hardest things to do with RA

By Sue Tuesday, July 22, 2008

- A
- A
- A

Hello everyone.

I was wondering what part of RA makes it very hard to do everyday things?

I wanted to see how many have to deal with some of the things I have to deal with..

My bigest thing is my hands.. My fingers and the fact that my hands and fingers are no longer strong enough to do things like.. Dishes.. Not just the washing of them, because I have a hard time holding them, and really giving them a good scrub. Unloading the dish washer. It kills my fingers to grab the plates and put them away. It hurts my back to bend and lift as well. Getting dressed.. buttons are hard to do. It hurts.. Pulling off a wet bathing suite hurts, and it is so hard to do. Taking off a wet T shirt I can not do at all.

Typing.. This I have a hard time making my finger reach the right keys. Forget about moving them fast!

Doing the wash.. Pulling the wash out and putting it into the dryer. The puling with your fingers is so painful. Carrying the wash basket up and down steps. Folding the wash is also painful and I get to the point where i give up. Grabing anything to hard that send pain through your fingers that all you can do is cry.. I feel my hands and fingers make it very hard for me. Pealing potatos, is hard to do and painful. Yes my hips and feet make it hard to walk. but I feel I use my hands for everything and it makes it the worse thing about my RA. Going to the bathroom is fun too. pulling up and down and getting up is painful.

If I have to get on the floor for any reason I can not get back up. I can not get on my knees the pain is unreal.. and forget pulling myself up.. I would be the person saying Help I have fallen and can not get up! So I do not get on the floor, if it falls on the floor, and I can not just bend to pick it up, on the floor is where it stays..

What do you find to be the hardest thing for you to do with RA?

Sue

I went to my RA doctor today!

Comments (17) | Add comment

Lene Andersen, Health Guide

7/22/08 1:04pm

I have a lot of trouble with my hands and arms, as well. The pain when you do things, the lack of strength. I'm also very frustrated by how everything takes so long to do - double (at least) of "normal" people. And double the energy. My place is a mess and it hurts too much to clean it up - I try to do at least one or two things a day, but while I'm doing that, the mess grows at a faster rate (I swear it procreates in the dark!). It drives me crazy. Inside me, there's an organized and efficient person who thrives on getting a lot done and every day, she screams with frustration.

Have you been referred to an occupational therapist? There are a lot of doodads that can help make things easier, like jar openers, dressing sticks, sock pull-ups (I forget the technical name), etc.

Sue

7/22/08 1:34pm

I went and will return to a physical therapy as soon as I can. He worked on things like my fingers to keep them moving so they do not get stiff. My left shoulder was unable to move very well. You know when you move your arms like you were going to do a jumping jack over your head? Well I could not lift my left arm over my head. Now I can thanks to physical therapy. I am not ready for tools. I have a book on tools out there to help you, but I can not put my brain around having to use them. I know that sounds silly, but I am not there yet. Yes it does take longer to do anything. I hate to wait for anyone to do things for me, so I hurt myself doing it myself. This is somthing I need to stop and get over. I am very tired all the time. As for house work I do very little everyday. Normaly I have my daughter do things like unload the dishwasher, do the dishes after dinner.This week she is away. I cook on the gril cause I can sit and cook, but who ever is around carries things in and out of the house.

I use to vac, and mop the floors everyday.. Now it is once a week as I can do it. I make sure everyone cleans up after themselves. Since my kids are older they have to do there own wash and keep there rooms clean. I wipe over the two bathrooms but not on the same day. I can not get down to do the tub or toilet. So my daughter does that.

I hate how I can not walk like "normal" people. I can not keep up with my family when we do walk together. I triy to have some kind of plan for the day. Even if it is a little plan, like picking up a little, or going into the pool... I do not walk with my Husband with the dogs. I can not do this anymore. The heat and my feet, knees, and hips kills me and I fall into the door. Then I am shot for the day. The pool is better for me.

This RA has changed my life. I understand now what my Doctors mean when they say your life is going to change. I hate the pain of RA.. I am no longer on the ball and getting things done.. So I know just how you feel..

AmyAria

7/22/08 8:35pm

The inability to slice a potato is what finally drove me to the doc. Shot the sucker off the cutting board a few times and finally decided maybe this wasn't "normal". HA! A couple referrals later and... *sigh* here I am! Most of my issues were early morning issues. Noticed it most trying to lift the milk jug out of the fridge. Finally had to have my hubby pour the kids milk in their cereal bowls. It kept getting worse and lasted longer. Eventually had to have someone else cut my food too and forget about opening jars.

But NOW with meds and taking better care of myself....life is fairly good! Still have some morning stiffness and night achiness but nothing like before. Thing I struggle with most is fatigue...and that really annoys the ba-jeezes out of me. Like Lene, I am by nature a very organized, get-things-done kind of person. I used to whine about having to "do it all", but now I've been found out! I really kind of liked it, and now it's out of my creaky hands. Can't do it all, and am learning my limits. It's hard sometimes, cuz I'm stubborn as a mule! Being a "do-er" is big part of my self image, ya know?

