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Comments (127)

127 Responses to “What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle”

    1. melissa says:

      Kelly, thank you for this post! i generally go to the convenience sttore and pay more for my purchases simply because there is less walking involved. and all clothing purchases are made online so they come in the mail! i used to believe it when people called me lazy. is still feel frustrated, but i no longer feel guilty.

    2. Jayne Gatherall says:

      Your shopping experiences hit me right between the eyes when I read it. I was diagnosed 6 yrs ago and continue to fight everyday to stay at my job. I rarely go shopping now unless it is absolutely, positively necessary. My husband has to be with me and grocery shopping is no longer a full meal deal. It is the basics and then I am on my way again. My social life has suffered so much because I am so tired all the time that I just stay at home. I wish and hope and pray everyday to get better but I have to realize there is no cure. Nothing that my doctor has used so far has worked. My last drug to be given to me was rituxin in May and I am still very stiff and the pain varies from moment to moment. Keep up the good work on this blog, I learn alot of info on here and will continue to follow as long as you are able to write it. Jayne

    3. Anne Marie says:

      I can relate to what you are saying completely. I very seldom ever carry a purse because after awhile it makes my shoulder hurt. I take the bus to the store and have to walk home about a mile and by the time I get home my foot, back and knees hurt and like you,I am leaning on my cart. When I walk home from work at night because the bus doesn’t run late enough (about 2 1/2 miles)I am so tired and hurt so bad I want to cry.
      I like Andrea’s idea of gel packs except I would use them on my foot,back and knees.

    4. deannej21 says:

      Great post! Its so annoying when people tell you to get up and move…I just want to say, why don’t you lend me the connective tissues that hold your joints together and you can take whats left of mine. We’ll see how easy it is for you to cook, clean, shop, and take care of your family while I float around my house conquering the world – judging you for not moving enough as your joints swell, your body fatigues, and you endure miserable pain in various parts of your body while trying to put on a brave face. Moving when you have bad joints is NOT the best thing. We have to move at our own pace and rest the joints when we feel persistent pain. Pain is the body’s way of sending us a message. I spent all of my teens and twenties not listening to it and if I hadn’t succumbed to the pressure to perform “normally” my joints would be in much better shape now.

    5. Elizabeth says:

      I have noticed a common thread with many of our shopping patterns–Walmart. I used to coupon shop at 3 to 5 different stores over a period of hours and hours in one day. Now I try to get everything I can at one store. I end up spending more money because I don’t bargain shop, but if I can keep it to one (hopefully)short trip to one store, then that’s what I do. And I try to avoid Walmart now whenever I can, because it’s so big. I have a little tiny store in town now that I usually go to. But I’m in a small town, so if I have to go to Walmart, I try and get groceries there, as well. Anything to keep the trips and the walking to a minimum.

    6. Kathy says:

      Omg! I just found and read your blog. I have severe aggressive RA for three years. Prior to that I was a nurse for twenty years, worked full time, maintained my home and raised three children. Now i have to plan everything I do. Shopping is the worst. My kids usually have to bring a wheelchair from the house to car to get me inside. I truely thought I was just a whimp. Every article and doc says to exersice. I feel like a huge failure because walking around the block once puts me in bed for at least a day and a half. It is so wonderful to hear I am not nuts. Using the scotter buggy at Walmart has been an option for me on more than one trip. I have been depressed over shopping trips and this is the first time I would jump up and down with joy.. if i could, to realize that I a not alone. Sending hugs !

    7. Nikki says:

      Rang so very true at times in my life. I now buy in doubles or even triples where possible while I am there. each time shopping gets easier as I have so much over stock at home. Does not help in the area of fresh product but boy do I stock up on the things that dont expire. It makes it easier when I only really do need a few things. I am also blessed that my husband will pick up stuff from town when I call him on his way home from work.
      Good luck to all of you. Hope you always have extra spoons.

