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Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myRAteam Member asked a question 💭
St Clair Shores, MI

I have RA in my spine and have had it for a very long time. I've had surgery in my neck where they placed a 6" brace along with wire mesh, a couple of screws, some cadaver bones etc. I live in Michigan and it can be say 40 degrees when you wake up and then 20 degrees at lunch time so it's easy to get caught unprepared. My issue is my neck and down my back a little way feels like a sharp knife if it gets cold. My family think I'm crazy because I wear all kinds of layers at home and keep the… read more

December 27, 2018
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Answer Summary

Members rallied around the experience of living with rheumatoid arthritis of the spine, a rare and debilitating condition that many described... Read more

Members rallied around the experience of living with rheumatoid arthritis of the spine, a rare and debilitating condition that many described as deeply painful, frequently dismissed by doctors, and often misunderstood by family and friends who don't grasp the severity. Several members shared practical strategies that have helped them manage, including aggressive advocacy with insurance companies and medical teams to secure necessary MRIs, finding the right neurosurgeon willing to perform complex spinal surgeries, using creative pillow arrangements and layered clothing to protect sensitive areas, and allowing themselves regular rest days without guilt. A recurring theme was the loneliness and difficulty of managing a serious chronic illness while living alone, balanced by fierce determination to keep fighting, trust one's own body over skeptical providers, and find humor and solidarity in a community that truly understands the daily struggle.

A myRAteam Member

My neck has started to bother me when I lay down. I have started to put a travel pillow on top of my regular pillow to hold my head straight, or my neck really hurts and wakes me up. My mother had neck problems and had a contraption out of the middle ages to make her vertebrae looser??? Less compressing on her discs. Some times I wonder if she had undiagnosed RA.

December 29, 2018
A myRAteam Member

I know how you feel about having insurance. With this disease I would be bankrupt without it. I can't believe how much just a months worth of one medicine costs, not to mention I am on 5 different ones plus the vitamin supplements.

Hoping your insurance company allows the test soon. And I am hoping after the MRI on your spine they can come up with something to ease your pain. 🤗🤗🤗

February 15, 2019
A myRAteam Member

If you have a care manager or case manager number listed on your insurance card I'd call them. If there's just a plain number I'd call and ask for a patient advocate program or anyone that you can talk to. Then request information on exactly what you have to do. There's a lot of rheumatologists and insurance that don't really understand or accept RA of the spine. I know because I have it and have dealt with it for many years. 2 years ago I finally had surgery on my neck (cervical spine) that made a huge difference in my quality of life but it took a lot of work and alot of different doctors and surgeons until I found the right one. Keep fighting and don't stop fighting. If it gets really desperate find contact information for the commissioner of insurance in your area and write your insurance company and send a copy to the commissioner. If that still doesn't work open a case with the commissioner - there's no cost to you as tthey are there as an oversight group. Good luck to you.

February 10, 2019
A myRAteam Member

I am from Michigan, never know how you will feel each day, i do know we should be weather people.

February 9, 2019
A myRAteam Member

AtypicalDandelion - Rheumatologists don't want to hear about your back or neck is what I've found. My primary physician is the one that's been helping me - I've gone to him for 30 years so trust him completely. Because of multiple bone spurs and so many, tumors, ruptured discs no surgeon would touch me even with cord compressions because of all the other issues. I did find a surgeon and he put a steel plate in my neck and relieved the pressure on my spine and the big nerve bundle in the neck with a metal cage. I've suffered terribly. Even now I'm told it's degenerative disc disease caused by age. There have been many times I just thought I was nuts!

December 29, 2018

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