Neck pain with lupus?

[Aeam487]

Hi everyone, I was diagnosed with lupus at the beginning of this year. I just wondered if anyone else gets a really painful and stiff neck as part of their symptoms? At first I thought I had just hurt my neck somehow but it keeps coming and going and have noticed it comes around the time my other joints hurt. Just wondering if it could be part of lupus of if it is something else? Thank you.

[LalSD]

Dear Aeam487, we have neck pain all the time as part of our lupus. I had a chiropractor treatment which eased a bit but the most effective treatment is that I invested on a specialist pillow (John Lewis, and it has a curve to support my neck and head). I have inflammation around my neck, shoulders and I use hot water bottle, take anti inflammatory and try to rest. I usually have this inflammation every month and stress does not help. Hope this information would help. But just to confirm I have a neck pain as well as stiff neck regularly. With best, Lale

[Aeam487 in reply to LalSD]

Thank you so much for your reply. It only just occurred to me that maybe it is down to the lupus as it just kept coming back. I do take anti inflammatories for it but will maybe look into a more supportive pillow.

[LalSD in reply to Aeam487]

I have not been able to use any other pillow for the last 7 years. Although it cost about £100 pounds, I never looked back and I only have stiff neck if I stay elsewhere or use planes for long journeys where I sleep without a neck support. For air plane/journeys, I used to wear neck brace to manage the pain and inflammation, and prevent sleeping in the wrong position. Hope you get better. Lx

[Maddymay65 in reply to LalSD]

Dear LalSD

I was interested in your comments on a bad neck. I too have lupus and a problematic neck. May I ask which pillow you use? I have tried a few but find some too high. Thank you

Maddy x

[LalSD in reply to Maddymay65]

Hi Maddy, I Am sorry to hear about your pain. I have Tempur Original Support Large Queen Pillow, which is around £89(just checked). I bought it quite few years back. At least 6 years. It is a large pillow and it fits to my neck giving enough support to my neck and head. I am about 1.70m high. Nothing happened to its shape and never had as serious neck problem again. Stiff neck is no longer an issue. Inflammation is. ☺️ But the support eases the pain. Please note, this size might be too big for you, but the brand might help. I went through hell, whilst having neck pain and wore neck brace for 2 years. I only use neck brace if I am flying but I don’t need it as much as I used to. Hope this helps. Lale x

[Maddymay65 in reply to LalSD]

Hi

Thank you so much that is really helpful I will have a look. I have problems sleeping and migraines, all down to my neck and have been struggling to find a pillow.

M x

[NannieB8 in reply to LalSD]

Hi

Thought I would just say that I use a pillow with water in

One side soft and water at the back

It has been the best thing ever for my neck and shoulders.

It is also excellent with the swelling from Sjogrens in my face and neck .

Hope it helps

🐝

[Aeam487 in reply to NannieB8]

Hi, thank you. Think I need to look at other pillow options. Great to hear that has made a difference to you.

[Raceworks52]

Hi I have Lupus and I also have neck pain. I investigated it with my neurologist and I have a trapped nerve in the neck. It also comes and goes and I need to get my posture and sleeping position corrected as well as the correct exercise for the neck as it also gets too stiff. I have spent years working on computers so my posture is something to be desired so as to speak. Good luck.

[Beautifulwoman]

I get mild neck pain, but my shoulders sometimes feel as if they're trying to crack themselves off of my body. The pain is severe. Stiffness and pain is no joke. Docs never seem to understand why or where the pain is coming from. Very annoying.

[Bronn]

Hi Aeam487, I know your pains. I have Lupus, but also osteoarthritis and Rheumatoid Arthritis. The osteo arthritis is in my neck and I have noticed with every lupus flare it isaggrevated. I have been told it is possible to get a flare aggregating 1 area more than others, but still get pain in other areas too. Hot water bottle is always helpful. 💐

[Aeam487 in reply to Bronn]

Thank you, I’ll give the hot water bottle a go.

[Bronn in reply to Aeam487]

Hi Aeam487, yes I also have infra-red machine and massage. I have found over the years heat works extremely well, or nice long relaxing bath beforehand too if you can. Stay safe and well 💐

[Aeam487 in reply to Bronn]

Thank you, will give those things a try.

[Queenie1943]

Dear Aeam 487

Yes I have neck pain also. I bought an infrared combined shiatzu massager which I use for 15 minutes every day and it helps a lot. It has helped greatly with my headaches also.

I was desperate for some relief when I purchased it as even 8 cocodomol 30/500 per day and 6 gabapentin were not even touching it. It was quite inexpensive from Amazon .

I am so grateful for the relief. Hope this tip helps you. Regards Elizabeth

[Aeam487 in reply to Queenie1943]

Thank you for your reply. Glad you found something that helps. I’ll have a look into it and see if could help me too.

[diane1428]

Welcome to my world. He’ll isn’t it but atleast I know what it is

[Joni2011]

This is an interesting conversation for me. Problems with muscles and joints have always been my main symptoms. I get a cricked neck on doing the slightest thing. And a big knot in my shoulder. And right now my back muscles, Even the gentlest physio or exercise puts something out. I also use a hot water bottle. I've been wondering about getting a good pillow but it's hard to know what's best without a recommendation. LalSD I have just ordered the one you recommend so we'll see!