    8. Louise says:

      ”The usage principle”. I like the term but I wish I had read this years ago. I’ll have to pay more attention from now on. Yes, shopping is a definite down-er. You leave the house with all the good intentions in the world and end up a short while later completely discouraged at what you CAN’T do. I’m also all for the ”one-stop shopping” but I occasionnaly, on good days, get ALL the errands done (bad idea) with the consequences that we all know. Stocking up has been a hobby of mine for years now. What an exciting life I live ;-)… But more seriously, I’ve had respiratory problems (doctors are still trying to figure this one out) for over 3 years and getting into a grocery (or any stores with very cold air conditionning or fridges) is extremely draining as I can’t breathe, thus making my efforts that much more labour intensive. I’ve, on more than one occasion, left my cart and ran out of a store (well, run like a turtle) because of it. Getting in line at the cashier’s counter and trying to empty a grocery cart while people line up behind you is humiliation at it’s best. After struggling to get all that stuff IN the cart then trying to get it out well…. you know what I mean. And because you know what I mean, and you know how to describe it, I’d like to thank you for making me feel like a human being again. For you Kelly and all of you who take time, energy, and effort in typing those wonderful comments…Thank you for being there.

    9. Jaynie Snoke says:

      Good lord, woman, Walmart has those cart thingies for a reason! USE THEM! Yeah, it’s embarrassing at first, but you won’t die of it.

      Before the RA was diagnosed, I had several years’ worth of practice with a spinal injury and knee replacements. I was relatively young at the time (43), but you do whacha gotta do!

      I’ve had my share of stares and comments, having had mobility problems that have required leg braces, back braces, a wheelchair, canes, and crutches (both kinds) I am no stranger to the curiosity of others. (My observations lead me to believe that the run-of-the-mill 7-15 year-old is far, far more polite about not staring than their adult counterparts.)

      RA has taught me an exceedingly valuable lesson – not to care too much about the stares and overheard comments of others.

    10. Christy says:

      Wow this is so helpful!! My feet hurt so bad I can barely walk. My left shoulder and my eight elbow areI so bad I can barely pick up anything. My next feels like I’m trying to move it with a rusty hinge and makes the same sound lol so I thank you for sharing this!

    11. Kat says:

      Hmm…sounds like online shopping is the way to go. I developed RA when I was 25/6 and am now 37. I sometimes go to my local store, but I have used the ‘net a lot for big shops. I avoid wandering up and down aisles, queues, stares and transport issues. Plus it is a lot quicker and since I can see how much I am spending there are no nasty surprises at the checkout.

    12. Karen says:

      Right on! I wasn’t a Walmart shopper until I learned they had motorized scooters – I now ride while my “helper” fetches, so I abandoned the local market.
      On the topic of “Usage” – I kept seeing that commercial about “A body in motion tends to stay in motion so all you arthritic folks get your butt up and play catch with the dog…etc.” I’ll give points to my internist who told me that I could NOT have physical therapy at this time because I was in ACTIVE RA – as opposed to the rheumy expert who wanted me to get therapy. I have learned the limits of my Energizer Bunny body and that I can “go” for a bit then have to spend 2xs that time in recovery mode. Love your blog – even the rehashed stuff!!

    13. Susan Galyon says:

      Whatever motion we want to do is a trade-off. Each choice to move has a price, big or small. Always trying to be ‘productive’ and take care of my family. I was never ever a short cut kind of gal-had to be homemade from the get go or else. Some compromises I can’t make……..yet. Need prayers Monday-hand surgery right before TG adds to my guilt. New drug-Orencia-and optimism always. Fear too.
      Much love to all and wishes for a truly thankful day with family. ~Susan

    14. Sarah says:

      I always say, everyday I make a list of think I want/need to do. Then I pick 3 things that cannot go without being done. That’s my day. Cooking, grocery shopping, laundry, chores……before shoe shopping, spa treatments, movies, and lounging in th book store. If I have a major event like a birthday party or festival, that’s it for the day. It gets easier as time goes on to “budget” time, but it’s also very depressing at times. I’ve never been a ball of fire, but this is definitely disabling.

