nurses with rheumatoid arthritis (long-ish)

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I have been a nurse for 10 years. Less than 2 years ago I got a job in surgical ICU and have come to love it. Just under a year ago I suddenly began having joint pain and this summer was diagnosed with Rheumatoid Arthritis. At first I did a short prednisone taper, then shortly after I started on methotrexate. I ended up going back on prednisone because the methotrexate wasn't working yet. On the prednisone I was able to function with minimal pain, in fact left to think "haha, maybe it's all in my head", of course until I tried to taper off!

By December I had to stop taking the prednisone because my moods were much too volitile to where I couldn't cope. I'd also gained a bit of weight, as is not uncoomon on prednisone as we know. Meanwhile the methotrexate still was not helping much, despite increased dosages and we started injectable methotrexate 20mg a week.

At first it seemed to help some, but the past month I have gone downhill. My hands have gotten worse, I have thumb involvement whereas I didn't before.....my hip pain has gotten so bad I limp all the time......more joints affected, etc. It's gotten to the point where my hip is so bad I called in more often than I'd like and finally my rheumatologist put me on short term disability for a couple of weeks. I am starting on Enbrel (combination therapy with methotrexate) on Friday. I have high hopes it will work, but worried because I will have only been on it 10 days or so when I am due back at work. I also had a steroid/lidocaine injection to my left hip/bursa on Wednesday, but need one to my groin area too, but my rheumatologist can't do that, it has to be done in radiology and I don't know if/when that can be done.

My concerns......right now I can barely manage short outings. Today I had lunch and stopped at the store for a couple things and that's it for the day. One evening a week I do aquatic exercises for arthritis to keep my joints as flexible as possible. I am so fatigued that I can fall asleep at the drop of the hat. I know that Enbrel has very good results and can also work fast, but also worried that I will not be ready for work. But my big concern is....what if I feel a little better, good enough to go back...that is, until I get there, and try working. I know my boss needs to know ahead of time whether I am able to work or not so she can cover the shifts! It's just not fair to my coworkers if I wait till the last minute and figure out I can't work.

Also, my white blood cell count has already started to drop some. Starting on the Enbrel as well, I am wondering how much risk I will be at for developing infection? We typically have at least 1 if not 2 or 3 patients with ORSA, occasionally VRE, etc on our floor. Now, I am *always* meticulous about infection control, standard precautions, contact precautions, etc. Am I likely to be able to protect myself? Or am I am "sitting duck" for infection waiting to happen?

I have also considered that I will at some point have to seriously considered moving on. Peopl hear I work in an ICU and think OMG that's such heavy work. Well, in my thinking, physically it's easier than floor work where depsnding on the shift you can have anywhere from 5 to 10 patients-and you typically going up and down halls, doing a lot of "running around". As opposed to ambulating, toileting, getting up in chairs etc. Where I am, we have 1-2 patients max (rarely do we have 3, and only if 2 of them are overflow floor patients and one is transferring out). We only get them up to chairs during the day, many just get into cardiac chairs-one of ours has the neat little thing that you roll them onto and crank them over...the other you use a sliding board. Both you have anywhere from 2-4 people helping depending on the size of the patient and how many lines and stuff he has. If the pt gets to a recliner I never do it alone, even if they are stand fairly well, I always have someone help them stand and I watch the lines and drains, etc. Also, my patients are never more than a couple rooms apart so minimal "running around".

Now I'm not saying it's easy physically, just that I always have help, and that having patients that aren't ambulatory helps. Turning and positioning is easy with lots of help available. I do have some problems with fine motor things like twisting open things....I always have someone open my dilaudid, lol. And pumping up pressure bags, well I hold it between my 2 hands and push them together to pump it up. I have adapted ways to do much of what I have problems with, and I ask for help other times. I'm only out now because of my hip, being in so much pain I can't be on it long at all.

But I am, realistic. Working nights is difficult because I have not been able to sleep well during the days-and lack of sleep makes symptoms worse. I also know that things may just get worse. What I am wondering is what else can I do that *would* be bearable? I used to do homecare but driving a car is bad now. Some people have suggested school nursing but I'm not great with kids, plus I think working with all the runny noses and stuff might not be great, lol. I was thinking case management but seems you need experience to get into it. Matter of fact, seems a lot of things that would be easier on my physically you would need experience to do. Plus, would it be best to disclose up front that I have RA? I feel that not to would be dishonest and risky, but if I do I fear it would hurt my chances.

I am sorry this has been so long. I guess I just wonder if there are others out there in my position who may have some insight? This issue is stressing me out a lot because this is the first job I can truly say I love. I truly do love it. :scrying:

I welcome your opinions and wisdom!

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You are in my prayers. My daughter was ill w/ Still's disease for 7 years. All of the meds take soooo long to work. Have you thought about doing something like telephone triage for a year or so until you can get your disease under control? I don't know how many meds and med combos we tried until she finally got striaghtened out. Of course she was just a kid (age 8-15) when she was ill, so it is different in many ways. The meds may help your arthritis, but make you sick in other ways. It is so frustrating. Many take a few months before you eve know if they are starting to help. My daughter's rheumatologist was great, but he was the seond one to treat her . The first was world-renowned and a GIANT jackass. If you are not happy w/ your doc, I'd say find another. I hope you are well in the near future and back to your job or another that you are happy with.

