A day in the life of Rheumatoid Arthritis

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what does a rheumatoid arthritis flare feel like
Image source: http://www.anesthesia.org/images/pain3.jpg
what does a rheumatoid arthritis flare feel like
Image source: http://www.anesthesia.org/images/pain3.jpg

2am. I am awake because there is pain all over my body. My ankles and knees are aching. I want to throw off the sheet because it feels too heavy. But it is cold, so I keep it over me. My electric blanket is on, in the hope that the heat will help ease the pain. It does. Some.

My hands hurt too. And they have pins and needles. Not the kind that tickles…the uncomfortable kind. They are going numb. And yet they still hurt…how does that work?

My elbows ache, my shoulders, my shoulder blades….there is no way for me to lie without putting pressure on a flaring joint. I can’t roll over…my lower spine (SI joint) feels like someone has stabbed me with a screwdriver. Each time I breathe in and out my ribs feel like I am being stabbed with hundreds of knives. My rheumy tells me that’s costochondritis. Always nice to have a name for things…not that it helps at 2am.

Should I take pain killers? From long experience I know I would need strong narcotic pain killers, like oxycodone, to have any effect at all. I have tried everything from panadol right up to oxycodone. I have a range of pain killers of varying strengths.

If I take the heavy duty painkillers I will have a drug ‘hangover’ tomorrow. I’ll feel sleepy and dopey and won’t be able to function anyway. I already took oxycodone at 7pm. That wore off long before midnight.  Now the pain has gotten so bad that I am awake again. If I am hungover tomorrow I won’t be able to work. But if I’ve been awake all night, same deal. I decide to tough it out. I’d rather be lucid.

My Achilles tendons are aching – I don’t want to stand on my feet because it feels like they will rupture. My feet feel like they are broken, anyway. Someone mentioned plantar fasciitis once or twice. My rheumy? My GP? Who can remember at 2am?

I stand up and the pain shoots through my Achilles tendons. Achilles tendonitis? My rheumatologist has explained all about enthesitis. The inflammation of the insertion point where the tendons connect to the bone. Very common in the Achilles tendons and people with inflammatory arthritis are prone to it. I also have a lot of trouble with the tendons in my hips.

Enthesitis. Just another word for ‘pain’ as far as I’m concerned.

It feels like I’m walking on glass as I hobble to the kitchen to heat up some wheat bags. Ten minutes later I am back in bed, on my back, with a heat pack across my hips, one across my knees and one across my ankles. I have wrapped one around my jaw as well, because lately it has been aching. My temporomandibular joint (TMJ) is inflamed also. I have been playing my own personal game of ‘Will it Blend’ at every mealtime for weeks now.

I hold the last heat pack in my hands. My aching hands. And I lie there and try to sleep.

3am. Still lying here.

4am. Still awake. The pain has not subsided. I am starting to drift though…at some point sheer exhaustion takes over.

6am. I am awake again. I must have fallen asleep sometime around 4am. I don’t feel rested, although the pain is not as bad now as it was. My heat packs are cold and heavy, so I push them out of the bed. My body feels heavy because I am so tired. I will try to go back to sleep for another hour. I don’t have to get the kids up until 7am.

6:30am. I am getting up. The pain is getting increasing again, and lying here is only making it worse. If I get up and start to move I’ll feel better than lying here. Oh and coffee. Coffee will help.

My eyes feel gritty and dry. Like they are full of sand. It stings. The light seems to make them sting more, but I can’t go around with my eyes closed all day. Is this iritis? Sjogren’s Syndrome? My rheumy has mentioned both. I have to put eye drops – fake tears – in my eyes several times a day. To lubricate my eyes, to prevent the discomfort. It’s just one more little thing.

Standing up again. Pain shoots from my feet through my knees and on to my hips. Looking in the bathroom mirror, my eyes are bloodshot and so swollen it looks like an allergic reaction. But its not. It’s inflammation. Attacking my eyes. Another of the joys of RA – it can attack anywhere. So much more than just sore hands and feet!
I can only penguin shuffle off to the kitchen to make coffee. There is no point in limping – RA is symmetrical. Which side would I limp on?

Thank the gods for those little rubber mini sized mat things that I use to open jars. They allow me to grip the coffee jar, and get it open. Things would be substantially uglier if I couldn’t get my morning coffee…

While the coffee is on the stove, I heat up my heatpacks again. I strap one to my lower back and hang another over my shoulder. I can’t raise my arm above half way this morning. The heat should help loosen it up soon.

