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I see several drs the longer I have RA the more drs I need

I don’t believe not one of my drs really understands what I’m going through. Pain medication could be addictive but no one talks about the risk that biological have on the body. Cancer tumors nodules on the heart and lungs I could go on and on. I would take my chances with pain meds if my dr in NJ didn’t vanish the day marijauna became legal. I don’t have any friends they got tired of me canceling I feel like the only time I talk about it I m complaining thanks for listening

  1. I get it. RA is so complicated. It has been mentioned many times before just how much doctors seem to not understand how this terrible disease affects those who have it (let alone know how to diagnosis it), and family and friends can seem completely lost unless there are physical symptoms present which we know isn't always the case with this condition. Your health matters and it's important that you have a healthcare team that truly supports you. Your feelings and experiences are valid and we're always here to let you voice how all of this is impacting you. There are so many who feel the same way so know that you are not alone in this. Hoping things turn around soon, Latoya (Team Member)

    1. needed this thanks so much!

  2. Hi . Know that people here understand the plethora of doctors and the feeling that none of them can understand the whole picture of what RA brings. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago and definitely has had her share of doctors. She wrote here about the need for specialists: https://rheumatoidarthritis.net/living/specialist-treatment. In her case (and noted in the article), many of them are because of the comorbidities that come with RA.
    I also want to tag our patient leader because I know he has dealt with some of the potential conditions you have mentioned, including cancer and has experience with pain management.
    Others here also understand the trouble with people not understand just how unpredictable or just downright terrible RA can be. Daniel actually wrote this article on dealing with the unpredictability: https://rheumatoidarthritis.net/living/coping-unpredictable-symptoms and this one on cancelling out on plans, in which he discusses the need to be easy on yourself at times: https://rheumatoidarthritis.net/living/cancelling-plans. We know this is easier said than done, but please know that this community is here for you. Best, Richard (RheumatoidArthritis.net Team)

    1. Oh I have been where you are so many times, I totally get it. Thanks for tagging me. First, let me say that finding a pain doctor in this day and age is difficult and finding one that doesn't treat you like a little child that needs to be monitored at all times and scolded and threatened if you push back at all is nearly impossible. Mine is an anesthesiologist at a well-known hospital in Manhattan so he has the protections of a big hospital system. It allows him to prescribe the amounts I need and not get looked at like a drug dealer, although it still does happen. I've been with him for decades and there have been periods, sometimes months at at time, when we had to make alternative arrangements due to some person who isn't a doctor thinking they know better than my doctors do. As for cancelling on friends that's 100% a thing. I have been lucky enough to have some of the most understanding friends in the world and still, if I cancel enough times in a row I definitely won't get invites for a while until I reach out again and restart it. It's just human nature I'm afraid and just one of things that makes extra work for those of us who suffer with RA. I know it's not fair, but just know you are not alone in any of this. If there's anything we can do to help just ask and we will always be around to chat, or listen, or just be here if you want to vent and know you are not alone. Keep on keepin' on, DPM

      1. I firmly believe that NO ONE can understand the pain of RA, including doctors, unless they have personally experienced it. Furthermore, no one can understand the mental strength it takes to deal with RA and all of its complications on a daily basis….pain is just one thing. There is also the overwhelming exhaustion (not just from the disease itself but also from the daily stress, anxiety and depression). I’ve had RA and Sjogren’s for 17 years and have dealt with the depression and anxiety almost as long. I’ve always said that you should be handed a referral to a therapist and a prescription for antidepressants when you are handed a diagnosis of RA or any other autoimmune disease.

        1. I truly admire your strength, . Living with RA for 17 years and dealing with its physical and emotional toll sounds immensely challenging. The pain is indeed just one aspect of it. The daily exhaustion, stress, anxiety, and depression add layers that many people don’t fully grasp because the mental strength required to navigate daily life with such conditions is often underestimated and misunderstood, especially by those who don't have the condition. Your suggestion to include mental health support as part of the treatment plan for autoimmune diseases makes so much sense. RA is a life-changing condition and so much is affected by it. Stay encouraged as you continue on your journey and don't give up. Kindly, Latoya (Team Member)

        2. i can SO relate more! Some weeks it feels like all I’ve done is see a doctor or get blood work everyday. I recently started Spravato esketamine nasal treatments 2x a week to help with my depression bc quite simply not being able to find the right RA meds/protocol and having to switch doctors after moving to a new state and resorting to disability at a new job just realllllly put me in a downward spiral. I move done Ketamine IV before a few years ago and I had a really positive response. Hopefulness and mental fortitude came back - the exhaustion of having to fight diligently yet invisibly was just breaking me down I am still just so tired of “fighting myself”.

          I can’t agree more that managing your anxiety and depression and overall mental state is key to just having the fight to want to keep going.

          Some days I have it others I have to find it or call my therapist or friends and family and find it. Bc it gets really lonely.

          But so far Spravato has been a life savor for me, I’m in my third treatment today!

          https://www.spravato.com/?&utm_source=google&utm_medium=cpc&utm_campaign=GO-USA-ENG-PS-Spravato-BP-EX-RN-DTC_Plus&utm_content=Spravato+-+Treatment&utm_term=spravato+treatment&gclid=CjwKCAjwtNi0BhA1EiwAWZaANByoxVd5pCEVgKnwbsnM9JNuh07JakOty4G0zfq75zXHDOTsegMbEhoC9fYQAvD_BwE&gclsrc=aw.ds

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