Neck Pain

[hanb27]

Does anyone else suffer with neck pain? Mine is currently so bad that I have to either lay down or feel like I need to physically support my head! Any tips would be greatly received!

[Chicklette]

I have had this problem on and off for about 10 years, and it's pretty constant now. I've had x rays which show some wear and tear, so there's some arthritis now. To be honest I end up relying on painkillers and simply trying to find a comfortable position, which is easier said than done. Lying down with a pillow folded over under my neck helps a little, and sitting with my neck leaning forward takes some of the strain off the vertebrae. A heat pad can also help sometimes, and a good neck massage by someone who understands the problem is good too. Sorry I'm not a lot of help!

[farmerfester]

Hi I have it too had to give up work with it heat pads will help for me I need to keep head pointing straight forward but most of all before it floors you as it did me be careful what you do don't lift to much and rest now and then what meds do you take

I take tram adolescent and pregabalin take care g

[farmerfester in reply to farmerfester]

Tramadol I mentioned

[Barnclown]

Am feeling for you big time. My version of neck pain started in the early '80s and blighted my life for at least 30 years. During those years i conscientiously tried everything imaginable....you've got some good tips already from chicklette & farmfester....they suggest stuff that helped me cope too. I got to the point of not being able to hold a book up to read because my arms were so affected...but hey, I could barely hold my head up in any position for any length of time to read anyway.

Otherwise I'd suggest: the alexander technique, tai chi, & also: cervical collars (I wore a soft collar covered by a scarf all the time, and slept with it on too). During these 30 years, the infant onset SLE underlying my health probs was unrecognised...now I suspect some lupus-involved synovitis may have been involved, because the top spinal joint is synovial and my version of this did improve when I started on hydroxy 4 years ago (as I understand it, the only synovial spinal joints are the top cervical joint & the sacrum)

Anyway, I'll just add: how long have you had this pain? And has the cause been investigated thoroughly? I ask because for many years, I lifestyle managed & did the alexander technique & let chiropractors crunch my neck (never helped, oh dear: was a BIG mistake) & took my gp's prescription analgesics until an episode in the early '90s of 'locked in' syndrome saw my mother-in-law take me to A&E where an X-ray found a pronounced kink in my neck....as a result, I saw nhs rheumatologists & ortho surgeons who did MRIs& said: normal wear & tear, take prescription opiates & analgesics...meanwhile the right side of my bod developed persistent numbness with foot drop...I was a mess, v depressed & walking with a cane

but eventually in the mid '90s an nhs neurosurgeon booked me for a double cervical discectomy even though I had no cervical spine nerve root or spinal cord impingement. At the last mo, I persuaded neurosurgery to refer me to the pain clinic...where a hero consultant diagnosed Hypermobility & facet joint misalignment complicated by tendon tightening (my impression is that tendon tightening IS very revealing: more typical throughout the bod in lupus patients than is commonly realised....usually tendon tightening is diagnosed in the hands, less often in the feet & legs etc). This consultant then began a series of diagnostic facet joint injections (steroids etc) which worked well to numb my pain somewhat, so next he did a series of bilateral spinal facet joint Denervations...eventually my lower spine got the same procedures too....

All in all, after the denervations etc I spent years avoiding weight bearing as much as poss, conscientiously doing rehab including IMS (intramuscular stimulation: my pain consultant referred me for this special extra deep dry needlng) & kept at the Alexander technique + massage + gentle stretching exercises.

I now understand that, basically, because I was slow to get full-on diagnoses via imaging (MRI etc) my spinal pain had been allowed to become chronic, so once appropriate treatment began my version of this was tougher to treat successfully, and slower to respond. But hey presto: once a brilliant rheumatologist re diagnosed my version of lupus & started me on the right meds 4 years ago, virtually all lingering spine-related & referred pain melted away...at 61, I'm still very cautious about weight bearing activity....and I stick to the Alexander technique...but haven't needed cervical collars for years....and I can hold up a book to read no prob!!!!

Apologies for such a long detailed reply...but this subject is vvvv close to my heart.....who knows, maybe you or someone else reading this thread can benefit from my experience....

Wishing you relief from this pain...

