How do I work around rheumatoid arthritis?

September 16, 2016 10:59 AM

I am a developer and self-employed, and I just found out my pain issues may be Lyme or Rheumatoid Arthritis (or, you know, both). How do I stop ignoring my pain and learn to cope with it?

I have been dealing with joint aches and body aches for a couple years (and had a bullseye rash two summers ago) and this past June I pulled a deer tick off my belly. Six weeks later my pain and fatigue had me "bed-ridden", for the variety of bed-ridden where I have small children and a thriving business that I operate from my laptop - so work didn't stop, and my kids ate snacks for dinner more than a couple nights in a row, but I was horizontal in bed as much as possible.

I thought it was hormone related and went to my OB to have my birth control implant removed - she immediately ordered blood tests and my C Reactive Protein is high and I am in the middle of Lyme testing. She is pretty convinced it is RA (there are quite a few family members with autoimmune disorders on my mom's side of the family) and hearing the word "arthritis" applied to me has made a lot of things make more sense.

Now that I have concerned doctors looking at my blood tests and taking my pain seriously, I am being forced to realize that This is Real and isn't going to go away if I ignore it. My hands are aching like crazy the past two days and I'm behind on emails (because I'm saving my typing energy for paid coding) and I am trying to figure out ways to mitigate the pain, stay on top of my work and household, and just...deal with this.

Things I am currently doing:

Epsom salt baths - jury is out on whether or not magnesium can be absorbed and have any affect, but the heat and the aroma are helpful for a little while.

Wearing wrist braces - because I thought the hand pain was carpal tunnel and the compression helps. I have compression gloves in my Amazon cart now.

Getting more sleep - some days this isn't even optional, at certain times in my cycle it's like narcolepsy now. This means I can't make up for a bad day by working at night.

Smoking pot about once a week - it helps. Which is weird to me because I used to avoid it when I had headaches or menstrual cramps because it made things worse.

Modifying my diet - I've been reading about anti-inflammatory diets and trying to put some of it into practice.

Freaking out and obsessing - I'm a single parent and a business owner and a lot is riding on my being able to show up and get my shit done every day, and I have been struggling with that for awhile. Nothing about having Lyme or treating Lyme looks like anything I want any part of, but here I am.

Things I am not doing:

Taking NSAIDs, avoiding Google, putting my phone down even though it makes my hands hurt worse, getting enough exercise.

Do you have any tips or tricks for managing ongoing pain? If you work primarily behind a computer, do you have recommendations for optimizing my desk set up? I have a standing desk and a laptop I can use from the couch, and what I *want* is a recliner to work from, on my worst days, but I don't know how to make that work with my desktop. What kinds of exercise are good for this? What kind of questions should I be asking my doctor?

posted by anonymous to Health & Fitness (15 answers total)

I mean, the most helpful thing is likely to be appropriate meds for whatever you get diagnosed with. I don't know about Lyme treatment, but if you get diagnosed with RA there are a ton of treatment options and hopefully you can get the right one.

Other than that - figure out how to avoid the things that hurt. I am lucky enough to have my husband around to help with day-to-day thngs - jar opening and stuff - because - even though I probably could - it hurts, so I don't. Check out dictation software. I had to stop my ~1 mile walking commute because of the arthritis in my ankles and feet, and losing the cardio was pretty bad, so I made time to start swimming instead - which doesn't hurt my joints as much and makes me feel like less of a lump. Carrying a bag or something (even a really light one) in my hands hurts my fingers & elbows so I wear a backpack basically everywhere. Just find what can help you adapt.
posted by brainmouse at 11:06 AM on September 16, 2016 [2 favorites]

If it is arthritis, the advice in the UK now is to lift weights. I believe that yoga is also supposed to be beneficial.
posted by veids at 11:45 AM on September 16, 2016

Avoiding painful movements is actually a bad practice for arthritis and can lead to greater disability.

A balanced program of exercise and rest is probably the single best thing you can do for yourself.

My arthritic knees are still pretty creaky but they don't hurt me at all as long as I run 15 miles a week and my bad wrist that I had surgery on almost 20 years is completely fine as long as I weight train twice a week. If I stop my knees start aching within a couple of day and my wrist will ache in a couple of weeks. I was told it was because while exercise triggers some inflammation it also triggers a greater anti-inflammatory response that carries over for longer than the original irritation and that increased muscular fitness reduces joint strain.

