Opinions Needed

Hi there Everyone!

I sure feel your pain! I started out with hand, thumb, ankle joint pain and swelling. That progressed to elbow,shoulder and hips. Our family physician thought I had RA, but all test were negative, he sent me to a Rheumatologist, anyway. Many drugs and tests later, she pronounced me RA seronegative. Started me on Gold shots, antiinflamatories, prednisone. 5 months later, I thought I was cured. I still had small flares, then 4 years later, agonizing, burning pain in my feet and toes. My toes and toe nails actually turned bluish black. After spending a few days in the hospital, tests, high doses of steroids. . . I was sent to a neurologist, he said I had perepherial neuropathy, either as a companion to the RA or another overlapping connective disease. I also went to the University Hospital to the head of Internal Medicine. He couldn't rule out an overlapping connective disease as my ANA was speckled, but thought maybe it was from the Gold shots, as gold like any other heavy metal does bad things to our bodies. He also Dx me with SLE. 20 years and more flares and drugs than I want to think about. . .I still have joint problems, and a chronic neck pain which radiates to my shoulder blade. MRI is clear, I'm on a biologic for the RA, 20 mg of prednisone maintainence dosage, muscle relaxers, pain meds, as well as regular epidurals, nerve blocks, a Prolia shot @6 months for osteoporous. I'm told I have fibromyralgia. I still have flares, I had a pnemothorax in 2013, spent a month in hospital, had 2 surgeries, the lung docs said together with my smoking, the methotrexate and the biologic had destroyed my lungs. Now they have added post thorasic surgery syndrome to my growing list of ailments. Guess what? Still have the severe neck pain and my 40 yr old son is having same issues. Ice packs, pain meds, muscle relaxers and pain meds are the best for the nerve pain.

Despite my long history, does anyone have any ideas as to what this neck pain is?? Has anyone had anything similiar? Anyone have any home remedies?

4 Replies

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  • Hi USAhousewife.

    I'm not sure if this is any help, but i thought I'd let you decide for yourself.

    I have psoriatic arthritis, previously diagnosed as seronegative RA. I suffer terrible enthesitis pains at pretty much all tendon insertion points, one of which is down the side of my neck, slightly behind my glands. I also get pain under my shoulder blades which sounds similar to you. My enthesitis pain can range from dull ache all the time to incredibly sharp pain, which was misdiagnosed as nerve pain to begin with as it was so intense. Most of my bloods are normal with little to no evidence on MRI but my rheumy says this is normal.

    Enthesitis pain in very difficult to treat. Mine was firmly confirmed by a direct steroid shot into the tendon which provided total and instant relief....but only for 10days!

    I hope this was of some use to you. PM me if you want any more info

  • Hi USA housewife

    I can't help with your neck pain but want to ask you about the Prolia injection you have for Osteoporosis?. Does it have side effects?. Has it been effective? I expect it's expensive, is it a newish treatment or not?. I am horrified at your list of drugs and problems. Do you have Pain Clinics in the US?. I've had great help from one here in UK. They do offer different treatments and drugs to try. What part of the USA are you from as I've got a pen friend from New Jersey?. I hope your neck improves soon.X

  • Hi there,

    I am from Southeast Alabama. Actually it's nowhere, we are the last to hear of anything new. The Prolia is a shot given every 6 months for Osterporous, it is so much better than taking a pill every day!! I highly recommend it! It is expensive, but is getting more affordable. My co pay was $6.50, same as for any brand name drug.

  • Good news! I went to my pain management dr on Thurs. I told him my neck was bothering me much worse that the thorasic area, and I asked him if he would try cevical facet injections. He told me usually facet pain is due to arthritis. I calmly pointed out I've been dx with RA since I was in my mid 20's. He then examined my neck (read very painful probing) but agreed. The facet injections were painful. I did not feel any immediate relief, but Baby, I feel the relief more everyday!! I'm so glad to have worked up the nerve to ask him :) To think this horrible neck pain extending to my shoulder blades was my old friend RA

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