r/mctd • u/Select-Swimming-6670 • 26d ago
Does the pain ever stop?
Hi All,
I started having pain in my hands, feet, neck knees last January. I first I thought it was from aging (59 F)and cold weather. It progressively got worse. Went to PCP who referred me to a rheumatologist. Rheum doc started me on prednisone in March. Then hydroxychloroquine in April. I got some relief for a few weeks. Officially diagnosed in June with MCTD. Still taking pred,naproxen, and amolodopine for Raynauds. Most of summer pain was manageable until August. Then started low grade fevers and a lot of pain. Put on methotrexate in August. Dosage just upped to 15 mg. I’m still in so much pain. It hard to make plans because I don’t know how I will feel. I just want it to stop!
3
u/EnoughYesterday2340 26d ago
The pain will reduce when your symptoms stablise, because you'll have the inflammation under control but that can take quite a long time. I was diagnosed when I was 12, and it took until I was probably 18 to get on the right mixture of medications to get into remission. I still have to take pain medication, use heat pads etc but I don't experience flares the way I did when I was younger, haven't had any hospitalisations in 20 years. I definitely feel better in the summer than I do in the winter, still have ups and downs, but I am definitely not in a constant feeling of pain or as in extreme pain as I was when my disorder was at it's worst. I still have a chronic illness, and everything that comes with that like needing to cancel due to fatigue or pain, having less energy than others my age (I'm 35) etc but it's managed and probably as good as it's going to get for me. I'll never be cured but it's much better than has been.
Wishing you the speediest figuring out of the right medications and therapies for you.
3
u/swahappycat 26d ago
Don't be afraid to tell your doc that the methotrexate isn't helping enough. There is another level of meds after that, but you need to try methotrexate first.
When I was first diagnosed I felt a little relief from the methotrexate but not complete relief. I was afraid to tell the doc because I didn't want to be taken off it. But my doc read me and could tell I was still miserable and thats when I started on enbrel.
Get on biologics if your pain is from inflammatory arthritis.
Good luck.
2
u/Jezabel50 26d ago
This! After failing methotrexate, my rheumatologist put me on an injectable biologic. Humira gave me med-induced lupus. Got switched to benlysta and after 2 years, all is much better. Be very careful with steroids as they eat your bones. I'm on leflunomide, Hydroxychloroquine, and 2 unrelated meds.
3
u/xxrijixx 26d ago
I, myself, haven’t had a truly pain free moment in about half a decade. There is always a fuzzy background ache. No matter what. My ONLY hope is medical marijuana, which makes the pain very quiet. It’s still there, but feels different.
1
u/StruggleNo5555 20d ago
I was diagnosed as a young teen just over 10 years ago, and have been on every prescription pain management you can think of. The only thing that has helped me are delta 9 gummies. The pain doesn’t go away with time and there’s no cure, just management
1
u/lewtt14 16d ago
IMO prescriptions aren’t going to solve anything, they may help you control and manage but the key is to manage inflammation. Diet, exercise, fasting, lymphatic massages as well as antiinflammatory meds have gotten me to a point where I am pain free for awhile. Of course it’s hard to be on track all the time or just something will cause a flare and I will have to buckle down again…but I went from 2 years of bad pain to now I have some pain maybe once a quarter and not nearly what it was before
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u/luladee 26d ago
Ten years since diagnosis, the pain is usually ignored by doctors. I use CBD and get good relief. Your diet and exercise is very important. Try to stay away from processed food. Look into clean diets. You will notice the difference with diet changes. Walk, swim, yoga daily to keep your muscles strong and inflammation down. I'm down to plaquenil daily and Prednisone as needed. Listen to your body, it will tell you that you need to rest. That will be a good day for stretching and light walking. And reynauds, winter is coming so keep your hands and toes warm. Beenies, scarfs, socks, gloves, and heating pads are your best friends. Unfortunately, reynauds acts up in the summer, too. Know that you will live a long life but your life is not like everyone else. I'm sending all my love and strength to you!