Nurses with fibromyalgia/cfs/similar conditions?

  1. Im 18 years old, and was diagnosed with fibromyalgia when I was 13. I'd love to be a nurse, but im intimidated and afraid because I know that being a nurse can be very physically exhausting, even for perfectly healthy nurses.

    Those with conditions such as fibro, cfs, or even lupus--how do you guys cope? Were you diagnosed during your career? How do you take care of yourself on days off? Are you able to adjust your schedule in a way that works for you?Were you diagnosed before you became a nurse and still decided to become one? How do you deal with flares when you have to go to work? Im really worried about being exhausted and in pain, and not being able to provide patients with the best care that I can provide them--thats my main concern. Thanks
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    About PianoTiles

    Joined: Aug '15; Posts: 25; Likes: 15
    from NY , US


  3. by   NurseGirl525
    I have fibro and am currently in nursing school. I was originally diagnosed at the age of 15. Back then it was called fibrositis. They barely knew what it was. I was given an old school anti-inflammatory and told I needed this fancy pillow to help me sleep. Things have really changed since the 90s but they still don't know a whole lot about it. I have done 12 hour clinical days and have been fine. I finally have mine under control, which means I know the pain isn't going to get any better, but it doesn't get worse either. I have a daily routine that I stick to. And I mean stick to it. It's a big part of why I'm feeling much better now than 5 years ago. I also have my family doctor and pain management doctor on board with me doing this. I will let you know what I do.

    I go to sleep and get up at the same time every day. This helps me get adequate sleep and get on a good sleeping schedule. Sometimes, I still don't sleep no matter what. I still get myself out of bed by 6am and I get back in by no later than 10pm at night. If I had a bad night of sleeping, I may take a nap during the day. Rest is important.

    I do some sort of exercise every day. This time of the year it's walking or running. It helps my muscles stretch out and helps with stress. If I am very stressed out, my fibro flares up. So during the stress of nursing school exercise is important. So is sleep.

    I do not miss a dose of my meds. I take them at the same time every day. If I miss a dose of one of my meds, my fibro flares up. I also know what meds can trigger a flare-up for me. For some reason antibiotics and steroids do that to me. Pretty much anything that messes with my immune system. I will only take an antibiotic if I am desperate. And I refuse steroids. I swear, some day they are going to find out that fibro is an autoimmune disorder. Anything that throws my immune system off balance flares me right up.

    I try to eat healthy as much as I can. This is not always possible. I have days where I am just like I'm tired, I'm going through a drive-thru. But, I don't keep junk around my house. I stock my fridge with fresh fruit. I drink a little bit of coke in the morning for some caffeine. The rest of the day I drink water. I may indulge in some wine every now and then, but I don't eat a lot of crap. Heavy food weighs you down and makes you just feel heavy and tired. Especially in the summer I eat a lot of fruit and salads. But I also don't deprive myself if I have a craving. Depriving yourself makes it worse. If you need some ice cream one day, eat a little. Doing that makes it easier to eat healthy.

    I make sure I go to all of my appointments. I see my pain management doc every 3 months. I see my family doc twice a year. I go to the OB once a year. I get my check-ups, I get my flu shot every year.

    It really took me about a full year of doing all of this to feel good. But having a routine has helped me greatly and knowing what triggers my flare-ups too helps me learn to avoid what does.

    Good luck and talk to your doctor. It's possible to do this, you just need to take care of yourself.
  4. by   hppygr8ful
    A lot depends on how your are handling your disease process and how bad your pain is on any given day. I have Fibro as swell as Ulcerative colitis and arthritis. So really there isn't a single day in my life when some part of my body doesn't hurt. I eat a pretty strict diet with lots of Alkaline vegetables, get adequate rest and make sure I take my breaks at work. I try to never do overtime always get help in lifting and moving patients etc.... I take pain meds when I need to but never while I am working and a I never drink alcohol or do any recreational drug. These strategies may or may not work for you. You can be a nurse with these conditions but you have to take really good care of yourself.
  5. by   poppycat
    I don't have fibro but I do have rheumatoid arthritis so I have chronic pain along with exhaustion. I've been a nurse since 1978 & the RA wasn't diagnosed until about 4 years ago. I wasn't happy to hear the diagnosis but was very relieved to find out there was a reason for how I'd been feeling for almost 30 years. I'm on 2 medications: one to suppress the immune system & the other is a biologic to slow progression of the disease. I still have pain but not nearly as bad as it used to be.

