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Morning Habits with Ankylosing Spondylitis

When we recently asked CreakyJoints members on Facebook: “Have you had an arthritis flare since staying home under quarantine?” we were overwhelmed by the response. We got more than 150 comments and, not surprisingly, most people who commented reported that they are going through flares and are facing new issues in how to deal with them because of the coronavirus pandemic.

Many patients are concerned about seeing a doctor in person, are planning to try telehealth, are reluctant to take steroids, or are worried about trying new medications. Many attribute their flares to increased stress levels, and are concerned that there’s no real antidote for that. Others suspect that  decreased physical activity is a factor, as is eating more junk food. And for a handful of fortunate patients, some are actually reporting that they feel better than usual, perhaps because they are working remotely and getting to spend more time outside.

We talked to rheumatologists here about what to do if you’re experiencing a flare. But we felt it was also important to share patients’ experiences, so we curated a mix of responses to our question below. While it’s clear that there are a lot of health challenges right now — and no easy answers — it’s also clear that we are truly all in this together.

To the extent that good mental health care, stress management, and community support can help, CreakyJoints and the Global Healthy Living Foundation are here for you.

My Hands Are Killing Me

“Yes!! My hands fingers and wrist. I just thought I had used them to much but sure wish the pain would go away.” — Daphne C.

“My wrist and fingers were inflamed. I truly could not work. Call it stress. Ugh!” — Patricia M.

“[I have] Inflammation of hands due to too much housework. I can’t bend my fingers because my knuckles are so swollen and painful at the moment. It’s hard to sit quietly and rest. Keeping busy keeps my mind occupied.” — Denise M.

“I’ve been experiencing a lot of right hand/wrist pain. I’m not stressing out over the coronavirus, just trying to figure out what to take to get rid of the pain in my hand.” — Karen H.

My Back Is Killing Me

“Yes!!! All this stress is freaking me out, and then my arthritis started acting up. I have it in my back so my back has been killing me! I’ve been taking baths to help relax my muscles. The nice thing about being home and not at work is during my flare-ups I don’t have to be moving around as much so I can finally rest! But I do still need to walk around the house some just to get my joints moving, otherwise I hurt worse.” — Shekinah U.

“Yes! The inactivity of just sitting around. Not good for my back pain.” — Lauren B.

My Whole Body Is a Mess

“Every joint in my body hurts, including ribs… Waiting for meds to work. Heating pad helps. My life hasn’t changed much since quarantine since I rarely go out and worked from home prior to this.” — Sue C.  

“Typically when I flare it is one joint at a time. For the first time ever, every joint that causes me pain on the right side of my body is flaring at the same time. It’s unlike anything I’ve ever experienced before and I don’t know if it’s coincidental. I don’t want to bother anyone in the medical field with it right now so I’m just taking Tylenol and using lots of ice.” — Kim S.

“My whole body is screaming in pain. My knees especially.” — Kristie W.

Trying to Use Telehealth

“Having a flare now… Going to be calling rheumatologist tomorrow and will likely be scheduling a telehealth appointment for This week. Coping is hard with the fact we don’t know when the U.S. and world will turn a corner and be in the clear again.” — Hannah T.

“Of course I am flaring. All the stress and extra cleaning is rough. I have more joint pain. I have not called my doctor, but I have a phone appointment on Friday with my rheumatologist who treats my PsA, RA, and osteoporosis. There’s not really much to do, but I have used my pain meds and heating pads. Extra rest too. My husband has MS and [requires] total care so I don’t get time off. We are stuck at home together, and didn’t drive each other crazy yet!” — Joan A.

It’s Rough When You Live Alone

“[I’m having an] AS flare of left hip. Two shots didn’t help much. The doctor wants me to use cane or walker. Adds to stress since I live alone.” — JoyEllen L.

Afraid to Go to the Doctor

“I’m hurting so badly RIGHT NOW. I have an appointment with my arthritis doctor [this week]. I’m scared to go, but I need refills. I haven’t been in ANY stores or gone anywhere other than to the dog park. Guess I’ve overdone it.” — Tina M.

 Worried About Steroids

“Didn’t want to take steroids to get it under control so I just waited it out for four excruciating days until it started to lessen.” — Amy B.

