What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
The Usage Principle makes living with Rheumatoid Arthritis hard
In the Part 1: The Usage Principle, we discussed a phenomenon which is a daily issue for many people living with Rheumatoid Arthritis. Perhaps you noticed that blog post was unusual in that it did not have footnotes or links to studies which discussed the subject. I did not quote any because I did not find any. There may be some; I just haven’t seen any.
The concept is explained in Part 1 with shopping as an example. However, lots of comments describe the problem in other contexts. Basically, the problem is that any use of a joint which is inflamed by Rheumatoid Arthritis usually leads to worse inflammation. This can translate into pain and stiffness when movement lasts more than a few minutes.
For patients like this, there is a recovery period after activity. It can be hours or days. There are many examples in the comments on this blog. Recently, a veteran RA’er described going to work at a new job. She said that her RA is much worse and realized that the reason she had felt so much better before was that she had been able to rest more while out of work.
By the way, this makes life pretty difficult for those of us with RA in every joint. It affects everything from flossing my teeth to chores to sports. When I can do any kind of work or exercise, it is followed by a recovery period. I seldom mention to anyone that life is darn hard every day.
Do they know what living with RA is like?
Maybe you wonder why I made up the cool name “The Usage Principle” for this phenomenon. I couldn’t find one in a book. My doctors didn’t offer me a name for it. As a matter of fact, they have never admitted that I am not the only one. I’ve begun to wonder whether they know that this is a huge part of living with Rheumatoid Arthritis.
Then I realized: I was never warned about most of the things I live with every day. I spent the first 6 months of RA in shock mentally about what was happening to me every day as new joints hurt. Why didn’t anyone tell me what to expect? I first learned of the Rheumatoid Arthritis fatigue by experience. And RA stiffness, too…
I’ve told you before: my joints didn’t read the books first. Maybe it would have been better for me if they had. They would behave themselves much differently now.
Maybe researchers don’t know about this aspect of living with RA. Maybe doctors haven’t heard of it from any patients. Or maybe there is another answer.
Recommended reading:
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
- 10 Dumb Questions About an MRI for Rheumatoid Arthritis
- Can Rheumatoid Arthritis Affect the Spine?
- What is Remission of Rheumatoid Arthritis? Part 1
This is all so true. I was diagnosed in Feb. 2009. Early stages, so hands, wrists. Then in the past 8 months progression into other joints and more symptoms. I had no idea what to expect. I go weekly for mtx injections (also take plaquenil) and just this morning asked about “burning” pain, is this normal?? Yes they said. OK thanks for letting me know. Everyday something different. Having moved recently, I found the more I did, like packing, unpacking, trying to get settled the more pain and swelling. Called doctor in middle of move told them about horrible pain and swelling, was prescribed some pain meds, and told if gets bad don’t move and rest. Usage causes more pain and swelling…didn’t know that. Now I do. 😉
I suspect that most Dr.s don’t get it really. It is hard to comprehend until you live it. They might say, “don’t over-do”, but to really understand the rythmn of needed rests (comfortble ones, not just on a park bench) and how much it impacts our lives….
And I think they often don’t want to “influence” how we feel by telling us the truth. If you don’t know what the reality is, maybe it won’t be true for you. It’s like not telling what it really feels like to take MTX, and hoping it won’t be a big deal to you.
Yes, we are learning on our own, what we can do and mostly what we can’t. It’s heartbreaking at times, along with the pain of finding out…. Oops, I can’t do that!! Thank you for being there for us, Kelly!!
I don’t mind learning on my own. I just started wondering why the pros don’t talk about these things. It’s as if they don’t know. That can’t be, right?
I don’t think they don’t know – they just assume you will learn on your own. Have you ever been told “let pain be your guide”? Well after you’ve done something and it hurts, it’s too late! The hardest part is trying to explain to my 8 year old why I can’t sit and draw with her sometimes, or why we can’t make cookies, etc.
Doctors….. What do they know? To give you pills and more pills. Never a real solution. Atleast not for me.
we with arthritis are a spunky, inventive lot. i’ve made my own tools to help with daily activities and my children learn when i hurt(my joints are rusty). i’ve told them my orencia is putting a straw in my arm so i can drink the special medicine and we find ways to interact together at playtime if i’m sore.
Use…you hurt. Don’t use…you get stiff. Part of living with RA!
Andrew, If I move, I hurt and I’m stiff for a recovery period. I am really in pain & stiff today all over, for example, after being in the car running errands yesterday afternoon. It was bad when I got home last night. But, it’s not over yet.
Yes, sitting still for any period makes me stiffen quickly. For example, I have to use my hands to force my knees to straighten when I stand.
