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The nodules are funny, my kids call them “buttons”, its an adventure because you never know where or when they’ll pop up!
The joint crunchiness is pretty entertaining too when I’m told to, “limp like the wind” by my kids!
Humor truly helps!
“limp like the wind”
Hah! that’s hilarious. I love it.
It’s funny, I can now sort of race my 6 y.o. daughter in the park – as long as one foot is always on the ground. I’m sure innocent bystanders are thinking “isn’t it nice that he lets his daughter win” or “isn’t is nice the way he does a funny walk to amuse his daughter”
umm… yes. that’s it. I’m being nice 🙂
One of my personal favorites…. hives/rashes around the eyes — still haven’t figured out WHY on that one though.
I have that too. A dermatologist told me it looks like peri-oral dermatitis, which can either surround the eyes or the mouth or both and may spread. If it’s bad, I use the elidel and that quiets it. But, I’m still not sure… 😛
Thanks for the tip on the elidel. I am definitely going to ask my Dr. about that next time I see him! :rainbow:
Mine just shakes her head every time and says, this is “autoimmune.”
I love “limp like the wind!” that makes my day! (and I do that too). Trying to baste myself in lotion is my exersize program! For a little while, I tried to cover the dark circles under my eyes, but that’s getting to be too much. It does help when I do it.
I suspect that the RA shows in my expression, because the pain/fatigue/concentration on what I am trying to do or just trying to tolerate is always there.
I carry as little as possible. If you are beside me, I’ll probably say, “carry this please?”
I think I’ve aged a lot in the last 6 yrs.
Oh that is so true: Can you carry this? :chic:
Yes, aging seems to have sped up for me too. 😕
Lotion has been a great loss: it hurts my hands too much usually to be able to stand to do it. Had dry skin all my life, so I always was a lotion-holic…
Swollen and puffy bags under the eyes–left over from use of prednisone and constant fatigue, I guess. Yuck.
Yep. Good old baggy eyes.
I was told by my CEO recently that I needed to give up on the drinking, because my eyes always looked terrible.
Funny that – I haven’t been able to drink for nearly two years now because of the drugs and liver problems.
The impossible to get rid of bags under the eyes from fatigue. Oh those drive me crazy.
certainly I smile less in the morning which is a bugger because i am a morning person!
My hair looks like crap most days because I am to tired to wake up in the morning and oversleep.
I was a cheery morning person too…..I’ve lost that. I drag around for a while looking pretty bad. I really miss morning cheer
Holy moly!! I am sooo glad to hear that someone else is dealing with dermatitis!! WOO HOO I AM NOT CRAZY!! it comes and goes, kind of like ra flares.
And I love “limp like the wind”!!
The worst part about the dermatitis is that the dermatologist blamed it on everything BUT RA. I switched soaps, stopped using my favorite perfumes, started washing everything in Tide Free and it still didn’t go away. I really thought I was losing my mind there for a while LOL. At least the dermatitis goes through quiet spells! :rainbow:
Ya’ll forgot the “frozen smile” you seem to get after someone asks “how are you” and you say “fine” between your teeth.
Also appears when people say gems like “you should take glucosamine”
;oD
Thank you for the laugh Kay. :chic:
I will smile next time this happens to me. I will laugh inside as I think of what you said. :chic:
Dark circles under the eyes are a big one. I can be all made up and feeling decent and I look in the mirror and see those and realize how much RA is really affecting me. And the way I walk has completely changed. Oh, and you forgot sweat stains on the clothes from the Prednisone hot flashes. Blech! :sweat:
No more carrying a purse. It hurts the shoulder or hands. Velcro shoes because I can’t tie shoe laces. Splints on wrists. Wheelchair, cane, crutch, etc. Bag full of meds. when you go on trips of any length. Tooth loss or decay because of lack of oral care. That’s all I can think of right now.