I Can’t Get Hydroxychloroquine/Plaquenil

“Yes, having flare. Had to pay $410 for Plaquenil. Rx said refill will be very late.” — Carole M.

“Yes and I can’t get my Plaquenil refilled. I understand why but it’s still hard to deal with.” — Sherrie M.

 “My doctor cut my hydroxychloroquine prescription in half so other people could get it before there was a shortage. (Yes, she did.) I am afraid to go to her office to get my biologic shots. Her office is in a building with a lot of other doctors. Lots of sick people there. My backup is prednisone if I need it. Trying to stay calm.” — Sandra C.

 “Welp, had to cut Plaquenil dose down to [one pill] per day as it’s scarce. So yeah….” — Sharon W.

It’s the Stress

 “Really painful hands and ankle joints the last few days. I think it’s mostly been brought out by a very stressful few days but hoping things will ease a bit now things are falling into place.” — Janey G.

 “Incredibly painful all over. Been so stressful time, not being able to get any shopping, son with a learning disability at home, can’t work, not much exercise, fatigue.” — Sharron C.

 “Major flare-up all last week. Combination of stress, as well the lack of commuting to and from work (which is usually my exercise for the day). I’ve tried to go for short walks but once that flare hits, it’s hard to get up and do anything. Lots of baths, heating pads, lying on the couch not doing much.” — Hannah M.

 “Yes, lasted 3 days. Pretty bad one this time. I’m working from home and it’s stressful. I think that is the issue.” — Karla W.

 “If by flare you mean, Did I break out in full-body hives for the first time? Then yes. Yes, I’ve had a flare from COVID-19 stress.” — Heather D.

Morning Stiffness Is Back

“Nothing major thankfully. But my morning stiffness is well and truly back. Hello T Rex arms!” — Tina A.

“I feel exactly like the Tin Man. It’s concerning that I am this stiff.” — Tracey T.

Flares in New Places

I’m having a horrible flare! New places swelling and hurting badly. Left elbow keeps getting lumps on it that hurt… Never had them before. Right wrist is swollen and painful. Hard to use. I’m scheduled for a tele appointment with my rheumatologist. I’m scared she’s going to change my meds and Remicade has been helping so much for a while now. Afraid to try anything else. I’ve already tried Enbrel, Orencia, Humira, and Humira infusions. When I’ve had surgeries and had to stop my Remicade before, I can tell a big difference when on or off of it. I live on my heating pad.” — Wendy B.

Missing Therapy Makes It Worse

“Every day, without my [chiro]. And acupuncture, and [physical therapy]. All you can do is try and do yoga and the exercises alone at home.” — Krystal T.

“Yes. Started before and has only gotten worse because I cannot get the injections or other health care I need.” — Michelle M.

 Skipping Workouts Makes It Worse

“Not being able to go to the gym or be out and about has definitely flared my hip and SI joint pain. I was doing so well before all this. I was out studying and traveling to my course and now stuck inside it’s been really demoralizing and stressful.” — Kendra M.

“Yes, [I’m flaring because I am] not going to the pool. I miss it.” — Betty L.

Even Walking the Dog Hurts

“Yes!!! Was in tears today after walking the dog. Heating pad, tens machine and neck brace have all been a part of my daily ensemble.” — Diane T.

Impossible to Rest

“Yes, worst one I’ve had in a while. I’ve been trying to rest but with two little kids that’s not much of a choice. We got this!!” — Bianca R.

“Yes, my regular meds aren’t cutting it. Using lots of essential oils for stress relief and to ease the pain. So grateful for them!” — Christie H.

A Perfect Storm

“Yes… the stress. The concern for lack of finances. The emotional toll is having an impact on my body. Plus I’m unable to get the normal care that keeps me comfortable & functioning. RA is acting up a lot! Pain, swelling & stiffness. Ice packs and topical creams along with normal meds to help and taking walks when I’m able: how I’m coping.” — Heather V.

“Oh my goodness I thought maybe I was the only one to be having flares right now. Hurting from my head to my toes. Stress can be so bad for flares. We turned our garage into a spa so thank goodness I have a hot tub to be able to get in anytime it gets too bad.” — Sheila B.

The Junk Food Isn’t Helping

“Yes, because I’m eating too many snacks!” — Catherine B.

“I think it is the foods that I normally do not eat.” — Melissa P.

