RA: Always Another Surprise

RA: Always Another Surprise

I’ve been jousting with my old rheuma-dragon for decades, now. You’d think he couldn’t surprise me anymore. But he has, many times, and that crafty, snaggle-toothed old wyrm recently did it again.

I’ve had a lot of foot pain recently. It’s not the familiar, deep aching pain in the balls of my feet that I’ve had since the onset of my rheumatoid disease. This is new. It overlays that old pain. It’s sharp, burning, sometimes stabbing. It runs across the tops and down the sides of both feet and along the backs of both ankles.

It’s like wearing socks full of gravelly sand and glass shards.

And while it’s mostly a “moderate” pain(!), it’s constant, worsening, and getting harder to ignore all the time. So, not long ago I told my rheumatologist about it. She did a brief exam, shrugged, and moved on, saying the gabapentin (an anti-epileptic medication commonly used for its nerve-pain reducing qualities) she’d already prescribed for my RD pain should handle it. She also started me on yet another biologic (my fourth, so far). Give it some time, she said.

I did—and I am—but this new pain continued. Eventually, it started to make wearing anything on my feet extremely uncomfortable.

I figured I’d give my new PCP at shot at it. She also examined my feet. Then she checked my records, noted that there were no x-rays of my feet—recent or otherwise—and ordered them. Until she could get a look at what might be going on inside them, she explained, she couldn’t identify a culprit.

Less than a week later, we had one. The x-ray results showed that I had enthesitis in my feet, ankles, and Achilles tendons.

According to enthesitis.org, enthesitis is “an inflammation of entheses, the site where ligaments or tendons insert into the bones.” It may cause calcification and fibrosis, a thickening and scarring of connective tissue. The result is more pain and, over time, decreased flexibility.

And what causes enthesitis? Joint diseases like rheumatoid disease, psoriatic arthritis, and lupus, among others. Injury or overload conditions like plantar fasciitis may cause it, as well. Enthesitis in rheumatoid disease occurs mainly with the feet, ankles, hands, and fingers, though it can affect the larger joints, tendons, and ligaments. Tendinitis and bursitis commonly occur, too.

“It causes irritation and “soreness,” understates enthesitis.org. Well, I can attest to the “soreness,” for sure.

Rheumatoid disease presents its own array of issues. As an autoimmune disease, it makes the body’s immune system mistake its own synovial tissues for malicious, foreign outsiders (like bacteria and viruses) and attacks them with single-minded, determined ferocity. That it’s damaging and destroying its own joints and, possibly, the synovial linings of its heart, lungs, and veins, its kidneys, and even its eyes seems not to matter to the rheuma-dragon. And then there’s the collateral damage of this internal, bodily war: enthesitis, bursitis, and tendinitis—damage and destruction of the tendons, ligaments, cartilage, and muscles that support the joints.

I’m glad to know, finally, what’s going on in my feet. The first step to health is knowledge, after all. But I’m still frustrated. Treatments for enthesitis focus on NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), over-the-counter pain relievers, and, surprisingly, methotrexate (MTX) and anti-TNF biologics. Unfortunately, my body won’t tolerate MTX, and I’m already tried the other options in the past without success.

So. My rheuma-dragon is, for now, winning the battle.

But there is hope. There is always hope! I achieved some relief when I finally got to see a pain management specialist recently. She upped my gabapentin dose even further and reinstated my prescription for an opioid analgesic. And it may be that the new biologic (not an anti-TNF) will knock my dragon—the progression of my RD and the other physical problems it—down once again.

Fingers crossed. I’m sharpening my jousting lance.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (17)
  • LoriC
    1 year ago

    I’ve had what you describe for several months and when I asked my rheumatologist he said he didn’t think it was related to the disease. I asked my primary and he said he thought it was a flair up from my plantar faciitis. In addition to this I have started having edema in my ankles and lower legs and neither one of them seem to think it is something to be concerned about. One blames it on the steroids I had been on but I was already off them, the other said it had to do with age and sent me to be measured for compression socks. My right ankle is the worse especially if I accidentally turn it a certain way. Guess I will have to demand the right tests like I did when they tried to say it was gout and it turned out to be rheumatoid.