    The exhaustion gets me more than the pain because I can do many things to ease the pain but only sleep helps the exhaustion & I never can seem to get enough sleep. My current job is very low stress & doesn't require a lot of me physically.
    On my days off, I take frequent rests in between whatever I'm doing. On days when I'll be working that night, I don't make any plans. I stay home & rest,read, watch TV, & sleep.

    I think the most important thing is to listen to your body. Rest when you need to & do what you can when you can.
  6. by   PianoTiles
    Thanks for the advise. I recently turned 18 and so I want to try some of the medicines for fibro out there. Do you guys take vitamins? I want to star taking a couple after reading up about the potential benefits. I really need energy and mental clarity to get through my pre-reqs at community college and possibly nursing school if I choose to go that route.
  7. by   karaluise
    I have iron defeciency anemia and cerebral palsy. There are days I am so tired I can't walk straight. My advice? Before you go to nursing school get yourself stable and on the right medicine. If you can afford to, do not work a job while in school. Take naps and sleep when you can. Eat healthy, try to avoid or cut back on sugar. Above all, keep well hydrated. Hope this helps!
  8. by   ShantheRN
    I have fibro, along with a weird degenerative form of arthritis in my back (DISH or Forestier's disease if anyone is bored and wants to google). Fibro flares exacerbate the back symptoms. I was diagnosed with DISH last March, and the fibro was the past winter. I'm on gabapentin, which thankfully was the first med we tried and it worked. It took about 6 months to get my dose correct. The biggest thing with any chronic illness is making your health a priority. I used to push through pain because it seemed ridiculous that I was so relatively young and felt so bad. I say no when I need to. I don't work overtime. I have a sleep routine that I follow pretty strictly, and my diet is mostly whole foods. Giving up artificial sweeteners made a huge difference pain wise! I use melatonin nightly. I work nights, but my sleep disturbances occur whether I'm on a work schedule or living a regular one. I take tramadol at bedtime as needed. Sometimes, my best friend is my electric blanket. I've learned to listen to my body and take care of it. I'm 38 and sometimes I feel like an old woman with my electric blanket and ceramic mug of tea....but my quality of life is SO much better when I do what I need to do.

    I started grad school this month, and I am careful about planning out my time. I use a planner and schedule in rest times and exercise throughout the week. The key is consistency and adaptability! Nursing school and a nursing career are possible. I actually intended to spend about 10 years at the bedside before starting my MSN. Instead, I started it after 4 because I can't physically do my job for as long as I intended.