HELLO. /Whips Internet Head around… I thought I was the only one loosing teeth. Thank you for unhumiliating me. Most people think it’s because I don’t practice good enough oral hygiene. Which I am sure is to some degree true, is not entirely my fault. Brushing is not always easy even with an electric tooth brush, and flossing is entirely out of the question. There are days that I can’t seem to get my jaw open far enough to get my tooth brush in. The fact that I can’t afford to go to the dentist even with insurance isn’t helping things either. So as they have loosened or become infected I have had to.. Um.. grin and bare it? Pull them myself, and hope when the last of them are gone that I can finally get a plate to replace them. So this once talkative, out going person, rarely speaks anymore, and when she does she covers her mouth with her hand, I’ve learned to if smile at all, do so with out showing my teeth.
oh no did you really pull a tooth yourself! :O Poor you! :heart:
I hope you can get a partial to replace them someday. I agree, smiling with no teeth showing is better than no smile I suppose 😀
I hate when I read stuff about RA, and gingivitis is listed as a “symptom” as if it’s some random issue. I want to scream “You idiots! Gingivitis isn’t a symptom of RA. It’s just that we can’t brush or floss because of pain and stiffness!” It feels like part of the attempt to down-play our suffering, as if the world must not know that RA is bad enough that we can’t hold a tooth brush.
Yes Rainydaze I know that feeling too, tooth loss has been one of the worst things socially. Always feeling blame because you haven’t looked after your teeth etc then you find out you have had sjogren’s syndrome for years and told how common it is just use eye drops, mouth rinse and nasal spray grr a bit late now thanks doc.
I shuffle my feet more now, as if I was 80 years old, I have this faint feeling in the back of my mind, that with my hip clicking on my left side, my knee clicking on my right side, if I walk just the right way, I will take a tumble, RA makes me feel like I could crack and break with just the smallest of movement…….so I shuffle on my way~!
I also get more cavities because my teeth chip thanks to the prednisone sucking the calcium away. Also I apparently sometimes clench my teeth in the night from pain and have cracked several teeth from that.
What a mess!
Yes, the weight does fall off from using the pred- most of it will come out in water weight gain, that puffy look is from retaining water and you will go down to what you were before once the pred is no longer needed, one thing I was told was to drink a lot of water with a wedge of lemon in it, pulls the extra water out of you, good luck hun
Can someone please give me some hope that I’ll lose the weight that I put on due to prednisone. I think I hate the weight gain more than anything I’ve lost almost an entire wardrobe.
I put on about 10 kgs (I think that’s 22 pounds..) from the prednisone. Might not sound like much, but until I was 35 I was only 60 kg (132 pounds)
since going on Humira and MTX, I’ve managed to get down to 5 or 6 mg prednisone a day. Once I got below 10mg, I noticed the weight start coming off – about 7kg (15 pounds)
I’m still quite round in the middle, but it is coming off.
Hope you get some success.
Always being told I “look” tired. Well thank you very much I really need to hear that every day. I AM TIRED! LOL Dark circles, stressed look on face from pain. I just look like I have aged in the past few months from all of this. I am glad to hear someone else say they have trouble carrying their purse. I noticed that recently that having it on my shoulder hurts. Jeez even my bra straps cause pain from resting on my shoulders sometimes, had to loosen them. Now my boobs will probably will start dropping to my waist.
I am beginning to think the dark circles are permanent! I am always tired. I just can’t get enough rest. I just found this site and I love it. There seems to be so many supportive people. Wee all need support and can one day hopefully help support some one else. Thanks for being here. Denise
i stay pretty pale because of the methotrexate. ever since i’ve been on it i’ve burnt very badly. however, i’ve learned how to use fake tanners properly (as to not look orange or streaky, what most people associate fake tans with) so i can still be tan in the summer. 🙂
This simple exercise really brings home the impact that RA has had on your life. Thanks for sharing this and inspiring me to create a list of my own. 🙂
Not RA but TMJD Headaches: premetured aged skin from meds, glasses from meds, cracked enamel and facets all over my front teeth. Along with that look in your eyes oh why cant I just go back to bed.
Thanks Kathy. You know that “look in your eyes…”? I never thought of adding that to a list, but Kay also mentioned another “look” in comment #10 above. I guess that shows that chronic illness can have other effects too that show up on our faces eventually. :-/
Yep know it all too well!! Dark circle under eyes, what seems as “rapidly” aging skin, weight gain is enough to make you depressed!!! The “comfortable” clothing–all elastic waist pants and shirts, even if they button, big enough to just slip over your head. Shoes, that’s another whole different ball park, I can’t even wear Reebok or Nike anymore. I wear an arthritic “sneaker”. They are Brooks. Now even they bother me, had to get inserts from Podiatrist. Still can’t wear them all day. Have to put my slippers on. Fatigue is something that just lingers, it never goes away. Sometimes its so bad, you just want to sit and not move–but then you have the problem if you don’t move every so often, you want to cry when you do. Hands and wrists are swollen, deformity settling in where joints in fingers and knuckles use to be. I basically feel like I am becoming a hermit. Don’t want to go anywhere or do anything, it’s just too much of an effort. Well I rambled on long enough. Thats my story! Which basically sounds pretty much like the others! Snow and cold don’t help matters much either……….