    15. Teresa says:

      We went for the yearly make Santa’s list event to a Target. This store is 45 minutes from our house but has the best selection of toys. SO, me my 9yr old , and hubby spend hours walking and stopping and looking and talking. On the way home, I fell asleep. My hubby saying it sounded like I was sucking the interstate off the pavement . For the next two days, I was dying in pain. This is just one of many instances. Mother Hubbard is right!!

    16. Kinsha, my answer to that one (which I hear a lot from hubby), is that if I’m going to hurt anyway, I’d rather hurt doing something that I love. That’s not to say that I am daft enough to push too hard. I used to shop for hours, all day long and while I still love to shop I know that I have to limit the walking around that I do and take regular coffee breaks. I love to clean house but I do it in bits so that I don’t trigger a massive flare. It’s a balancing act, do what you love but do it more carefully.

    17. Christy says:

      I am so glad to have found this blog. I am 36, have had to quit my job as an elementary school teacher, and rely way too heavily on my two teens. I regularly feel that I am lazy or exaggerating things, surely this can’t be real at my age…. Here, reading your stories’I feel validated, not alone, or crazy. Thanks so much for the clarity and help that you provide here.

      • Thank you, Christy. I think we all have that same benefit from this community, including me!

      • Sarah says:

        Christy, I am also 36 and had to quit my job. I still have a 3 year old to contend with and she’s wonderful. But I never imagined my life like this at 36. I was a federal law enforcement officer.

    18. Jenny says:

      I love this post! I also love the quote “I always go down fighting, but I go down. RA is a very powerful adversary” isn’t that the truth!!
      I’ve been in a serious flare for a couple of weeks now. I would go to a store (with my dirty hair in a ponytail) and was in so much pain that after getting a couple of items I’m so exhausted that I have to checkout, and by then the pain has also increased. This all started since I went off my Enbrel & Immuran to go on Orencia injections, which may take 6 months to work. So I just went back on prednisone again which does work and actually allowed me to actually sleep for more than 1 hour in a row. Today I was actually able to get to a couple of stores before I wore out and came home. I don’t like to take prednisone but it’s great when you really need it to keep moving.

    19. Elizabeth says:

      Jenny, why did you go off Enbrel and on to Orencia? Although Humira and MXT has made my life better, my X-rays show my feet are getting worse. Rheumatologist wants me to perhaps try Orencia, but I’m very wary of going back to the previous level of pain. Plus possilbe lung infections. I couldn’t dress myself, much less go to Wal-Mart.

    20. […] RA Warrior posted this topic to HER blog, so I decided to post about this topic to MY blog – from my point of view. […]

    21. Teresa Hillman says:

      For years I have shopped by coordinating my energy and pain level. I was just diagnosed the Wednesday before Thanksgiving. I am so glad to find this website!

    22. Anna Marie says:

      Another great article. I’ve been on my journey for a little over a year now and find great comfort in your writings. While everyone is affected differently it’s nice to be able to visit with someone who understands the physical and mental baggage that we share. Thank you!

    23. Bob says:

      Do you think that a ssdi judge will believe this.
      I have been working a disibility claim for a year.
      I am 59 years old and worked in a paper mill for forty years.
      Thank You

      • Bob, I hope they do – it’s always been a part of the experience of this disease, but there is not literature describing it. We are working on publishing something that will help document the issue and hopefully inspire more research on it.

    24. Johnny Fatheree says:

      I think I am chronic RA. It frustrateds me to no end. I went to a little league ball game yesterday, and just sitting in a lawn chair on concrete liked to have killed me. I keep pushing, but RA keeps pushing back. I have re-occuring low grade fever, and constant fatigue. I am a very, very, tough guy, and continue to try and beat this stuff, but everytime I do anything physical, I end up down. When I say down, I mean down. The story about the shopping describes me to the “T”. But, I can’t stay longer than about 15 -20 minutes. Riding or driving 45min – one hour and I have to peel myself out of the truck. Host of dope. Legal percriptions including Orencia, methotrexate, cymbalta, mobic, tylonol arthritis, baclofen, hydrocodone, others. Physical activity just kills me.