XO

[Fighting in reply to Barnclown]

My doctors talk about spondyliosis (?) and osteoarthritis. I'm 64 and this is likely there but the pain feels more soft tissue. My fingers feel sprained after typing. I feel a pull in my arm on reaching to put it into a sleeve. I wonder if some of it is tightening of the tendons. I'll have to look up the Alexander Technique.

[Barnclown in reply to Fighting]

This does sound like tendon tightening could be involved. Physio exercises might help you....do ask your drs. Are you taking vit D...this can help too...but most of all, your lupus meds should be doing their job: without the right systemic medication, tendon tightening can be extra hard to reduce.

As I understand it, Spondylosis is basically wear & tear of the spinal joints. Osteoarthritis tends to develop in joints that have been subject to wear & tear. I'm diagnosed with spondylosis + osteoarthritis + hypermobility (globally: ie affecting most all my joints) and also injury to the cervical spine caused by a fall on my head at 7 years old (I.e. that kink A&E spotted on X-rays). It's that kink which set me up for extra wear & tear spondylosis & osteoarthritis of the cervical spinal joints developing much sooner in life than it would've without the injury (in my early 20s)...it took me YEARS to get this thorough a diagnosis of my spine condition...the final pieces of the diagnosis jigsaw were finally added when my version of lupus was diagnosed 4 years ago...leading to the diagnosis of tendon tightening, which has responded to my lupus meds...and it has turned out that my lupus was infant onset & went mostly without systemic meds most of my life...which explains why my tendon tightening was so severe so early in life

The Alexander technique is wonderful for us on many levels. Most people see it as a form of posture training. Of all the alternative or complimentary therapies I've tried, it is the greatest (but yoga & pilates & tai chai + meditation have also helped me a lot)

Good luck xo

[Fighting in reply to Barnclown]

I think the rheumy has me on the best meds for the present. I have seen him for 17 years now. He pulled me out of kidney failure and figured out what was behind my blood salt numbers dropping this past winter. Multiple teams of doctors and other medical personnel couldn't or didn't. Some of what is going on is genetic, osteoporosis and osteoarthritis run in the family, without the help of 26 years of Prednisone and Prednisone type drugs. The Prednisone resulted in AVN, hip and shoulder replacements. It is my understanding these replacements have a life of about 10 years. The left one failed after 12 years, more AVN and arthritis They found this fall this year. The right is 14 years post surgery, hasn't been x-rayed. Manipulation at a University outpatient site indicates the rotator cuff is gone in both shoulders. I have a weird walk and restricted reach so muscles and tendons are being used differently than God or nature intended.

I use meditation, mindfulness, did aqua aerobics in the past and recent past. I found 2 yoga classes which worked for me over the past 7 years. One aqua aerobics teacher used some tai chai to close the class but tai chai is difficult to find around here. I never heard of the Alexander technique before someone mentioned it on this website.

I get vitamin D, 800 units, in a calcium supplement. Doctor said I needed it. I've had falls, am clumsy, was in a car accident that put me in the hospital with a broken pelvis in my 20s. I'm 64 so there should be wear and tear in the spine. I think I will check into a soft back brace to attempt to improve the posture and breathing. I have Voltaren gel prescribed for thumb joint and wrist joint pain. Thanks for the reply. Based on what you said, I believe my line of thinking is not too far off.

[Barnclown in reply to Fighting]

I agree: I thnk you & your medical helpers are doing a great job....you're inspiring me! Thanks so much for telling me more about your situation. For sure there is almost never just one solution to everything. I hope you'll keep in touch. Am v glad you're here on forum. Am wishing you all the v best

[Fighting in reply to Barnclown]

I have no idea how medical care is set up in the UK but what I read makes more sense than the US Lupus support groups. I was told by the Indiana state site that they are really good for the newly diagnosed but don't have anything for people who have lived some time with the disease. "We're just not there yet." This did not sound good to me as I was still reeling from loss of job and my recent medical diagnoses. I hope we stay in touch also. I'm thinking about beginning to post once I figure out a few more things about how the website works.

[Barnclown in reply to Fighting]

Thanks fighting! This is so interesting. I have family in the states, and have experienced a lot about US health systems through them. But not regarding lupus treatment. If you feel like private messaging via this forum, I'm up for that

[Fighting in reply to Barnclown]

Private messaging may be a good way to go, but again, my computer skills need some enhancement. I'll need to figure out how to do it. I didn't grow up with computers like many have. I tried multiple ways to learn more with little success until recently. It looks like the local public library may have useful classes.