No bags under my eyes just some very expensive luggage 😎 ! I still haven’t lost all the weight from 2yrs. on prednisone, not sure I even care anymore-my dog is the only one in my bed and she just snuggles up for warmth. I too love the “limp like the wind”! I’ve just recently began having bad pain in groin from hips and knees hurting and all that limping-at least that’s what pain doc says. I love that every time I brush/wash my hair (LOL) it comes out a bit more. Why pay for a haircut when I can just stay on Arava a few more years and just buy a wig :rotfl: ! 49 and I’ve just had cataract surgery from too much prednisone. I’m losing my voice more and more one of the asst. Pastor’s at Church last night commented on it. Anyone know of a cave I can move into-NO MIRRORS,NO SHOWERS (they’re too much work and need nap after so why bother),JUST A GREAT BIG FRIDGE/FREEZER filled w/PEPSI AND ICE CREAM (it’s a cave who’s gonna see me), NO MORE POISIN! OKAY rant over thx for listening everybody. I Love All of You! God Bless!
Everyone wants you to be their for them, and lissen to their problems. But no one hears you. I know this because of the guestions they ask over and over.Does your back hurt – why? dont you feel good-why? and on and on.
Hi Dianne, I know how you feel. I feel like no one hears me that I cannot go this or that & then I’m still expected to do it. Same, “oh really, why not?” 😕
The bruises from prednisone and lab draws. Every nurse in the unit I work in zones in on that with their laser eyes! Who poked you like that? They ask. And of course the tired look from not sleeping enough or just being exhausted by trying to be a mom and work shift work.
Oh, Lord…all of this hits home.
I cut all of my hair off because it’s easier to deal with. I mean short. Also the shoe thing. I mostly wear crocs because while not the most fashionable are really easy on my feet. I don’t think I’ll ever be wearing heels again.
Pantyhose have been banned. During the winter I can sometimes manage tights, but with my hands it’s not easy.
I was already graying but my hair is now pretty much naturally gray\white due to the Plaquenil.
And clothes. They have to be comfortable first and foremost. I wear a lot of cotton because it’s soft.
I hear you Mary. 😛 Me too w/ cotton. I shop by touching fabrics to see how soft. I can’t see very well anyway any more. LOL. So shop by touch.
Thanks for the repost. I get so depressed when I look in the mirror and see all the changes that have happened to me since I started all these meds. It was both good and bad to read the list. Good because I thought I was a “lone ranger” -Bad because so many of us are dealing with these changes-I had not idea all these changes were due to the awful meds that I have to take to “feel good”. I just can’t thank you enough, Kelly, for working so hard to keep informed.
Thanks, Kristi. I’ll say it’s good to know we aren’t alone, isn’t it?
Both my elbows are different lengths(badly bowed) so in my case, when I eat French Fries I grab them with my right hand/arm (which is longer and less deformed) and with the left hand/arm (I can bend but not reach out)put the fries in my mouth lol
or eating an apple…first I HAVE to take little bites @ first because I cant open my mouth wide. Then when I get to the inside of the apple it gets easier.
I just hate being patient when eating especially when you are starving and have to take your time so you wont hurt yourself…c’mon seriously?!?! :o/
Alicia, I agree. It’s funny, but eek! 😮 The french fries sound like assembly line.
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I see a lot of the same things that you all do, just not as bad yet (newly diagnosed). And you may not be able to see this change in me but I can sure tell…..the lack of showers. Most days it just hurts too much and when I finally get a day where I think it won’t be too bad I already feel disgusting and probably stink to high heaven. I’m thinking it’s almost time for one of the shower chairs *sigh*. I’m only 39 and I feel so old! False teeth, need bifocals, use a cane, and now a shower chair. *bigger sigh* yay for RA (sarcasm)
This is so true. Shower has been a problem many times. And my dirty hair. 😛 Really want to floss my teeth properly again someday…
I can’t use a regular purse anymore- I have a small backpack instead because it works better with my cane. I need to switch the cane from side to side when my hands get sore, so a purse over the shoulder just gets in the way. I also use a rolling backpack for school, as I can’t carry heavy bags anymore.
