Diagnosed with RA a year ago, my journey so far and some questions...
Thank you and hello everyone.
I have been looking to connect to other people who have similar arthritis and or auto immune disease that I can discuss with and listen to their experiences and hopefully learn and adjust for the journey I have ahead of me. I have struggled to find any group especially any face-to-face support group even know I live in Sydney. Therefore, the only advice I have been getting is from reading online, my rheumatologist or GP but neither have actually experienced RA. After reading some of the posts here and some posts on online arthritis forums I am either lucky or just early in my journey and have a lot of pain and issues ahead of me..??
Apologies in advance for this very long post. I am sorry if the questions I ask seem trivial to some of the issues that other people in this group are going through.
I was diagnosed with RA approximately a year ago, at 38 years old, after I had my first flare in my hands, wrists and thumbs. It sounds like I was lucky to be diagnosed so soon although who knows how long I had underlying conditions. Ive always been very injury prone and from playing football as recently as 4 years ago I have managed to do a lot of joint damage to my ankles and knees to name a few. I always seemed to have niggles and some pain somewhere but this may have been before my RA, I am just not sure..
My rheumatologist started me on methotrexate around Feb 2022. After a rough start, potentially more to do with the anxiety of the diagnosis and having to take these drugs, I settled into it and was feeling relatively fine with little pain for a few months. However since August and after an extended holiday where I was probably enjoying myself too much I.e drinking and smoking etc.. pain and redness at the base of my thumbs and some pain in my wrists returned and has stayed with me pretty consistently from August until now.
I have started on fortnightly humira injections approximately 5 weeks ago. The humira has been a mixed bag. After the first and third injection the pain in my hands/thumbs reduced substantially for a week or so but came back for the second week. After the second humira injection I noticed no reduction in pain or redness in my thumbs at all. Iam not sure what to expect moving forward. I would love to hear other peoples experiences of humira or biologics in general. I understand that everyone’s situation and circumstances are different and also that not everyone wants to share.
I have been considering what activities both recreational and or house maintenance or my job / work I should continue with and which I should stop incase they do more harm than good. I was hoping I could get some advice from people here and their experiences. My general question is should I stop any activities that are generally sore on joints to try and protect my joints long term??
For example, downhill mountain biking, this is one of my hobbies and its great exercise however it is very hard on hand joints in particular as it high impact and constant bumping going down mountain trails at high speed. I have mountainbiked a few times since my diagnosis but 6 weeks ago after being on the downhill bike trails my hands joints were sore for at least a week after so I reckon I need to knock this on the head? I may need to switch the mtb bike to a road bike which is less impact..
Football is another one which I almost started again but then realised this is probably not the best sport for me now as it is likely ill only damage my ankle or knee joints or other joints further..
I do yoga which I think is something I will continue to do for as long as I can, it is low impact and great for mobility, strength and mental health. I play golf which again is a good relatively low impact exercise. It involves long walks however it has some impact in the hands and twisting of shoulders backs and hips from swinging golf clubs but I think its fairly low risk and I aim to keep golf unless someone advises me this is not a good idea long term?
In terms of house work / maintenance, I am still mowing my lawn with my lawn mower and strimming etc which is fairly hard on my hands and can leave me a bit sore afterwards sometimes. Is this something I should think about finding a solution for i.e. stop doing this??
I work at a computer using a keyboard and mouse all day every day, although I am probably lucky I don’t do a manual trade. I obviously need to keep doing this to pay the bills but am trying to find ways to make my work space more comfortable in terms or ergonomics etc
Again, apologies for this very long post and again I am sorry if the questions I ask seem trivial to some of the issues that other people in this group are going through, I am only trying gain some advice from other people who have went through similar experiences and find out if I am in for a world or hurt and or how best to navigate my path forward…
, I am so glad you took the time to share here and please don't apologize for anything you wrote. And your questions aren't trivial at all. Many of the questions you are asking are questions other community members have asked themselves at one point or another. Finding that balance between moving your body enough to stay healthy and flexible but not so much as to cause injury or aggravate your joints can be a challenge.
