Pain

[Kristina09]

It?s 8:30am and I just got into bed after getting off from a 14 hour shift on my feet. I?m in so much pain and fatigue during work that I don?t know how I?m going to survive my shift.  I used to think well I just need to make it through this month.  Then it was this week. Then I can make it thru this shift.  Now it?s hour by hour

    In so much pain when I get home that I can barely make it into my house from the driveway,  I get inside and I need help right away.  I?m in tears.  My back hurts so much, my knee kills me. I think I count every step to judge if things are really worth walking for. My shoulder is so weak I need help getting my shirt off.  I know it?s a lot of detail and I?m complaining but it?s everyday life. Everyday I?m in moderate pain or extremely fatigued.  I survive but it?s miserable. It doesn?t feel like I?m living.

   I just wonder if the rest of my life will be like this.  I?m 37 and I feel like I?m 97. I?m tired.  Im even tired of needing to vent. I wish there was a cure for all of this and for everyone of us. It?s a struggle everyday and it seems to get more difficult  physical pain takes a toll.

   I want to be positive and uplifting, but some days I can?t.  Thank you for having a place where I can say all of this and feel like I?m not alone.

With hugs and kisses.
         Kristina

[happylife]

Kristina hugs.

Artificial intelligence is making great progress in healthcare at a fast pace. This gives me hope that there will be a cure found or medication for fatigue and joints pain that really work well.

I guess we are just a few years away from this. When that day comes all off our friends here can talk about stuff other than joints pain and fatigue.

Hope is our greatest strength. Let's plan for a miracle.

[happylife]

One example of research that gives hope

https://www.medicalnewstoday.com/articles/318824.php

[araminta]

A 14 hour shift which included working all night?

Please have a think about other work options.    I don't see how this would be sustainable in the long term for anyone, with or without Sjogrens.

[Linda196]

The 14 hour shift is something you kind of grow into and get used to, a standard 12 always includes at least half an hour pre and half an hour post for change of shift report, and in my case I lived a 50 minute drive from my place of employement, and 10 minute changing time each end, so regular, no OT, no delay shift was 15 hours away from home, leaving 9 hours at home for sleep, as long as you didn't do anything foolish like eat, talk to family, or (Heaven forbid) parent your kids or maintain your house! And that was 4 or 5 shifts in a row! It probably breaks all kinds of health and safety rules, and yet I did it for 30 of my 35 year career, mostly nights, because it was preferable to working  8 hour shifts ( that usually morphed into 12 or 16 anyway) and changing from days to evenings to nights, for 10 to 14 days in a row without a day off.

Kristina, learn from my mistakes! I was lucky in that all those years of leaving in tears, having NO life, and apologising to my family for saying " I just can't" so often, that it didn't leave me totally emotionally burned out regarding my work, and I still was able to get satisfaction and enjoyment from it, but as I said, that was luck! Don't let the job rob you of your life. You don't want to eventually look back at a job you had a passion for with resentment or bitterness.

Flares come and go, but you do have to give in to them a bit. If there's any other option, a change of schedule, a different work load, or even a different job, try for it! It beats working yourself to death! Meanwhile, alternative pain relief tactics helped me a lot over the years; meditation, biofeedback, TENS units, and RX antiinflammatories if you can tolerate them. I've also used various joint and muscle supports for specific issues many times over the years, and other than hand splints, they have never interfered with my work. A good physio and/or massage therapist can become your best friend.

Most importantly, and most difficult, learn to say NO. No to overtime, switched shifts, and additional duties. If necessary and possible, get your doctor to back you up. And be careful of things that sound like a good deal, I took many courses over the years, thinking in the moment that it meant some time with shorter hours and sitting in a classroom....backfired when I went back to work to find additional duties tacked on because of my new "skills" LOL.

My initial diagnosis of Sarcoidosis was when I was 28, followed by DX of mylositis, Sjogren's and polymyalgia and I managed to work until I was 53 when I went out on long term disability, which enabled me to take a full retirement at 65.

[Carolina]

There is a new use of an old drug, Naltrexone, for the relief of pain.

It has been amazing for me.  The dosing is called Low Dose Naltrexone (LDN).

The side effects are minimal and disappear quickly.  I cannot take opioids or NSAIDS.  LDN has taken away most of my pain.

I have the prescription from a Duke Pain Management doctor.

I take it regularly.

Regards,  Elaine

[Kristina09]

Thank you guys,
      I?m feeling a little better today.
      Thank you happy life, that is encouraging. It?s difficul to keep hope but I will try.
     
      Yes Araminta you are right, 14 hrs at night is crazy and unhealthy, but as a nurse it?s life. I am trying to find something easier on my body.
     
      I?ve been a nurse for 16 yrs, you do kinda get used to that schedule.  Day shift is just too hectic for me, I switched to nights years ago and now instead of a full time 3 shifts a week I?m down to 1 or 2 because I can?t physically do it anymore.  Yesterday was so hard for me physically that it beat me down emotionally. 
     
       Linda you are absolutely correct, learning to say no is crucial. 
      I will ask about the LDN Elaine, thank you.