Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

zenk | @zenk | May 1, 2019

Lisa, I seems that he should have at least done blood work to check for inflammatory markers . Perhaps your primary would do the tests . Tell your primary about the visit, or go back to the Rheumatologist and tell him your concerns. Unfortunately, it takes so long to get attention. Zenk

lisaangela | @lisaangela | May 1, 2019

In reply to @lioness "@lisaangela Since it's been over a year can you find another rheumatologist to go to ?" + (show)

I’m researching now! Will be making a new appt. ASAP!

lisaangela | @lisaangela | May 1, 2019

In reply to @zenk "Lisa, I seems that he should have at least done blood work to check for inflammatory..." + (show)

It’s so frustrating. I’m determined to figure it out. But it is exhausting. Thank you for your help.

boomerexpert | @boomerexpert | May 2, 2019

In reply to @lisaangela "I’m looking for some direction, guidance, info help. So here is my story. I am currently..." + (show)

@lisaangela

I’m looking for some direction, guidance, info help. So here is my story. I am currently 52 years old. (Female) Up until 2013 I felt healthy, no issues with arthritis etc. I started doing CrossFit in 9/13. (I was 46 years old) I loved doing it, lost weight, felt great, got into great shape. But shortly after startung CrossFit my hips started to hurt. I thought it was just muscle aches etc. kept going. I began limping, pain etc. In 2015 I saw an orthopedic who gave me some injections and suggested I had tendinitis, and arthritis. But the pain just kept getting worse. By 4/16 I decided to see another orthopedic. After X-rays and MRI I found out I had a torn labrum and bone on bone arthritis. I had my first hip replacement in 9/16. Three years after starting CrossFit! In 5/17 I had my second hip replacement. In 5/18 ai could barely use my shoulder, went to the orthopedic, discovered I was totally bone on bone arthritis and I had a total shoulder replacement. Since then slowly all of my joints are being destroyed. Currently I need my right thumb joint replaced. My hands ache horribly. My ankles hurt. My neck hurts. I have radiating pain in different joints at different times. I feel like a mess. I have horrible inflammation in my body everyday. I never knew what inflammation was until 2013. If I do any heavy duty house work or exercise I am in pain for 3 days.Two years ago I found my biological mother. I am adopted. She has had rheumatoid arthritis since she was 30 and encouraged me to see a rheumatologist. She informed me that she has tested serum negative for rheumatoid arthritis all her life, but has the diagnosis and is on meds. I decided to see a rheumatologist last summer. After looking at my records and examining me he informed me that he thought I had severe osteoarthritis. He recommended that I keep taking my anti inflammatory and return of my symptoms worsen. He didn’t test my blood. I felt frustrated and uncertain as to what to do next. I continue to take anti-inflammatory medication but my joints keep getting worse. I also have inflammation in my eyes now. I’m much more tired and overwhelmed. I’ll just add that I have been a counselor for 22 years and do not have a physically stressful job. I sit and talk to my clients. I am completely baffled by what is happening to my body and need some help! Any information Or suggestions would be great! I am considering going to another rheumatologist for a second opinion. Any recommendations in the Buffalo area would be appreciated. Thanks for listening. Lisa

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@lisaangela absolutely get a second and even third opinion...you may not have RA, it may be Lymes', Lupus or another auto-immune disorder. But one thing's for sure, you have something systemic causing chronic inflammation in addition to advanced osteo-arthritis. Have you completed menopause?

boomerexpert | @boomerexpert | May 2, 2019

In reply to @lisaangela "It’s so frustrating. I’m determined to figure it out. But it is exhausting. Thank you for..." + (show)

@lisaangela as you've provided no info on your profile, need to know where you live

lisaangela | @lisaangela | May 2, 2019

In reply to @boomerexpert "@lisaangela absolutely get a second and even third opinion...you may not have RA, it may be..." + (show)

No I have not. All the issues I have seem to have been triggered while I was doing an intense work out program called CrossFit. Before that I never had a hip ache, or inflammation. It seemed to me that the intense strain on my body triggered some sort of auto-immune or inflammatory condition. Since then I have had nothing but issues. Thank you for your help. I live in WNY in between Buffalo and Rochester NY. Closer to Buffalo!

lioness | @lioness | May 2, 2019

@lisaangela Hi you could be right but you should see your Dr if it doesn't clear up. I have inflammation and I take ginger- tumeric tea they are both anti inflamatory so this is what I take but see your Dr

boomerexpert | @boomerexpert | May 3, 2019

In reply to @lisaangela "No I have not. All the issues I have seem to have been triggered while I..." + (show)

@lisaangela recommend you seek care at a Buffalo medical center/teaching hospital

bia18 | @bia18 | May 12, 2019

Hello my mom is suffering with rheumatoid arthritis. Her disease was diagnosed in 2012. But there is no improvement in her condition we have tried so many hospitals in but can't find a best doctor who treat her well. The doctors here just gave her medicine but they didn't guide us properly. I searched alot about this disease and found Mayo Clinic the best hospital for this disease and we want to come to your hospital for her permanent treatment. As far as I know this disease needs proper checkup and we can't come again and again to usa. Will you please give us a permanent residency so our mom can get a routine checkup and the best treatment with good environment. Me and my sister will do a job and don't worry we have money for her treatment. I don't do this for usa permanent visa, I know alot of people do this type of cheap things to get a residency in usa. Please do something for my mom, our father left us so we have only our mom in this world. My mom's condition is not good and she is in pain after my father left her. She have so much pain in her joints and she can't walk sometimes because of her knees pain.

Ethan McConkey, Moderator | @ethanmcconkey | May 12, 2019

Hi @bia18 and welcome to Connect. You may have noticed I moved your post to this existing discussion on rheumatoid arthritis so that you can Connect with others who have similar experience.

That must be so tough watching your Mom find no improvement with her condition. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

I also wanted to mention that Mayo Clinic Connect is a patient-to-patient community – the most important ingredient of Connect is its members, like you. It is not designed to be a community for medical experts to give advice, but is a place to learn from all your shared experiences, insights, suggestions, and tips. If you'd like to learn more about Connect, the "About Connect: Who, What & Why" Page, https://connect.mayoclinic.org/page/about-connect/ has some great information.
On the other hand, you can view Mayo Clinic experts talking about various health conditions, treatments, published studies, etc. by visiting the Connect Pages at https://connect.mayoclinic.org/pages/

In addition, I wanted to introduce you to fellow Connect members @boomerexpert @lioness and @kozlo52 as they all have experience with Rheumatoid Arthritis and may be able to offer you support.

I also wanted to share a link to the Caregivers group, where you can find others who are helping take care of their loved ones: https://connect.mayoclinic.org/group/caregivers/

Back to you and your mom @bia18, you mentioned that past doctors have given your Mom medicine but not proper guidance. Are you comfortable sharing an example?