to all others in a similar position.🐕🐕🐕
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
Sending lots of loving thoughts and prayer for a smidgen of improvement and healing to make it more manageable. Pain is horrible. Could you try some medication for the pain such as nortryptaline? I take a small dose at night for nerve pain related to the spine (not RA related) as well as pain medication and it does help.
Hope you have some good news from your visits. Do emphasis how bad it is and how much it is effecting you. xx
I'm so sorry for you, I know what pain means, only cortisone works for me, with it I'm afloat and sometimes I even have normal days... May God enlighten the doctors, that they can somehow help you as soon as possible !
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So much pain all the time! Hands feet & back!!!!
Other people seem reluctant to believe I am really experiencing so much RA pain and fatigue.
Dr's say my CRP levels seem fine, so why am I in so much pain?
How much pain is normal?
So Much Better.Mattcass