Why do you think that this matter of what usage does to us is found not in any RA literature? ?:-)
There doesn’t seem to be anything in the literature about usage. And it has big implications for our lives. Especially in relationship to exercise!
Ok, I’m going to do another Polio comparison here and you will see why I had such a hard time differentiating between my onset of RA and my post-polio syndrome.
In post polio treatment, we have a usage principal too. It is if you over use it, you will lose it. Figuring out what is overuse is up to you. We can’t go by pain at the time of usage because the pain and fatigue from the activity sometimes doesn’t show up for a couple of days. So, we have to learn where the limits are from past experience. For example, I feel so terrific in the pool that I will do all of the exercises with my class without any pain. Then, I get home and can barely change my clothes. I stay in bed all the next day. I’ve had to force myself to do about an 1/8 of what the others are doing in class. It is hard to remember not to overdo it and to endure (and ignore) the advise from others to “feel the burn”.
I think that the doctors don’t tell us about this because they truly don’t understand and because the adage “use it or lose it” is so entrenched in their minds.
To all you shoppers out there: use the electric carts! When I started using my scooter for all my shopping activities it really changed things and gave me lots more freedom. I still have to make sure that I don’t spend more than 30 minutes in the store but I get so much more done with so much less pain.
The researchers dont have RA which means how do they know exactly what to research?? Secondly, why didn’t our joints read the books out there?!?! Darn it I wish they had, it would be so very nice! Can I read the books to my joints and explain what they are supposed to be doing? If only they understood 😛
I still have to make mental adjustments when the “Usage Principle” kicks in…even after 17 years. There is a rebellious “I did it before, I can do it now” that I need to quit thinking and my family needs to stop getting on me when I can’t do something. I was diagnosed at 28 and am now 45. I don’t feel 45 for the most part but sometimes the pain and fatigue kicks in and I feel older than my Mom who is 70. I have a couple of friends that make me take it easier when they are with me and I love them dearly for that. I just wish others would take a page from that play book. Thank you Kelly for the great work you are doing here! It is nice to be able to see & hear from those in the same boat as I am.
Becky, I know what you mean. I have lived my whole life with this “just keep pushing / just try harder / just keep going” attitude. It is very hard to have to stop because I just cannot go on. It is very hard to accept the reality. I end up frustrated when I can’t move at all.
You said: “my family needs to stop getting on me when I can’t do something.” I guess we need better education of the public about what RA actually is. This is one of those secret problems that is not mentioned publically much. However, in private messages, I hear about it.
What’s so shocking is you have been diagnosed for 17 years! And this still happens. It’s good to have such great friends. Sometimes, that is our survival. O:-)
Education – that’s it, exactly. Instead of just having the ads for RA drugs with old people running through fields, the pharmaceutical companies would win more loyalists with educational ads that espouse the information you provide on your blog.
Kelly,
I agree with Andrew. My RA is severe, yet I stopped excercising regularly this summer in the hopes of having a second baby (never happened b/c I couldn’t stay off the meds. long enough to try due to severe pain). Anyway, I have been steadily declining since I stopped working out 3 days/week. I know it hurts for a while after the workout. But in an overall sense, I notice I’m so much worse w/out some level of excercise. I plan to start excercising again in the pool…slowly, maybe 1 day a week first.
So I have to disagree with your usage principle somewhat, except to say that in the moment it does aggrivate the joints.
But for anyone that thinks yoga or tai chi can “cure” the disease – they are fooling themselves. Yoga hurts and tai-chi, like all our relaxation tools, just eases the symptoms like 3 percent for SOME people!!!
I only have an RA dx from an internist, I’m waiting to see the RD in a couple of weeks. I do want to add three BIG examples of this for me in the last little bit. First, my hubby and I went to a college football talegate in November and game that had me on my feet for 8 hours. The next day? I literally could not get out of bed. My husband had to stand me up like gumby and help me to the car (no, I was no hungover–I drank very very little). Thank goodness we flew home, I couldn’t have stood the 5 hour drive. I slept the entire flight and the rest of the day we got home. At that point, I had no idea what was going on.
Just this past Christmas I had gingerbread cookie baking day. I rolled out, cut, and baked 4 batches of gingerbread cookies for gift baskets. The next day I could not bend my wrists or my thumbs without extreme pain. Oh, and I got a new “bump” on my wrist from that great adventure.
