Monday, February 15, 2010

What It Felt Like – and Still Sometimes Does

Someone asked me recently what it felt like when RA first hit, and I realized going through my blog that I really haven't covered off in a whole lot of detail what it felt like at the beginning, before I really knew what was going on. Especially when it was really bad, first thing in the morning and at night when the stiffness started setting in again.

The worst thing is actually something that hasn't bothered me since: my right shoulder. I'm not sure why it hurt so much, but it hurt like hell, so much so that it kept me awake at night and sometimes woke me up. I don't know if it was all the joint, or if the muscles got involved because I tried to protect the joint and everything tightened up, but all I know is, it hurt.  I had to put a pillow under my arm to support it so it wouldn't hurt so much, and I even resorted to muscle relaxants in an effort to ease the pain.

My knees hurt and my feet hurt and the weight of bedding on them hurt. Luckily my down duvet is light, and once I removed the cover to make it even lighter (brilliant idea!), I could puff it up over my feet and knees so it wasn't even touching them. Plus, the duvet was that much lighter so my poor arms and shoulders didn't have to deal with any more weight than they ccould handle – some mornings it was all I could do to get out from under the duvet, that's how weak I was.

I wouldn't have slept under anything, but it was winter, and I had a low-grade fever on top of everything and had the chills and needed to be warm. (The fever? Still here – no wonder I've lost weight!)

My neck hurt, too (yes, the cervical spine can be affected by RA), and that didn't help matters re my shoulder. Everything was tightening up and going to bed wasn't fun – moving from a sitting to a lying position took some thought and effort in terms of how to do it with the least amount of pain.

In fact, everything took thought and effort. Now I can cross my legs without thinking thanks to all the meds I'm on. Then, every movement was thought through because it hurt or took a great deal of effort. If I talked on the phone for more than 3-4 minutes, it took time to put the phone down because my elbow had frozen into a bent position.

When I had a meeting at work, I asked a colleague who knew what was going on to come by at the end of the meeting to sit down and talk to me till everyone had left. Why? Because I wouldn't be able to stand up properly, and I didn't want anyone other than a select few to know what was going on. How did I stand up? I had to put both forearms flat on the table and push myself up. I couldn't use my hands or wrists; they were too sore. My legs? They were too weak and sore to do the job on their own.

It was a Catch-22 situation: I didn't stand up or move unless I had to because it hurt and made me tired, but I couldn't stay still for more than 10 minutes or so, because if I did, I could barely move. At night in my apartment, I took little walking tours of my living room through to my bedroom and back again, swinging my arms in windmill-like patterns to keep things loose. I was exhausted, but I had no choice.

And I couldn't lie down on my couch, because I was afraid that if I did, I wouldn't be able to get up again. Don't laugh! After that almost happened in the washroom once, I started carrying my cell phone everywhere with me. Reminded me of those "I've fallen and I can't get up" commercials they used to air years ago. Only not so funny now....

When I walked to the elevator, I pushed the button then stood right by the wall where the carpet was just that much more cushy because my feet were so sore. One night while driving home, I hit a big bump in the road and actually started crying because my hand hurt so much from the impact. After that, I started holding the wheel more lightly.

Getting up in the morning was the worst. I lay in bed moving around as best I could to try to loosen things up before actually attempting to get upright. God forbid I actually had to go to the washroom – that would have to wait, it just wasn't possible. My cosy winter housecoat was left hanging and I wore my thin little summer one – it wasn't warm, but I couldn't manage to get on anything heavy.

Washing my hair was difficult; my back was out of the question. I had no non-slip mat in my shower at that point, and  I'm lucky I didn't kill myself getting in and out of my tub given how stiff I was – if I lost my balance, there's no way I would have been able to save myself.

A friend bought me a jar opener. Ziploc bags proved difficult, so I just left them open; in fact, I starting leaving open pretty much everything I could – my contact lens solution bottle, face- and hand-cream jars, lip-balm tins, shampoo bottles, everything. I brought all my prescription bottles to the pharmacy and got them to switch the lids for easy-open ones and put a note on my file that all bottles in future were to have easy-open lids.

Since that really bad time, I'm on meds that have helped. Some things are still difficult. The jar opener gets used all the time. My tights get pulled on in a special way I've devised. My feet still hurt, so the down duvet still gets puffed up. You get the idea. Anyway, hope this helps people understand what it's like, and what it is still like sometimes when the meds aren't working or when an uncooperative joint just decides it's going to act up. :)


  1. I totally relate! I remember waking up every morning unable to move my fingers for the first 3+ hours or so. & stepping out of bed, ouch! I'm so happy i'm not in THAT much pain anymore cause of the meds, although i'm still sore a lot, it's nothing compared to the beginning. Scary stuff.

  2. Hey Skye,

    Meds are amazing (despite the scary possible side effects). I don't know what I'd do without them. Even now I'm trying to cut back on the amount of Tylenol I take each day (1000mg 4x daily) and I just can't – I get too sore and the pain is too much and my temperature starts creeping up. Sigh :(

    Glad you're feeling better. Hope the Enbrel will be good for you!


  3. Thanks, :) I hope so too.

    & my pharmacist told me I shouldn't mix other meds with what I was prescribed so even though I've been sore lately I haven't taken things such as Tylenol to help. Anyways I hate having so many pills!

  4. The way your rheuma hit you is very like the way it me, Laurie, back in 1987. I kept thinking that somehow I was hurting my shoulder, then my wrist, my fingers ... I even blamed that terrific pain in my feet on my shoes. It would come and go, so I was never sure. Thing was, it didn't matter which shoes I wore. When the bottoms of my feet started hurting so badly, constantly, that I couldn't get out of bed in the morning without yelping, I finally made an appointment with my doc. Ta-da -- rheumatoid arthritis. And that was with them not finding the Rh factor in my blood. What followed what years and years on various NSAIDs ... they weren't using methotrexate in the U.S. military medical system in Germany at the time, I guess. And lots of narcotic painkillers. I was near-crippled for most of the time I was there -- 6 years.

    A few years after I got back to the states -- and had stopped taking ANY meds for the rheuma -- it went into remission. Now, of course, it's back, but mainly in my hands and wrists, and with more fatigue than in the earlier years.

    I am so glad that the docs KNOW now to be aggressive in treating this disease. My heart goes out to you for the pain you endured, and I'm glad for you that it's measurably better now. Perhaps the biologic meds really are the answer for some people. I do hope so.

    Wishing you the best...

  5. How awful, Wren! I can't imagine that – 6 years! – I only wish the remission had lasted even longer for you.

    I'm so glad that I do have the options that are available now – and a rheumatologist who's willing to be as aggressive as I want to be battling this crap disease.

    Thanks for all your wishes and support – I'm sure I've said it before, but it means a lot to me!

    :) L

  6. Very well written, Laurie. It's good to hear that the meds are helping you. Hang in there!

  7. Thanks WarmSocks! Trying to do just that, and your encouragement helps!

    :) L