Hi,
I am a 73 yrs old male. I was reasonable fit until I started with symptoms 6 months ago and I finally got my diagnosis of Lupus in February 2025.
My treatment started with a steroid injection and twice daily 200mg of Hydroxychloroquine Sulphate. Several symptoms eased on starting the meds, however, I have substantial pain in one shoulder. It prevents me from sleeping and stays with me despite the usual non-prescribed 'off the shelf' painkillers.
I would be grateful for any advice please.
Welcome. I get intermittent shoulder pain. I say intermittent but once it sets in, it can last for weeks. Like yourself, finding a position I can sleep in can be tricky and it will wake me if I have compressed the shoulder during sleep. I now sleep with a pillow compressed into my chest as it seems to relieve shoulder pressure, essentially good pillows help. Heat pads are great for relieving pain too. Having said all that, the shoulder will suddenly switch off and I won't hear from it for ages!
You mention a steroid injection. Was this a general one or one specifically into your shoulder? If it wasn't specific it might be something to consider with your Dr. Have you got a specialist nurse you can speak to? My rhuematology department has a clinic specifically to give steroid injections for painful joints etc- this might be a something they can refer you if appropriate. Sorry I can't be more helpful.
Hi, thank you, that is useful. I haven't used the nurse contact yet although the specialist has mentioned into me. I will contact them next week. In the meantime I will try the pillow tip.
wow, I too have recently been diagnosed with lupus- January 2025- symptoms got real sometime in the spring of 2024. Started with medicines for rheumatoid arthritis-hydroxycloquin- now starting benlysta as well. My biggest complaint was shoulder pain in my left shoulder. It took forever to realize it had nothing to do with lupus and I eventually got an MRI and it is a rotator cuff issue. Who would have thought to separate the complications…. I’ve had so much Motrin it’s insane- I see the orthopedic doctor late May. I super identified with what you said. Thank you
Thank you that's useful to know. After three nights without sleep Im trying to get in touch with a Rheumatology person for some guidance. I am also suffering with acute agitation.
Hello. Shoulder pain was one of my first symptoms 30 years ago. Physio, hydroxychloriquine and antinflammatories sorted it eventually . Was called Frozen shoulder due to Lupus. It comes back mildly when I get low or a bit flarey, paracetamol and nurofen gel usually help. Spreads to my neck and I use a heated pad. Then it suddenly goes and turns up in my ankle or wrist , stays a while then leaves. Just weird Lupus stuff. Hope you get some relief from yours and can keep it at bay .
Your symptoms are exactly like mine. The nigh's are very long at the moment and I get highly agitated. That coupled with the excruciating pain prevents me from sleeping. Im trying to speak with one of the Rheumatology staff for a sleeping pill or something.
Hi Bo, for years I was getting steroid injections in my shoulder after the orthopedic doctor I went to had taken XRays and told me it was arthritis. When he retired, the orthopedic shoulder specialist he sent me to took his own XRays’s and then sent me for an MRI. It confirmed his suspicions that what I had all along was actually a severe torn rotator cuff. Unfortunately, since it had gone undiagnosed the damage could not be repaired and I had to have a full reverse shoulder replacement. Best decision ever. I have no pain and full mobility. Just to be clear, my pain was so severe, I couldn’t pick up the sheet in bed to cover myself. Now my other shoulder is in the same shape. I can no longer receive steroids of any kind because they make my glaucoma unmanageable. I also can’t have surgery on this shoulder because it would trigger lymphedema from having lymph nodes removed when I was 36 due to breast cancer. Now I take 1 Meloxicam am and 1 gabapentin pm and I also have hydrocodone for when I need it. The daily meds have been life changing in managing the pain. Although I was given a 2 month supply of hydrocodone for twice a day, I have only used about 6 over the past 2 months. However, my advice would be to see a shoulder specialist that takes MRI imaging beside just XRays to give you the best diagnosis because in my case this misdiagnosis went on for years and something less egregious could have been done years before to alleviate my suffering.
Wow you have been through it and suffered greatly. Thank you for sharing some sound advice that I will take on board. I hope your situation gets easier to tolerate.
I was in the same position as yourself only I had been diagnosed with lupus nearly 20yrs ago. My advice to you is don’t always assume that everything you have wrong with you is Lupus .
I had terrible shoulder pain 2 yrs ago and went to the physio at our GPs surgery and was referred to the MSC clinic and 18 wks later had a full shoulder replacement, and it has been a complete success. Since then I have also had a hip replacement last October again this was successful.
Please ask your team at the hospital to do a X ray , constantly having to take medication may not be the answer and further investigation may be needed to see what is happening within the joint.
I hope you get some relief soon as I know how difficult this can become to your wellbeing.
Thank you. I have a chiropractor in mind who I have seen in the past. She has treated me for various things. I will try a session or two with her,
That’s a great idea, wishing you the best of luck 🙏
UCTD, Joint Pain, Plaquenil
Painful lump
Painful Second Toe
Red painful sores on fingers 