      • Johnny, your stories sound very familiar. The worst thing about this diagnosis is trying so hard to do some of the things I used to do & barely managing & having it leave me more incapacitated afterward, while others who don’t experience the same thing judge me for not being as you say “tough.” Those who really know me know I’m a tough guy too.

    25. Mandy Sanchez says:

      Thank you for this article. It hit home. I too find that I can only go to the stores for very short periods of time. I also have gotten to the point where I need to hold on to a cart in order to walk through the store. My husband is constantly telling me to use one of the motorized carts but I refuse to. I don’t know if the reason I refuse to is because then I have to admit to myself that things have gotten really bad or it is the stares I would receive when using it. When I go out for short periods of time, by the time I get home I am wiped out. The fatigue is incredible. As the evening progresses I get worse. I begin to walk hunched over and shuffling throughout the house. I have been prescribed all kinds of medication for pain but unfortunately I cannot handle pain meds. I get violently sick.

      I have to thank you for providing us with all of this information. I do not feel alone when I read the articles which point out so much of what I am experiencing. I was diagnosed 1 1/2 years ago and am now receiving infusions of Orencia along with all the normal meds like plaquenil, methotrexate, etc.

      • I hope the Orencia helps Mandy. If you don’t feel better, maybe you can talk to your doc about other options for pain meds – there are several different medications & they can be taken at different doses – so you may find something that helps.

        • Mandy says:

          Kelly, thank you so much. I am due back next week to see my rheumy again and I will ask about other pain meds. Again, thank you for this website. I look forward to getting my emails and reading up on all articles and posts. I don’t feel alone in my battle.

    26. Brian Mikesell says:

      Wow that’s all I can say very good reading. thank you so much for writing this story about me and what I go thru every day lol

    27. Vanessa says:

      I think part of the problem are the mega-ultra sized monster stores. When shopping at the monster stores, I would go early so that I had time for a nap afterward. We’ve live on post at an army base in the middle of Alaska. The commissary is much smaller and the baggers take things to my car and load it. It has helped immensely.

      Another tip for the big stores: my older kid would start at the bottom of the list with her own basket while my younger one stayed with me and we started at the top of the list. Since the list was sorted by store location, it seriously cut down the shopping time and it started to become a game for my daughter to get more than me.

      (My older kid was 13 when we figured all this out)

    28. Bobbie says:

      My youngest daughter was diagnosed last year at 15 she is having a flare up with her hips right now I feel so bad for her. I don’t know how to help her. My mother had r.a. as well I have s.l.e. lupus and I’m not sure if her pain is like mine there are times I just want to give up but I know I can’t I just hope and pray she will be OK.

    29. Margaret Rigney says:

      Exercise is encouraged by my doctor and many experts. I have taken their advice and had PT and try to exercise at least 5 days out of 7. All have resulted in the same situation that Kelly mentioned above. I kept thinking that if I get strong enough I’ll feel better overall.
      For example, yesterday was a relatively warm day after many weeks of extreme cold and/or moisture that made walking impossible. I walk around the perimeter of our backyard so our dogs can accompany me. Six trips around equals one mile. Afterwards I picked up pecans with a tool that you use like a broom. A lot of pecans were laying on the flatbed trailer secured beneath the tree. Easy pickings, right? I couldn’t make the step up on to the trailer. Something I used to be able to do easily. Last night I was in pain through my hips and legs as well as my hands.
      This article has been an eye opener for me. It explains a lot and now I know I’m experencing a common phenomenon in RA and that moving is not neccessarily the key to a better disease control. I’ll keep moving but will be more careful in honoring my body’s limits. Thanks for the article!

    30. Dani says:

      PLEASE HELP ME!! IM IN A DOCTOR WAR!! 1 ARTHRITS DOC BLEW ME OFF AND SAID FM.oops still big letter’s. Seeing new 1 in same practice. I’m a joints swell to point bruise.numbness and and tingling in hand’s, feet,fingers which now I have 3 fingers that won’t barley move and so hips, dear lord feel broken. Days I cannot goes on and get worse with movement and heat too.they haven’t tested me yet except when a child for RA.negative but I should every symptom of it. Please help me. I’m tired of fighting this battle alone and being pushed off bc they say its FM!! On fb please help

    31. Heather says:

      Made me cry…not sure I have the strength to face what lies ahead! X

    32. Jacque says:

      OMG….you are describing ME!….I feel your pain as mine is the same!

