Sore neck and right shoulder.

[Nickymck]

Hi everyone. I have had SLE for 10 years, only recently got worse joint pain in hands,feet knees and butterfly rash worse on and off. But now I have neck and shoulder pain. Does anyone else get this or is it just a crick in my neck? Thanks for reading, this is my first post.

[Footygirl]

Welcome Nicky, you have found the best place for all your questions, rants and things Lupus related.

Someone will no doubt compare neck pain by and by on here. We are not short of experience on so many topics as I am sure you will know if you have been reading the posts on here. I've learned an awful lot by reading them.

I hope you are not far from that elusive diagnosis and will post again if you get the chance.

Best wishes to you

and gentle hugs OOOO

⚽️

[Nickymck in reply to Footygirl]

Thank you for your reply and hugs. Got GP on Thursday and started Methotrexate tonight. So will see what answers/results I get in due course. I have been reading and found it very interesting. And yes well done England ladies. The own goal was tragic, but they did fantastically to get so far.

[MaximumRide]

Hi Nickymck,

I get neck pain all the time. And get pain in the join where my shoulder meets my body. So bad I can't lift my arm. Heat doesn't help for very long. I've found rest is usually the only thing that does.

Hope it eases for you

😃😃

[Nickymck in reply to MaximumRide]

Thanks Maximum ride. Thanks fir thy our advice. Rest is not an option but I will try to do less. Work Ni very sympathetic to my invisible symptoms. Take care xx

[JL1w]

Hi I use to have horrendous neck pain and shoulder , constant sore ache and like a shouting pain every now and then ! I had a steroid injection x4 in the last 2 weeks my neck and shoulder have been marvellous might be worth asking if you can have one !

[EOLHPC]

Hi Nicky....This sort of pain is usually not something consultants expert in lupus will be quick to say is caused by SLE. In my experience, anyway, for what that's worth. But I'm hoping you'll get some interesting & helpful replies that give more insight into this. Well, for now I'll tell you a bit of my story....I'm 61 & have had a lifetime of neck & shoulder pain..which began to be a more troublesome prob in my late 20s.

my lupus is infant onset, but by the time I was into my 20s, that diagnosis had been lost, so NHS Drs treated my chronic n&s pain without ever wondering if lupus was involved....gps, orthodox surgeons, neurologist, neurosurgeons, osteopaths, chiropractors & physics + a bunch of alternative therapists all had a go at diagnosing & treating my n&s pain. mainly I was told it was down to a combo of things: my hypermobility + a childhood injury falling in my head causing 3 slipped discs mid neck. I was on prescription NSAIDs & analgesics for years & years...all they really did was make me feel like a zombie with neck & shoulder pain. NHS neuro surgery eventually gave me an appt for a double discectomy...this is major surgery, but phew I avoided that via insisting on referral to the Pain Clinic....where my neck was treated for many years with considerable success (but that's another story)

When my lupus was finally re-diagnosed 4 years ago, the vvvvv lupus experienced rheumatologist who was examining & diagnosing me listened to my n&s pain story & said she didn't think my chronic n&s stuff was down to sle. Later I found out that, in the human spine, the only the tip top spinal joint & the sacroiliac joints (the v lowest spinal joints) are synovial, and in lupus it is v unusual for non-synovial joints to be directly affected by the autoinflammation....(of course lots of human non-spinal are synovial..and are affected by lupus). BUT once I had been on daily hydroxy for a few months, the shoulder & neck muscle pain that had persisted despite Pain Clinic treatment had damped right down. And then, as I understood it, our specialist lupus nurse explained to me that it's possible for sle to somewhat cause extra trouble in soft tissues (muscles, tendons, ligaments etc) in parts of our bodies that have been affected by injury...especially if that injury is chronic (as it is in my case). So, I figure I'm an example of n&s pain caused by injury, which has been numbed at the source of pain (facet joint dysfunction + spnodylosis (aka osteoarthritis)) numbed by pain clinic procedures (facet joint denervations)), but which seems to have had some sle involvement because hydroxy cleared up any post pain clinic treatment lingering n&s pain. Eeeeek: hard to put all that into words...hope you can make sense of what am trying to say...

Interestingly, exactly the same thing has happened with my chronic lower spine (lumbar & sacrum) pain: pain clinic procedures (denervations) managed to numb the source of the pain, and when we added occasional prednisolone tapers & daily mycophenolate to my lupus treatment plan over the last 3 years, any residual soft tissue pain down there became much more damped down

I'll just add that lifestyle management, especially postural alignment and core stability training, has been helping me loads with this sort of chronic pain ever since it began to progressively disable me in my 20s. Things did, however, get so bad by my late 30s that I was lying down a lot, virtually housebound, walking with a cane & using wheelchairs & wearing cervical collars. It was several decades of bad bad stuff, in my case, but now I'm living without needing all that gear most of the time...haven't used a cervical collar or wheelchair in almost 10 years...and my feeling is that my oral systemic lupus meds have been key to this big improvement in my mobility & quality of life.