Sue

7/22/08 8:53pm

you give me hope :) I am sitting here in so much pain I am crying. this pain is so bad! I feel like me knees are on fire, my legs are killing me and when I got up the pain shot through my hips I cried out. I just snaped at my son when I said I am having a bad night, and he said why is that, BECAUSE I AM IN PAIN! No I do not mean to snap but I feel like screaming because of this pain! When I go on Thru to the RA doc I am going to say give me a shot hook me up shout me in the head just take away this pain before I go nuts! I guess al the swimning and making cookies did more then I thought. I pushed myself I know but I do not want to give up or give in!

So with the right meds and you are out of pain? Oho how hopeful I am for the day of NO pain! I have ben in this pain since Dec 07! I would pull my hair out of my head but my hands are killing me! Why is it worse at night? I get up in pain.. two hours later feel better and do a few things.. night time comes and the pain is so bad I want to scream!

I am so tired but have a hard time sleeping even with a pill. Of course I have hot flashes cause I am going through the change! I feel like my bones are on fire...

Please tell me it is going to get better with meds??? how long have you been better?

When this first started for me I could not get off the sofa, I thought I was dieing.

I am sorry for venting I am in so much pain and when is it going to stop? I give up.. I give in.. I will take shots or IV's anything to make this pain stop...

bucky badger

7/22/08 9:17pm

I am much like you my pain comes and goes. I mowed my Mother in Laws Lawn tonight and I am sore all over tonight. Funny with the potato I cut my finger really deep a few months ago because I was trying to hold on to it and my hands were not cooperating.

My meds for the most part control my morning stiffness but I still get night aches that drive me crazy. I try and do everything myself but it seems like I really run out of gas towards the end of the day. I normally work 11 + hours a day and I get home and I feel wore out. I really get fatigued and sometimes I will fall asleep if I sit down and watch TV. When I am hurting I find myself "holding down the chair" and not getting stuff around the house done. It makes me feel bad to see my wife doing most of the house work or taking care of the boys by herself. I still try and help out where I can but I know my wife is struggling to keep up with everything. I try and do more when I am feeling well to give her a break. I agree it is really hard to find your limits and your happy medium will be with this disease.

Sue

7/22/08 9:36pm

oho my I cut my fingers almost off as well! I slipped down the blade of a very sharp knife and cut into my pinky to the point now where I can not bend it. Nor will I ever be able to bend it. So my kids call my DR Evil cause i always have this pinky out! LOLOL oho my! I been there done that with cutting the grass. I tried and then when my husbant saw me he ran out and said STOP! Well I could not walk into the house. My walking is very much affected by this. I call it the big bird walk.. The thing that bothers me is that I am not better! I have been on this drug since April and I still walk the same, I have all this pain, and it is really getting to me. Like today here is what I did.

I got up... made myself eat so I could take my pills. I made a few cookies sitting down at the table.. I had to unload the dish washer.. My husbent had carried down wash for me and put it in. So I went down and changed the loads.. I could not carry the basket up. I took a shower.. I did not make dinner because of this pain and all day I felt wiped out.. I have wash to fold but no way am I doing it tonight. Ok so that is all I did! WOW and I feel like this? I use to do everything everyday. I would get up and go to work and come home and do dinner hen clean up the house and start some wash.. Now my husbent has to take care of me. I need his help now and I am not working so It is all on him. I worry about when I am older and he is taking care of me more and more.

When my kid were little I did everything inside the house and out. I guess it just gets to me.. What a big life change... I guess I was fooling myself in thinking this is not real and it wil go away..

AmyAria

7/23/08 10:17am

Uff Da, Darlin'! Call your Rheumy....seriously. Maybe there's nothing for it, but maybe there is. Whatever you got going on, needs to get shut down. The Doc office may not even be aware of how bad it is, and maybe it's time to mix up the meds a bit. Just hang in there sister, but don't be afraid to call the doc and go on a good rant. Like mama always said, "squeaky wheel gets the grease" and sounds like you BADLY need some grease for those bones of yours.

bucky badger

7/24/08 5:21pm

I too find sometimes worrying that my wife will have to take care of me as I get older. I am still able to do most everything but I normally have pain as a consequence. As I said when I am feeling well I usually do all I can to give my wife a break but then I feel the pain. It is so hard to judge what activities will give me trouble but usually the more repetitive the activity using the same joints gives that joint the most problems. I was taking the husks off of sweet corn for a cookout on Sunday and my elbows, hands, wrists and shoulders were screaming in discomfort. I only did a few dozen ears but it felt like I did it for 8 hours.

I agree with Amy about seeing your Rheumatologist. Maybe there is something more they can do for you (I HOPE!!!). I know my mother is not responding to any of her medicine for her RA symptoms and she is in misery. I really hope her Rheumatologist and her can come up with a plan that will work for her. My thoughts and prayers are with you and hang in there the best you can!

Sue

7/24/08 9:45pm

You are in my thoughts and prayers. Every night in bed I always ask God to look over all of us suffering for RA..

jill

7/27/08 10:25am

I feel so badly that you are so desperate. I have been there. I was just so overwhelmed about going on the big drugs. They sound so scary at first but honestly they can give you your life back. I fooled around deciding to use them and ended up with permanent damage in my feet. Get to your doctor and learn about the more aggressive drugs. They really do make a difference. Don't get me wrong they are not without their problems but they are better than the alternative. Good luck just know that youare not alone many of us have had these feelings and pain and have found better days ahead.

