Shoulder and neck pain

[LupusNewbie]

Hi, I wonder if anyone knows what could help with my daily shoulder and neck pain. I have haven't seen my consultant since December last year, pre pandemic I used to see him monthly. I have Lupus for which I take 15mg pred a day, amazioprine and hydroxy. However I am in almost constant pain in my shoulder and neck. It feels like it is muscular and that if I were to rub it the pain would ease. But when I rub it there is no muscle pain at all. It is clearly not muscular but the pain is constantly there. I wake up in pain, go to work in pain, come home and don't interact with my kids as I should because of the pain and go to bed in pain. Ibuprofen will take the edge of it but I can't keep popping ibuprofen 5 times a day forever. Anyone got any ideas what could be causing it and more importantly how to treat it? My GP is lovely and wants to help but is clueless when it comes to Lupus and I can't get to see my rheumy. I have had pericarditis and pleurisy in the past year which is how long this pain has been going on for but I can't keep on like this. I am so grumpy with everyone all the time, I need this pain to stop. Thanks

[Spanielmadlady]

Hi It could be nerve pain .I have nerve pain in my hands and feet and my Rheumatologist prescribed pregabalin. Gabapentin is another drug.might be worth asking your gp as nerve pain can be part and parcel of Lupus. X

[Tanitani]

Hard to tell from your explanation. Maybe go to a physical therapist who specializes in trigger point therapy. I got rid of my neck and shoulder pain with that therapy but your pain source could be something else...

[LalSD]

I changed my pillow, and went on natural remedies. I have not looked back!!!I bought a support pillow from John Lewis(around £100), I ask the area to be massaged(daughter or a friend) with black castor oil and i take three days of anti inflammatory (prescribed medicine, brufen retard 800mg) and i put hot water bottle after the oil to allow muscle to relax over night or as often. At some point i did see a chiropractor in Stanmore who understand Lupus . Hope it helps. With best, L

[Hamptons]

Tens machine, been using mine as had horrid neck pain which gave me a headache.

[Paprika60]

I have had the same on going problem for over 25 years and it is also partially due to the nature of my work being a painter working on easel for a lengthy time. But I have resolved it once and for all by learning how to do self Bowen movement daily and also acupressure. You could probably try from Youtube clips for acupressure but with Bowen, you will need to learn from a very experienced therapist who is willing to teach you while helping you. The problem with weekly therapy is that we need more than once a week treatment. I have also had to learn to relax my jaw and massage the area often. Breathing in (through nose) and breathing out slowly through mouth for about 10 times will also relax you. Hope that helps.

[favour6]

Hi, sorry that you’re experiencing this constant shoulder and neck pain. What did your Rheumatologist say about it. Maybe instead of taking Ibuprofen all the time, you can rub diclofenac gel on the area you have the pain instead. You have to be careful with taking all the medications especially Ibuprofen because of your kidney. Because lupus affects most organs especially kidney. I was doing the same by taking Ibuprofen for pains. When I had flare up of Lupus, I then I have developed Lupus nephritis. I used to have constant pain on my right knee. After X-ray it was diagnosed as Osteoarthritis, which wasn’t even on the knee joint per say but head of tibia. I was in constant pain, nothing could help me until I found a seed based natural supplement called Rain Bend. It works magic on my knee pain that I don’t have it anymore after like four months of taking it. I am still taking it as maintenance. It’s an amazing product. No one should be in pain. My link to get this product is rainintl.com/Ng6

The food supplement seed product, will not prevent you from taking your prescribed meds as it has no side effects . Take care.

[Salzer]

Hi lupusnewbie. As others have said, I guess it depends on what the cause is but it's hard to figure that out ☹ I've suffered from neck and shoulder pain with related daily headaches for 2+ years. It's miserable. Have been back and forward to docs, started with GP on naproxen and etoricoxib, then physiotherapy, then asked various rheumatologists about it but nothing worked until new rheumatologist prescribed gabapentin. It has really helped and I'm (almost) headache and neckache free for 6 weeks now. It's such a relief. I also still do the exercises given by physiotherapy to ensure I don't seize up but much as I hate having to take more medication (I'm on similar meds to you), it seems that's what done the trick. Hope you can find a solution soon x

[CecilyParsley]

Hi I suffered for years with neck and shoulder pain but mine was sore to touch.I got relief when I went to a Chiropractor. Yes it was painful but afterwards no pain. He did the same with my feet and ankles. He used acupuncture which also helped. I hope you find something that works for you x

[FlorenceAllbright123 in reply to CecilyParsley]

Hi! Because of my work culture, I, too, experienced significant back pain for 6 months. After speaking with a doctor, he recommended that I seek treatment from a chiropractor( downsviewchiropractic.com/ ). I began seeing a chiropractor for my treatment, which consisted of strengthening muscles and moving joints in attempt to improve spinal support and decrease painful movement. I saw a significant change in my health after two months of treatment. I must add that I no longer experience any back pain and that it is worthwhile to try.

[BeeManShrop]

Hi LN This sounds like another case of rheumy neglect. If you are under a consultant, surely they have a duty of care to keep monitoring your disease activity on an ongoing basis and modify your treatment as the situation changes. It certainly sounds as though yours is still very active and not in remission. Do you have a helpdesk that you can ring? and don't let them fob you off with "just take more pain killers" -- that is what we have had for quite a few months. Eventually wifey did get a rheumy appointment his only suggestion re shoulder pain was a steroid injection by ultrasound. That was 6 weeks ago and still no appointment. In that time the shoulder pain has moved for right shoulder to the left and back again, hence we are not sure whether a steroid jab will do the trick.Perhaps a letter from your GP asking for a face to face appointment will start the ball rolling for you. Best of luck.