It sounds like you are working on finding that balance. And, frankly, you are the best person to answer those questions. A lot of navigating physical activity with RA is listening to your body's cues. A little stiffness may be okay. But a lot of stiffness or pain? Well, then you may decide to cut back on that activity. Low impact activities are generally pretty safe, but if you feel that they are too hard on your body, then I would consult your physician and see what he/she thinks.
So, yes, football may be out. Mowing, well, that's up to you. If you have the option to hire that out to someone else, well, maybe you would prefer spending the time you spend on mowing in another way. Mountain biking is great exercise, but a serious injury caused by a hard fall may be even more challenging with RA. Switching to a road bike may be a way to still enjoy riding with less joint impact. And many people continue golfing into their 80's, so barring a serious joint injury, I would think it would be a safe activity to pursue as long as you feel comfortable.
These are just my opinions and I hope you get some helpful feedback from other community members who can share their insights with you.
Again, you are the best judge as to what you can keep doing. It sounds like you pretty much know what you feel like your body can handle at this point and I would just keep listening to yourself and your body.
Best, Erin, RheumatoidArthritis.net Team Member.
Hi
. First, let me echo . There is no reason to worry about the length of a post or anything being trivial. There is nothing trivial about RA, so nothing trivial about trying to figure out how it will potential impact your life and what you can do about it.
With that said, a first step is to figure out how to work with your doctors to control your RA to give you the life you want or at least work towards the best life you can make with it. I want to share with you this article from our contributor Kelly Mack (full disclosure - I'm her husband) on questions for the doctor: https://rheumatoidarthritis.net/living/questions-for-the-doctor. I want to call particular attention to the section on goals and the fact that they may have to change over time, but they give you something to shoot for. Best, Richard (RheumatoidArthritis.net Team)
Hey
thank you for sharing your thoughts and questions. This community is the best place for that. You don't ever have to fear oversharing!
I think Erin covered your questions about pain management and activity levels as I would have so I am just going to address some of your other comments/questions.
Your doctors have probably told you this is the kind of disease that does get worse if left unmanaged which is probably why you noticed a slight increase in pain over the last year. It can take time to manage the disease aka not all medications will work for you. I had to go through countless oral medications, self-injected biologics, and biologic infusions until I finally reached a point where I didn't feel like the RA was getting worse at all. Again, something to be worked out with your doctor. They usually tell you to try each medication for 3-6 months before you decide it's not working. I did try Humira for 6 months at one point and never felt like it got me to where I wanted to be. Eventually, I started a monthly Actemra infusion that seems to be working for me for now. Of course, there's no guarantee on how long it will work so it's sort of a potentially never-ending quest.
That being said, I also believe in the combined medical and natural approach to manage my symptoms. You mentioned your pain got worse after a holiday period of more drinking/smoking which doesn't surprise me because the same would have happened to me. In my journey to feeling better, over time I have learned what a lot of my personal triggers for increased pain and swelling are. Drinking, processed foods, seed oils, too much stress, lack of quality sleep, or lack of any daily movement, will all flare me up. While you work with your doctor to find the right medication for you, there are definitely diet/lifestyle things you can do and explore to try to feel better.
I think it's great that you're doing yoga. Sadly with RA, as you know, it can be more challenging to do higher-impact physical activities and sports, at least until you've found a medication that works for you. In the meantime, any movement you are able to do without hurting is likely helping. I like yoga, walking, tai chi, and dancing. I do at least one of these every day.
I hope this helps!
Best of luck,
Franki
No question is trivial! At least you didn't have to fight them to get the right tests and results done! Just getting the diagnosis can be a challenge! Strap in cause RA can be a pretty wild ride....
Do a LOT of research, especially on the medications they suggest for you. Some have some pretty significant side effects. Most people will see the treatment plans and drugs change over time. In my case I was changing injectables about every 18 months as they would stop working.
RA is a dynamic disease and it is systemic (meaning it can affect more than one body system). Personally, I have heart issues and Rheumatoid lung nodules in addition to the base RA diagnosis. I said all that to remind you to keep up with your other health screenings to catch anything else that may develop down the line!
As everyone else stated, listen to your body. It will tell you when it's time for a change or that you're doing too much!
Not sure how your healthcare system work 'down under' but here in the US it can be a real challenge.
Lastly, DON'T EVER GIVE UP! Taking a break is fine, Quitting is not.