Finally, last Friday was a crazy busy day at work (I’m a corp. attorney). I was flying around my office filing documents like a bat out of hell. Saturday morning? Stiff for 2 hours and down for the day. I had the lovely “flu like” symptoms that pop up when I over do it. Oh, and I have a nice Baker’s cyst on my left knee to match the one on my right. I was in a chair all day, so it isn’t an injury cyst, it’s a too stressed out, going too fast cyst.
So, I don’t yet know what “just the right amount” is, but I definitely know that my body will tell when I’ve done too much. It doesn’t tell me very nicely, either.
I agree with Amy. It’s the “flu like” symptoms that bother me the most! According to my DAS28 score of .68, I am in REMISSION. Do I feel like it–NO! I am going to discuss this with my Rheumy at my next appointment. I don’t have joint pain or stiffness, but I do have fluey symptoms and neuropathic pain, like neuralgia.
I want to take a nap!
This one as usual hits home for me. If and when I have good day I try to cram as much into it as possible. I know even when I am doing things that I will “pay for it” but at least I have ‘that’ day. My housework gets done on those days……….sometimes the housework waits a LONG time but I have finally learned that is okay. My hubby has stated doing the laundry, as he is a chef by trade and still loves to cook, he makes dinner every night.
The past 3 weeks have been really bad for me and this morning was one of the worst yet. I have missed a lot of work and have cried a lot *which is NOT me at all* – Even my creative side and writing ability, which is usually pretty darn good, has run away and I can’t blame it – I would run away from this if I could too! I just did my Enbrel injection which has helped a little, but until I get in to see the new Rheumy, that is the only med I have other than the pain meds, which have been my little friends these past few weeks. I pretty much have slept more than I have been awake……………and No ONE understands other than other people with RA – How can we make people ‘get it’?
People at work now know by looking at me when I am having a bad day – my supervisor told me to go home yesterday because she could see the pain in my eyes……she is starting to come around a little but I guess until you experience this you just can’t understand. How can you explain constant pain to someone who doesn’t have it? How can you get the to comprehend what it’s like to not be able to even walk from the bed to the bathroom without suffering?
You can’t.
Thank you so much Kelly for starting this blog – as always you have brought a blessing to me –
Warrior Clan – hang tough – I’m going back to bed………..
Pamela, I know the last couple of months have been a bear for you. :heart: I’m hoping the new rheum dr. will help you hit back hard on this RA. Making people “get it” is not proving to be easy, but I’m not giving up either. Some have hard hearts – but most just need to be told straight the same way they learned about MS or diabetes or heart disease – with a clear serious voice through a medium they understand – like TV commercials.
This is the biggest problem I have with my RA. I usually pay for activity with alot of pain and stiffness afterward. It is the most frustrating aspect for me. My question is when does it get better? I am tired of being tired and I am tired of hurting because of doing my job or working on home projects.
David, That is a great question. For me, it has not gotten better. But I know of many patients who can excercise moderately and work full time once they are established on dmards. First, it depends on how severe the RA case is & then it depends upon the percentage of relief the treatments give. If someone has moderate RA and gets a 50% improvement from meds, he may be able to do most things, but with some consequences, but for a milder case, a 50% improvement would be feeling almost normal and so on. I hope you get relief soon.
I actually have an 80 year old friend with ra as well and they have told her USe it or loose it.. if she doesnt stop moving shell loose the joints faster.. Im a firm believer if it hurts stop….i also find my recovery spot is fewer as i progress.. comes with the depression of not having good days anymore.. so i think there is no answer.
Hey Shannon. I have had a couple of friends with RA in that age range too. If it is a very late onset, the pattern is often less severe. You are correct about “If it hurts, stop” – everything I have ever heard says that. I think the problem is that clinicians compare us all to the some patients who respond well to treatment and have milder cases. Those with “controlled” RA don’t experience this principle in the same way any longer. We would each know in a wink if we had that improvement & the Usage Principle were turned off. We’d be up and atem doing all the things we could not do for so long.
When we have good days, we tend to take advantage of them because we don’t know when we will have another one. We then proceed to overdo on our good days and pay for it later. It is SO hard for us not to take advantage of our good days!
It’s a constant budgeting process, although we have to manage energy and mobility rather than finances. I truly believe that we have to pay interest when we overdo!
That’s a good one Sally! “Interest”!
Did you ever talk to your doc about this? Mine has never mentioned it & I’ve never found an article on it…
I am so glad that I finally looked at this site..so informative and so true!! I also have found that when I overdue I pay for it with more pain, stiffness and fatique. I was dx in 2006 and have”failed” all meds and am now on actemra. The hardest part is the lack of understanding by so many. Yes I dont have a lot of obvious joint deformities but what you cant SEE is the fatique, the pain, the stiffness the inflammation…the discouragment..etc. Today is a bad day, I just want to try to sleep but it hurts to even lay down no position is comfortable I feel like I am about to burst into tears I am so so everything. I am so blessed that my husband and son dont care what the house looks like or what is for supper. And I do have a great rhuematologist. Thank You so much for this site!!
