Scleroderma & Raynaud's UK (SRUK)

Me again 😂

I’ve had excruciating pain in my neck and shoulders, more the left side for two weeks now and I’ve been feeling so fatigued etc. It’s now so severe I went to the doctors last night, I wasn’t able to see my GP as it was an emergency appointment. Anyway she told me that the gland in the back of my neck where the pain is is swollen, it’s not tender though, Just a solid painless gland! didn’t even know it was up. I don’t have a fever, sore throat, ear ache nothing!

Question - scleroderma related ? Do glands genuinely swell because of muscle pain ? Why is only one gland up ? Any pain relief recommendations? I’ve tried everything xx

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I have had extreme pain in my right knee for two months. GP couldn't do anything. I thought that I would have to have an operation I didn't want. And then it disappeared. Just like that. More recently I had acute pain in my breast and I thought it was cancer again. Had a mammogram. Clear. Pain went by itself. Then I remembered that things like that occur in scleroderma in cycles. Gone now but will come back in the future. It's sclera's sense of humour.

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Hi JazPont, the more I read posts on here, the more Ssc intrigues me!! Yes I experience pain, that lasts a few weeks and then just disappears!! Locations of pain can be neck, shoulder, knees, wrists and ankles! Oh and hips, thighs, well you get the jist. Ha ha. To add to the pain I also am discovering more white dry patches, red spots, lumpy red spots and brown patches, plus the lovely shades of blue and purple from raynauds at this rate I am going to be the colour of the rainbow! I also get itchy all over, tingling, hot flushes, skin feeling stretched on my hands inc fingers, and my mouth getting tighter which means I have lovely wrinkles round my mouth and going to the dentist is great fun ha ha. To add insult to my morale my eyebrows are disappearing and my hair is getting thinner. Guess what, on top of all of that I get out of breathe and am not as supple as I used to be, who says Ssc is complicated, we are just working our way through the medical dictionary. Anyway, I am sat here wrapped in a blanket watching snowflakes falling outside and watching "Bones" on channel 72! forgot to mention dry eyes and dry mouth! Is this getting me down? Not on your life, it just makes everyday an adventure. Bye for now, smile and wave, smile and wave.

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Fairy56 what a coincidence, I have the same Ssc symptoms as you exactly.

Everyday is different, different parts of the body ache on different days of the week. Loved the haha after the dentist bit - I take a neck pillow, lots of Vaseline to lubricate the mouth to try and open it cos it has shrunk. Got the dry eyes and mouth and this week, hay fever has kicked in.

Blanket on legs keeping me nice on warm with the snow again in my recliner chair.

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HI Mew53, is the hay fever something else I have to look forward to? ha ha oh by the way forgot to mention the mouth ulcers, as I said we"re working our way thro the medical dictionary! Is there anything beginning with X or Z, that we"ve not covered yet?

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Fairy56, can’t think of anything beginning with X or Y. Have had hay fever for about 10 years, only had SSc for 3.5 years.

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HI Mew53, I was diagnosed with Ssc 6yrs ago.

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Hi there you. You are brilliant at being so positive. Done me good to read your post. Bless you😉 I have a lot of issues going on at the moment and feel pretty low. Not like me at all. My neck for one thing is making me feel a little unstable and light headed. I have herniated cervical disks. Which I think have deteriorated since last MRI three years ago. Well, I hint it is that. I started on Sildenafil about 10 days ago. Not much improvement yet with reynauds. We need some warner weather. Sunshine😎Snowflakes falling here in Kent. Thane care my live and keep posting.

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Hi Fuchia, thank you so much for your lovely reply. Sorry to hear you are feeling low, but this site is a great place to come and share your good times and not so good times. you know what they say it takes more muscles to smile than frown, so in itself its good exercise to keep the mouth from disappearing completely, ha ha. The snow has stopped here in Yorkshire, we had about 4ins yesterday, but its nearly gone now, but still sat here in a blanket. I hope you see improvement with the Raynauds soon, if I want to warm my hands I tend to put them under my armpits, only when I am home, doesnt look great in public, ha ha. Take care, keep warm and sending you happy thoughts. And dont forget, smile and wave, smile and wave.

