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Need ideas for support

  • By Lucy

    I have had RA since I was 13 – am now 59. Gradually it has gotten worse and worse and over the past year I have had to adjust my medications continually due to developing bad side effects (depressed bone marrow functioning on biologics). I feel like I am sliding backwards. Over the past 6 months I have developed numbness, tingling, and pain in my right hand, fingers, and arm. I have some severe shoulder involvement and possible cervical issues. I had some inconclusive nerve conduction tests run and the recommendation was to get a neck MRI to see what is going on. I had an apt with my rheumatologist 4 weeks ago and she said she would order this. Since I have not gotten any calls about an appt, I have been following up weekly to see the status of this. Two weeks ago, the nurse said she would make sure the prior auth was processed and the appt made. She said my doctor had been ill. I certainly can understand this, and feel badly for her, but I am in constant pain. As of today, I have heard nothing – so I contacted them again, now I cannot even get a response. My contacts to the office have not been too much – I conveyed that I did not mean to bug them, etc. the nurse has been very nice. I asked if the delays were going to continue what should I do about the pain. I asked if I could try acupuncture – no response to any of this in the past week.

    It is hard to work, to dress myself, to take care of personal hygiene, and to sleep. Pain meds do nothing. Heat and massage wands help briefly. I have tried using a cervical traction device with minimal weight but it makes me feel nauseous so I do not think it is good to continue that.

    I am not sure if the pain and numbness is caused by my shoulder, my neck, or Thoracic outlet syndrome. I am at my wits end and do not know what to do. My doctor is in a solo practice and she has always treated me so well. This is hard to understand and deal with.

    I just thought I would write and see if anyone has any ideas.


  • By Kelly Dabel Moderator

    Hi Lucy, so sorry for your pain. This sounds very frustrating to not hear back from your doctor for weeks. It good that you are advocating for yourself and continuing to call in hopes of getting the appointment you need. Are there any other doctors in your area? If this issue seems to be ongoing, you may consider seeking a second opinion. Also, a Pain Management Clinic may be a helpful route as they specialize in managing pain. In addition to speaking with a doctor, these articles may be helpful to you:
    The Importance of Finding the Right Doctor:
    Cervical Spine Pain:
    Community Ideas for Managing Pain:
    You are not alone here. Let us know how you are doing, we’re here to support you. Wishing you some answers and relief soon. Kelly, Team Member

  • By Lucy

    Thank you so much for your reply and your great ideas. I read the articles that you linked. I have decided to leave a strong message with the answering service for my rheumatologist and if I do not get a response I will enlist my primary for support. I have to take action as I cannot cope with the pain and I feel I am losing use of my hand – it is curling like a claw and does not want to straighten. I also want to protect my cervical spine and prevent permanent damage. There is a medium sized rheumatology practice at a local university so I can contact them and ask for a second opinion if things do not work out with my primary. I am still frustrated with not knowing what is going on with my rheumatologist as I have been seeing her for more than 15 years and this is so unlike her or her staff, but I have to focus on what I can do to get the care I need.

    Thanks for your support.

  • By Eebtool

    Hello Lucy.
    First off, on a personal note, I like the name Lucy, it just makes you sound like a fun person.
    If you can, try very hard to get a copy of your medical records from your “not so accommodating and hopefully former rheumatologist” to bring along on your appointments with any new care providers. Make sure you only bring along copies and keep a set at home.
    As to the need for support, Keep coming back here as much as you can and taking part in the forum. I understand that typing may be a bit of a strugle, but I hope you can find the strength to it some days.
    Best of luck, eebtool.

  • By ktinflorida

    Hi, Lucy. I hope you already have a resolution to this issue, but if you don’t, I would go ahead and make the appointment with the docs associated with the university. I have had better luck with university affiliated doctors. You can always cancel the appointment when it gets close. It will likely take some time before they can fit you in, at least that is how it is around here.
    I hope your other doctor is okay, but she may be going through something that will take her attention away from you at a time when you need it the most. It isn’t her fault, but you need to put yourself first. You can always go back once she is 100%.
    Hope you already have this solved and I am a day late and a dollar short.