  • Wendy Johns
    1 year ago

    Oh I am so thankful for this site and all who comment. I have been having ankle pain for years with it being so bad this past 6 months. They feel broken and are so week. I have RA and other auto-immune diseases. Been ting to figure out why. Now after reading this and the comments I have some answers to my journey to find the solution to get or lower my pain level. Have had steroid injections with no help. Am on Rituxan as many oral drugs caused allergic reactions. Humira, nothing. In a boot now which is helping but as soon as I take it off, pain back to 7 and above. Will take this article to doctor and see what else can be done. Thanks again. At le as t I am not crazy. Lol. Thanks again.

  • Wendy Johns
    1 year ago

    Weak, not week. Lol.

  • Richard Faust moderator
    1 year ago

    Hi IamStable. Your information about the radon gas that comes from the Reading prong in Pennsylvania is pretty accurate. I grew up right near where the initial discovery of the gas was made. Because of the radioactive nature the use of the radon for therapy is somewhat controversial. The difference with the radon baths is the quantity. The dosage of radon in a spinal x-ray is roughly 50 times that on the skin in the radon bath, however, exposure time is greater in the bath. I certainly can’t claim to know enough about the exposure to speculate on the effects, but there is some research showing the positive results for RA patients from the radon baths. Best, Richard (RheumatoidArthritis.net Team)

  • IamStable
    1 year ago

    I too, am currently suffering foot pain. I know what started it (my 24/7 Birkenstocks were a year old), and having worked in a podiatrist’s office for nearly 10 yrs, I know what to do. Of course I ordered new Birkenstocks. My rheumy directed me at my last visit to do nightly Epsom salt soaks-every night, not just when experiencing pain. I also stay off it, and ice it by rolling a frozen water filled bottle under my foot. I also do gentle stretching exercises ( ex: lift heel up and down like wearing a high heel).
    BTW orthotics should help, not hurt!! You must follow directions and break YOURSELF into them an hour a day. It should take at least a week (maybe more if you are a delicate flower like me) to get up to full time. If they still hurt, take them back to your podiatrist to return to lab for repair. I assume they were the custom made kind (and hopefully your insurance helped pay for them). And don’t assume your shoes are ok, just because they LOOK ok. Sneakers only last six months. Really. Always switch out shoes every other day to let them dry and toss them before they cause you probs.
    Anyway, that inflammation took awhile to get to that point, so it will be awhile to calm it.
    I too, cannot take mtx with my Enbrel. It helped, sigh, it really helped, but my immune system took such a dive I was always sick. My rheumy stopped it. My overall health improved, but I’m not stable anymore as my user name claims.

  • Tich
    2 years ago

    Hello Wren, I am writing this from a radon health mine in Montana. Sorry to hear you seem to be running out of options with RD pain.You might take a look at radon. I have Ankylosing Spondylitis, and enthesitis is well known to me, and still surprises me. When I was struggling with Scleritis my rheumy told me AS is a disease of connective tissues, and the sclera is basically connective tissue. But my feet really surprised me lately. I’ve had plantar fasciitis and gout, but after I had cycled through nearly all TNF inhibitors we changed to an IL-17 inhibitor. Then a new pain in my foot became very bad. I went to a new podiatrist; she ran had X-rays taken and had me use my hated orthotics. The pain then got much worse. So I tried some gout medicine I had left from a prior episode. Sure enough, even though the pain was different, the problem was the same. My rheumy fine tuned my diet and said just one beer can set off my gout. Now I can cry in my beer, but cannot drink it. Radon however has real possibilities for me. I haven’t used prednisone since last my second session last July. The new gout came in December. From my experience then Radon twice a year should be in my plan for the next few years.

  • IamStable
    1 year ago

    RADON?! We hate radon in PA! All houses must be tested for it at time of sale. If it shows up, remediation is mandated. Cellar floor must be equipped to vent it out a pipe. Something about it causing lung cancer. I will look it up…….

