Last night, the pain in my shoulder worsened. I've had no sleep as can't physically move. Only way I can move arm is by lifting it with the other and it's so painful, I cry and come out in a cold sweat. I live alone and I don't even know how I'm actually going to get up. Does anyone else have this? Never had this before.
Excruciating shoulder pain: Last night, the pain in my... - NRAS
Excruciating shoulder pain
I feel for you.
I had a terrible couple of months with my shoulders when I stopped taking meds. I had great difficulty trying to sleep as I couldn't put any pressure on them at all and had to try and prop myself up with with strategically placed padding that did little to help. This was about 3 years ago and I've had trouble with both shoulders ever since, though thankfully not as bad. There are few days that I can raise my arms above the horizontal. I can sleep ok most nights now, but occasionally do have trouble. It's usually just one or other of my shoulders that tend to play up, which is not too bad as it's easier keeping my weight off one shoulder than it was when both were playing up.
Hope they ease up soon.
Thank you. This is a first for me and I wasn't prepared. Think it's time I start delegating stuff to my team (I run own business). Feeling rather sorry for myself then I look at what I'm wearing and giggle. I'm not exactly fit for visitors shall we say!
Neither was I prepared! Don't think I had so much as a twinge in my shoulders prior to stopping meds.
I hadn't. On Methotrexate injections, Hydroxychlorochlorine, Pred and adding Sulzapedine (I think it's called).
Like Hessie your post brought back memories...when I was first diagnosed ....in 1999.....I spent days in my pj's unable to move one arm or the other.
I too live alone, & lived on anything I could make with one hand...couldn't lift kettle so boiled water for tea/cuppa soup in very light camping kettle, couldn't wash hair, stood in shower then tried to drape towel over bad shoulders & another round waist & waited 'til I was dry.only blessing was I rarely had the pain in both shoulders at same time.
But be assured this does pass. As soon as you are able, get back to your rheumatologist for advice.......maybe a Depomedrone injection would help, but as this shoulder pain usually resolves after a few days it's difficult to judge. Do ask again to be assessed for your DAS & see if your rheumy can apply for funding for a Biologic.
There were no Biologics as we know them now "back then" when I was diagnosed, & in the end Mtx was my saviour.
By the way......do you know how much Biologics cost? You can't just pay NHS for them, you'd have to go privately & the drugs alone cost thousands. I'm on RTX & I'm told at my dose it costs £10k pa.
Hang on in there ...it will pass.......
It is about 10k and would pay if I had to. I run a business and have a team working for me so I'm fortunate that I would be able to to finance it.
Unfortunately it doesn't end with the cost of the actual drug....depending on which Biologic you are prescribed, you have to pay to have it administered,& the consultant's fees, plus blood tests, Xrays & any other tests you might need.
If you have a private rheumatologist you could ask his /her secretary to give you an estimate. I recently had some private treatment & the Private hospital charged a huge fee ( in fact more than the Consultant's fee) for me to walk into the consulting room & sit down! But it was a one off (not RA related ) & so I thought it was worth it.
But if you are in so much pain why should you be forced to pay?
As I said before....try to get a new DAS......this last episode may just push it over the magic number& your rheumy will be able to prescribe a Biologic on the NHS.
Good Luck, I do hope you get a break very soon.
My client base is private consultants. I might try pulling in a favour or two 🤔. You're right though, I never use the NHS, never had anything wrong so perhaps it's my time 😊
Me too! It was so soooooo bad! I cried took morphine the works while waiting to get to Rheumatology! Methotrexate and steroids helped big time!
When things are bad I say to myself it's ok...it's not as bad as it was but at the time it was horrendous and a real struggle site I empathise ((hugs)) M x
Hideous isn't it!
My PT at the fat club used to encourage me to push past the pain. Just wondering what damage I was doing.
I have noti d if I wear a tee shirt at night it sure helps
That doesn't sound right to be honest. The pain I had was only sorted with morphine. It felt as if it was broken. Horrid
Call 111 and see if they can get you an ambulance darling.xxx
You have my empathy. For some reason problems with the shoulder affects everything we do, I suppose it's that we use it so much without thinking that when there's pain it's constant, rising to a crescendo when we attempt to move it. The thing is if we don't then it becomes stiff & then the pain worsens! Plus it's a pretty major muscle so it's a difficult one.