[hanb27 in reply to Barnclown]

Thanks for you in depth reply x I don't want to give a bad picture of myself, I have good days as well as the bad but I am soldiering on as it were and should probably seek some help. I am first trying to ascertain if it is Lupus related, am thinking after all these replies I will make an appointment with my rheumy xx

[Barnclown in reply to hanb27]

For what it's worth, I think you're pointed in the right direction & I like your attitude to this. If your pain ever persists longer than 3 weeks, I'd urge you to get your gp to refer you for proper investigation involving imaging (preferrably mri)

Since I first replied, you've had more great replies, e.g.:

agree mckenzie's books are excellent and have helped me a lot over the years... But if your pain worsens when you try exercises, please do stop and consult a dr

In the car I use memory foam lumbar supports & also seat wedges: the position of your lower spine definitely can affect your upper spine!

Therma care heat wrap products are the best I've found so far and I use them whenever I'm in spasm..Boots etc to them

I sleep on a tempur mattress, with tempur pillows: have tried loads of other memory foams & like tempur most

The explanation I've been given by rheumatology is that yes lupus can be implicated in any tendon tightening anywhere in the body. and lupus can be involved in any synovial joint pain (eg th very top cervical joint & the joint of the sacrum at the base of the spine, but lupus less likely to be involved in the nonsynovial joints that make up most of the spine. On the other hand, a highly lupus-experienced nurse also told me that her feeling is that lupus is attracted to any site of inflammation activity in the body, including non synovial joints. The clincher for me re deciding if my version of lupus is implicated in my spine pain, was when my daily lupus meds (hydroxy + amitrip + myco with pred tapers during flares) actually cleared up any spine-related pain that had not been numbed by the spinal facet joint denervation procedures. but none of my drs have outright agreed with me!

Wishing you all the best of success with lifestyle managing this & diagnosis + medical treatment xo

[Sallyk21]

Yes me! Not sure if mines the same but it started about 9 weeks ago with a headache just on the left side if my head. It's now mainly in the top of my neck on the left side near the base of my skull! I'm presently in hospital and have had several MRI and CT scans. They've found 'something' in the bone near to the pain but don't know what it is yet! Like you I feel like I have to physically support my head sometimes, especially when moving from a lying down position, plus it's sore lying on that side. The only thing that eases the pain slightly is tramadol. Hope you feel better soon and I'll keep you updated if the docs find out what this is x

[hanb27 in reply to Sallyk21]

Wishing you all the best with your investigations x Ive not had head aches with mine, it seems to stay in my neck, and feels like my head is too heavy for my neck to support it! When its really bad it make me feel sick x

[GloomyEeyore]

I am still waiting to be diagnosed but neck pain is one of my symptoms. It's not just pain but a crunching when I move my head. It varies between the sound of pouring milk on rice crispies, walking on frozen snow to a really load crack. Other people can't hear it make the first two noises but they do when it cracks. Sometimes it does what I refer to as a triple crack. This is when, in one movement of my head, my neck cracks three times in quick succession. That is when it causes the most pain. So far no doctor has come up with a reason for this happening.

[MrsMouseSJ]

Hi. I've had neck pain which flares up and down for many years; not sure if mine is related to SLE or not. I have found a good ergonomic memory foam pillow to be invaluable (although a decent one is expensive - £50-60). Also ensuring that I am well-seated - that is, with my bum firmly against the back of the chair and sitting in a chair that offers decent back support and isn't angled too far back, etc. However sometimes, for whatever reason, things flare badly and then I resort to drugs! i.e. Tramadol, sometimes Lyrica.

Best wishes.

[Fighting]

The left side of my neck is always tight and I wonder if I'm tilting my neck. It also feels different if I turn my head right or left. What I came up with was to roll my head around slowly in both directions a couple of times. I sound like your symptoms are beyond that. During the winter, I slept with low heating pad to keep my neck from getting tight. Good luck hanb27.

[Natura]

I take magnesium for relaxing muscles. It works for me. Vitamin nutritionist said good to take at bedtime.. Just watch that it doesn't relax too much (like your bowels. Ha!)

Sorry, have to throw humor in there once and awhile to keep from crying...Take care...