I wish I could strap a heat pack to my jaw. I have a constant dull ache in my jaw, which gets worse if I move it. Even to talk. If I try to chew something the pain is sharp and intense. Lucky you don’t have to chew coffee.

7am. I am nearly finished my coffee and I am feeling more human. I am still stiff all over, and as I go through my gentle stretches to try and ease some of the stiffness and relieve some of the pain. I envy all the people who can jump out of bed and tackle the day. Emphasis on the ‘jump’. Without pain.

But these are pointless thoughts, and I push them away. For 36 years I was one of those people. I never appreciated the sheer joy of free movement, of not being in pain. I also know that many people get RA much younger than me. I remind myself that I am still luckier than many people.

Time to wake the kids and get them breakfast. Get them to school. Have a shower.

Ahhhh shower.

I take a long shower every morning. It is the single most important part of my morning. It washes away the last of the stiffness, and eases much of the pain. But not all. And when the shower stops, so does the relief.

I have tried many morning routines and this one works the best. It takes a full two hours for me to feel human. And to look human. My eyes are much less inflamed now. I still look like the elephant man to me, but I must admit to others I would just look a bit puffy eyed. They would probably think I drank too much last night and am hungover, I suppose. Whatever.

9am. Kids are at school. Yay! My most important task for the day is complete. Now I need to try and work. I am a web developer and I work from home. I’m very lucky to have this arrangement. I am only capable of working about 15 hours per week. About 3 hours per day. Usually broken up into two lots, with a break in between. So essentially it takes me most of the day to get 3 productive hours in that I can bill for. But as I said, I am lucky. Part time work is very hard to find. Understanding employers, even harder.

Again I strap some heat packs to me, and sit down at the computer. The pain has gone down to background noise, and I focus on my work to take my mind off it. Because I am not actually in a ‘flare’ right now – all of this is just ‘normal’ for me – the pain has become mild. Annoying. But it doesn’ t stop me working.

10:30 am. I need to take a break. Walk around. I do some dishes. Dunking my hands in the warm water feels amazingly good.

11am. Back to work for a bit.

12:30pm.  Lunch break!  I should be able to do another hour of work after that.  Or some housework.  I will have to choose one, the other will have to wait.

2pm. I will have to pick up the kids soon. Head for the shops, figure out something for dinner. I’m still feeling pretty good.  When I go outside in the cold my hands start to turn yellow and bloodless.  Then they turn purple. It hurts!  This is Raynauds Disease…another sign of Rheumatoid Arthritis and other autoimmune diseases.  My hands are numb and its hard to grab the steering wheel.  I need to warm them up – why didn’t I put my gloves on???  Oh yeah, because its not actually that cold and I keep forgetting.

3pm. Pick up the kids.  They are happy and excited, and telling me about their day.  We have afternoon tea and do some homework, and again I realise I am way luckier than a lot of people.

4pm.  I am feeling OK.  Starting to stiffen up, but there is a pilates based class on at the gym.  I will go.  It will do me good.   I head down there and warm up on the recumbent bike.  My knees crack and grind as I force the pedals around.  My ankles are giving me trouble too – they don’t want to bend.  The first five minutes of exercise always hurts.  But once I start to warm up, I have learned that the pain decreases.  So it’s worth pushing through.  There is a reward.  A reduction in pain, albeit temporary.  There are all the other benefits of exercise as well – increased muscle strength, improved cardiovascular health…exercise is good for everyone.

It is especially good for people with Rheumatoid arthritis.

Of course there are some days when exercise is completely impossible.  When standing up is hard work, exercise is off the agenda.  That’s when I am in a true flare.  Not just everyday pain. And there are some people with severe rheumatoid arthritis who never feel good enough to even attempt exercise.  So again, I realise I am luckier than some.

The first half of my pilates class is strength based, using my own body weight to build muscle.  The second half is composed of lots of stretching, which is so good for arthritic joints.  Other days I life light weights, or do a light workout on the cardio machines.  The recumbent bike is good for people with lower back pain.  The elliptical trainer is low impact cardio. On my best days, or really determined days, I run on the treadmill.  Or jog, really.  I do whatever I can do on the day.

I leave the gym feeling much better than when I arrived.

6pm. The pain has returned with a vengeance. My ankles, knees, hips, shoulders, elbows, ribs, jaw are all taking turns at feeling the worst. I have to get dinner prepared, then I can painkiller up.