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You are a tonic😊 I sit on my hands too. Also not ideal in public.....but anything goes, eh😉 If only this wind would cease. It is freezing today down here. My neck is really stiff and rather light headed again. Sure it is to do with my neck and the shrill in my ears. Hey ho! As you said 'smile and wave.' Brilliant ethos 😊 Thank you for the lead. You have a warm and rewarding week.

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Hello again, well at least the snow as gone up here, but its still cold, tips of fingers cold today, cold hands, warm heart. I cut my finger yesterday, and bearing in mind I dont have much blood supply to the ends of my fingers there was an awful lot of blood, must be a good sign! Sorry to hear your neck is still stiff and you are still feeling light headed, have you considered going to see your gp, so they can check you over and perhaps have your blood pressure checked, it may be low, but most of all take care.

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Hi, it is amazing how even though blood supply is short. When you cut yourself the always seem copious amounts of it!!!! The body works in mysterious ways👻oooooh😉 Hope it heals well. The skin on my fingers is so dry and flakey. Got lots of splits on the ends too. Fingers can get so painful, can't they! Falling apart🙃 What bit will be next to go..... bit of a lottery, that one. So gone here too, but a biting wind. I have. BP monitor myself. I will check it in the morning and go from there. Feels as though it all stems from the neck, I think. The herniated disks. Well, here is too a warmer week to us all and my won't that be nice. Look after yourself and do keep in touch.

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Hi hon, glands don't swell because of muscle pain, but in most autoimmune conditions, such as scleroderma you often end up with inflamed glands when you are having a bit of a flare...it indicates that there is immune activity. Glands are the site where many of our immune cells sit, so when they get active the glands swell. You usually also know because you feel fluey, achy, fatigued and generally rubbish! There is not necessarily any rhyme not reason to which glands swell but it is common to have the neck glands, usually the big ones at the front swell up when your disease is active. Sometimes the ones in the armpit, groin and behind the knee. If you feel achy and glandy then paracetamol is a great drug taken on a regular basis, rather than as and when (don't exceed the maximum dose in 24hours though!) If you have pain related to inflammation then an anti-inflammatory medication is helpful, like Ibuprofen and that family of drugs. Pharmacists can be helpful if you can't see your GP.

These pains do have a habit of moving around the body, one day or week it is in one place and then another day or week it has moved. No rhyme or reason.

Hope that helps

Lxxx

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Hi all - oh my gosh I completely identify with everyone’s comments. Pain and inflammation seems to move from one bit to the next exactly as it pleases, just as you get to the stage where you can’t bear it, it decides to stop and move off somewhere else. Comforting always to know we’re not alone 👍🏻

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Lord Jesus, please give relief to JazPont. Heal the gland in the back of her neck, remove the swelling in Jesus name. Amen

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I have Sjögren’s with possible Scleroderma and RA. By strange coincidence I had a very similar experience to the one you describe also in my neck. First it felt as if it was in my left eye so I went to emergency eye clinic - was told inflamed lacrimal duct/ gland.

Was advised to see a dentist because parotids and neck seemed swollen on left. Very sore couldn’t look up - only happy with my neck forward ie looking down. Bad pain and dryness in lips too.

Dentist could find nothing wrong so sent me to GP. Got an emergency appointment and my GP said it was muscular rather than glandular - probably arthritis/ cervical root changes. I took Naproxen which is usually a no no for me due to reflux. But it does work and I only took it for two nights and the pain and stiffness died down. Next day it was in my right foot!

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I suffer from this too.. pain right in the middle of your neck below your skull .. I get headaches often and feel it is conncted to scleroderma .. have you any patches on your neck? I didn't realise I did until some one pointed it out to me one day

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