I find that an electric heat pad helps though some respond better to cold so you could try either. If you're prescribed an NSAID then continue taking it as advised, if not you could ask the Pharmacist, they may suggest something like ibuprofen & paracetamol at recommended regular doses until you can be seen. If you can't take either then ask about a topical cream or gel, Voltaren or Ibuleve or similar may help somewhat. What really solves my pain though is a steroid injection. I've had two to date, the first I had administered to the back of the shoulder was given by my Rheumy's Registrar & lasted around 6 months, the second one done by my Rheumy & administered to the front is still working 8 months on. Maybe call your Rheumy nurse on Tuesday, see what she makes of it, or see your GP.
I hope something helps, it really is a rotten pain.
I've seen the out of hours doc, very nice man and very compassionate. Short intensive course of steroids plus stronger pain killers. Neither naproxen or paracetamol were touching the sides. Hopefully, it will calm down a little now and I can get a bit of sleep. Of course, it would happen on a bank holiday - I don't do things by halves 😀🙊
Oh good. I hope the steroids work quickly & the pain relief too. I'm a left side sleeper & oddly enough I could get comfy lying on it. What helped though was before settling I lifted both my arms above my head & crossed them so they were hanging over my pillow. I have a box pillow & doing this seemed to release the painful area. It probably sounds daft given how stiff they can become. Obviously this was only once the steroid had worked & may not work for you! Fingers crossed you have enough relief to sleep better tonight.
Are you from the north? It's just I also say (pain relief) doesn't even touch the sides & not seen anyone else saying it here. ☺️
It is easing now so I think the steroids are starting to work. Honestly, I have never felt the like before.
No, I'm in Norfolk - my Mum was from Barnsley though.
I bet you'll be pleased of the relief. I know what you mean, it's an awful type of pain.
Ah that makes sense. We do tend to take on our parent's colloquialisms.
It certainly is an awful type of pain. I get a constant variable toothache type pain in both shoulder joints, though my left is the worst. It seems to affect the full length of my arms. As usual mornings are the worst when both arms are enveloped in a sharp nerve type of pain. I have great difficulty moving them until my morning pain relief kicks in and I can spend an hour or so pumping iron. I'm good to go after that!....
My rheumy appointment's arrived, it's on June 28th. BARI here I come!...I think?
All too familiar Wishy, feel for you. My GP even took a separate ESR & CK to be sure it wasn't statin related.
Brill. That appointment can't come too soon. Thinking positively for BARI to bring control & nothing else! 😬
I’ve had a lot of problems with my shoulders. I had them X-rayed in the left one they found a fleck on calcium (not sure if that’s connected with RD?) I can’t take painkillers & I was in agony. My GP gave me a steroid injection into the shoulder, it’s been a lot easier since then but I’ve been restricted movement so can no longer do yoga 😞. Still doing aquafit though 😀
Yes I've had it the last week it's shocking I've had it before but it does knock you sick and brings tears, I'm on steroids stong opiates it's started to settle now but you are not alone we've all been there and so much support on this forum from people who understand take care x
Gosh me too. Left shoulder down the arm, feels like deep toothache type pain had it for 3 days and dont know what to do with myself. Its 2.20am cant sleep. Can take more pain relief soon which will help a bit. I feel like im going backwards af the mo. Hope you are all asleep.
Oh no! Since the doc came yesterday and left me with a hefty steroid dose and codeine, it's come right down now to a dull ache (thank heavens). I hope you're starting to feel better now. Have you called anyone?
Thats good to hear. Im on steroids and pain killers. No ive not called anyone. I see rheumy on the 9th June. Take care.
I am glad it is easing now for you, I had the exact same thing a little while ago but it was calcification in the shoulder rather than RD. I got an injection of steroids into my shoulder and it helped very quickly. Unfortunately with the calcium deposits it can happen anytime again. But at least I know what to do then. Hope you'll be ok soon and wishing you all the best!
Glad to hear it's easing, I'm on biologics but my left shoulder still gives me problems now and then. Have you tried a tens machine? I have found mine to be very helpful at times.
I haven't but will now 😊
When RA first attacked me, the shoulder pain was excruciating, also in most other joints and no drugs given.
That was in WV, USA. Nothing till you get a diagnosis, health care ruled by Ins policies.
