Neck Pain

Does anyone have neck pain on both sides of neck that will not go away no matter what you do? I have had pain in both sides of my neck for at least a week and a half and it isnt getting any better. I was diagnosed with MCTD and I thought like the rest of my symptoms it would subside at times but it doesnt. Last night it was so severe I almost went to the ER. It woke me up and i couldnt sleep all night. I take a pain med 2 times a day and i've tried heat, message, stretches, and icy hot nothing helps I cant turn my head in either direction.

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I do as well, having MRI's tonight, I'll will keep u posted as to what they find out, I wish I had answers, I can't deal with the pain either as I can't take pain meds, it hard! I do however BELEIVE that stress brings this on?? Just don't know how? Good luck to you, hope your pain subsides!! :)

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Sunshine,
Thank you for replying, I was wondering if you could tell me how your neck hurts. Mine is just on the sides with it coming straight down from my ears down to my shoulders. I have so much pain it makes me sick to my stomach. I'm glad that they are doing MRI's on you I will look forward to knowing what they find. I hope its nothing serious and they can find some relief for you.

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Mine is the same type of pain, down the sides, I get massage therapy once a week n it seems to help for a day, then the pain comes back?? Concidering accupuncture!! Good luck and thank you!!

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Yes I also Have MCTD and I do have neck pain all the time. My Doctor suggested I wear a neck brace and that does seem to help. I am always having something wrong. The disease differently changed my life . You just have to learn things that will help, and the group does help alot.

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Thank you so much Coastland. I talked with my Dr. and he prescribed a muscle relaxer and told me to apply heat and ice 10 min each. That really seems to help and I actually SLEPT last night!!! I felt pretty good today! First time in a long time. This disease had definitely changed my life too. Its hard for me to go anywhere because I'm afraid that something will happen and then I will not be able to control the situation. That really scares the crap out of me. SO I would rather just stay here at home where I know I will be safe. Sounds weird to me because I have always been a person who loved to go and do things all the time.

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I was the same way...and now I don't like to leave home either...just feel too bad and too weak!! I think that is one of the hardest things to accept...my husband and kids go out and do fun things and I never feel like going...sometimes I force myself to go, more for them than myself, b/c it isn't easy!! Back at the MRI place now waiting to finish up my last four! Praying the results come back okay!! So glad you were w/o neck pain and hope it last, I use a moist heat pad and that helps me also!! Take care!!

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Hi all
I have the Mctd and the same neck pain. I asked about a neck brace and they told me not to do it as I would loose what strength I did have in my neck. It feels to me like it would help and hearing that it works for one of you I am going to ask for one again,
I have developed arthritis in the joints that join my ribs to my spine and that has been dissabilatating. (spelling?) The only thing that works a little on my back is percocet and I hate taking that.
I have lately been having a butterfly rash on my face and last week had a very severe reaction to the sun.
I have been prescribed a muscle relaxer too and that helps me as well. Has your Dr said if the pain is from the muscles or from the bones? Mine isnt sure what is causing it. I started Ivig almost a year ago for the Mctd and an low IG cells and since then all of my blood work looks good. But it certainly is not how I feel.
Please keep posting what happens with your neck and what helps. It certainly is painful
Keep strong
Leah

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I have MCTD and neck pain that emanates down from the neck to the top of my shoulders. My shoulders will also become numb sometimes. I take 200 mg of Celebrex, and my doctor suggested muscle relaxers. I read and edit a lot at work, so they purchased a reading stand for me (I had to get a doctor’s note) so I don’t have to bend my neck all day. Two years ago, I had 10 sessions of acupuncture and the neck pain went away for about a year. Now I get the pain about 3 days a week. If I could afford the acupuncture, I’d do it again. It was $100 per session.

I hope you feel better soon!


Gabrielle

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Gabrielle,
I was a cake decorator for 15 years and I always thought that the pain in my neck was due to that. But now that I no longer decorate cakes I know that it was from the disease. I was just so relieved that it has calmed down and I can tolerate it now. I have never done acupuncture and if it gets bad again I will have to check into it. Thanks for the info.

Christal

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yep, mine gets really bad during the flares. feel like bone on bone. terrible pain! and usually leads to migraine. sorry, nothing helps me either.

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yep, mine gets really bad during the flares. feel like bone on bone. terrible pain! and usually leads to migraine. sorry, nothing helps me either.