    33. Merle says:

      I have read almost every post, and so much appreciate them. I have been in so much pain it’s unbelievable. I don’t go to the mall any more because of pain which starts about 15 minutes after entering mall. Went to local craft store recently and had to come home because the pain was too severe to concentrate on what I was there for. I have seen a rheumatologist now three times who says it’s not rheumatoid arthritis in spite of my anti CCP antibody test being very high. ESR is also elevated. I talked to my local doctor today as I was totally beside myself. In his mind I do have RA, and he phoned another specialist, and they are sending me an urgent appointment. I am interested to know what medication you other sufferers are taking. My husband is thinking about getting a wheelchair for me to use on longer outings which require a lot of walking. I really resisting this at the moment. Do other people out their use a wheelchair for outings that may cause pain? Thanks Kelly for your bog. So appreciated.

    34. Victoria says:

      Yep. Rush in, rush out, before the coach turns into a pumpkin. On top of all this, I am diabetic, so shopping is like venturing into the jungle all alone. Disaster might strike at any minute. I can be grateful that I have a wonderful husband who does understand.

    35. Catherine says:

      Great great article! I laughed and cried reading it and can truly relate. ❤

    36. Cindy Smith says:

      I’m newly diagnosed with both RA and PsA and have had the same experience with long shopping trips (more than 10 min, no can do). I am now thinking about trying the order online and pick up deal that Walmart offers .

    37. Angela says:

      It’s interesting you note, “The difference between me and other people is neither that I’m lazy or crazy. So, please do not recommend psychiatry or physical therapy to fix this problem.” For the first fourteen years of my illness, doctors insisted I was mentally ill. It wasn’t until I insisted there was something physically wrong that my doctor agreed to test me. The sad thing is, I think she decided to test me to prove me wrong. To everyone’s (except mine) surprise, there was in fact something physically wrong. It’s sad how long it’s taking certain perceptions and attitudes to change.

    38. Kathy says:

      Kelly, Once again, you’ve saved the day. I was at the end of my rope this morning when I came across this post on Facebook. I have been trying to increase my activity level over the last little while and it has unfortunately had disastrous results. And it wasn’t like I was trying to run a marathon or anything of that sort. Swimming lessons, gentle Waterfit, and warm water exercises. The result was a flare like I have not seen since before I was diagnosed. As you mentioned in your article, I am not crazy, or lazy (although sometimes I think RA/RD has driven me around the bend) and I have to get over thinking I have to justify myself to anyone. I’m not there yet. Now, about the shopping. My goodness, how many times has this happened to me. I hate that you or anyone else is going through it as well, but I am relieved to know it’s not just me. I walk into a grocery store, not with a bounce in my step or anything as wonderful as that, but walking somewhat “normally”. I’ll get about halfway through the store when my feet, knees, and hips don’t want to co-operate any longer. My pace slows down to a crawl and the limping is pretty evident. By the time I’ve checked out and start heading to my car, I so wish I’d stop being stubborn and request a handicap parking permit. But, I always think – if someone sees me getting out of my car when I get there they’ll certainly doubt me needing a handicap spot. Again, so worried about what others think instead of just taking care of myself. It seems that many of us are plagued with worry about what others think. We need to be kinder to ourselves. I am working on it, but I am not there yet. Thanks again Kelly for helping us to understand that we are not alone. Hugs

    39. Sara says:

      I”m 47 years old and have had RD for 22 years. I’m well aware of the pay to play verbage. I only wish everyone in my circle truly understood it. Even after all these years there is still a little person inside of me telling me I’m lazy and surely you can get up and finish that task or go out to lunch.

    40. Janet says:

      The Usage Principal. I started reading this because I have problems with my feet, yet the doctor says its all from “over use”. They’re my FEET, And I don’t run marathons or even walk that far, yet everything I do makes them worse. There’s no inflammation involved, its all my tendons. I ended up getting a shot in each foot, but it’s apparently something that will not be resolved. So now I know, Usage Principal. Thanks!