I did “pimp” my cane with stickers because it was a very boring black color. My husband thinks it’s crazy but knows enough not to say anything about it.
Hi Sally, My kids carry my purse. I can’t use a cane, but I’d love to see yours w/ stickers! I have a friend who has ribbons and bows for every season & a hollow one filled w/ cool things. LOl 😉
For me, the moon face from pred is just the worst! In photos you can hide weight gain in every place BUT the face. So all my new mum photos I just don’t look myself. Add that to the constant frowning – not cool.. But i’d be happy and get over it IF it came with remission. We all know that’s not going to happen!
Ed, the photo I saw, you look beautiful. The constant frowning is a sore spot. I think I hide my pain by not mentioning it. Then I see all the photos w/ the deep frown line. I stand at the mirror & try to rub it flat. No go. Then I wonder if you can get botox w/ RA meds??
Yes, Kelly it is good to know we aren’t alone.
I can so relate to wanting someone to wash my hair!!
You’ll notice the ponytail and baseball cap in my pictures—-HA!
Love you all!
yes, I saw those. Pony tail today here to dear. 😉
As I am a blonde the hair on my legs was not ever very bad but I miss shaving my legs (Dear Lord I NEVER thought I would say THAT) I rarely ever shave them anymore…………….I also miss pedicures. My fingers and fingernails were always ugly stubby things so I didn’t do manicures very often but Pedicures I miss – can’t afford to have them done and can’t do them myself anymore……………………
I miss doing different things with my hair it was long all my life and I got a bob just before RA – couldn’t keep it short because for my fine thin hair I had to do too much to it. At least when it is long the old ponytail is a saver!!
Those are the vanity things I miss – I miss also a LOT of the practical things I can’t do anymore – just day to day living – I was a house work queen for years – now my house is a mess always – and I finally just don’t care…….
I also sketched ALL the time, used charcoals and pastels and I can’t hold the pencil very often or for very long – so this hobby is pretty much gone – and painting?? Not now. No knitting, or crocheting, or quilting………………maybe the list of what we CAN do would be much shorter………
Lol, Pamela. Today that one is very short. Let’s hope for better days for us. :heart:
PS: I’d love to see some of your sketches sometime!
I miss the energy I used to have, to keep my house cleaned up, laundry done, etc.
I hear you Pam. I actually want to dust! Been too long since things were shiny.
Kelly you just describe ME… lol i am everyone in the list.I am so sick of this disease.
– can’t wear shorts, skirts, or short dresses when you have RA knee joint/s (contractures)
– have to wear finger resting splint
I can’t believe as I read each of your posts, how they have described me to a “T”. Every symptom you have, I have. Unbelievable. I thought I was the only one with all these problems. I think what bothers me the most,(and I know it shouldn’t)is when you tell someone you have RA, they automatically think “wear & tear” and “oh, I have that”. Well they don’t “HAVE THAT”. If they did they would understand. But I am like so many of you, I don’t want to go out of my house, just stay here and sit on my enlarging rear end and watch the spiders decorate for Halloween.
Totally Love the spider joke. 😀
I agree. When people ask how I’m doing, I mostly just say okay. If I say how I am really feeling, I get tired of some of the responses, like: you look okay, just take your medicine, I have that too. Lately, I don’t want to get out or even dresse, have to really force myself.
Hello all,
Hope I’m not posting in the wrong place ~shrugging~ I have had RA going on 8 years. When it was first discovered, I made life changing inprovements. Like working out and eating better which resulted in me losing 100#. I needed to do that and worked really hard to get into shape. But now……. am thinking about cosmetic surgery to get rid of excess skin and am looking at breast implants. I have had a consultation for my breasts. He said I will have to come off of the naproxen for 4 days before the precedure. I am kinda worried about that, as this has helped me since day 1. I was just recently put on MTX and folic acid.(3 weeks ago) Tummy feels AWFUL!!! and I also take plaquenil. Which I have been on since day 1.
I talked with my Rheum. about it and he didn’t say a whole lot.