"I have a standing desk and a laptop I can use from the couch, and what I *want* is a recliner to work from, on my worst days, but I don't know how to make that work with my desktop."

I use a laptop on an ikea laptop stand. It's perfect for couch computing. Maybe even a little too perfect.

If you can't get a laptop then consider hooking your desktop up to your tv and getting a wireless keyboard and mouse (if you get a wireless mouse make sure it can handle any surface like the Logitech MS anywhere so you can use it on a couch cushion or armchair arm or whatever you want). I have this setup for a media PC. I sometimes use it when I need to compute using Windows rather than Linux.
posted by srboisvert at 11:46 AM on September 16, 2016

You mentioned diet; are you eating tumeric-rich foods? Even if so, maybe take a look at a good Tumeric supplement like this one. I don't find myself eating a lot of tumeric in my diet, so I take these, and they seem to help a good bit. Feel better!
posted by destructive cactus at 12:10 PM on September 16, 2016

I've found ingestible pot to be worlds better for pain, and have been told repeatedly not to smoke it because smoking something something inflammation.

Acupuncture, tumeric / meriva, tart cherry concentrate in largish quantities, low dose pregnenolone (like 2.5 mg), and stoned yoga have all been really helpful.

I've also had to seriously restrict my diet. I'm eating super bland stuff (kanji for breakfast, no onions, ginger, gluten, dairy, seafood or soy, and most other delicious things) until I figure out what messes me up.

(My issue isn't RA but I am looking for a rheumatologist.)

The background stress of not knowing what's happening to you or how bad it's going to get while also being responsible for others might contribute quite a bit, but the good news is that once you start to see improvement that can dissipate dramatically, if not entirely.

I'm sorry you're going through this. I hope something helps.
posted by schadenfrau at 12:24 PM on September 16, 2016 [1 favorite]

Treat the Lyme and see where you're at. It's an antibiotic and I've done it and other than an upset stomach it was no biggie and I've been Lyme free ever since (17 years). I was on the meds for 3 months I think.

Lyme will mess you up. It causes arthritis and neurological issues, like pain. Treat that, treat any cooccuring tick borne stuff, let your body heal, see where you're at then and see a specialist before treating any autoimmune stuff. I was told I most likely had lupus or ra too but I didn't.
posted by fshgrl at 12:29 PM on September 16, 2016 [2 favorites]

Not sure if this is up to you or your doctors, but I'd definitely prioritize DMARDS when you have a firm diagnosis! This is the kind of disease where conservative treatment is not good.

If it does happen to be RA and not Lyme, here are some things that consistently have worked for me: aerobic exercise (as mentioned above) and ice. I know exercise may seem counterintuitive at this point, and you don't want to overdo it when your energy reserves are already low, but the way it was explained to me is that something low-impact like walking "feeds" the joint capsule, getting all the fluids moving in there and helping to reduce inflammation. (I couldn't find a comprehensible link explaining, sorry.) I found that if I walked for 20-30 minutes, at least twice a week, it really helped tone down the joint pain.

Also, icing the joints physically helps lessen inflammation. Heat feels better in the short-term, but ice would actually stop the throbbing, hot pain for hours or even days, for me. It's easier to ice things like hands/wrists, feet/knees (something where you can surround the joint entirely) than hips, and something like a bag of frozen peas will mold to your body better than an ice pack. Unfortunately, you need to ice for 10+ minutes, pushing past that point of "oh god so cold can't stand it anymore."

I'm sorry to hear you're having such a hard time. Rheumatoid arthritis is really tough, before you get on any drugs that can deal with the inflammation, and it sounds like you have a lot on your plate. I hope things get better soon.
posted by stellarc at 12:32 PM on September 16, 2016 [1 favorite]

(My stuff was for dealing with the pain and inflammation, not the underlying causes. If it's Lyme and it responds to treatment that is excellent and definitely do that.)
posted by schadenfrau at 12:50 PM on September 16, 2016

I've got a bit of it in my hands, I've found Voltaren gel helps a little bit. Can be found over the counter.

The active ingredient is diclofenac, a new-ish semi-selective COX-2 inhibitor. As a topical, there are no particular cardiovascular risks in using it unlike NSAID and other COX-2 inhibitors taken orally/systemically.

