RA Causing a lot of pain! Any helpful hints?

@tisme My joints and the soft tissue in my fingers/hands/wrists (and sometimes feet) swell and get red/warm/even hot to touch. Leflunomide is keeping it mostly controlled, but I am at my maximum dose. My Rheumatologist says when it ceases to work, we will look at biologics because I am not a candidate for methotrexate, sulfasalazine or hydroxychloroquine. I also use topical Voltaren gel at bedtime on bad days.

@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?

@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?

@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?

One thing I do in addition to the various meds etc especially when I’m having a tough flare I call “mattress floating”. I love the ocean and so I lay on the bed and deep breathe and visualize floating in the warm ocean. Recall how it feels to float freely and remove gravity from my body. Gently flutter and rotate all the joints on my arms and legs. If there’s a nice breeze blowing over that makes it even better.
Wishing you all some relief on your rough days.

I have had RA for over 44 years; but went undiagnosed for over 40 years.
None of the standard medicines worked, so I asked my doctor about Low Dose Naltrexone. It's not standard treatment, but it has helped many people. I've been on it about 9 months, and it's the first time I have felt relatively zero pain. I'm allergic to NSAIDs and aspirin, so this is huge for me.
I highly recommend it's worth a try. AgelessRX is a good source if your doctor is clueless.
I hope you get some relief soon!