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Relieved to Know: Breaking the Cycle

I am 50 years old and I have been living with AS since my early 20s. I just didn’t know it because my family has “always had arthritis and live long lives but just in pain”. That’s what I was told. So, I figured I would just be a drunk grandma in the corner in my old age and happy. However, I became a grandma at a much younger age and decided that it wasn’t fair to my own children if I didn’t figure out what was ACTUALLY wrong with me.

This is NOT normal

When I was 20, I would have to have my hands “warm up” in order to work properly in the morning. My ankles would randomly hurt at times along with my knees. All chocked up to early arthritis and old high school athletic injuries. It was the family’s normal so I rolled with it. Clue: It is NOT normal to have that many aches and pains and to have hands that lose grip just cause they stiffen up overnight in your 20’s. Pains got worse as I got older and all I could think of was that getting older really does stink! How was I going to feel at 80?

I had put on some middle-age weight so I decided not to be a “round” grandma at 40. I started working out, eating right and I lost 100 pounds in one year. I had a personal trainer and I could run a 5k in 23 minutes. Not bad for an “old” lady. Probably the best I felt in a while but I DID have a hard time recovering from some of the workouts. You can only keep THAT pace up for a while before it is too much.

I guess I just have a bad back

I got a new job which required me to travel A LOT. The weight came back a little too! I started having back issues so, like any good patient, I went to the orthopedic recommended by my general practitioner. They diagnosed me with three bulging discs in my lower back but the MRI only showed a little strain and not much else. They stuck by their diagnosis.

Still, they wanted me to go to physical therapy which also made it worse! The therapist even went so far as to walk out to the parking lot and check out my car’s lumbar support. It’s a Mercedes so I don’t think that was the problem! It wasn’t. I finally gave up on physical therapy, bought a back brace, gave up on the back brace and just resigned myself to the fact that I had a bad back. I also took Advil.

My hopes were crushed

Age 45 I woke up one morning with a neck and shoulder ache that was unbearable. I couldn’t lift my arm above my head and washing my hair was impossible. After a few days, it wouldn’t go away. Went to see the Orthopedic again. This time, they were baffled. Took lots of blood. BTW: my bloodwork is always beautiful EXCEPT for the inflammation markers which show up every single time. See, baffled! He finally conceded and sent me to their Rheumatologist. I was so happy cause I finally thought I would get some answers. I wrote down EVERYTHING that had ever hurt or happened. I was ready for her.

Not to be. My hopes were crushed quickly. She told me that my ankles swell because I have high blood pressure (which I don’t unless I am in lots of pain that day), my arms hurt because of carpal tunnel, the knees and shoulder were from osteoarthritis, I was fatigued because I didn’t get enough sleep, and the back was from my job which kept me in the car. She never did explain away the small fevers but, of course, told me to lose weight. Wow, think of the cocktail of medications she could have given me! I basically told her she was wrong and it had to be something else. I now became determined.

The relief of receiving a diagnosis

One of my close friends has rheumatoid arthritis and told me to talk to her Rheumatologist. The best day of my life was the day I sat in her office and she told me we would figure it out. The second best day was, at the age of 48, finally having a name for what ailed me. Not great news, of course, but the relief that you aren’t crazy and something really is wrong is more overwhelming than you can imagine. You cannot fight something unless you know its name.

I am still in that space where the doctors try incremental treatments before bringing out the big guns. I hurt almost every day but I have been so used to pain all my life that I just push on and through. Some days are worse than others and I adore my naps! If I didn’t hurt in the morning, I would think I was dead. A biologic is our next “try” which is fine with me and we will see if it helps with remission. Again, the demons have been named.

Even better (well, not exactly better)? My daughter is in her 20s and has the same issues but, guess what, we now know what it is and can catch it earlier to delay the progression (hopefully). My Rheumatologist wants both my kids to come in so she can review and start treatments if necessary. Maybe they will break the cycle and can live without so much pain. After all, that is why I really did all this in the first place!

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

Comments

  • Dorabell
    6 days ago

    It’s a long hard road to travel. As you mention it helps to have support. If you don’t have someone who has experienced chronic pain, you feel alone. My husband reassures me that others can’t understand unless they haven’t walked in your shoes. My husband does his best to make life as easy as he possibly can. I am glad you have someone who can show empathy towards you.

  • matinatl1 author
    5 days ago

    Thank you. Yes, it is nice to have support

  • Dorabell
    1 month ago

    I really identified with your story. You mentioned so many symptoms I failed to mention. I have a friend with MS we have bonded together with a chronic illness in common. As you mentioned I sometimes having trouble overcoming the therapy but on the positive side I am stronger. I appreciate your story and hope the very best in your battle with AS.

  • matinatl1 author
    5 days ago

    And to you as well

  • Lawrence "Rick" Phillips moderator
    1 month ago

    I am so thankful that I went almost immediately to biologic medications. It was and will remain such a blessing. I cannot imagine a long drawn out process of being diagnosed. I qm sorry this happened to you.

  • Dorabell
    6 days ago

    I recently talked to my doctor about my increases level of pain. He was pretty blunt with me. He feels he has done all he can do for me. He has turned me over to Pain
    Management. I have never been a “doctor
    hopper” but I think it is time for a switch. I am happy that you have found something that has really helped you to manage yout pain.

  • matinatl1 author
    5 days ago

    I am hoping the biologics help relieve some of the pain. I don’t have the expectation that I will ever be pain free of course

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