Pain for years

I am a nurse and breast cancer survivor. I started having pain shortly after having breast cancer in 1998. I was not officially diagnosed until 2016 with RA and Sjögren’s syndrome. I am on my fourth medication and none have completely relieved the pain. I am getting depressed after years of pain and now no relieve. My husband and family are supportive so I am lucky in that respect. I still work full time but I am not sure how much longer I can.

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  • Pwilcox
    2 years ago

    Hi Bagglady, I stopped when I read your post and took a deep breath. In 2014, I went for my routine annual mammogram. After 21 normal mammograms, I was diagnosed with early detection breast cancer. I was relieved that it only required a lumpectomy and 10 radiation treatments. My relief was short lived. Within 3 days after radiation ended, I developed excruciating pain in my shoulders and arms. I immediately went back to my surgeon and oncologist. They just brushed it off as “it will get better with time.” I went to my PCP and he ordered an X-Ray of my shoulders which really showed nothing. He referred me to a Neurologist who did an MRI and after looking at it, told me I should do neck exercises and wrote me a prescription for pain pills – all the time I was sitting in his office crying in pain. From there I tried a chiropractor and a pain clinic. Finally, in February 2015 I went to an Orthopedic Dr. who said I needed total shoulder replacement. I was flabbergasted! My pain was so bad, my husband and I discussed it and I decided to go ahead with the surgery thinking my pain would be relieved. At this point, not one medical professional had mentioned RA testing. Rheumatoid Arthritis was not even in my vocabulary. I had no family history and not one friend that had it. I went into rehab after my shoulder replacement and the pain in my hands and feet got worse. I would sit in rehab, crying asking the PT’s what was wrong with me and they would say, “it just takes time”. Finally, by the end of my PT, I went back to my PCP. I was dragging my foot; my hands were bent. I sat in his office sobbing telling him I wanted to die, I could not handle the pain anymore. Finally, he ran the lab tests for RA. He called me at home a week later and kept apologizing for all I had been through. My inflammation numbers were very high. In Oct. 2015, I finally started seeing a Rheumatologist who put me on Methotrexate. It has helped but is not fully controlling my RA.

    I am in the process of starting Remicade infusions but guess what? I had my annual mammogram this past Monday and they have called me back in for more testing. I am devastated but not jumping to conclusions. It has been 3 years this month since my diagnosis, but if the cancer has returned, I will probably not be able to go on the infusions. I have to wait till Monday after Easter for the additional testing. I so resonate with what you are going through. I had to give up a job of 40+ years that I enjoyed because my pain was so bad I could not function. I am blessed to have an awesome husband and family support system. My husband has been my side every step of the way and he makes life much easier for me. I still cannot believe that breast cancer and radiation triggered RA and I am equally upset that it took 10 doctors 18 months and total shoulder replacement (which my Rheumatologist said was not necessary.) But it is what it is and we have to deal with it and live life to the fullest which is what I do. My husband and I are still pursing our dream of traveling, we just have to do it differently now.

    My prayers and best wishes to you as you going forward.

  • bagglady author
    2 years ago

    So sorry to hear. My rheumatologist told me that the cancer could have caused my body’s immune system to attack the cancer and then I guess attack itself.
    Prayers for your also.

  • Richard Faust moderator
    2 years ago

    Hi bagglady. Sorry to hear about the diagnosis, but glad that you have come to a place that can offer some information and support. It is good that you are receiving support at home, but that alone may not completely help with the emotional aspects of receiving a diagnosis. Unfortunately, the emotional often takes a backseat to the physical. This article from our editorial team looks at these issues:

    https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/.

    Receiving a duel diagnosis certainly can complicate things. This is not uncommon with autoimmune conditions like RA. This article from our editorial team looks at RA and comorbid conditions, with links to additional information (including Sjogren’s):

    https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/.

    Sorry to hear that you are struggling to find an effective treatment. For your protection, we cannot give medical advice over the internet. You may be interested in this article on combination therapies:

    https://rheumatoidarthritis.net/treatment/combinations-of-conventional-and-biologic-dmards/.

    Hopefully, you and your doctor can come up with an effective treatment soon. Please know you are always welcome here and keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    2 years ago

    Hi bagglady, So sorry to hear that you are having such pain. Many in our community can relate to the frustration of trying different meds and not finding relief as hoped. Have you asked your doctor about trying a Pain Clinic? They work along side your doctor but focus primarily on getting your pain under control. In addition to speaking with your doctor, these articles may be helpful to you:
    Pain Management: https://rheumatoidarthritis.net/living/do-pain-clinics-really-help/
    Community Ideas for Managing Pain: https://rheumatoidarthritis.net/living/community-ideas-managing-pain/
    Switching RA Medicines: Don’t Wait Too Long Or Try Too Many: https://rheumatoidarthritis.net/living/switching-ra-medicines-dont-wait-long-try-many/
    Hope those are helpful to you. Please reach out with any questions you have, we’re here to support you. Wishing you some relief soon. Kelly, Rheumatoidarthritis.net Team Member

  • bagglady author
    2 years ago

    Thank you and no I haven’t requested to go to a pain clinic. I am a nurse and I’m still employed. I could not take the medication they would order. Thanks for the info.

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