I was just wondering if anyone has elected to have this type of surgery. Am I just asking for more trouble??
I just feel like I owe it to myself after all the hard work I’ve done to get where I am.
Any advise will help.
Alice I feel like sometimes also, put me into a cave, lol, I can relate to everyone. I will smile when someone with well intentions advives to try something like vinegar. The only way they will understand is when they get RA
I thought it was my imagination that my hair was getting thinner – it’s always been very thick. After reading this blog I know that it is falling out. My face is pale and round because of the prednisone but before the prednisone 2 months ago it just look drawn and ill. This stuff sucks.
The look of tiredness in the morning due to unsatisfactory sleep
Am I odd? I find myself often looking at my hands waiting for them to start getting ugly. And I am thinking — someone ought to make clothes that are comfortable and stylish. It has been so hard for me to find things to wear that don’t look like I’m wearing my teenage son’s t-shirts. Before I realized the RA thing, I didn’t understand why my clothes hurt so much. Is this normal? I don’t wear tight clothes but there are days I can’t stand feeling them on me, especially my torso area. I remember one Sunday I cried because wearing a bra hurt so much. I couldn’t go without it. So I was in pain from a stupid bra all through church. Sorry for the complaining.
I don’t think it’s unusual, Jane. Cruel, but not uncommon RA effect. When I shop for clothing now, I shop by feeling: Is it very soft? Then I try it on: Does it pull on me anywhere? I’ve given a lot of things away to my daughter because they don’t “feel good” to wear.
They say that the eyes are a window to the soul. I see a difference in mine, in my expressions, and I’ve seen it in the eyes of many RAers. I think it’s the aftermath from the knowledge of the level of pain that RA can bring. I look at ‘before’ pictures and I look…well clueless. Hope this made sense.
Frown lines from wincing in pain
Things I would add or change for me:
1. Loss of height due to Predinsone use.
2. Ridgey and brittle fingernails.
3. Dry skin and hairloss due to secondary disorders.
I could go on…u
@ Jane, try this bra as it is very comfortable. I have bra issues too. Bra maker is Cabernet, style number 10959.
I too have skin rashes that always herald a flare. I have asked my doctor about it for a couple of years. He couldn’t tell it was there and didn’t really think it was an issue. It is pretty itchy for me. Now that I am taking Enbrel, I am better.
For folks who are having trouble with washing hair and putting on lotion or holding things, check out these tools. My hand surgeon has their catalog. Company website http://www.ncmedical.com North Coast Medical.
Brandi, Thank you. I shall look into that bra.
The thinning hair is a big one, and, for those of us with Sjogrens, there is constant irritated, blood-shot eyes (from dryness, and horrible dry mouth which leads to chronic halitosis that causes me extreme anxiety and self-consciousness. Ugh. I feel like I’ve aged 10 years in the past 1 year.
I totally love the “limp like the wind” comment – too funny!! The weight gain from all the meds has been hard to deal with. Especially when you can’t exercise to get rid of it. My wonderful husband mentioned this morning that he really likes his Gauguin shaped wife these days – love that silly man!! He calls me “Festus” when the limping gets really bad:) I’ve had a shower chair for several years and it helps a lot. And don’t get me started on how hard it is to deal with washing and drying my hair. I’ve always had enough hair for 3 people so I don’t worry as much about the hair loss but I can’t let it get too long because of my severe neck issues – too much weight.
Kelly thanks for this blog – it really helps feeling like I’m not the only one wondering who is in the mirror these days.
I got so old looking, and my eyes are so tired looking all the time, also when my kids say you can not be in pain all the time. and why are you going to bed, I have 2 rest every day. When i look in the mirror i see a different person not me. as i was also my hair is gone so thin. I do not look in the mirror any more maked me deppressed.
My kids are the funny ones and my 17 year old calls me rino cankles because on bad days I have no definition of my ankles. However, I refer to my walk as the RA shuffle but my boys call it the RA waddle. Oh the thick hair I use to have!! I have just decided to ignore my hair loss and when it gets to thin my hair dresser just says “it’s time for a new style” as she cuts it all off. I find it comforting that there is no discussion about the hair loss…….I just leave knowing what ever has been done will make it easier on me emotionally and first thing in the morning. When I look in the mirror it saddens me to see that I look tens years older than I really am!!