Hope there is something in there that is useful to you & others....apologies for going on at such length, but this subject is close to my heart...and it will be wonderful if any part of my tale can help even one other person...Nicky, your n&s pain sounds like it's not chronic....so, strictly speaking, that could mean your version of this is v different from mine....so, my feeling is that the best thing you can do is that if this pain persists, you'd do well to observe your pain pattern, note things down in a log and discuss this log with your drs....meanwhile see whether simple lifestyle management techniques can help (e.g. avoiding repetitive strains). Together, you & your Drs will decide if this is 'just a crick" in the neck or whether it needs to be further investigated.

Am looking forward to reading the replies you get

And am wishing you all the v best🌻🍀

[Nickymck in reply to EOLHPC]

Hi Barnclown. Sounds like you have been through the mill. A lot of what you have said is useful. I too have chronic lower back pain for 18 years now. Neck and shoulder on and off now for a few months. Worse each time it comes back. Been on hydroxy fir 10 years. Start Methotrexate last night. Got gp on Thursday and Rhuemy in 6 weeks so see what they say. Take care xx

[EOLHPC in reply to Nickymck]

Haven't many of us, you included, gone through the mill! Am v glad to have been of any help. Hope you'll let us know how you get on xo

[SjogiBear]

I also have persistent problems with my right shoulder, neck, shoulder blade and right through to the ribcage and down the top underside of my arm. This has been happening for several years now. My rheumy gave me a steroid injection into the shoulder which didn't really have much effect. I have also had a course of physio which loosened up the area but didn't solve the problem. Sometimes it almost feels as though my shoulder is falling away from the body and gives a sense of pulling on tendons and ligaments. The shoulder is also at a much lower level than on the other side and doesn't move properly - there is some impingement but it's not so bad that it should cause the trouble I have. I also have spurs on the vertebrae in my neck and my rheumy thinks this could be responsible for some of the pain. I am convinced that it MUST be at least in part due to the SLE/Sjogrens that I have had since childhood - I don't think it's quite as bad since I've been on hydroxychloroquine but maybe I've got more used to it. I don't know if this sounds like what you're experiencing? I was also told to use a TENS machine for the pain which you could also try as well as heat pads etc (you can get some which are specially shaped to go around your neck!).

[EOLHPC in reply to SjogiBear]

Hi Sjogibear: are you diagnosed with hypermobility &, if you are, which type? E.g. I'm ehlers danlos type, with globally loose ligaments + sle aggravated global tendon tightening...which means I'm simultaneously floppy & stiff...this is definitely significant to my joint & soft tissue problems

[SjogiBear in reply to EOLHPC]

Hi Barnclown

No, I've never been diagnosed with hypermobility but I suspect that it is an issue to an extent. I have always had various double jointed fingers and a thumb (not all of them!) and my elbows would frequently go out of place and I would have to twist them back. It's not something that the rheumatologists have ever paid any attention to - are you based in the UK? I now see one of the main UK Sjogrens specialists who is very good compared to my previous experience of rheumatologists! When I was a teen then my joints were much more of an issue - now I'm in my 40s the whole picture has changed and it seems to be more muscles, tendons, ligaments etc. Is this something that you have found too?

[EOLHPC in reply to SjogiBear]

Thanks for your interesting reply! Yes, I'm in the UK..am British & have lived here since the mid '.70s.

I guess I could say my joints were several degrees more troublesome when I was younger, e.g as a teen I had a lot of knee joint pain.

my impression is that with age almost everyone has a degree of tendon tightening. in more unusual cases like ours, where autoimmune inflammation affects us with accelerated tendon tightening, this can mean more probs with ligamentous laxity & muscle pain...my impression is that this is at least partly due to the imbalance caused by our accelerated tendon tightening....especially tricky for those of us who are hypermobile. And sjogrens gets just as involved in these issues as sle.

[Nickymck in reply to SjogiBear]

Hi. Thanks for your advice. Yeah my arm feels like it has been pulled put of the socket. The joint is crunching and can be heard and felt when I try to mobilise it. I am sure it is lupus related. Been on Hydroxy for 10 years so that is not going to make a difference ☹ take care xx

[Nickymck]

I also have hypermobility in legs , arms fingers and thumbs. My new Rheumy consultant has stressed this can be a contributing factor to the pain in my joints, especially my knees which I have had tendon operations on both in the last 3 years. It just goes on and on and keep getting new stuff to contend with. I used to read all your post and comments and be thankful that I was not as bad as some if you but now I think I am catching up unfortunately. Xx

[sandwiches]

I also have the same neck and shoulder pain. I notice it more when the weather changes. There is nothing I can do about it but just rest and not go on the computer too much!

[Cas70]

I have this and have given in and bought a V Pillow (cheap one and SOFT on the advice of my chiropractor ) - it’s worked brilliantly when I watch Tv or read but can’t sleep on my back. I then bought the softest pillow and I put that on its side and rest my neck on it for sleeping. My pain has eased amazingly. Chiropractor thinks we are tense all the time with our illness could find no other cause. Good luck.