Pain in my neck

[annie1954]

Has any one have RA in the top of their spine? I have just had an MRI scan and the RA is attacking the odontoid peg at the top of my spine. Does anyone else have this?

[LizzieR]

Hi,

I'm so sorry you have this. I have in my neck/ top of my spine. The pain runs up my neck and along my shoulders. I'm developing a bit of a hump as well! But, mine wasn't diagnosed until lots of damage had been done- hopefully the meds they'll put you on will help limit damage? Thinking of you x

[annie1954 in reply to LizzieR]

Thank you LizzieR , it's such a terrible disease... I'm sure they will put me on methotrexate when I see the consultant. I am on Sulfasalzine and Hydroxychloroquine, and pain relief every 4 hours, and Amitriptyline at night..

I have been signed off work for two weeks, I am thinking about applying for PIP, but not sure.

[BoneyC]

Yes, I had a laminoplasty and fixation for unstable cervical spine and cervical myelopathy in 2002. The neurosugen told me I would be able to move neck from side to side but I cannot and he realised that my odontoid peg had fused itself onto C1. I'm now fused with titanium rods from C3-C6.

I would add, I was dx as a 6 year old in 1971, so I'd had RA 31 years by the time I had neurosurgery.

[annie1954 in reply to BoneyC]

Thank you BoneyC poor you to have suffered this from such a young age, its terrible. How do you cope with the pain? My head feels so heavy and it seems it will snap off any time!!

I can't see this getting any better?? So not sure how long I will be able to work for.

Do you work?

[BoneyC in reply to annie1954]

I grew up having to cope with pain so I think I have a high pain threshold and developed coping strategies along the 46 year RA journey.

I worked for 22 years as a legal secretary. It was the neuro that stopped me and since then I've had 3 THR's, one infected, and need elbows , shoulders and one ankle replacing, but am told I'm too young just yet.

Hopefully you'll get some treatment and/or surgery, as a last resort. Good luck with working for as long as possible.

[Kai--]

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Believe "pain the neck" is the spouse 👱 👩 ,

"pain in the 🌙🌙 " is the offspring 👫 . . .

.

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[Just couldn't resist, annie1954. ☺️ No offense intended 🙏 . Merely an attempt at levity 😬 to bring you a smile. 😊 (No disrespect toward spine sufferers . . . nor spouses or children. 😌 )]

.

Hoping neck/ odontoid peg issue resolves. 🙏 🍀 🌺 🌞

.

[annie1954 in reply to Kai--]

Ha ha , no offence taken Kai. I live on my own so I can't even blame my ex husband lol.

[Kai-- in reply to annie1954]

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👍 😁

Pets 🐕 🐩 🐈 🐢 🐌 . . . , 'next best' thing to spouses (or exes) as far as being adorable, loving 'pains in the neck' or 🌙🌙 . . . . ☺️ 😬

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[rawillbebeaten]

Hi Annie,

I've got a horrible feeling that the same is happening to me. Having a flare which started in August, Have had the 1st of another set of infusions of Rituximab and hoping that kicks in soon. Neck is painful and clicky, had an X-Ray in Sept when I saw the Rheumatology Assistant to sign the form for RX. She said they needed to check about the peg. They haven't rung or written with the result so hopefully it's OK at the moment. Back on Maximum Pain relief and hoping things improve soon.

Wishing you all the very best and hope you get Meds to stop or limit the attack, Awful condition and we all have to keep fighting as it changes tack - heart muscle and eyes have suffered so far with me and could be that neck is the next target.

Thinking of you

Michele

[annie1954 in reply to rawillbebeaten]

Hi Michele

Thank you for replying, sorry that you may be suffering with this to. I feel sad for every one that has this disease. Has anyone read up on changing their diet? I have just watched you tube videos by Clint Patterson and a lady called Lucy Piper, I would be interested to know if this is successful.

[annie1954 in reply to rawillbebeaten]

Hi Michele Thank you for replying, sorry that you are suffering to. I haven't heard about it can attack the heart muscles and the eyes. Poor you that must be awful.

The problem with taking pain relief it creates another problem like constipation !

Wishing you all the very best to, and hope you have some relief from pain now.

Take care

Ann

[helixhelix]

I have problems at C1, so above the peg. But sympathise as having pain so close to your head is hard to ignore.

Soon after I was diagnosed I went down the diet route, and spent months hoping it would make a difference. I thought it might have done, and dropped a dose of my meds. However, immediately flared! So basically diet did diddly squat for my RA. However it has helped me in other ways so I still keep up a v healthy approach, but recoggnise that I need the drugs too. Apparently a lucky few do find diet works for them, so always worth a try. just don't stop drugs u til you are sure.