Steroids and tramadol given at NHS Out of Hours service after nightmare of three flights home with wheelchair assistance and strong painkillers left over from major surgery 10 months earlier!
Urgent referral to Rheumatology after emergency appt at GP following the Out of Hours appt. I never want that level of pain again!
I used to lie in my bed in WV and go through all the times tables, anything that meant my concentration was removed as much as possible from pain.
The only way I got any sleep was by praying for everybody who came into my head.
So, I hope and pray you get relief soon.
I hope you're feeling much better now
That was Nov 2015. Been on four DMARDs so far.
Started leflunomide four days ago. So far, no side effects noticeable.
Really have had a lot of relief but nowhere near normal. OA set in too, so far no flare of that at same as RA flare! Don’t think it would be bearable!
My blood pressure is too high for leflunomide (I'm not surprised!). Looks like another GP trip tomorrow 🤔🙄
Not good! Hope your appt will be a positive step forward.
It's common to have more than one autoimmune disorder. I have had this pain and limited movement before and it was diagnosed as another autoimmune disorder referred to as "Frozen Shoulder." Cortisone shots into the shoulder along with physical therapy. Unfortunately, this disease lasts for many months.
Hi there I had the exact same and also live on my own that's actually where it all started also pain right across my ribs felt like they where being squeezed it did take awhile to leave me and now and again it flares up, I have a bar put on my bed you can take it off social adult services got it for me, but it really helped me sit up get up and turn myself over, but I'm afraid it does not take the pain away just helps I've only had this condition just over a year, so I'm tapering down from 40m to 12 half , I can walk much better but I do use a wheeler if I go out, I really hope it leaves you soon and I wish you luck!
Hi, I suffer with my shoulders too. The pain goes right down my arms. Turning in bed or even trying to sit up in bed can be a nightmare. Sometimes I can't lift my arms, can't hold a kettle, teapot etc. Getting dressed is difficult. It depends how controlled my RA is. It's not very controlled at the moment as I am in the process of doubling my leflunamide dose as I have had to come off the sulfasalazine as it caused bad itching.I really sympathise. A depo shot often helps me.
I had this last October and it seemed to last for a couple of months!!! I had to take to my bed a few times and stayed there for 2-3 days as the pain was so debilitating. It was also in my collar bone. At the same time I developed severe dizziness which was horrendous.
Fortunately my husband is a rock when I have a flare, he looks after my every need.
I’m glad to say that eventually it subsided but I do still have some continuous pain in my shoulder and can’t sleep on it either. But it is maneagable now.
I’d been so lucky up to that point as I’ve had RA for 8 years and only had the odd flare which lasted a couple or a few days.
Hope yours subsided soon and it will!
Stay strong and think positive.
I have the same problem. It is not RA and it's not the same as a frozen shoulder. At times it goes into my arms and left shoulder also. I take Dihydrocodeine and Paracetamol for OA - I know Steroids helps but because it'snot RA or polymyalgia I can't have them because of bone thinning, I do take them for COPD flare ups,that'show I know they help.
I am booked to see a consultant end of July, that's quite a while to wait.
I don't live on my own so I am lucky there-Not sure when I posted this as it won't help you, but shows you are not the only one,more common that I realised..
Wish you well .
The symptoms you describe were exactly the same for me at the onset of my RA condition. I literally couldn't lift up my arm to brush my hair (and I live alone btw). I completely understand the pain you have been in and the devastating effects lack of sleep can have. All I can say is that I gradually obtained a RA diagnosis and started on a journey of escalating-strength painkillers which bit by bit helped tremendously. Currently I am on injections of Benepali and Methotrexate (plus Folic Acid). I now get varying joint problems and serious pain sometimes but on the whole I manage and enjoy life so I hope you get the help you need.
I can sympathise as I remember the pain only too well despite it being 18 months since I had my second total shoulder replacement. I was shocked to learn I had OA in both shoulders and that the best option was surgery even though I was only 51 at the time. I’ve no regrets, get an appointment with rheumatologist and ask for X-rays if you haven’t already done so.
My shoulder pain is just like that too Finally a doctor took X-rays and my shoulders have deteriorated and I am told I need shoulder replacements. I am trying to find alternative treatments
I know it’s a shock to be told you need new shoulders but it’s definately worth it. Read my blog to get more insight. I only hope that when I need them eventually replaced I’m not too old to cope.