6:15pm. Endone (oxycodone). Ahhhh.

6:45pm. Narcotic pain relief has kicked in to a point. A glass of red will hurry it along.  The dishes will have to wait. The kids and I will watch TV until bedtime now.

9pm. Exhausted. Everything hurts again, the endone has worn off. If I take another, I’ll probably be hungover tomorrow. If I don’t, I probably won’t sleep tonight.

I take another. I don’t want another night like last night.

10pm. Drifting off to sleep.

2am. I am awake because there is pain all over my body.

 

16 COMMENTS

    • Thanks Lee, for your kind comments. I wish the same to you – a good night’s sleep can make all the difference in the world!

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  1. You explained my nights so well. I also get burning legs and feet. Some nights I want to get up and put them in a bucket of cold water but I’ve got plantar fasciitis which is exceptionally painful and if I dip my feet in cold water it will make the pain worse not better.

    I’m envious of you exercising. I want to but the fatigue just completely and utterly overwhelms me on a daily basis. I also can’t tolerate most pain relievers. I’ve been on Endone and it now makes me feel incredibly ill. I had a bad reaction to Oxycontin and never want to touch that stuff again. Panadol Osteo is just like eating lollies for all the help it does. I recently tried Tramadol but that gave me a migraine and nausea and was just nasty so I can’t take that either. My rheumy eventually put me on Capadex which was AMAZING!! It gave me relief from the pain AND I could take it during the day and NOT feel like a zombie. Finally something that worked and then the bloody government decided that it was no longer allowed to be used in Australia so that was that. I asked my rheumy for more pain relief and he said no because he’d have to give me a narcotic and he doesn’t want to do that so I have to put up with the pain instead.

    • I’m so sorry Michelle. To have had a pain reliever that actually works taken away from you is awful. Can you see a pain management specialist? I am on a waiting list, but I have been for years. My rheumy is also leery of prescribing narocotics. I amazes me tha so many rheumatologists are like that, they of all people should understand how bad the pain is, and that it needs to be addressed. The problem with narcotics/opioids though, is that I still can’t function – the zombie factor! For me prednisone is the lesser of all evils. I hope you find some pain relief soon.

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  2. I know this is an old post, but I’ve just found your blog. This sums up so perfectly how I feel, especially at night, I always struggle to articulate how the flares affect me, you’ve done it so well. I think I am probably very similar to you in terms of age & approach – I try so hard not to let it stop me doing the things I love, but sometimes you have no choice. And sometimes you pay for battling on. But anyway, I just wanted to say thank you for putting it in words, and for inspiring me to carry on fighting and looking for alternatives to the evil drugs. One day huh?!

    • Absolutely, Kirsten – one day! Thanks much for you comments and good luck in your search for that magic combination. We all inspire eachother to keep doing the things we love, as much as possible 🙂

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  3. I have just found your blog and I am sitting here with tears streaming as I finally feel as if there is someone else who walks in my shoes. I too realize that I am better off than some as I was only diagnosed at 35 (4 years ago) but during the agonising sleepless nights it is sometimes hard to be grateful. I have a filled prescription of arava sitting here which I can’t bring myself to begin as I am scared of the hair loss side affect. I am currently on maximum dose of methotrexate, daily mobic and prednisolone 10mg (currently in a flare) the MTX has made me lose half my hair already and all my eyebrows so I’m just scared to take on the arava. It’s not just vanity, looking sick makes me feel worse and I don’t want others to see me as a sick person.

    • Hi Ruth, I totally understand about the hair loss…I would say over the last few years I have lost about half my hair too. I keep whacking it back in a little pony tail that has just gotten thinner and thinner. It *does* effect your self esteem, and your sense of well being, even though it might seem like such a small thing, compared to the pain and disability. If it helps any, since I started taking Arava, I don’t believe its made my hair loss worse…so not everyone gets that side effect. Obviously your RA is not under control, even with the mtx, pred and mobic. I’m so sorry you’re still flaring. The Arava could well work for you. Its always hard starting a new drug. Hope vs fear of side effects. You’ll take it when you’re ready. And all the best to you!