Hi Deborah,
Thank you. Is it okay if I say I think I know how you feel? I’m getting really tired of hurting today.
You’re right – a great rheum doc & a loving family are a great help. Good luck with the Actemra. I’m on that also.
I think the “other” answer to why we are not told what to expect with RA when first diagnosed,is that it is difficult for doctors to tell a patient they have something seriously bad which they can do very little to help. They certainly cannot “cure it”, which is the mind-set of their training. RA cannot be medicated into disappearance, it cannot be cut out by surgery, so the patient is sent away on his or her own, each to develope the disease in their own way. Some may go into remission for a short time, or a long time. Others will develope a more rapid acting form of disease, and either way, the ‘doctor’ can do very little to help. And the patient, who does not look sick, is left to face family and friends who do not understand any more than the patients do themselves. Thank goodness for a site like this one where the necessary and so needed information is shared.
You hit the nail on the head Marilyn!!!!!!! I was just diagnosed with RA/RD in April of 2014. I’m angry and scared. They need to find a cure!!! The sooner the better. What can we do to help this process along. I don’t hear much going on other than commercials that make it seem like it’s not such a bad thing!!
It would b nice to have forums every now and then. Or support groups. This web site Kelly started is the best thing. She has really put her heart and pain into it
I also had a thank u to Marilyn and to Kelly that didn’t get on the post!!!!!
Happy New Year!!!! Hope the new year brings better days to all!!!!
As a newbie I’m a little bit nervous about the changes. Mind you, the pain and stiffness have been building up… but I never expected the feeling tired. I thought arthritis was just joint pain, not feeling flu like and tired! Whoa what a life change this is proving! Still, I’m trying to face facts and realise this is a big lifestyle change. My husband and I are already planning on moving to a one floor house in about a year. Then there is travelling, we like to do it, but now, how can we do it differently. I’m thankful I have a supportive healthy spouse that is commited to helping me combat this disease. Still he has to travel a lot for work, so it’s up to me to learn to deal with this on my own also. Thanks for such a good site. I already feel better knowing I can come here for answers.
I’m sorry you have to go thru this Kitty. Hopefully, some days will be easier and you will still have oportunity to do those things like travel sometimes. It is harder, but you will make it.
I’m not supposed to feel the pain or fatigue. If I do I can lose my job. Lost one already, even though I requested to be taken off the travel team and given an inside job, even said the loss of some income would be okay. Still, they persisted I stay traveling four days a week. I had to quit.
I can’t quit a job any longer. I live alone (I’m not complaining – I love it!) and am responsible for my own bills. I garden for a few hours, take two Aleve, take a nap and sometimes can go back out to clean up the yard.
Oh, and as far as accommodations at the workplace – I lost the investigation. My doc was too busy to fill the reports in except for a scribble on a prescription pad – “Patient has RA”
I ask about the nodule on my left thumb. “It happens” is the response. And, here in Buffalo, there are only eight Rheumatologists. If your current doc don’t kill ya – the waiting list for a new one will :).
Marilyn — please find a more compassionate doctor who really wants to help you. I was blessed with finding a good one on my second try. If you know other people in your area who see rheumatologists, ask about their experience, but please, don’t accept being treated like that. I also hope you will consult with an attorney about the discrimination at work.
Hi Kelly—I am back looking for information on voice changes. My hoarsness has gotten worse, and difficulty swallowing food, snoring (I’m told)and shortness of breath are frequent enough to cause me to go searching for information. I came across this topic during that search and wanted to add my own thoughts..I asked my first rheumatologist after my first appointment: “Why don’t doctors tell you what to expect in the beginning? Why had my doctors tested me for all of these things and not told me they suspected Lupus, or MS,or RA??” and his answer was, “They knew it would get much worse”…end of
conversation. The result, for me, was to not ask any more questions, because I had run into so much anger in doctors who felt threatened when questioned about medications, or tests, or really much of anything. It just shut me up, which I suspect was the intended result.I would not advise this for anyone who is younger and just starting this journey…Your WEB is so supportive and helpful, and so badly needed as a source of informatin and healing, that I always turn to you to get a place to start each new search. Thanks again for all you are doing.
