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Rhuematoid under control but still in pain?

  • By Patricia Darstein

    Question for my fellow RA’s (ers)…I have Rheumatoid Arthritis but according to my new doctor (previous doctor retired) my RA is under control. That being said…why am I still unbearably stiff in the morning (about 2 hours at least), wrists a bit swollen but still in the same pain I’ve always had along with my fingers, toes, feet, left knee, lower back. Could it be the fact that the damage is done?

    ALSO- went to a pain management doctor because of my new RA Dr. (says that my RA is under control) and with all the new laws and problems with Opiates (clear out said he doesn’t feel comfortable giving me pain relief)(which by the way my previous doctor who retired gave me pain medication and I’ve taken it for over 10 years which I’m sure my body relied on…LONG STORY but ANYWAY.. the pain management doctor says no Narcotics…and also said and I quote “I will let the Rheumatologist treat the RA issues, and your Podiatrist treat the foot issues”. Hm…okay now where does that leave me because my RA is effecting me with Neuropathy, and other areas wrists, knee, back). So who should manage my pain? help please?

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  • By Mariah Z. Leach Moderator

    Hi Patricia ~

    Unfortunately, morning stiffness and some amount of joint pain is not uncommon even in patients where RA is considered “well controlled.” You are also right that any damage that has already been done could also be contributing to the amount of pain that you are in.

    However, that being said, your doctor isn’t the final word on how you are feeling – you are. If you are still in more pain than you can handle I encourage you to continue pressing your new doctor for better results. There may be some changes to your current treatment plan that you could try that might produce a better outcome. Ultimately you two need to be able to work as a team to come up with a treatment plan that you are happy with. If you feel like your new rheumatologist isn’t listening to you or working with you, it may be that doctor isn’t a good fit for you – and it may be worth considering a new one. Having a good relationship with your rheumatologist is important, and it’s ok to shop around if you don’t have a good fit!

    As for pain control, that can be a difficult subject to address. I encourage you to continue talking with your doctors and advocate for yourself – and, if possible, try to get your doctors to talk directly to each other.

    In the meantime, please remember that we are here to support you.

    ~Mariah~

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    • By Patricia Darstein

      Thank you for your reply! Good advice. So few Rheumatologists in WNY area. But still…is your Rheumatologist supposed to manage your pain or is a pain management specialist? No one wants to be responsible. I understand that Opiates are ‘bad” but if they were helping why is it such an issue? I was not abusing them. I was using them to manage bad lower back pain and Neurapathy as I’ve tried so many other methods and medications which either didn’t work or gave me HORRIBLE side effects. Thank you again for your advice!

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  • By Richard Faust Moderator

    Sorry to hear you are having these difficulties with pain and your doctors Patricia. That is some great advice from Mariah, particularly that you are ultimately the arbiter of how you feel and what works for you. Here are a couple of articles that may be of interest:

    This article from the editorial team deals with nerve symptoms: https://rheumatoidarthritis.net/symptoms/nerve-symptoms/.

    This article from the editorial team looks at the new CDC guidelines for prescribing opioids for chronic pain: https://rheumatoidarthritis.net/news/cdc-releases-guidelines-for-prescribing-opioids-for-chronic-pain/.

    I hope this information is useful and wish you success in getting a medical team that will communicate with the goal of getting you an effective all-around treatment plan.

    Best, Richard (RheumatoidArthritis.net Team)

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  • By Patricia Darstein

    Thank you so much for the information. I totally agree with there being pee tests etc. and more regulations concerning pain medication for sure! But NOT every body dies when they take opioids and I think my point is being missed…I am just confused about where I should go and who I should see for pain treatment? RA Dr says see a Pain Management Dr, Pain Management Dr. says see your RA Doc and Foot Doc…Foot Dr. says see Pain Management… YIKES..There are people who do need Opioids to function efficiently. I am just confused by these doctors out there. Here’s an example and this strikes me odd…my husband has neurapathy his feet (similar to one of many afflictions)and mine I believe is worse because I can NOT walk for more than 1 block without stopping. He goes into to see his (state Compensation) Pain Management Doctor and he receives just as stated…pain management consisting of just Opioids to manage his pain and was told that Lyrica and the other nerve treatments will not work so don’t waste your time. I go in for my Neurapathy and RA pain and I’m told exercise, see your Rheumatologist, see Foot Dr etc. What is this? Is it because he is a man? Is it because I have a disease and he has just pain? I am confused. How is my pain unqualified to be treated but his is treatable?

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  • By Mariah Z. Leach Moderator

    Hi Patricia ~

    As to who should manage your pain, I suppose it depends on where your pain is coming from. What I would probably do is keep asking questions of all of my doctors until I got answers I was comfortable with. If your rheumatologist is referring you to a pain management specialist, that is likely because he thinks your pain is not directly from your RA. Ask if this is the case. Ask if there is anything that can be changed in your RA treatment that might improve the outcome. Questions like that – so that YOU can understand the reasoning behind their recommendations. It is part of their job to explain your treatment options, so keep asking until you are comfortable with the answer. Unfortunately, related to the example you give, there is some evidence of sexism in healthcare (https://rheumatoidarthritis.net/living/does-sexism-exist-in-healthcare/) so it might also help to have someone like your husband attend your appointments with you to help you advocate for yourself.

    It would likely also help if you could get all of your doctors to speak directly to one another, rather than having to try to act as the messenger between them.

    Best of luck to you!
    ~Mariah~ (Site Moderator)

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