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  4. Hello!!
    Thankyou for sharing this!! I was diagnosed at 38, I am currently 56, 57 next month.
    My RA was very acute!! It started in ’95 with severe pain in my wrist while I was still working, by August of that year I was just about wheelchair bound!! I was finally admitted to hospital for diagnosis and treatment, however my Thyroid was acting up at the same time, so the Dr’s were a bit puzzled as to why my joints were swollen and painful, I think they kinda knew but wanted further testing and observation, and why I was quickly losing weight(lost approx 50lbs in about 4 months) and why my heart was racing, my hands trembled etc…..was referred to an Endocrinologist and within about 15min he determined I had Graves disease, or Hyperactive Thyroid…..between the severe joint pain and the Thyroid symptoms, I was convinced I had Parkinson’s!! The Thyroid treatment was relatively easy, although after 2 yrs of taking the medication, which the name escapes me at the moment, I ended up having to drink Radioactive Iodine, which essentially killed my Thyroid. I was prescribed Levothyroxine which I will continue to take for the rest of my life. Being hospitalized with the RA for treatments was kinda scarey cause the Dr hadn’t confirmed a diagnosis yet, after about 3wks in hospital, it was finally confirmed as RA! I must admit, I was devastated because I always thought after seeing a few elderly family members with joint pain, that I hoped I never got anything related to Orthopedic disease!! Knowing this diagnosis also took an emotional toll too….I also had to stop working!!
    However my treatment went well while in hospital, although during it, I suffered with many of the symptoms you described, except the ribs…..I don’t recall having any issues with them!!
    Over a period of about 14yrs I was prescribed numerous meds to try to stabilize the RA….some things worked but only for a brief time….other’s did not! The one medication I was on for most of those years was Methotrexate….which I hated because of a few side effects, one of which was the hair loss, and secondly nausea.
    I tried some ofvthe Biologics like Kineret and Enbrel, which seemed to lessen the frequency of flares, but not the intensity. Finally, my Rheumatologist, who I love, prescribed Remicade which is administered intravenously about every 8 weeks. I started it about 5years ago, along with Arava, I was soooo glad the Dr took me off Methotrexate!!! It seems now my RA is in a stable condition, although I do get the odd flare but not like I had in the past!! Unfortunately however the years of constant flares, pain, swelling, stiffness, pretty much destroyed my knee joints, so much so that my right knee was partially fused in a bent position, and my left knee was heading that way too!! My knee condition went on for several years when finally I told my Rheumatologist that I couldn’t live with my knees like that, so I was referred to an Orthopedic Surgeon….who is quite nice to look at I might add!!!….lol….and has a wonderful bedside manner!!! Finally it was determined that I needed a total knee replacement….I must admit I was nervous, but something drastic needed to be done!!
    So, in Dec. of 2010, I had my first knee surgery!!…..the first few days saw a lot of pain but I was prescribed Oxycocet or Percocet, which helped with the initial pain!! As time went on, and Physio, I was elated at the result!!!….and so was my Surgeon!!
    It was evident that my other knee should be replaced as well, so in Feb. of 2012, I had my other knee replaced!!….I wasn’t as nervous as the first time because I knew what to expect!!…..the result of having my knees replaced has been life changing for me!! I can now go for walks, (although because the RA, my toes have become a bit deformed) go shopping, drive, garden!!!…..I can do all these activities with more freedom, but again because of the RA, I do have pain and stiffness mostly in my feet, hands and shoulders…..IF I do too much!!
    Bottom line though, I love my new knees!!!!
    As I mentioned above, I am currently on Remicade which seems to have stabilized the RA….hopefully this reprieve from the agonizing pain and stiffness I was dealing with in the past will continue!! I hope you don’t mind me sharing my story, hopefully it will help others in their struggle with RA!!

    Thank you,
    Marg

    • Thanks for sharing your story, Marg. You’ve certainly been through a lot. I’m glad that remicade has you stable. I hope it continues forever! I’m glad your surgery was successful – the idea still scares me, but being able to do all those things again would be so worth it. I think it helps a lot to hear other people’s stories and successed…thank you 🙂

  5. hi Admin!!
    Thank you for your kind comments!! As i mentioned in my story above, I love my new knees!! I truly hope you can push past your fear and take the next step in having your knees looked after! I guarantee your life will be changed!! i would like to share this song by Sara Bareilles, hopefully to inspire you in your decisions!! https://www.youtube.com/watch?v=QUQsqBqxoR4

    Thanks again!!
    Marg

  6. Just told my daily story but its real life RA is painful since age 9 diagnosis w ra I’m about too be 32 all major jointsare replaced metal

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