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Rheumatoid Arthritis (RA) - Introduce yourself and meet others
Autoimmune Diseases | Last Active: Sep 24 3:33pm | Replies (878)Comment receiving replies
Hi,
New to the group. I am from rural Wi so it took quite some time, years to get a referral to a Rheumatologist.
After 15 years of suffering with severe pain and multiple joint issues and surgeries, including reconstructive surgery of both elbows and feet and a failed carpal tunnel surgery that left me disabled, my physical medicine doctor did an ANA and it was very high.
I was referred to a Rheumatologist. I was diagnosed with Undifferentiated Connective Tissue Disease and most likely RA. No positive labs. This diagnosis was in 2018. Plaquinal I was allergic to so started on methotrexate. Since 2018 we have maxed out on the medication. As long of 2 weeks ago MRI shows bone erosion in several of my joints and spine. Last week I started Cimzia, which caused significant nausea but I am told it can take 4 months to work so will to put up with it for now.
For pain I am on Celebrex for pain but even that does little for the pain. Allergic to Fentanyl and Morphine’s. Allergic to ibuprofen so have tried Tylenol up to 4 time daily most days.
I have been through the pain clinic at Rochester, which basically taught me to keep moving and decrease stress. I am now retired from my nursing career since 2018 and on SSDI and LTD.
I am on Dupixant from my dermatologist. So 3 autoimmune medication currently.
To say I am miserable is an understatement but I try to focus on 1 day at a time. I now spend winter away from my husband, in Arizona until April as I get really good relief there. My husband will retire in 2 years but I wonder if I will be in any shape to travel as we had always planned. I am losing more and more function each year. I was 40 when this started and now 58. I worry about my quality of life in the years to come especially since the pain is so bad already. Sleep is another big problem.
I do stay active and walk 3 to 5 miles most days of the week and really work to push through my pain. I bought a Peroxide hot tub last year and use it almost daily to exercise and relax my muscles. I have lost 30 pounds over the last couple years as recommended so exercise plays a big role in maintaining the weight loss.
What advice do any of you have about pain relief? I see a NP in Rheumatology as my Rheumatologist retired and we did not get a replacement.
I am struggling and could use support and ideas from this group!
Thank you,
Sheri
Replies to "Hi, New to the group. I am from rural Wi so it took quite some time,..."
Hello @fanning I'm sorry for all you're going through . You're not alone. I join you as a PRC graduate and graduated Jacksonville Florida's program 4 years ago. Understanding the principles of the PRC program, there is a lot built around scheduling moderation and modification, mindset, stress Management, exercise, sleep hygiene, healthy diet - while these aren't things that are going to necessarily take pain away ( I think we both understand chronic means just that - it's with us for life ) but these are tools to help manage or perhaps lesson symptoms. FYI I'm voice texting which is one way I use modification, in case you see typos.
Kudos to you on walking 3 to 5 miles that is amazing. Please give yourself credit. So often we get down on ourselves because of our obstacles and it's easy to lose sight of what is good what is positive and what we should be proud of. Sometimes this whole management thing is about reshaping mindset and reframing how to view obstacles - pulling in the viewfinder. These may not be the most popular tips and tools but at the end of the day sometimes that's all we got. It sounds like you're working at trying to keep yourself in the moment and not get ahead. That can be a tough one to do. I attached something that I find helpful in readjusting my mindset. At times I truly need positive distraction like doing something nice for someone or being impactful somehow to feel better about myself. I like to call it a brain vacation, getting mind off of symptoms. Do you resonate with these feelings too?
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Welcome to Mayo Clinic Connect @fanning ! As you can see, there are many discussions going on and many members helping other members. I’m sure that by tomorrow, you’ll have several responses. You can find another rheumatologist if you feel that the NP is inadequate. I say that because you need to have a good talk with your doctor about quality of life. Are you anywhere near a big city? Or a comprehensive medical center or university hospital? You are more likely to find the doctors you need. You can also contact
NORD. National Organization for Rare Diseases https://rarediseases.org/
GARD. Genetic and Rare Diseases organization https://rarediseases.info.nih.gov/. The websites are very similar but the organizations are not. Both of them have list of specialty doctors and will help you find one in your area. I sure hope you’ll find one. I’m also going to ask the mentor who covers pain management to get in touch