I’ve just been sort of diagnosed with this. I say sort of because there’s always a chance it’s something else until I get my first appt with a rheumatologist, but I have rheumatoid factor in my blood and very frequent severe aches and pains in my joints with hot red swelling and immobility. So it seems far more likely than not.
My life is already being impacted a lot - typing’s hard some days, on other’s my shoulder’s so sore that I have to wear a sling, on others I can’t walk without excrutiating pain or can’t walk at all because my knees won’t bend, etc etc. Fortunately I already work from home, but that work requires a lot of typing (several thousand words a day) so is often very difficult. If this continues I’m struggling to think of any job I could do. Teaching (my former profession) is definitely a no-goer until my symptoms are under control.
Anyone have experience of this? What job do you do and how does it fit in?
FWIW, I’m 37, female, of a healthy weight and in the UK.
I have two family friends with RA. One was diagnosed forty years ago, deteriorated quickly, now depends completely on his live-in partner, and writes code for a living. His fingers looks like they’re in bad shape, but he’s remained able to type all this time. It does take him a long time to “get going” in the morning–waiting for pain meds to take effect I assume–but once he’s up he’s up as far as I can observe. He does work as a contractor and he and his partner have their own company, so his hours are flexible.
The other was diagnosed between five and ten years ago. She has occasional flare-ups that put her in bed for a few days, but seems to operate fine outside of those. There have been some stretches of time when she feels so good that she stops taking medication. She also owns her own business, a photography studio, and when she isn’t having a flare-up is able to hike around doing outdoor shoots etc.
I’m sorry I don’t have more info, I’m sure other Dopers will be along. My point is that both these people, once properly medicated, have been able to keep chugging along in a productive way.
I always remind myself it isn’t going to kill me. Don’t let it get you down and don’t give up on treating it. With meds, you will surely feel better. Here in the states they start you on the cheapest and safest drugs, and move along if those don’t work. Definitely communicate your needs to your rheumy, or she won’t be able to help you.
Day to day, it takes adjustment but I have adapted. Rubber grips to open jars, electric can opener, etc.
My favorite and most important is the battery operated automatic wine cork remover.
Having a good hubby who supports me and does what I can’t, but tolerates no whining or pity, is helpful as well.
I’m the “good hubby” from the previous post. I know that as long as my wife is well medicated, she does very well. On the other hand, she isn’t the type to complain about her pain or her lot in life so I’m never 100% certain how she’s feeling. We decided a long time ago that because she has a condition that will slowly but surely get worse, we decided to enjoy ourselves now, we try not to put things off as long as it’s financially reasonable.
We know that she probably won’t die from this illness, but we are keenly aware that she could wake up tomorrow in debilitating pain.
One thing that ticks me off is that she’d rather I think that she’s lazy rather than can’t physically do something. The frustrating part is just her inability to, ya know, physical activities. Not like that, but like a long hike on uneven pavement, Bike, get on the floor with the dogs, stay on her feet for a concert, any number of things. We’ve adapted, but I wish she could have a fuller life with me.
I have a similiar condition (mixed connective tissue disease). I am currently taking 200 mg of Plaquenil twice a day, 800 mg of Motrin as needed, and 20 mg of Prednisone. My hands and feet are still very stiff and hurt in the morning but by noon they are not nearly as stiff but still hurt a bit. I get episcleritis a lot in both eyes (at least once every five-six weeks). I also have these hard lumps in my left wrist and elbow that my rheumatologist says are either ganglion cysts or rheumatiod nodules. I have some inflammation in fluid in my left knee as well. I began having symptoms in my early twenties (I am 33 now) but didn’t get treatment by a rheumatologist until three years ago.
It does your joints good to keep as active as possible. I get up and move around every 30 minutes or so if I find myself sitting for long periods of time. I also try to eat well and get plenty of sleep; being run down tends to make my symptoms flare.
As far as typing: the speech-to-text software out there is a lot better these days. Dragon Naturally Speaking is the one I’ve heard the most about. Something like that might help you “type”.
Sorry all for not responding earlier - my partner was off work so I wasn’t online much.
This and another thread elsewhere have definitely made me less worried, so thanks. I’m not going to worry till I know the extent of my problems, at least.