Sherri Holmberg

10/25/08 7:58pm

Hi I am 51 yrs old and just started having paid about 9 months ago. right now I am in pain, but I don't look forward to midnight to around 2 in the morning, the pain is more than I can bare. I am in pain right now, my hands and wrist hurt but nothing like in the middle of the night. About two weeks ago the pain was in my knee, I got up around 2am to go into the bath room and passed out from the pain, thank God my husband was there for me. I see the RA November 20 and that is not soon enought. I am taking other meds and they help alittle but not much. I am another one who likes to do everything for myself. I love a clean house, but find my self not cleaning as much. I am very greatfull for my husband help he is great. I also sit behind a computer all day at work and love my job, I just hope I can continue to do my job. Sorry for any mispelling , but I am in too much pain to care. Thank you all. Sherri

bev keenan

8/ 5/08 1:20pm

Well I think you have said it all, my biggest gripe is if i fall i cannot get up, i hate the feeling of being incapable, and going out for a drink and i have to use a straw as holding a glass is too much pain, and when my knickers need pulling up and down, my arms are at 90 degrees and cannot reach round my back, the closomat toilet is fantastic, but thank god for my family as they have all seen my fat a** and had to help me pull up and down my pants....lol keep your sense of humour, you need one with arthritis.

Anonymous

8/ 5/08 4:34pm

I just read Sue's blog and the pain in her hands and wrists. She really hit it on the head. these are exactly the things that i am having to deal with plus the fact since you look healthy your family assumes you are fine. I was an extremely active person physically until this hit me last christmas. Also I knit for a local group that distributes to underprivileged babies in the surrounding area hospitals and i can barely get thru a few items now. I was knitting every nite watching tv now can only do it one maybe two nites a week depending on how my hands feel. it is very frustrating and depressing. i am trying to swim every day trying to keep from getting weaker in the arms and legs. The first few laps are so painful it takees my breath away. does any of this get better? I am on relafen for pain only.

Carol

8/ 7/08 4:02pm

Hi Sue, I too have the wonderful RA. I can relate to everything you have said. There are days when you not only feel helpless, but you are helpless. I painted my kitchen the other day and certainly paid for it the next day. I'm on methotrexate and prednisone. Its frustrating not really knowing if the drugs are working, when you feel yourself getting worse!! You as well as all other RA sufferers are in my daily prayers. Hang in there, and maybe down the road there will be that miracle drug that will help all of us!!! Carol

Michelle

8/ 7/08 4:39pm

Hi, my symptoms began with finger pain and problems with my vision. Initially my complaints were not taken seriously and I was very discouraged. I have since been diagnosed with RA but am still waiting for my first appointment with a Rheumatologist. My hands are extremely sore which has made working very diffficult. I am a registered nurse and to ask for modified duties till I get my pain under control. Work is still difficult but I am trying to manage as best as I can. I am on celebrex right now but it is doing nothing for me and my doctor has given me a five day prescription for prednisone which I started yesterday morning and I am hoping this will help as I can't even hold a book or anything for that matter without pain. I love photography but have not been able to enjoy that either due to pain. I am anxiously waiting for my appointment with the rheumatolgist with hopes that I will be given something that will help with pain control. I have pain in my wrists, ankles and feet as well and now one of my knees has started to bother me too. Like you my hands are what causes me the most pain and I do have difficulty with everyday tasks that I used to take for granted.

I know this does not help with the pain but at least this is a venue to voice it and hopefully be better informed of treatment options through everyone's story.

Michelle

Sue

8/ 9/08 10:00pm

Hello all,

So hands are the 1# pain and trouble most of us have. I have heard hands and feet are the marks of RA.

Michelle

3/ 5/11 4:20am

Your post made me cry ~ I too have some of your issues and it is terrible to know that others hurt so badly. I wish there was a cure. Seems so unfair.

I hate it when a sheet or something wraps up on SPIN cycle and is hard to pull out, that hurts my hands to bad. I have to grab bowls from the cabinet in a FSIT type action instead of graceful like used to. Most EVERY thing I do is effected. And, yes, even the act of doing zippers, pulling up pants, even "wiping" is so difficult. I am so sorry you hurt and even though I can't help, I do empathize, as I hurt really badly as well. No one understands unless they have it. You can not explain the pain~ I used to complain but got tired of saying I HURT and figured my husband was tired of HEARING it since he can't FIX me. When someone says they hurt, I feel myself thinking, "yeah, but yours will pass, wuss! " ha ha~ no, I would never say that! But, you gotta' be tough! RA is NOT a disease for the weak :o)

I have multifocal neuropathy as well~ so I have muscle loss and weakness! Bonus!

Maybe, in our lifetime, stem cells or SOMEthing will help us.

In the mean time, I am SO SORRY you hurt and hope your GOOD days out number the bad ones. Very sincerely, Michelle

hardest things to do with RA

Ask a Question