Surprisingly, it has also been effective off-label for my occasional eczema.
posted by porpoise at 1:16 PM on September 16, 2016

If it's not Lyme disease, go see a rheumatologist. There are some very good meds for RA on the market which will almost certainly be more effective than anything lifestyle- or diet-related you can do, and which will address both the pain and the other systemic issues that can accompany RA. I have psoriatic arthritis, which is treated in much the same way as RA, and both methotrexate and Enbrel have been legitimately lifechanging for me. I was in much the same situation as you are now before I started Enbrel, and now I'm basically pain-free.

But really, it starts with going to a rheumatologist and getting a treatment plan that's specific to you. Also bear in mind that many of the recommendations you may find online for dealing with arthritis are for osteoarthritis, not RA; the two conditions are not the same at all.
posted by asterix at 2:03 PM on September 16, 2016 [4 favorites]

After you've seen a rheumatologist, take the meds, take the meds, TAKE THE MEDS. I've had a couple of courses of methotrexate to treat my RA, and, while the meds had their side effects, the difference in my symptoms was like night and day.

Also, exercise had a huge impact on my pain and symptoms, specifically lifting weights, specifically powerlifting training. The emphasis on slow, slow progression, large compound movements, form and breathing in powerlifting seriously helped with pain and mobility, in combination with medication.
posted by nerdfish at 2:40 PM on September 16, 2016 [2 favorites]

Definitely see a rheumatologist. If its RA they wil work to manage it so that you don't have constant pain (though it can flare). RA is treated very aggressively nowadays and as a result outcomes are very positive. Mine put me on prednisone to treat the inflamation while the DMARD took time to build up and work. This made me very well inclined to follow treatment as how I felt on prednisone was what she was aiming for from the sulfasalazine - basically, the constant pain you have now will be treated (without the crazy).

I hear you on the worry about how you'll cope. I was diagnosed a few months after I bought a house, I'm single, I work full time with a long commute, I'd just adopted cats - so much responsibility and no help. But it will be ok.
posted by kitten magic at 3:15 PM on September 16, 2016

N'thing what a lot of people have said above.

You should wait for a definitive diagnosis. I suggest you see a good rheumatologist for this. I was diagnosed with Ankylosing Spondylitis (part of the same group of autoimmune conditions like RA/UC/Crohns etc) in 2008 (when I was 25), and cycled through a bunch of treatments until I found one that worked. That ended up being Remicade and methotrexate first and then Humira, which I've been on for the last 5 years. I've been in remission since I got on the biologics.

I've always been active and I find that regular strength training and exercise helps. Any thing that lets you move and work up a sweat will benefit you in my opinion.

If you need any more specific information, feel free to memail.
posted by rippersid at 11:06 PM on September 16, 2016 [1 favorite]

I have rheumatoid arthritis. Once you have a diagnosis, you'll want to see a rheumatologist and talk about appropriate medication, including pain management and also perhaps an antidepressant - this can really help with pain management, and it sounds like managing your stress would really help too.

As far as daily life goes, avoiding inflammatory foods can really help (it helps me) and doing whatever exercise you're capable of helps. I know you are very busy with work and your family, but one of the best things you can do is give yourself whatever space you can to relax and not always be pushing yourself to do everything in the world right now.

If you ever want to chat about meds or just managing daily stuff, please feel free to memail me.
posted by bile and syntax at 10:48 AM on September 17, 2016 [1 favorite]

Lyme basically just requires a long course of very strong antibiotics. Honestly, the side effects from the antibiotics were worse than the Lyme symptoms, but they were also temporary so I toughed it out. Instant mashed potatoes, saltine crackers, and ginger ale helped me a lot of with the antibiotics-induced nausea. They can also prescribe you anti-nausea medicine to keep the antibiotics down, or I suppose you could just smoke more pot while you're taking the antibiotics since that helps with nausea.

If it's an autoimmune disease like rheumatoid or psoriatic arthritis then going on specialized biologic medication should make a huge difference.

Things you can get to help while you wait to get diagnosed and on the right medication:
- Aleve or other OTC NSAID
- Heated mattress pad OMG this helps with morning stiffness SO MUCH
- Arthritis compression gloves
- 3 grams/day pharmaceutical grade omega 3s
- Turmeric supplements
- Switching to a more specialized form of marijuana -- I've done some experimenting whenever I've been in Seattle and found a high-CBD/indica blend marijuana tincture to be helpful but pricey. (I found high-CBD alone to be only as effective as two extra-strength Tylenol, but YMMV.)
posted by Jacqueline at 8:48 PM on September 17, 2016 [1 favorite]