Unexpected Symptoms of Rheumatoid Arthritis
It Started with a Rheuma….
I was diagnosed with Rheumatoid Arthritis when I was in the prime of my life. At the time I was heavily into Jiu Jitsu. I was a year into the sport and I was training about 4 days a week at least. I was also doing kickboxing. Because of both these sports, my road to diagnosis was a long one, a year long to be exact. It was long because what I thought was a sport injury was actually one of my unexpected symptoms of rheumatoid arthritis.
Looking back, it all started in my big toe. Yep, my big toe. Interesting place to start! Certainly the most unexpected symptom of rheumatoid arthritis that you can find but I thought maybe my toe was playing up because I was sprawling on it a lot. It didn’t concern me too much. What concerned me was my fingers. My fingers were swelling up and my hands in general just ached a little. I went to the physio and osteo. We had pretty much all agreed that I was getting a bit older, my body just wasn’t recovering as quickly as it used to. Nothing a bit of tape wouldn’t fix. We certainly didn’t think that what I was experiencing was in fact rheumatoid arthritis symptoms.
The Ah Ha! Moment:
I was also travelling A LOT. When I travelled, I let my body rest. I’m not the kind of person who exercises while on holiday. When on holiday I eat, I eat, I eat but I do as much walking as I can. What led me finally to think that perhaps my symptoms were not martial sports related was when I was in Japan. During my first trip to Japan, I became an onsen addict. In my mind, the onsen was an elixir, it was sent from the Gods and could heal anything. But guess what? It didn’t fix my toe or my hands and fingers. In fact, when I got home, it got worse! What the?! THAT’S when I knew something was NQR. My osteo was the one to suggest a blood test to rule out arthritis.
Welcome to Rheumatoid Arthritis HELL:
When it was finally confirmed, the inflammation already had a year’s head start. It was almost overnight that the inflammation reared it’s ugly head. It was as if the Rheumatoid suddenly came to life and declared ‘Ha! Now that you know I exist, let me show you what I’m about!!!!!’ I felt like I was being possessed. I’m sure that if I was living in the dark ages, I would’ve insisted on an old priest and a young priest. Come immediately and cast this evil being out of me!!
Like I said, it was as if overnight I could no longer recognise my own body. At 38, I was healthy, active, confident, strong and fit. But once R.A hit, I could barely move. At night, I couldn’t sleep because my body just ached. I couldn’t roll over. Well, I could but it took a hell of a lot of effort so I just didn’t do it.
Wait… it gets worse
The mornings were hell. My hands were so stiff and sore to the point where I couldn’t even flick the light switch. My legs were the same and each morning I thought I was going to wet myself because I couldn’t get to the toilet fast enough. I also live in a two-storey house so it would take me a good 10 minutes just to walk down the stairs. My joints were locked up so tight that it took considerable effort so I had to take breaks while walking down 20 steps!
But you know what the worse thing was? The fatigue. It drains you. Your body becomes like a damaged battery, needing constant charging. I could go on but I think you get the picture. I started to hate life. Learn from me people! If you so much as think that you may have RA, go and seek medical advice NOW! Even unexpected symptoms of rheumatoid arthritis should be looked into, remembering this all started in my big toe! If you have an upcoming appointment with your rheumatologist, read here on how to prepare and get the most out of your visit.
Rheumatoid Arthritis Medication and Treatment – Part 1
Medication has been my saving grace. Medication and pole dancing (I will elaborate on the pole dancing in a later post) has helped me rebuild my body and my life. I’m about 60% to where I was pre-rheumatoid but I am hopeful and enthusiastic. As my rheumatologist keeps saying to me, ‘there is light at the end of the tunnel. We just don’t know how long that tunnel is for you but there is light at the end.’ So I’m holding onto that. I am moving in the direction of the light. Slowly but surely. I’m hoping some of you out there who are also in the tunnel will reach out to me so we can walk through it together. I’d like some company.
And you?
There are a range of symptoms of rheumatoid arthritis. You can have one or all of what I just mentioned. You may even have had unexpected symptoms of rheumatoid arthritis yourself.
Comment below of your rheumatoid arthritis symptoms and subscribe to my email list so you’re always up to date with the latest Rheumas.
If you have been diagnosed, you need to read about my tried treatments.
Hi!
What you said about diagnosis and symptoms was EXACTLY what I experienced last Friday. I had a sore knee and a sore shoulder but dismissed both as being old injuries then suddenly it came into lots of other joints in my body, so I got a blood test and the VERY day that I was told “you have RA” was the day I had my first flare up! In the middle of the night I thought someone had snuck into my room and poured petrol on my right hand, setting it alight! I had taken one dose of Celebrex and some Panadol Osteo. The pharmacist told me the next day that it may have been a “stress reaction” to hearing the news. (???) I too, feel like I have gone from fit, healthy 45 year old with ZERO health issues, never taking so much as a vitamin pill to crotchety old woman who walks like a newborn calf in the mornings and gets teary if the kids she works with ask “ Miss can you open my lunchbox?” No, no I can’t.