Wow! Kelly, you are so right. When I was first diagnosed with RA I just didn’tell anyone what was going on with me,I figured it was just my weird body or I was a whimp.I had to go lay down so often,it was just a way of life for me. My older brother who has never been sick told me to just exercise more. I told him matter of factly that he didn’t know what he was talking about.I can’t go out on errands for very long at all and I probably have to go lay down afterward if I do go out.My dear husband goes to the grocery store more often than I do.
As I was telling my boss about my RA, I fell asleep. I woke to her hand on my arm and her telling me that they couldn’t have that. Worked there for 16 years and never fell asleep before. Now I had an illness I was confused about, didn’t understand and little support at work. I did have a coworker who would wake me when I’d doze off and I always took coffee and apple juice to work with me. I had good days and bad days but if I was busy the days were better. I was afraid I would be fired if I fell asleep. I was always tired when I got home. On a side note, what are the flu symptoms some of you talk about?
Sharon,
the flu-like symptoms that can happen with the over-active immune system of RA would include fever, aches, tiredness & fatigue, swollen lymph glands – the same things you might experience with a flu virus.
Thanks Kelly for your reply. So far I don”t think I have had those symptoms but lots of pain and tiredness. I’m still learning what to expect. My biggest issue is the attack on my lungs and what will come next.
I think you’re right you have enough to worry about with your lung situation. RA symptoms can vary so don’t necc. expect to get every one of them – I’ll be praying for wisdom for your doctors in your care.
Hi Marilyn
I am also from Buffalo ..and I have RA as well..I dont know who you see here in Buffalo ..but I go to Buffalo Brain & Spine ..on International Dr in Williamsville .off Sheridan Dr
Anyway..I see Dr Ralph Argen ..he is my primary Rheumy Dr ..but I mostly see his PA Kelly McGranor ..and she is awesome & amazing and she “gets it”!! I love her ..very very compassionate ..understanding ..and she listens and is willing to try dif meds out if I have problems with others ..I pray she never leaves the Practice because I would be lost …Again a very good and caring PA !! I prefer her to the DR.!! lol hes a little more gruff ..good but gruff ??
Also Concerning this post about Usage …I also have this same problem ..but my biggest frustration ..is the people around me (loved ones ..co workers ..family ..and close friends…who completely know what Im going through ( by me explaining it ..or giving them lit) why is it that none of them ever ever ask me how I am doing ? they never call they never offer help ..they never ever ever EVER ..ask me what it is exactly that I go through ?? What it feels like to have RA ..what does the pain feel like and how bad is it ?? NEVER ??? does any one else experience this ?? It hurts so deeply ..I stopped talking about my RA years ago ..because I have said to them ” I am always in constant pain..everything I do do I do IN PAIN ..(because if they see me go somewhere or see me doing anything..they think Im cured ??) …They will never know how much it hurts me so deeply ..that they just dont seem to care ?? I did an RA walk last May ..NO ONE came to walk or help get extra donations ..I begged and pleaded… a couple family members gave a few dollars ..but really just gave online and then never asked me a thing about my walk ..sadly there were only about 100 people at the walk I did ..then a few weeks ago I did the Breast Cancer awareness walk for my sister in law (because my Mother in Law died to breast cancer ..there were thousands of people and all my in laws came and they raised 5,000 dollars ..I just dont get it ..I guess they just dont care about the living who suffer horrifically ..maybe they will care more after Im gone ?? Just wondering if anyone else has un caring loved ones like this who are completely silent to you about your RA ??
<3 Tracy
I know just how the author feels! I had to find out that most of my symptoms with RA were ‘normal’ and that they were actually connected to the RA from my lovely friend. It can be scary and it doesn’t help when you are told by your rheumatologist that a muscle spasm is no more painful than cramp!!! or when your doc ups one of your meds, which then makes you fall over in the street and then your rheumy tells you that was really dangerous and was why you kept falling…(and even more breathtaking when you find out rheumy n doc are husband n wife!!!)
Thanks for putting in writing the facts that only ra folks know. I wasn’t aware of the usage issue, only that repeativive use caused a flare. I was fortunate with my first rheumatologist in that he asked me all twenty questions but I was still in shock over the dx. Thanks for the post.
I can only read..and nod my head. I work full time and am always in pain of some kind. I get up extra early to help with the stiffness, sometimes soakingin a warm bath. The fatigue is bad, I get so mad when I come home from work and sit down, I am done for the day..or fall asleep.
Tho each day I wake up and thank God for a new day, the blue sky and the sunshine and hope it will be a good day 🙂
Hi Judy… people with RA are very adaptive, aren’t we? We can continue to work, travel, be parents and push through our day… even when our hands or bodies make it difficult to get dressed.