    My rheumatologist has been pretty amazing. Rather than telling me I can't be a nurse (which I've read about online....grrr) she worked with me to develop a plan that will work for my life. Follow up with your care team - no matter how busy life gets...I remember the craziness of nursing school - is critical. If I work three nights in a row, I know my first off day is likely going to be spent lounging in bed watching TV and trying to distract myself from the pain. I accept that, but it took a long time for me to do that. Get yourself a solid support system and you'll be fine!
  9. by   rnzilla
    Hey there! I actually started experiencing my symptoms a few weeks after I graduated with my RN degree. I took boards in pure misery! I sometimes wonder how I passed! Anyways, I won't lie, I wanted to give up there in the beginning when things first started and I didn't have a diagnosis. I was pretty sure I had fibro though and was encouraged by a counselor to continue down the path I had worked so hard for. I am so glad I did! I now work at one of the best Hospitals in the nation. I do straight 12s, and yes sometimes I am tired and achy afterwards or during but I find when I am there I usually feel fine save for a few occasions. I think the distraction of work is a good thing for me.
    Keep in mind as an RN you can go down many avenues, you don't just have to work 12 hour shifts in a hospital! There are tons of opportunities!
    Fibro sucks and there really is no getting around it but don't let it limit your desire to work in the field. It can be managed.
  10. by   %D#2
    I have systemic lupus, rheumatoid arthritis, Sjögren's syndrome and was just diagnosed with fibro. Yeah I know. It's a lot! But I do okay. I have to take medication for pain (not opiates!) but I get by. It is possible to be a nurse with illness. In fact my CNAs tell me all the time what a great nurse I am. So you can be a great nurse. Take care of yourself. Eat well. Get rest. Know your limits with social events. Etc,
  11. by   %D#2
    Also wanna add.. Having an unless and chronic pain, will make you more compassionate and knowledgable with your patients who go through it too. You'll know it first hand.
  12. by   hallie16
    I started nursing school August of 2014. Got diagnosed with Fibromyalgia February 2016 (even though I had had the symptoms 4 years). I just took my nclex PN for the third time today and I think I failed. I did the NSBCN 3 week online review and studied my ass off. And back to square one I go. I think in nursing school I had a lot of fibro fog going on and didn't retains the information like 'other' people would have. Any opinions or recommendations? I'm open to anything!
  13. by   BellaBlackwell
    I have chronic fatigue and getting it was one of my biggest reasons to pursue nursing, as all of you CFS'ers know, this disease is one that no one understands and most people will call you a hypochondriac. I am spurred on by the lack of support and understanding both within my family and friends and also from the various professionals that have taken part in my care, and I don't want this to happen to anyone else. I'm an aide right now but aspire to be an RN and be that compassionate listening ear, and even get some answers for someone else.
    As far as coping with the CFS, I know when I have to go to work that I need to pre plan and get adequate rest. I also find that my symptoms aren't as prominent at work as they are other places. It's a good distraction, and if you love this profession, it'll be a release of endorphins as well.
  14. by   caffeinatednurse
    I'm a relatively new RN. I graduated with my BSN in May 2014. I was diagnosed with Hashimoto's Thyroiditis while I was in pre-nursing classes, and then with fibromyalgia, scoliosis, sciatica, and arthritis while I was in nursing school. I'll eventually probably be diagnosed with SLE - it runs in my family and my recent labs seem to be pointing in that direction. Chronic pain and fatigue are the two symptoms I deal with the most.

    Nursing school was difficult for me. I lived at home with my parents because they were able to help me with stuff like laundry and cooking meals when I was flaring. The downside was that I had a long commute (around 1.5 hours each way) to class, which meant that I was usually exhausted. Especially after I was diagnosed, I started going to bed early each night and getting up early in the morning if I had stuff I needed to do, rather than staying up late. I also used melatonin as a sleep aid, tried to eat healthy wherever I could, and tried to remember to take my medication as scheduled.

    Being a nurse with these conditions is hard. I don't want to be the downer in this thread, I'm just being honest. It's easy to skip lunch breaks, forget to take medications and neglect other self-care. Especially when you're a new nurse and you're concentrated on other things such as time management, passing meds, etc. One of the reasons I left my first job (which was on a Med-Surg/Progressive Care unit) was because I couldn't get the physical help that I needed to do my job. I didn't need anything major, just help turning total care patients.

    Not all units are like that, but there are some that are.

    Something that is important is to know your limits. Are 12 hour shifts doable or will you need something more along the lines of a 9-5 type schedule? Do you want the excitement (and stress) or working a hospital or would you be happy in a clinic or physician's office? Think about these things as you progress through nursing school. And when all of your classmates are running out getting 12 hour shifts at the local hospital, stick to your plans and find a job that you can actually do for a long time.