      • Janet – the membranes around the tendons get inflamed. It’s called tenosynovitis – a big part of rheumatoid disease / RA. This does not necessarily mean they are overtly (obviously) swollen on the outside.
        You can search “tendon” on this site for more on that. Search box on the right – bottom of pg currently.
        And if you have to use joints while inflamed, they do feel worse.

    41. Chris says:

      I’m so confused as how the doctor says exercise when at the end of a 20 minute stroll my feet are on fire and I’m out. I’m like, I must be doing something wrong. Good to hear so many in the same boat and we are in it together.

    42. Jennifer Tucker says:

      I completely understand this post. That feeling of thinking you have enough energy to do what’s necessary or even what you think you feel like doing, only to have it all over with in 45 minutes to an hour. It’s defeating.
      This past weekend I went to State Marching Band Championship to watch my kids march in their high school band. It was a two part day. The first part was evaluation. The second part was a championship invitational.
      My day had started early on Saturday morning with a piano recital for my daughter at the city zoo. I sat on a tree stump and watched proudly as my daughter played Super Mario Suite. It was getting very hot pretty fast. After her recital, I went to the marching festival to support a young family member, and basically spent the rest of the day out there.
      So I was active and busy for nearly 12 hours, and in pain. I climbed bleacher steps, walked across a football field and around a stadium to get to the bleachers. I sat in uncomfortable bleacher chairs that I could not hold because right now it hurts to grip anything and to type this post.
      So I moved all day. Sunday I felt as if someone had beaten me with a baseball bat. My morning stiffness was nearly unbearable and my pain level caused me to feel sick to my stomach. I did as little as possible on Sunday, but it is now Wednesday and I still feel crushing fatigue and pain.
      It makes me sad to think that a day of watching my children compete brings me to my knees. I have always pushed through, but it has gotten increasingly harder. I’m seeing a new RA doctor, and am hoping her plan of treatment works. I guess I’ll see.

      • Dear Jennifer, you bring back so many memories. Thank you for sharing so eloquently. I know it will help others know they aren’t alone. I will tell my son Roo about the Mario Suite recital – he will love that.
        I hope the new doc helps things get better.

    43. Jennifer says:

      Dear Kelly,

      Thank you for writing me back. Have you heard of tests coming back negative and erosion not showing up on X-rays, but still being in terrible pain? My last RA doc told me I had seronegative RA, and that I “read” RA. But it makes me feel like I’m nuts. My fingers and wrist and neck and jaw have just been terrible.Not to mention the fatigue. I’m not sure whether or not to be thankful nothing is showing up or frustrated since there’s no definitive answers. Thoughts?
      Thank you,

      • Jennifer,
        Damage shows up on xrays after it’s bad enough. It does not show up early on or when it’s mild. If you think about it, damage is not what causes your pain & disability either. The DISEASE PROCESS itself causes both. So you experience SYMPTOMS before it shows up as DAMAGE. This is a very important point many do not understand – because their doctors may not understand or tell them. I hope that helps you know you’re not nuts. Your situation is very common. Most symptoms you have at this stage are due to the disease effects on connective tissue (like tendons or actually the membranes around them). This makes joints weak or stiff or painful – that usually happens for a while before damage (erosion of bone shown on xrays).
        This process toward eventual damage can be very painful – as you know. Orthopedist docs can help sometimes with physical therapy, shots to reduce inflammation, special braces for resting or working the joints.
        The fatigue can be a major part of the symptoms and may be related to the disease process too. But don’t give up – do whatever you can. Eat well – get enough proteins. Try to get more rest than you needed before. Check your blood levels such as iron, vitamin b, vitamin D, and make sure you talk to your docs about any symptoms that might be important – like shortness of breath or worsening fatigue.
        I hope this helps – I wrote for others reading too. There’s still such a need for more info – after years. I do have a new book coming out that addresses some of these issues.

    44. Karen Hoskins says:

      Is your blog still active?

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