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RA Causing a lot of pain! Any helpful hints?
Autoimmune Diseases | Last Active: 3 days ago | Replies (22)Comment receiving replies
@lindaadele When we say "I have RA", it's kind of like saying "My back hurts" - that is, there are many types of RA, that can cause pain in many different parts of the body.
I happen to be lucky enough to have both RA and osteoarthritis (OA), as well as fibromyalgia and an aggressive inflammatory response to many triggers, so treating pain takes a multi-pronged approach. My primary treatments are a healthy diet and as much activity (note I didn't say exercise) as possible. As to the specific ailments, for RA, we have settled (for now) on 15 mg leflunomide daily, which mostly controls pain and swelling in my hands and feet, I handle the breakthrough with topical Voltaren gel. We may be headed for a biologic in the next year. For OA, I use Tylenol to manage pain, add ibuprofen for bad days, and am exploring adding meloxicam with my rheumatologist. For fibro & reactions, I was using duloxetine, but weaned off and will be exploring options (too brain-fogging).
Through it all, I have stayed as active as possible - one of my fabulous rheumatologist's favorite lines is "motion is lotion." My Mom lived 40 years with RA & OA, and when people told her to take it easy, she would reply "If I sit down, I'll rust up and not be able to get up" - I try to keep both these adages in mind.
In 2020, after all of these diagnoses, plus a chronic lung condition, I was headed for being a permanent couch potato. I was referred to a pain rehab clinic through my health provider, where I learned to LIVE, not just exist, in spite of pain. The treatment included learning to acknowledge and see the pain differently, manage it with (non-opioid meds), physical therapy, meditation, behavior mod. Also to learn how to get decent sleep. I saw a pain management doc, a PT, and a psychologist. I also have a pulmonology team managing my lung condition, and a cardiologist for my heart.
Most of the time, being active - gardening, doing a lot around our 50 yo house (currently in a complete refresh/redec/cleanout), volunteering, walking, traveling, painting, fiber arts, hanging out with friends from 8 to 80+, and playing with my grandsons keeps my mind off how I hurt. If I sit down, I start cataloguing how many parts hurt (or don't work.)
When that's not enough, I resort to surgery if needed - I have had both hips replaced (OA), both thumbs repaired (OA & RA), my ACL/MCL replaced & rotator cuff repaired (trauma). This week, I will have my wrist replaced (OA & RA).
Yes, I have BAD days, or days when my body refuses to do ...anything. Then I take a day off, rest, read, take a hot bath, sit and enjoy my gardens.
Do you know your specific type of RA, and what parts of your body are affected. It would also be helpful to know if you have osteoarthritis (OA) or fibromyalgia in addition to RA.
What non-drug methods have you tried to manage pain and improve your quality of life?
Replies to "@lindaadele When we say "I have RA", it's kind of like saying "My back hurts" -..."
@sueinmn
Sue, are you in Phoenix? I ask as my body has all the symptoms of RA. I have had a terrible time getting in to see a Rheumatologist. Do have a Mayo appt 7/22, with a resident. 2 month wait. I have Myasthenia Gravis, broke 5 metatarsals in 2022,23,24, which are healed but last winter my feet just went off the charts with pain! Swelling, a whole shoe size, burning, skin sensitivity. Due to the broken metatarsals, and a improper gait, then my hip went wonky, i learned i had 2 tears in labrum, Glute tears and Bursitis, which then caused awful pain all down the legs, most issues on the right, then of course i have a 72 year old back who is severely degenerated. At the end of now, after searching so many paths and have had RA tests negative, but i learned that seronegative is a potential possibility,. I did not mean to give an entire history, but with so many problems, pain, autoimmune MG,, which after 12 years only became significantly managed with a new biologic a year ago, i am so tired of chasing doctors, ones who sincerely are incompetent. I am left with a fracture in my right ankle which could be causing inflammation in one foot but certainly not 2. So I think I am left with a rheumatology issue. I have done all potential testing of any other things. SOOOO when i aw your post, sounds like you may have some experience in similar issues. The feet specifically. I so fear any surgery. Anyway, if you have a wonderful smart Rheumatologist, would you be willing to share? I appreciate any input. From you or any other patient onn here that sees this. Thank you!
@sueinmn when you say swelling do you mean just the joints or the fingers and such??
@sueinmn Your uplifting mindset is powerful. I plan to hand your post in the frig!💕
@sueinmn I think I have RA according to my doctor, but it changes all the time. So far I have been in so many medication’s for the RA. None of them really works so good right now I’m on Leflunomide and and I am tapering down from prednisone. I find I am having the most pain from my fingers and hands. I can hardly move them at a lot of time. I try to do a lot of hand exercises and hope maybe the flutamide will kick in or maybe she’ll change it to another medication I’m really kind of getting tired of this. Must’ve been on so many medication‘s already with not such good results. ! thank you so very much for your very helpful information. I really really appreciate it very very much. Hoping you feel better and better each every day! Again, thank you for your very informative information. I really appreciate it and it’s very helpful to me.!!’
Wishing you the very, very best going forward!!’
@sueinmn thank you so very much for sending your detailed comment. It was very helpful to me and I appreciate it very much. The bottom line is we are also different and have 1 million different situations with the joints and what not very scary. I really don’t think the doctors know what to do in most of the time especially especially with me because nothing‘s working for me wishing you the very very best of health going forward and thanks again for your comment. I really appreciate it and found it extremely helpful. Wishing you the very, very best.!!!
@sueinmn comment number two. Again I’d like to thank you for your very detailed comment as I said it was so helpful and each of us is so different but we can help each other by giving our situations right now. After a few years. I’m just taking one day at a time and hoping for the best and we’ll see what happens I know in my situation it’s autoimmune and my father side of the family. My cousin had it exactly like me and she was in pain. Her daughter said her whole life think she died in 89 years old, but you know what one day at a time we can only hope for the best and help each other out can’t hurt.! thank you very much again for your comment and I hope you feel better and better each and every day!!!
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@sueinmn
Your treatment sounds worse than the disease.
I'm not active and there's a lot of truth in the "I'll rust up" adage.
Jake