Oh, that doesn't sound good at all. Perhaps that's the best thing that could happen though? Thankfully, my pain has gone again now and it's happened just once and I'm hoping that's how it will remain!
I hope,you,find a solution so you can enjoy your life ❤️😄
That is the way my RA started
Yes very often, this how they know when I am having problems. X-rays seemed to show nothing but physical inspections show inflammation.
I've had that several times. Slept with arm elevated under a pillow. The BEST advise I can give you (I work in the orthopaedic field) is to #1) see an orthopaedic dr who can give you a steroidal injection and the relief should be very quick #2) Go to a physical therapist for a few sessions - some states don't require a doctor's order for the first 10 visits #3) take an anti-inflammatory AND do some at-home exercises. You can look on YouTube but 2 that I recommend which work for me is the following: Exercise #1)Stand facing a wall and place you fingers to the wall at a comfortable height & try to slowly walk your fingers up the wall as high as you can - take deep breaths if it hurts, then walk fingers back down...try that minimum of 5 times if you are in a lot of pain, then try to do 10. Exercise # 2) bend forward at the waist to a 45 degree angle (known as Table Top= as if a cup were to be place on your back). Gently do pendulum swings... go forward with the your, then back - just do this to what is comfortable. Exercise #3) IF you can OR in a few days if the shoulder starts to loosen up you can stand straight & try to raise your elbow laterally, then slowly lower it. I always take Motrin, Aleve or Ibuprophen before (if I needed it) and then ICE the area for about 20 minutes.
I had it for over a year. It was so painful and limited what I could do and the nights were hell. It tured out to be a rotater cuff tear and bursitis in the shoulder joint. After a cortisone injection into the shoulder and lots of physio it is almost gone. Guess it will never be 100% but it's bearable. Ask to see orthapedic surgeon who can find out what is causing it.
Hi I get the exact same pain it's horrendous. I had x rays on my shoulder and the consultant said it's wear and tare. The only thing that works for me is steroid injections. Hope you get some relief soon 🙏
I did 🥰. Morphine and steroids did the trick!
Hi - you certainly brought back memories. I also suffered with these it would bring tears to my eyes as you can’t not or turn due to the pain. Since the biologic I haven’t had such pain and I pray having said this it does not come back. I had to take pain medication and a hot Epsom salt bath. The pain will slowly subside, that’s the good new. Stay strong.
Think I'll give the bath a miss 🤣. I'll be there until someone finds me starved to death. It's absolutely hideous. I've been told my RA isn't severe enough for biologics. I'll pay for it if it helps.
Have got up, not exactly dressed to see anyone and taken naproxen and paracetamol. Hopeful it may ease off.
I'm pleased you're feeling better now 💕
Hi I've also suffered terribly from this "frozen shoulder" for past 2 years and only now after extensive physio and a cortisone shot is it starting to ease. Like u I had to use my other arm to lift it. Could not lie on it and pain would wake me up. I found that painkillers were a waste of time and also waiting for it to recover on its own didn't work either. It started to ease only after that injection and now I do exercises every day. My advise get the steroid shot don't suffer for 2 years like I did.
Hello I know how you feel. It's absolute agony. I really feel for you. My RA has been a bit unruly for a year now because of being on different biologics. On and off due to low neutrophils, so I wasn't getting ongoing medication. No one's fault, it's trial and error to see which drug will suit me. One thing I did notice though which I've never had before, and I've had RA for 29 years, was the shoulder pain prob. I've had frozen shoulder before, but crikey, nothing like this. I couldn't sleep on it, it felt like a nagging toothache all night. Reduced me to tears. I had to physically lift my arm, my shoulders hurt, What a state. Cramped my style no end. Anyway, without wittering on too much, my depo medrone shot was amazing, it saw me pain free over Christmas, I had another yesterday. They like 3 months in between. Start a new biologic in a couple of weeks, so hoping this one will do the trick. Naproxen, codeine, and paracetamol did zilch for me anyway. Fingers crossed. Good luck all of you.
Wow! It's hideous isn't it. Even moving a finger with my other hand made me scream. Thankfully on Benepali now and it's a dull ache. Can live with that.
I hope you find some relief soon.
I'm glad Benepali seems to be working for you. It's such a relief to feel even a bit better. Good luck with it all.