[LalSD in reply to Joni2011]

Let me know how it goes Joni2011. I also use oil packs with hot water bottle. If you can, please stay away from stress. I realised that if I have a stressful day, it accumulates around the top of my shoulders and the pain can be unbearable. I know for sure the pillow helps with my neck. I never have issues now. I hope it works for you too. With best, Lale

[Joni2011 in reply to LalSD]

It arrived today so we'll see tonight. I'm having a flare right now so it's good timing. I've never heard of oil packs but will look into them.

[LalSD in reply to Joni2011]

Although a bit early to ask, how is your pain? Hope you pain is better. Did the pillow improved your pain? With best, Lale

[Joni2011 in reply to LalSD]

Hi. Nice of you to ask. I was going to update you today anyway. It feels a bit strange but definitely really comfortable and you can tell it's a better way to sleep. My flare has settled down anyway so it's hard to tell if that helped directly. But I think it will have long term benefits. My cat also loves it and now plonks herself down on top of my head in the mornings! x

[LalSD in reply to Joni2011]

Good morning, happy to hear that it felt comfortable. I love the image of your cat sitting on it😂. My two always at my feet to keep them warm. I think the benefits are in the long term.

What I usually do is to try to massage my neck with castor oil(I know it is not everyone’s cup of tea) and or lavender oil as some find it more beneficial, hot water bottle and do this for two three nights. I use the oil help reduce inflammation, hot water bottle applied to it few hours. Please speak to your GP or doctor first before trying any options.

I have not had a stiff neck such a long time, I used have it every month, painful. No more. The pillow helped me so much, I hope it helps you too. With best, Lale

[Joni2011 in reply to LalSD]

Always nice to meet a fellow cat lover! Thanks for all the tips. I read on the site somewhere about arnica gel (maybe in the blogs - there are some useful tips there) and I bought some but keep forgetting to use it...

[Joni2011 in reply to LalSD]

It's been two months since I bought this pillow and I realised the other day that I have barely had any neck and shoulder problems for the last month. I did start methotrexate at the same time, but that hasn't helped any other symptoms yet, so I'm inclined to think it's the pillow. It's wonderful! And I have decided to buy a memory foam mattress and see if it helps my back problems...

Thanks for this tip. There are so many symptoms with lupus, that improving just one can have a big effect. x

[LalSD in reply to Joni2011]

Hello Joni2011, I am very very happy to read that there are improvements. As I said I never looked back since having this pillow. Rarely have neck and shoulder pain Or it’s relieved once I put my head on this pillow. We have gotten better and our illness is manageable and we live normal lives with simple adjustments. I use black castor oil for my back pain. I apply heat after putting it on skin and take a strong anti inflammatory over 3-4 days (no more) and I have not visited hospital for a long time for emergencies or night stay.

I am so glad the pillow helped. I hope this conversation can help others or at least they may consider alternative remedies to help neck shoulder pain. With best, Lale

[Joni2011 in reply to LalSD]

I have ordered some black castor oil and will try it. Thanks again.

[Nurse22]

A lot of the pain and stiffness is due to inflammation, i have it often and usually have to start taking prednisone for 5-7 days.

[Princerogers777]

Most likely is, i get it but i also have djd and a pinched nerve but i get it in different places in the neck , a joint is a joint and it could be affected. More common to be feet, hands knees n such but youll find it could b anything

[Aeam487 in reply to Princerogers777]

Thank you, I do get problems in feet, hands and knees too but only just occurred to me that my neck could also be part of it. Thank you got your reply. X

[susiechick]

Hi I have SLE Lupus since 1999 my shoulders are sore most of the time feels like I am in a vice

I have inferred neck massager it is fantastic it works on pressure points like acupuncture sharp shocks it helps also I sleep with. V shaped pillow.

Hope it helps.

[Olderkitten]

Hi Aeam487, Lupus affects muscles, tissue, and just about everything else so it could be why your neck hurts. My neck bothers me a lot and goes into shoulder and back, I had MRI of neck and shoulder last week and it showed a few bulging discs in neck and arthritis as well, my shoulder showed rotator cuff tear in 2 places and lots of spurring and of course arthritis so I'm trying physical therapy but even the doctor doesn't think it will help. Also some kind of syndrome with a nerve and it's rare to even show up on MRI. Massage therapy is helpful but covid19 is making it difficult. Try a heating pad or hot water bottle. I hope you feel better soon.

[Aeam487 in reply to Olderkitten]

Thank you for your message. Sounds horrible what you are going through. Hope you find something that can help you more. I will try the heat pads and see, thank you. X

[Buckley123]

Argh 😖 I have uctd diagnosis and my neck and shoulders are my worst symptom linked to my headaches for sure! Xx

[Aeam487 in reply to Buckley123]

It’s awful isn’t it. Never really thought my neck pain was part of it but all the replies have reassured me it probably is. X