Running Errands Is Hard on the Body 

“I was doing ok until I had to go get groceries. I went alone as they don’t want extra people in the stores right now. I did a huge shop to get us through at least three weeks so I can reduce our trips outside the home. Since that day, four days ago, I’ve had terrible inflammation in my wrists, fingers, and right hip. For some reason my left mandible is flared up too. It makes it hard to eat as it limits how far I can open my jaw. All I can do is rest and manage the pain. I’m well stocked with several forms of pain relief at different levels of prescription strengths. I also have prescription sleep aids. I’m very fortunate that my gp will consult with me over the phone and fax in any prescriptions to my pharmacy, which will then deliver to my home. My rheumatologist has closed his office but has a message recorder for emergencies, which this is not. I’m coping. My husband can watch the kids and find things to eat. We’ll manage the same as ever. The only difference is I don’t have the added stress of having to call in sick to work. I got laid off weeks ago.” — Lyin D.

Not Sure What to Do Next

“Yes. I did flare. Think it’s the stress. I yet haven’t reached out to my doctor… kind of waiting it out, sure don’t want to overwhelm his office. Didn’t change anything with my meds. On Kevzara.” — Shannon C.

“I’ve only had one really bad day, but I’m in pain all the time, so I’m not sure that I even know what a ‘flare’ is. My doctor is in a building that is attached to a hospital with a lot of sick patients, so, I’m afraid to go in to see him, and he doesn’t do telemedicine. Plus, I don’t have a diagnosis yet — at this time, they ‘think’ it’s osteo, but it’s acting like rheumatoid. I’ve been seeing this rheumatologist for the past eight months or so. I’ve sort of learned to expect and deal with the pain, so can’t see a point in talking to the doctor.” — Jean L.

I Had to Stop My Meds

“I work in health care so I’m not staying home, but I did stop taking my biologic to help reduce my risk of contracting the virus so yeah, lots of RA flares lately. I discussed it with [my doctor] before I stopped and since I’m at a higher risk of exposure taking care of patients we both agreed that it would be safer to hold my meds for a while. If I were able to self-isolate, I would have kept taking it. I’m doing whatever I can to keep myself healthy for my family.” — Mary A.

“I’ve had a psoriasis flare. When coronavirus had just started hitting our area, my husband became sick. My dermatologist advised me to temporarily stop using my biologic injections, just to be safe. After two weeks, I still hadn’t caught what my husband had, luckily. So, I started using my injections again. But the flare continues. It’s especially hard on the hands with all this handwashing. But I think it was wise advice from my dermatologist and now, I hope that restarting injections and the spring sunshine will help to calm this flare.” — Rivke V.

Regular Meds Not Cutting It

“Yes, my regular meds aren’t cutting it. Using lots of essential oils for stress relief and to ease the pain. So grateful for them!” — Christie H.

And I Have Shingles, Too

“Yes! I got shingles first and now I’m having a huge flare. Not taking my Kevzara because of the shingles and now I’m having a flare.” — Lisa L.

Always in a Flare

“Flare? I haven’t been out of my flare for 15 years at least. It never ends.” — Cathy R.

My Eyes Are the Worst

“Sjögren’s has been driving me up a wall. I wake up three to four times a night to drop my eyes!” — Cheryl W.

Actually, I’m Not Having a Flare

“Nope, as long as I stay on my biologic injections and anxiety meds and anti-inflammatories I’m fine.” — Anita P.

“No. I walk in my condo for a half hour if I can’t get outside. I use CBD capsules, medical marijuana, and edibles to help my mental and physical well-being. I’m 71, and live alone, so I’m ‘vulnerable’ due to age and autoimmune diseases. I call people to check in on them, which takes the focus off of me. I’ve actually been staying home since the end of December due to a respiratory infection in December and a back injury in January — osteoporosis from too much prednisone from when I also had asthma. When I finally felt back to normal, the pandemic hit.” — Roz D.

“No, I actually feel great! But I return to work next week.” — Kathleen F.

“Honestly I feel much, much better since staying home. This is stressful but so was work. I am not using a computer and mouse at home at all and I can use the microphone to post.” — Lisa B.

“Never felt better. More active at home and in the garden.” — Ellen W.

“Heat is really helping. No huge flares but just sore. My hydroxychloroquine is keeping it under control — as long as I can keep getting it.” — Michelle T.

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