Even as my hands are now curled into tiny balls and barely resemble hands at all, I still type faster than most of my co-workers!
I wish you more good days than bad… KEEP UP THE FIGHT!!!
AMEN Joe!!
Hi Kelly.. Thank God for people like you that are willing to take the time, even when they are in pain themselves to help others..
I honestly do not know what I would do if it weren’t for you and the things that you post.. There are days that I feel crazy and then out of the blue I see a new post from you and it clarifies all the symptoms and the whys of it all..
THANK YOU SO MUCH FOR YOUR WONDERFUL HEART AND TIME YOU GIVE TO OTHERS.. YOU ARE TRULY A SPECIAL PERSON..
Thank YOU, Donna. That means a lot.
It’s so good to read the experiences of those who know exactly how I feel from day to day. My doctors ask a few question and say “Here, take these pills and we’ll see you in 3 months.” No insight, no ideas on what to expect or if what I’m experiencing is normal or not.
Early on, I complained to my Rheumatologist that I was losing strength in my hands and it was becoming very difficult for me to open something as simple as the film over a slice of cheese. Her response was “Yes, we all have problems with those things.” I wanted to say, “Well, up until a few short months ago, I didn’t have a problem with it at all. There were few things that I couldn’t open without assistance and rarely got frustrated trying.” I don’t know. Her response just frustrated me. I don’t know if she was trying to make me feel better or if she was just making light of something that was negatively affecting me, not only physically but emotionally. It’s not easy watching yourself slowly lose your independence and depending on your child(ren) or others to do very simple tasks for you because you simply can’t.
I hope that we can help them understand Donna, but I guess nothing would ever replace those who have been there and don’t need to be convinced.
I love reading your blog, it helps me to know some do understand. I have severe RA and Rheumatoid Lung disease that’s severity is rare. If you ever find any others with RA of Lung or find any information, I’d love to hear about it. Thank you for all you do
Diana, it’s actually not rare and there are several here with it. You can search lung on the blog to see a couple of posts it’s mentioned, but you’re right – we need to talk about it more.
I need to change from prednisone to a biological. Any suggestions?
I was recently diagnosed in June of this year. I will never forget it, I just got so hung up on it, that I was in a state of denial. When I had a bad flair up and my fingers hurt and swelled up, I was confused. When I went to my follow up, I was shocked to hear, “Well that is what RA does.” um hello? No one I know has this and at 32, raising 2 toddlers, I didn’t realize just what I have now… I thank you for your site! This has been so much harder to understand, and even harder to explain. I can’t believe it; I am determined to learn all I can about LIVING with RA and hope that I can help other suffers visit your site as you have so much knowledge and your experiences are like reading parts of my own journal (only better grammer, lol!)
I love your blogs they’re so relevant and true. No one told me about the fatigue or recovery time after overdoing it. I have been living with this disease for many years. I’ve was diagnosed only 2 1/2 years ago. When I look back and see all of the aches and pains I’ve had over the years. nog go mention fatigue I believe I’ve had it for years. Thank you and God bless.
What is it like to have RA? In the middle of the night, I wake up in the middle of the night and I have nails being pounded through my toes, my feet, my ankles and/or my hands. I try to be quiet, my husband needs his sleep (heart and lung problems), but eventually he wakes up anyway and “reads my body.” Don’t know how he does it, but he knows exactly where I’m hurting without my telling him. He knows if I’m hurting even when I’m asleep. He gets up and gets a pain pill and a glass of milk for me, then he lightly rubs the areas that are hurting worst, and then holds me while I cry until I go back to sleep.
That’s the way it goes. During the day the pain can be just as bad, but I have other things to divert me from the pain.
But there are other times, between flares, when I have almost no pain. Can’t predict when it will occur, either. Rain, shine, snow, sleet – could be bad, could be relatively comfortable.
I think one of the things that bothers me, is that the joints in my hands and feet don’t look bad – not like my mother’s did. Her hands were horribly deformed, as were her feet. Her knees looked like softballs in the middle of her skinny legs. We would bring her to our home for Thanksgiving or Christmas dinner, and she’d only be able to “cope” with the excitement and activity for a short period of time, then I’d have to take her back to the nursing home with a box of goodies that she never got to eat. I learned to prepare that box ahead of time and keep it in the refrigerator. She would eat the things in the box over the next 2 or 3 days.
My joints swell a little, then usually go down, leaving no trace of the pain I had. My kids have problems explaining it to their children, but eventually the grandchildren will grow up and, hopefully, understand.
Some mornings I wake up and I’m ready to take on the world like I used to. But it never lasts.
Just DRAT! I HATE this disease!