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Christal,

Thank you for the information! I think I had the same situation. I was just recently diagnosed with MCTD. For the past several years, I thought the pain was from all the bending of the neck I do when reading and editing. I still use my book stand, and I still have pain. I, like many of us, had a delayed diagnosis. I have known in my soul that something was wrong for at least the past 5 years, but once I got the diagnosis of “anxiety disorder,” no doctor would go beyond that diagnosis. I call it the, “It’s All In Your Head Syndrome.” It wasn’t until I got a symptom a doctor could see (livedo reticularis: reddish-violet reticular discoloration of the skin), that the proper blood tests were done.

I have seen many specialists and had many tests done over the years. I spent 2 years in psychotherapy trying to talk my disease away. I was always told to take deep breaths and relax, which helps, but ….

I’d like to drop doctor a note about my autoimmune disease, but I will not let that anger consume me. I know their jobs are not easy. They did the best that they could at the time. It is nice to know I am not crazy! One day at a time.

Feel better, everyone!

Gabrielle

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Gabrielle
Does the Cellebrex help? My gp wrote me a prescription for Cellebrex but I didn't fill it. With taking the percocet for pain and zoplicone for sleeping I have been worried about throwing another chemical into my brain. I already feel so thick headed and have trouble finding words with what I take. But if it helped the pain it may be worth it.
Leah

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koko negative on the cellebrex!tried it for about 3 years. did'nt work. i thought like everyone else it was some thing else! sorry for the double post. have no idea how that happened! take care all.

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Hi Leah,

I've only taken Celebrex three times, as I am new to the MCTD diagnosis. It seemed to help, but the pain did not go away entirely. At first, it made me queasy and dizzy (and I already get the dizzies), but the third time I was fine. So, the jury is still out for me. I can relate to having to take a lot of drugs! Effexor for anxiety, Propranolol for high blood pressure and elevated heart rate, GERD meds, Trazadone for sleep, and I start Plaquenil today. I hope it helps!

I also learned today that my BMI is low. My rheumy encouraged me to eat more grains at fats. However, I have read many times that I should avoid Gluten, so I have not eaten bread or any grains regularly for a while.

Be well!

Gabrielle

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Gabrielle,

Wow I wish my BMI was low LOL I dont think I have ever had a low BMI. I was 9lbs 12 1/2 ounces when I was born. I have been overweight ever since. LOL. I

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Too funny! I swear, I was surprised, as I have actually gained some weight due to my inability to work out at times. I think this flare started 6 or 7 months ago (before I knew I had the disease), and I did lose weight – I thought it was work stress and insomnia alone. I guess I did not realize how much! I was born at 5 lbs. in February '69, so they treated me as a premature baby even though I was full term.

Took my first Plaquenil a few hours ago. My heart was pounding. I don't know why it made me so nervous. i guess all of the drugs. My pharmacist assistant, who has Lupus, told me I should see an eye doctor every 3 months. Do others do that? Sorry - off-topic here.

Happy Friday!
Gabrielle

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I take Plaquenil too and they told me to get an eye exam once a year. I started my Plaquenil 3 weeks ago and it finally started working about 3 days ago. The swelling in my feet is gone and my hands are not as bad either. I had to see the Cardiologist because on top of MCTD I have Atril fibulation. I went to see him because i have been having trouble breathing. He ordered some blood tests and I just got the results today. They said my D-Dimer is high and that I have to go get a CT angiogram. Has anyone ever had that done? They told me he was worried about blood clots in the lungs. Does anyone know if this is the result of AF or MCTD?

Well hope you have a great night!

Christal

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Oh, good to know! I can't wait for 3 weeks. I have trouble breathing at times and a constant, nagging cough. I had a lung x-ray today. Also, my rheumy mentioned blood clots today, and they did some sort of test at the hospital. I have not have a CT angiogram (as far as I know! So many tests ....). Please keep us posted if you don't mind. I'll check my D-Dimer when I get the results from my third blood test and urine test, taken today.

Best to you and yours! Be well!

Gabrielle

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Gabrielle,

Well I ended up at the ER last night. My heart started doing some weird things so i went in. I had the CT angiogram and it said that I have DOUBLE pneumonia!!! I have never had it before. I asked why I dont have a fever or anything he said since I have MCTD it can do all kinds of weird things. I just can't believe it. Well he put me on a really high dose antibiotic and sent me home.Said I need to see my family doctor asap. The good thing is I dont have blood clots. So if I had to choose I would choose the Pneumonia I guess. I have strict orders to rest all weekend!

I hope the Plaquinel works sooner for you. They told me 2 to 6 weeks to start working.

Have a nice Holiday
Christal

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