RA… Where do I go from here?

I am a male age 56 with no previous knowledge of RA or any indication of it in my family history. About a year ago, I started to experience pain in my hands especially at night. At it’s worse, I could not even move my pillow. Was it Parkinson’s that my father passed away from? MS? It was June of last year.
At first, I kept it to myself until I finally told my wife. From all indications and reading, we surmised it may be carpal tunnel. I met with my PCP who did a basic exam and agreed with our diagnosis. I was given the wrist guards to wear at night. For a while, I thought they were helping however over time it continued to get worse.
About 3 months since I started experiencing hand pains, my wife and I relocated for work moved to a three -bedroom apartment in a different state. Each day, I needed to take our dog up and down three flights of stairs whenever she needed to do her “business”. I started getting pain in both my feet. I convinced myself it was simply me getting older and all the stairs I was now doing for additional exercise. I bought new shoes convinced they were the problem as well. In a short time later I also started to notice both knees were also getting sore at night.
After the 7th month, I went to an orthopedic surgeon to address my carpal tunnel pains. I had electrical tests performed to confirm Carpal Tunnel was blocking the electrical pulses into my fingers. Tests on both hands came back as inconclusive. At the same time, the pain in my feet and knees continued at night. I stopped all exercising at this point in time.
After another month with my hands getting very bad both day and night, the Orthopedic Surgeon decided to do the Carpal Tunnel surgery on one hand convinced it was the source of my pain. Surgery went very smoothly.
After a week, I remember telling the doctor that the surgery helped remove all my aches and pains. My excitement however was just a mask provided by the medications I was taking to stop the surgery swelling and pain. After the second week, the pain in my both hands returned.
At this time, it was about 10 months from when my first hand pains started. Within 2 weeks I now had extreme pain in my elbows and shoulders at night. I knew something was wrong. I could barely walk or move at night. I woke up every time I tried to move. I found a new PCP in my new location who prescribed a series of tests which confirmed the RA diagnosis. He immediately got me in touch with a Rheumatoid Arthritis specialist who confirmed I had severe RA which had progressed to all my joints. My first RA score was 50 with inflammation results extremely high. I am now on Methotrexate and Enbrel.
As someone new to RA everything is a new experience. For me, Methotrexate was not enough however when added to Enbrel, I have seen remarkable reduction in my pain in a very short period of time. It is all new to me and honestly, I am not sure what the future holds. Luckily, numerous x-rays have confirmed I do not have any bone deterioration. A very good thing according to my RA specialist.
I thought I would share my experience for those like me who are new to RA and later in life (56 is still young to me). I tell everyone who asks that all along I had excuses for what was happening to me. I feel I may have even convinced my doctors what was causing the pain. It all seemed logical…. getting older, walking many flights of stairs, fishing, bad shoes, sports at a younger age… I had myself convinced. The one fact that I point out was that every pain occurred bi-laterally… both hand, both feet, both elbows, both shoulders…. I tell my family members and others that that was the key sign for me that something else was wrong. A sign I missed
Where do I go from here? I do not know. I do know I plan on a long and happy life. Thank God for the medications available today. What scares me the most is the uncertainty of what is happening to my immune system. Everyone now warns me about infections, illness, germs… you name it. Even this is still hard for me to believe because I historically rarely get sick. Perhaps a cold every few years. It is all new to me and where it goes from here …….

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Pwilcox
    3 years ago

    Kohrimbo, thank you. My story is so similar. I worked 40+ years for the same company, never even had a sick day! At age 62 I was diagnosed with early detection breast cancer. It had not spread, only a lumpectomy and radiation was required. After radiation I experienced the most excruciating pain in my shoulders. No one could figure it out. Family Dr., Neurologist, Chiropractor, Pain clinic…you name it I went. Two emergency room visits- diagnosed with carpal tunnel and sprained wrist, both wrong. Finally a Orthopedic Dr. did an MRI and said I needed total shoulder replacement. I did not know any better so I had the replacement. Two months into therapy for the shoulder I could barely walk and my hands were completely bent. The Therapist said, “oh it will go away”. Finally I went back to my Family Dr. sobbing in pain and he tested me for RA. He called me at home at 9:00 pm and said, “I am so sorry”. My inflammation numbers were very high. I was upset but relieved that I had an answer to my pain. I feel like the entire medical profession let me down for 18 months when all it took was a simple blood test. I finally saw a Rheumatologist in Oct., 2015 and he told me I should never have had the shoulder replacement but how are we to know these things? I thought when I was first diagnosed I would see the RA Dr., get a pill and get on with my life. Wrong! It doesn’t work like that but thank God for new treatments that help us manage our conditions. I plan on a long life also. Life is Good, I just have to approach it differently now. Prayers for you…you are not alone…

  • Eric P
    3 years ago

    I can relate in many ways. I write this at 1:44 am because I can’t sleep. Prednisone helps but i often only find relief enough to sleep with vikodin. I too was on Enbrel and Metho… but it didn’t help enough. Switching to Humara this week.

  • Kelly Dabel moderator
    3 years ago

    kohrimbo, thank you so much for sharing your story. I know your story will be helpful and encouraging to others in our community. I’m sorry for your recent diagnosis and pain. Glad you have found a doctor in your new town and that you are finally getting some answers. In addition to ongoing dialogue with your doctor, these articles may be helpful to you: Living with RA: https://rheumatoidarthritis.net/living-with-ra/
    Methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate/ and
    Enbrel: https://rheumatoidarthritis.net/treatment/enbrel-reviews-how-does-it-work/.
    As for what lies ahead and where you go from here… Your positive outlook is a great starting point and will take you far. You’ve come to the right place. I hope that oiur community is encouraging and helpful to you and that you are reminded that you are not alone in this. Please let us know any questions you have, we’re here to support you. Kelly Dabel, RD – Rheumatoidarthritis.net Team

  • LifenowwithRD
    3 years ago

    Such a familiar story on here. With me, it was my neck that started it all 2 years ago. After many specialist visits, MRI, injections, head scratching, and blank looks, no one had an answer. It was only after my feet started hurting so bad I could hardly walk (and I WAS a runner) then my hands, knees, etc… I finally got tested and saw a rheumatologist. I was just diagnosed (officially) 3 months ago. Sad isn’t it that it takes so damn long to get a diagnosis and a treatment plan. I do have it in my family – worse than we knew. I have twin brothers 2 years older who both have it. One just diagnosed today with an RF of over 750! Think he’s had it for a while? There are 10 kids in my family, so I’m sure there are more that haven’t shown the symptoms yet. I also have a cousin, an aunt, and most likely my mother who has it too. I also have Hashimoto’s which is a related autoimmune disease, and so does my dad. I’m 51, my brothers are 53 – young! Glad to hear your treatment plan seems to be working. I’m still waiting for Plaquenil to kick in and using prednisone on/off when things get bad. Best to you and all with this horrible disease!

  • Poll