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Specializes in Case mgmt., rehab, (CRRN), LTC & psych.
I guess I just wonder if there are others out there in my position who may have some insight? This issue is stressing me out a lot because this is the first job I can truly say I love. I truly do love it. :scrying:

Unfortunately I do not have any insight to offer.

However, I think it is terrible that you're afflicted with rheumatoid arthritis. I, too, have chronic right leg pain and it has deeply affected my quality of life. I always wish I could turn back the clock and go back to the days when I had freedom from pain. I'll keep my fingers crossed for you with the hope that there's a treatment or medication that is capable of relieving your pain.

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Thank you both. Imenid, I'm glad your daughter has recovered...must have been very, very difficult for your family and of course for her, the poor dear! Do you know, what kind of places typically employ nurses in telephone triage? I am not really up on these things......google here I come!

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Unfortunately I do not have any insight to offer.

However, I think it is terrible that you're afflicted with rheumatoid arthritis. I, too, have chronic right leg pain and it has deeply affected my quality of life. I always wish I could turn back the clock and go back to the days when I had freedom from pain. I'll keep my fingers crossed for you with the hope that there's a treatment or medication that is capable of relieving your pain.

Oh I meant to say I am sorry you are dealing with the leg pain. I know that sometimes my hands or my hips will be hurting and I'll just go sit in the tub, or stare at my swollen joints and cry wondering why? Well, since I can't turn back the clock, I am relying on modern medicine and trying to keep myself as active as I can without overdoing it.

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Sphinx,

Just a thought,as you seem to be doing everything you can on the allopathic pathway. You might want to think about alternative therapies. You can discuss it with you present doc and see what s/he thinks about it. There are treatments using things such as Mahanarayan oil, guggul, and fatty acids, among other treatments, that have shown much benefit with your condition. Just please don't use them without letting your PCP in on what you want to do. Good luck!

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Specializes in OB/GYN,L&D,FP office,LTC.

I'm sorry that you are having so many problems.

Is it possible for your MD to keep you out of work a while longer? Maybe you need more time off.

I hope things improve for you soon!

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Sphinx,

Just a thought,as you seem to be doing everything you can on the allopathic pathway. You might want to think about alternative therapies. You can discuss it with you present doc and see what s/he thinks about it. There are treatments using things such as Mahanarayan oil, guggul, and fatty acids, among other treatments, that have shown much benefit with your condition. Just please don't use them without letting your PCP in on what you want to do. Good luck!

Thank you for your advice.....I have looked up some info on alternative treatments and considered speaking with my physician. I'd never heard of the first 2 you mentioned and have looked them up as well. When I see my doc again I will get his advice. I have also considered acupuncture, however don't know enough about it....it seems as if, with as many active joints as I have, that I'd have little needles everywhere, lol! Although, it is my hip that is causing work issues, maybe I can focus on that...

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Specializes in 5 yrs OR, ASU Pre-Op 2 yr. ER.

We have a nurse at work with RA. She doesn't talk much about it, but you can see the pain on her face sometimes.

Reading this thread to get a better understanding on how this affects people at work.

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I'm sorry that you are having so many problems.

Is it possible for your MD to keep you out of work a while longer? Maybe you need more time off.

I hope things improve for you soon!

I don't think it is out of the realm of possibility.....however my doctor seemed concerned that keeping me out longer might jeoprodize (sp) my job standing. On the other hand, when I spoke to my boss she seemed concerned that I may not be ready to return at that time, although she didn't come right out and say so.

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Just a note to say that you are in my prayers. My aunt was diagnosed with RA when she was 27, and is now almot 70. The effects of the RA on her body have been awful. Please make sure you stay on top and things, and get in with the best RA doctor that you can. Stay with the medicine that helps even if insurance doesn't cover it. I read that you are taking Enbrel. My aunt had tremendous luck with that, but quit when Medicare quit covereing it. Remember that stress has a huge impact on RA.

If you have not already, ask God to help you get through this. He knows your body better than anyone else.

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Specializes in CCU,ICU,ER retired.

Holy cow I could have written your letter to the T. One you can consider is Intermittant FMLA I did that for a year and I didn't get in trouble of the callins. I take Enbrel as well I just love the stuff it has helped me more than any thing else out there but it does take a while to work. I alaso take clinoril, azulfidine, cymbalta, flexeril, and trazodone for the sleep. If I getr a good nights sleep I don't hurt as bad. I take Oxycontin and lortab also. on days I just can't deal with the pain. Now the next thing I do that some folks don't believe in is meditation. I do that every morning and think myself in to getting above the pain.

I changed from ICU to a Chest pain observation unit I don't have to yank and pull patients near like I used to. CPOU is 100% less stressful too. I hope I helped in any way

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