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.
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.
Thank you-I feel I am very lucky to have a good doctor who is not only knowledgeable, but whom I trust and like as a person. Thankfully today, the current thinking is to treat agressively early in the disease process as the disease tends to advance very quickly within the first 3 years. Treating early tends to minimize the damage to the joints, although as of yet still no progress to stopping the disease. I can hope for a remission though...it can and does happen. I have hope that the Enbrel will help (I don't actually start taking it until Friday due to insurance delays). I don't want to give up hope, but am so afraid of how this disease is impacting my career, esp now as I have finally found my "niche", so to say.
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
I'm looking forward to starting the Enbrel. Some people I know it has helped them fairly quickly-others, more like a couple months. I tried clinoril but it didn't help. I am very cautious about NSAIDS in general because I have belly probs.......have had gastritis in the past and it tends to recur. Ibuprofen doesn't work unless I take the highest dose, then it bothers my belly (even with food). Aleve takes the edge off, but that REALLY does a number on me. I used to have severe pelvic pain a few years back before I had a hyster and I would take it until one time the pain was so bad I landed in ED-luckily I was ok, but have not been able to take it since. Anytime I try, my stomach is killing me within an hour!
I also take the Cymbalta as well as the Trazadone. I am on methotrexate, and will continue that as a combination therapy with the Enbrel, which I have read has very good results.
I've not ever been very good with meditation, I can't get my mind to focus. I don't discount it, I am just not very good at it! I bought myself a yoga DVD for people with pain/arthritis, etc. It is in a chair, not the floor and has fairly easy postures (some still hard for me) but I have not advanced past the first part where you do breathing work, because I have such difficulty focusing. Well, practice makes perfect!
I took Methotrexate for 4 yrs but I just had to stop because the side affects made me sick as a dog. it was like I had a short case of the flu every monday.
I could probably get disability if I wanted it but my hubby and doc say it would be worse thaan the RA. I would just stove up and be in a wheel chair in 6 months. I also take azithoprim(sp). Ibuprofen nearly wrecked my kidneys though
I took Methotrexate for 4 yrs but I just had to stop because the side affects made me sick as a dog. it was like I had a short case of the flu every monday.
I could probably get disability if I wanted it but my hubby and doc say it would be worse thaan the RA. I would just stove up and be in a wheel chair in 6 months. I also take azithoprim(sp). Ibuprofen nearly wrecked my kidneys though
How does the intermittant FMLA work?
I haven't worked in almost 2 weeks and go back the 22nd. I try to do something active at least twice a day (chores, errands) but can't handle too much at a time. Before, work was fine because I could handle an 8 hour shift-yeah, I'd be in pain, but it would keep my joints active.....but the hip pain became so severe I cannot physically do it. I'm at the point where, when I go to WalMart, I look longingly at the motorized scooters.....but feeling too proud, end up leaning heavily on a cart and getting what I need and leaving without leisurely browsing as I am fond of doing (saves me money LOL!). I do try to keep as active as possible because these days I stiffen up (or "gel" as my doc calls it) quicker than before. used to be I had to be inactive for a longer period of time, now I am stiff on arising even after sitting only a short while!
I don't have much in the way of side effects from Methotrexate. At most, I feel more wiped out than usual. I have no nausea, etc. I take Leucovorin the day after, which I think helps a lot.
Intermittant FMLA is just like FMLA you take it to your Doctor and he fills it out just like taking a sick leave but if you have to call in because the pain is so bad your work cannot use the absences against you to fire you. My Inermittant FMLA was for a yr so we could figure out all the drug combos. and take the time to let the meds work.
OHHHHH and about those littles scooters at walmart The first time you use one you may feel a little wierd, but I guarantee you the second time won't bother you in the least. tried and true tested fact, LOLOLOL
I just want to say I know how you feel. I graduated nursing school in June 2005 and was diagnosed at age 31 in July of 2005. I have been working in the ICU since August and there are those shifts where I wish I was anywhere but work. Most of the time, my pain is around a 4, but there are times when my hands and hips hurt so bad, it's almost unbearable. Those are the nights when I'm not "supernurse"...LOL. I get scared not knowing what the future holds for me, healthwise. I could become disabled next year or 20 years from now. I'm currently thinking about shadowing one of the correctional RN's at my husband's prison because the job is a LOT less physically demanding, 8 hour shifts, same pay as I make now, and I would have great benefits and a pension. Of course, this would not be for a few years as I want to get some experience under my belt.
The scariest thing for me is not knowing...not knowing which joints are going to hurt when I wake up in the morning. I currently take 200mg of Celebrex daily with the occasional 400mg day if I'm in a lot of pain. My rheumatologist has discussed putting me on Enbrel...I'm dreading the cost! My husband has also had a difficult time understanding the pain and the depression the pain brings. He's done a lot of research on the internet, though, and has become extremely supportive. He knows the days when I'm just not my "normal" self and understand when I don't have the energy to chase the kids around or get housework done. I don't know if anyone else feels like this, but for me, it's VERY frustrating to have your MIND want to get up and do things, but your body just doesn't want to cooperate. I am not a lazy person, but there are days when I want to scream from the frustration that comes with feeling like I'm being lazy.
Many of my coworkers know I have RA and understand when I can't carry our monitors to the ER for a patient pick up or I can't get the hubs of IV tubing apart because of my hands. They step in and help me out whenever they can. Several of them have family members with RA and know where I'm coming from. I've been very lucky to work in a unit that is so supportive. But it still scares me to think about what my future may hold.
I am sorry to hear about the pain you've been going through. Know that there are many other RN's out there going through the same thing. Take it one day at a time and definitely look into that intermittent FMLA thing. I had no idea you could do that...something for me to think about as well!
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sphinx, BSN, RN
326 Posts
Thank you-I feel I am very lucky to have a good doctor who is not only knowledgeable, but whom I trust and like as a person. Thankfully today, the current thinking is to treat agressively early in the disease process as the disease tends to advance very quickly within the first 3 years. Treating early tends to minimize the damage to the joints, although as of yet still no progress to stopping the disease. I can hope for a remission though...it can and does happen. I have hope that the Enbrel will help (I don't actually start taking it until Friday due to insurance delays). I don't want to give up hope, but am so afraid of how this disease is impacting my career, esp now as I have finally found my "niche", so to say.