I am so grateful for this community and this platform to discuss what really happens in our bodies, in our minds, in our hearts. I get tired of trying to explain how I feel to well-meaning friends and loved ones. How do you feel? I feel crappy. Always. My remissions have become less and less “better”. They don’t want to hear it; I don’t want to say it; but there it is. There hasn’t been a day in recent memory when I jumped out of bed ready to face the day. “Good” is relative. I am 43 and feel like I’m 83. It is hard work to get up, get dressed & get on with living. I’ve got hope that my next medication step up may restore some of my strength and stamina. But in the mean time, I know I have a place to come where I don’t have to grit my teeth and say, “No, really, I’m fine.” Thank you for all of your comments, articles, posts and advise. It’s so good to remember that other people really do understand.
My doctor insists that the pain from my RA is only in my hands and feet. The pain in my other joints and all over my body is NOT from my RA. She says the stabbing pain I experience is NOT RA. My daughter heard her say this so she doesn’t believe I should feel as bad as I do. Please help me know what to say! Reading about others experience helps. Thank you.
It the stabbing pain is not RA, what does your doctor think it might be? As for what to say, I have a 12 year old dog who gets around quite well for a creature that old. I know he has good and not so good days (kinda like me!). To those who are not around him all the time, they think he is doing great when he is not that well. My point is my dog does not “look” old, or like he feels bad. Maybe the question is what does pain really look like? Hmmmmm.
good question Fran. Good analogy. My dog was nearly 19 and no one got it – because we cleaned him up nicely for people. https://www.rawarrior.com/rheumatoid-arthritis-warriors-dog/
It’s hard to think of something polite to say about that doctor’s comments, Nancy. No matter what evidence you provide, it would probably be impossible for you to change his views if that’s what he thinks of RA. It’s not likely you can overcome his poor training.
Your daughter on the other hand could probably benefit from reading others’ stories and comments on this site & I hope she will. When you think she’s receptive, you could email some to her.
I just wanted to say that had I known in the beginning that the pain moves from one place to another, I may not have been in such mental pain, never knowing what was going on or if in fact I was making it up. Your article is terrific and hopefully it will help many others just beginning this nightmare. Thanks to your great work Kelly.
Donna
There is something else That I wanted to add here and that is I have begun water aquatics exercise 5 days a week now and while I am in the water I feel fantastic and can do all the excercises after 3 months of it.. Mind you, there are days I leave the pool and am so tired and exhausted that I go home and sleep all afternoon, and there are some days that I go home feeling great, only to have severe pain at night..
I know that I could be damaging my joints more, but the excitement I feel just to be able to have something to look forward to is worth it to me.. And since my feet are in so much pain all the time that it has almost taken away walking for me and you don’t feel that in the pool.
I sure would appreciate any thought on this matter as to whether I am doing more damage to myself or not..My Rhuemy has said that I shouldn’t be going into cold water, but I have continued..
Thanks Donna
Hi Donna. I think it would be impossible to know for sure, but I’d sure take your side about holding onto any bit of life I possibly can! There are benefits to your spirit as you mentioned, and to your cardiovascular system, obviously. So, the rule of thumb I’ve often said for exercise is — If you can, do. If you can’t, don’t.
As for joints, everything I’ve read seems to make it clear is to not good to force a flaring inflamed joint. Only you could know when you got to the pool if your joints are too inflamed to move or not. Good luck with it. And yes, a warm pool would be better if you can find one (they are harder to find).
I am sitting here viewing all the facts on this website. I am just being referred to a Rheumatologist in having drags, ANA, rheumatoid factor, ESR, uric acid test this week. Things are beginning to “gel” mentally for me.
I have found that people don’t understand don’t understand the difference between having Osteo Arthritis, and RA. I have both. I don’t tell many people because they tend to think if you take some Tylenol, you’ll be OK. The fatigue I feel is so discouraging. I have Diabetes too, so my energy levels are not good most days. I love it when I have a good day! People just don’t understand why you don’t feel like doing the things you once did, and look at you like you’re lazy, sometimes. They say things like” Well, you LOOK like you feel good! Just because I fixed my hair, put on make-up, and have a smile on my face doesn’t mean that I feel that good. I feel guilty because I can’t do what I once did, but I have to remind myself that I can’t help how I feel, and just do what I can.