Work-wise, it is difficult, because my main former work was teaching - currently impossible because I can’t raise my arms and often can’t walk, or at least not without pain. My main current work requires typing a couple of thousand words a day, and I can’t predict which days my hands will make that slow and painful or impossible.
Speech-to-text wouldn’t be viable for my job - I have to listen and type while I’m listening, so talking over it would just not work. But maybe meds will settle everything down.
Is anti-ccp level the same as rheumatoid factor? I asked my consultant today what my rf was, and he said 150, but they’re rechecking it.
So, anyway, I saw the rheumatologist today and he was great. He seemed very concerned and hasfast-tracked me for scans, etc. Had the x-ray today and will have the ultrasound tomorrow. It’s a bit worrying when your doctor says “poor thing” when looking at your hands - I was being quite cheerful and all!
I have swellings and pain in all my hand joints, wrists, shoulders, feet, hips, ankles and knees and can’t walk very well or type very much. I guess I kinda look worse than I feel because I’ve adapted quite well to it all.
Prognosis is good for remission within a few months though. Here they start you on a very intensive drug regime to try and bring everything into remission and then reduce the meds. At least that’s what the doctor said today. Don’t know which drugs yet.
My mother’s “bad bones” are on the arthrosis end, but she’s another one who wakes up moving like a stiffer version of The Mummy and who gets “greased up” around mid-morning. Something which pisses us off greatly is that on one hand she’ll ask for help for things she could solve herself (“I can’t reach the remote and moving would mean having to reset the pillows on the armchair”), and on the other and specially if she’s angry she’ll overextend herself (move a pile of 5 stainless-steel cooking pots? Sure, no problem! If I manage to drop half of them and break something, perhaps ever a piece of myself, my children will take care of it!). My advice, learn to figure out what should you force yourself to do and which things should you never even attempt - and keep in mind that it will change from day to day.
Headphones are essential for my job, yeah, but speech to type wouldn’t work. I have to type at the same time as listening (making subtitles for TV shows). Just trust me, for this particular work it is completely not an option.
It’s not that - I work from home. But I type as I listen, and edit as I go along, and fit it into the character spaces and add colours; having to read out everything I type would increase the work time by ten, not leaving anywhere near enough time to do the work. I think it’s probably hard to believe unless you’ve done it.
Several years ago, I had a bout of something autoimmune that was cleared up by a round of prednisone. The main symptom was pain in my wrists, hands, ankles, and feet, and it got bad enough for a while that walking was terribly painful.
I found heat to be the best pain reliever and overall soother, but sitting in a hot tub didn’t do it. I couldn’t afford one of these, but I did go to a nail salon that had one and had my feet and hands dipped, then wrapped up and elevated for 30 minutes. It was heaven on earth.
I hope you don’t have it, because if you have it you just have it, not just in your shoulders. It’s systemic and will eventually, usually quickly, be felt elsewhere.
I was diagnosed 17 years ago. Still teaching, but definitely my RA and fibromyalgia rule my routine. Sufficient rest is imperative, and knowing when to hang it all up and go to bed. I love my double-strength Vicodin, and there are days when I depend on my students to fetch and carry for me. I was on an IV medication called Rituxin here, until I became allergic to it, but it supposedly is very good for RA.
My mother was diagnosed with RA when I was a wee thing, and my uncle was diagnosed last year.
One thing that’s been important for both of them (and we have several family members who help encourage and support this), is to find an Occupational Therapist that you get along with, and who will work with you, and do what they tell you to, EVERY DAY - even if it hurts, even if it sucks, even if you can’t do it all the way or 100%, even if you don’t want to. Find someone who will hold you accountable, and let them hold you accountable.
The best part of that is that, once your OT and Doc see that you’re committed to taking ownership of living the best life possible, they will start to think of you a “responsible” patient… and those are the kind that get to try new things. My mom’s ended up in a couple drug trials that way, and my uncle is using some knee brace that’s letting him get through 18 rounds of golf again.
I’m not going to worry till I know the extent of my problems, at least.
Here they start you on a very intensive drug regime to try and bring everything into remission and then reduce the meds. At least that’s what the doctor said today. Don’t know which drugs yet.