  • Wren moderator author
    2 years ago

    Hi, Tich,
    I’d never heard of radon health mines before reading your comment, so I googled (of course!) How interesting! It sounds like this has helped with your AS and gout, and I’m really glad for you. All of those conditions and diseases–AS, gout, and plantar fasciitis–are so dreadfully painful!
    Thank you so much for taking the time to share your experiences with us. It’s always good to learn of new possible treatments, though it’s also smart to research them carefully before plunging in. Here’s wishing you the best of luck with the radon treatments. Please stay in touch and let us know how you’re doing. 🙂

  • Nana1969
    2 years ago

    Hi I read that your body doesn’t handle methotrexate. I was wondering if you tried it in injection form? Taking it orally used to make me vomit but by bypassing the stomach by injecting it I have been able to tolerate it

  • Wren moderator author
    2 years ago

    Hi, Nana1969,
    You’re so right–my body didn’t like MTX at all. But it wasn’t nausea that did me in, it was a heavy, dull fatigue that lasted for at least two days after I’d taken my weekly oral dose. I did ask my rheumy about trying it via injection, but he nixed the idea, saying that it likely wouldn’t make much difference.
    Thanks so much for the suggestion, though! I’m really glad that by taking MTX via injection, it’s helping to keep your RD under control. That’s a real WIN!
    Thanks for taking the time to comment–and for your kind concern. Please stay in touch and let us know how you’re doing! 🙂

  • 55rainey
    2 years ago

    Hi – I can so relate. My feet have been the worse part of this the past 6 months. It feels like I am walking on broken feet and ankles. across the top and my ankles are in screaming pain all the time. I also have nodules (a few big ones on my feet- for those I went up a size and put soft thick insoles in my shoes. Orthotics the podiatrist made were useless; too hard. Talk about surprises: On top of it all I found out this week that my kneecaps are hurting so badly because they are bone on bone from all the years of using prednisone. I have my sed rate down to 5 which is great but the damage this disease has done goes on. We are going to try cushion injections if my insurance will cover it first; if not doc who I do really trust says I need total knee replacements. Thankfully my hip replacement he did is looking great still at 16 years old. So sick of this stinking disease.

  • Wren moderator author
    2 years ago

    Hi, 55rainey,
    I can so empathize with your frustration! RD is a tough disease to live with every day, but it sounds like you’re hanging in there. I’m glad the hip replacement is still good, and I hope that you’ve been able to resolve and relieve the pain you’ve had in your knees. Foot pain–aughh! I recently discovered OTC lidocaine lotion–it helps a lot with my foot pain, particularly when it’s focused on the tops of my feet. If you can, give it a try.
    Thanks for taking the time to comment. I really appreciate it. Here’s hoping that you’re feeling a lot better now! 🙂

  • Lawrence 'rick' Phillips
    2 years ago

    Wow this makes me wonder. I have had foot and heal pain on and on for years. Since I am HLA B27 positive, it makes me wonder about the foot pain. I will discuss the situation next time I visit my podiatrist.

  • Wren moderator author
    2 years ago

    Hi, Rick!
    Hey, I hope that this might help explain your foot and heel pain. Now if we could just figure out a good way to make it go away!
    Thanks for commenting, my friend. I hope this finds you feeling well and laughing frequently. 🙂

  • Carla Kienast
    2 years ago

    Hmmph! “Moderate” or even “minor” pain is something that happens to someone else. When it happens to you, there’s nothing moderate or minor about it. Well, I’m happy you figured out what’s going on but I am so sorry that you have yet something else with which to deal. I see warm foot baths in your future. 🙂 Hang in there. Maybe this latest biologic will be the magic bullet.

  • janlorraine
    2 years ago

    I am so glad that you finally have a pain management doctor and a source for opiate medicine. Of all the options for pain relief, I see opiates as the most benign and, for me, the only way I can cope with the daily agony of my disease. Thank you for keeping us informed about your progress.

  • Wren moderator author
    2 years ago

    Hi, janlorraine,
    Thank you so much for your kindness and concern. I’m glad to have a pain management doctor too, believe me! It’s good to have a way to blunt the pain as we hope that one day, medical researchers and scientists will finally find a cure for RD.
    I’m so glad you stopped in and took the time to comment. I look forward to hearing from you again soon–let us know how you’re doing. 🙂

  • Poll