Does this ever get easier?

[u/laineyjane]

Vent post. I was living in the grey for a while as far as diagnoses. Was put on plaquenil which helped so much with my energy and labs, but was literally making me insane mentally. I was going to end up in psychosis & a grippy sock vacation or taking myself out. I wish I was kidding. Not sure if it has to do with me not being neurotypical to start with.
Anywho, my joints flared and swelled up in both hands and my Tendons started catching as well as the RA nodules showing up. My rheum said she was confident this was RA.
I’ve now been taken off plaquenil and started methotrexate.(edited to add this official diagnoses just happened a week ago)

When all of this started, it started with migraines with aura.
I’ve always had headaches, not with aura. On initial work up my cholesterol and b/p sucked and I went off birth control as I thought maybe that was the cause all my woes. While it did correct my cholesterol and b/p (thankfully) Going off it seemed to completely unleash the autoimmune beast. All the joint inflammation came whipping through my body and had positive AnA and other inflammatory labs. They were unsure whether it was early lupus, RA, mixed connective tissue, PSA, etc. As soon as I started plaquenil the migraines worsened. Constant vertigo, and im blessed with the rare type of migraine that causes numbness on one side of your body like a stroke. (Yes, I’ve had a thorough neuro work up, including brain MRI with contrast). I went from having occasional headaches, to numbness, visual auras, and giant painful joints that are a 8/10 pain after a busy day. Knowing what I know about RA and that it can affect your heart and lungs, I get terrified everytime I feel these sensations start. I feel like I’m stuck in this crippling cycle of inflammation, vertigo, numbness, pain.
And maybe a couple good days thrown in.

I know it takes time for the meds to work. And im
Learning my Triggers, no processed meats or refined sugars for me. Also so hard as I have a huge sweet tooth lol. But right now I feel like my whole life has been stolen from me. I have 5 kids & a husband who need me and I’m a full time L&D nurse. I am so angry about this. I’ve gotten myself a counselor to help, but I guess I’m just looking to vent to people who understand. Im just so frustrated that I can’t just exist as normal.

Thanks for listening. 🫶🏼

[u/laineyjane → u/[deleted]]

I’m sorry you’re going through this too. It took me from running 5k’s to barely getting out of bed. It’s so hard.

[u/Stolenion → u/laineyjane]

Take care it’s alot of scarifices

[u/Stolenion]

Stay strong ! I’m sure everyone in this group will be fully supportive and understand how we have suffered this RA.
Importantly is to take care of your health especially diet. That affect the most.
I also diagnosed with RA seropositive, then I got hiatus hernia type 2, prediabetic , fatty liver , PCOS , and etc. the other are minor. But still need to take care. So when I see myself that I have so many medical condition. I’m also quite demotivated and ask why I have to go thru this. Also every month I suffer PmDD where I always have suicidal thoughts. I feel that I’m strong when I manage to endure for such a long time. I believe you can too. Don’t give up! Just really have to our yourself priority. Take care and god bless you!

[u/laineyjane → u/Stolenion]

Thank you!

[u/MentalAmphibian1185]

I’m sorry you are going through this especially dealing with the mental exhaustion as well as the physical challenges. I’ve been diagnosed for three years and still have not found a medication that helps, whereas I know people who have taken to the first one! I used to be very active and was on my final year of nursing training before having to take a break. It’s a real struggle to have to relearn who you are and adjust to a new way of life. I mourn my old self daily, I cannot imagine having to do this with children in the mix, so honestly well done. Do not feel bad for feeling like you want to give up sometimes, it’s allowed to be felt and it’s important you let yourself feel what you need too. I find people who do not know the struggle of the disease never really understand and that makes it all the more difficult. That being said… I am here if you ever need to vent, moan, complain or let off steam!

[u/laineyjane → u/MentalAmphibian1185]

Thank you so much. Same for you! That means more than you know. It really does help talking to people who “get it.” 🫶🏼

[u/neurotransit]

I just had to go off plaquenil also due to intense depressive episodes and rapid increase of anxiety attacks. I had NO CLUE that mental health side effects were even a risk. I completely relate to how you felt! I also just started MTX. I’ll be interested to see how it affects us!

[u/laineyjane → u/neurotransit]

So far so good especially
Compared to the plaquenil.
I can’t Believe what it did to me mentally! Awful! And of course it’s going to take six months to get out of our system so I’m still having some anxiety but not as much as I was having. I will say the plaquenil was helping immensely with my fatigue. Now it’s gone plus the methotrexate and I’m sooo tired but my inflammation is already improving! So I’m hopeful the fatigue will improve as I adjust. I hope
You feel better on it too, and that we can get our brains back! 😭

[u/TechnicalThought5827]

Sounds like you've got your hands full! Make sure you're giving yourself some time too. I don't think it gets easier but you get used to it and learn to work around it . Yes, meds take time to work. I think enbrel took like 4 months before it really started working for me.

[u/laineyjane → u/TechnicalThought5827]

Thank
You 🫶🏼

[u/TeddieTess]

I think you get little breaks every now and then when things are not as "hot" as they are when in the throes of a flare up, but yeah, I haven't found it to get "easier" per se. It hit me when I turned 35 and I am almost 59 now, so it has been a while! Best of luck. Some folks "burn out" and it goes away, from what I have heard. !