Lainey, I’m a teacher too and RA has impacted every part of my life especially my work. I’m going to discuss this in my next Rheuma. What kind of teacher can’t even sit on the floor with her students? Sometimes I just have to and it’s so embarrassing when I try to get up. I’m sure you know what I’m talking about! Subscribe to The Rheuma Mill and we’ll get through it together x
I HAD to retire from teaching in 2011. I was diagnosed with RA in 1998. I could no longer teach high school students History in Chicago public schools. I could no longer move and up until I retired I had been on ALL known rx’s including biologics. About the time I retired I had just switched to Orencia and Imuran. These rx’s have made my life more normal. I can move again because of these rx’s.
Thank you so much for sharing your story Jill. I’m so glad that you’ve been able to find some normality thanks to meds.
Hi I believe I have had RA for a long time undiagnosed. Late last year I contracted sceptic arthritis in my right wrist. Terrible condition, lost the use of my hand for 4 months and still can not make a fist to this day. Only a month later was diagnosed with RA but due to septic arthritis can not use alot of medications for RA due to CRP levels being too high still. Because I am allergic to over 8 different antibiotics it makes it hard to get rid of septic arthritis.
Hi Karen,
Thank you so much for sharing your story on The Rheuma Mill. I am sure it will help so many. How very frustrating for you! I am so sorry that you have to endure all this. There is just not enough awareness out there when there needs to be. The condition develops so fast and early detection is so vital. I hope you are in good hands and will find some relief to your pains soon.
This post made me cry. It is both heart-breaking and refreshing to have someone understand what I am going through so well. The part about rolling over in bed and trying to get down the stairs was as though I wrote the post myself. The pain is unbearable some days. When someone says “I am sorry that you are having a bad day” I always quickly reply “It’s ok”… well today, I have decided it is not ok. Being in so much pain that you cry trying to get down stairs and rolling over in bed makes you moan in pain… IS NOT OK! I try to freaking hard to be positive about my disease. Always looking for the silver lining and growth and opportunity. I am not sure which is most draining, my pain or forcing myself to be positive about it. But I will not give up. This will make me stronger.
Hi Lesa,
Thank you so much for your contribution to The Rheuma Mill. Yes! Don’t give up! I know some days we feel like giving up especially when the pain is so bad but it really is just temporary. Keep moving and keep looking forward and you will get there. There is plenty of resources here and I’ll keep adding to it. If there is anything specific you want help with navigating, let me know. RA will make you stronger, just like it made me.
Chelsea
I too, am a young person recently diagnosed with RA. Starting at about age 15, I had widespread pain in my joints and muscles. My PCP said it was parvovirus(people get it too, not just dogs!) and would go away in a few weeks. It never did and I ended up being referred to rheumatology. I was diagnosed with fibromyalgia because I fit the definition of basically having something but nothing identifiable. I’ve been treated for that ever since. I’ve seen all kinds of doctors over the past 15 years (I’m 30 now). OBGYN, neurologist, neurosurgeon, rheumatology, and switched PCPs. Everyone ran more and more tests and added more medicines. The only thing that ever helped was anti anxiety and pain meds on a regular basis. Then, a few months ago, my rheumatologist retired. The first day I saw the new one, he diagnosed me with seronegative RA. My mom has RA so even though it wasn’t a total surprise, it was quite frustrating to have been with the right type of physician the entire time and being misdiagnosed. My new dr said it was RA the whole time and I should’ve been being treated and the progression could have been avoided. It’s now all in my neck and hands and it wasn’t to start with . I started Plaquenil and have had some fun side effects like vomiting and severe night sweats and hot flashes. I am hoping that with time, I will see some improvements but none yet. Anyone else have similar experiences?
Hi Chelsea, great to have you here and thank you so much for sharing your story. I know it will help many. From the thousands of people I hear from, I know you are not alone in your story. It is so frustrating to hear stories of misdiagnosis which is why I wrote this post. It is so important for people to be aware of the possible symptoms because early detection is paramount to getting proper treatment and not causing further damage. Unfortunately, I also hear many complaints on a daily basis about side-effects to Plaquenil. The period of trial and error with meds and then waiting for to see if they work is a long and frustrating one but I know you will get there. I hope you don’t mind but I have also shared your story in The Rheuma Room.
May I ask what the pain in your toe felt like? I have been on muscle relaxers and naproxen for months and neither help. The only thing that gave me relief for about 1 day was a 2nd round of steroids. My hips hurt so bad I can barely walk some days and sitting to standing is almost unbearable. The pain while sleeping….ugh! I still have no idea what is wrong and it’s been 6 months.
Hi Chastity! Thank you so much for contributing to The Rheuma Mill. In response to your question, The pain in my toe was like an annoying ache. It was like a stiffness that wouldn’t go away. I couldn’t bend or release it. It just felt locked. It’s best to go see a rheumatologist. If it is an auto-immune/rheumatoid arthritis thing then you have to get onto some better medication. Rheumatoid arthritis or any auto-immune condition can get real ugly real fast so best to get on top of it now. Please keep me updated.