Thank you for your comment on your “usage principle”! I used to think it was just me and that I was just lazy or too self-indulgent when it would take me several days to bounce back after some seemingly inoccuous activity that I used to be able to do without thinking about it a few years ago, like raking leaves, planting the garden, mowing or painting. I couldn’t understand why I was so tired. My mom and grandma had RA, so I’m quite familiar with it, but thought I had a few more years to go before having these problems. Surely I was too young! I’d gone to doctors before but they would poke and prod, give me some muscle relaxers and send my on my merry way with admonitions to get to the gym and work out. Not until I went in and demanded a sediment test did I get the answer I didn’t want. And now they all tell me I’m “too young” for all this…the RA, the Sjogrens, the osteo arthritis, the vetebrae fusing, bone spurs, scoliosis. . I’ve even had a hip replacement…in my mid 40’s. As if the diseases care how old anyone is! It’s worse because there are no visible signs except a slight limp so of course I must be lazy, faking or milking my hip surgery. I go to work every day and try not to complain because nobody wants to hear it. It hurts to type. It hurts to sit at my desk, it hurts to talk on the phone. Some days it’s just too much and I stay home. No vacation days to do something crazy like oh…vacation or something. Nope those are my days for when I can’t move. I refuse to let it stop me though.
What do I think… Well I think that it is a sigh of relief to hear someone describe how I feel, the loneliness of not having anyone REALLY get it, till I read your blog. I am in one of the Worst Flairs that I have EVER experienced, I have suffered from this crud for most of my life, I am 49 yrs young & all I have ever known was the life of being Ill. It’s rough, but like you said… I pray a lot. God Bless You & Thank You For Opening Up About Your Daily Battle with Pain. I Understand Completely
My doctor told me I’d be fine in 3 months. The more I’ve learned, the more utterly shocked I am that she would say such a thing.
I come from a family where it was always said, that people who talked about their aches and pains were boring. I pretty much keep to myself in that dept. RA is difficult, because many times your pain is invisible to others, therefore, others take for granted you are feeling fine. I had a close friend, who knows of my disease, say to me, maybe you were misdiagnosed and that I probably picked up a bug on one of my travels. “Maybe, you should get tested again.” Geez.
If you’re not happy with your doctor, find another….another. It took me years to find doctors that listened to me. When questions arise and you can’t find answers here, write it down and asked your doctor on your next visit. This helps me.
I lap swim when I feel up to it and relax if I’m feeling drained or in too much pain.
I work fulltime, but for those of you who don’t/can’t have that luxury, do get up, shower and dress comfortably. Try to get out daily even for a short outing. Get a cat.
Kelly, this site is a wonderful place where we can come vent, learn or give/find words of encouragement.
I welcome all of you as my newfound friends.
Oh, I forgot to mention about the burning…someone asked if this was an RA symptom. My first symptoms of RA were that of burning sensations running up both arms. It got to where I had difficulty pushing myself up and out of bed in the morning. Eventually, not being able to. The doctor prescribed pain meds, which did nothing and then he ordered the blood work.
So, absolutely yes, burning is one of the symptoms of RA.
I would just like to add I tend to keep myself in sheer isolation aside from my husband, two dogs Levi and Daisy and our four beautiful kittens Mya, Larry, Deucey Deuce and Stuart.
At times, I feel awesome for weeks at a time almost normal. …then, there are THOSE times, when I cannot make it through the day, cannot make it to the next task, and/or cannot get out of bad at all.
A friend understands one or two unreturned messages, and after three or four more months pass and you have not been in contact, basically they assume you are not interested. When in fact you are so focused on feeling better you are unavailable for anything else. I just dont have the energy now, and when I feel better, I just want to move forward.
Its hard to find someone to talk to that isn’t giving what seems like a false sense of caring. Even on the rheumatoid talk sites. A lot of the time what you hear after really bearing the problems is a blank statement like gentle hugs.
Every time I tell my Dr about different worsening symptoms with my pain, he makes excuses, “o, it’s probably just the weather,” is the most common, or they just ignore me and continue typing, it’s getting to the point that I can’t walk around the store or clean the house anymore,how can i get them to take me seriously?
Could you find people nearby who see various rheumatologists and ask them how they are treated? I eventually got lucky enough to find someone in my street who was seeing a rheumatologist who was willing to treat aggressively based on symptoms, not in test results. A long visit to a general doctor durino which I explained in detail ( written list) what I could NOT do daily routine. Think of everything that is affected and state specifics: eg: I cannot turn a door handle, turn, hold a tea cup, etc. say things like: 1 year ago I could stand and walk for two hours without pain, but now I can’t do the shopping. I fall asleep just walking past the bedroom! I am never not stiff, I am never not in pain and so on. I put up with years of being fobbed off and the more you let that happen, the less you are able to stand up for yourself and seek treatment and continually pour energy into adapting and managing. It’s a project allbon it’s own!