do you cope?

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Regular Member

Date Joined Jul 2006
Total Posts : 29
   Posted 10/14/2008 2:58 PM (GMT -6)   
I was wondering how you guys cope with working? I have not worked in 5 years due to being sick all the time and fatigue. I was diagnosed with Fibromyalgia (march 08) and Mixed Connective Tissue (Sept 08). It has been a rough ride these past 10 years for me. I had a parathryoid tumor which causes severe osteporosis in my hips (I am 31!) and have fractured both of them one after another last year and had to use a cane with physical therapy. I was misdiagnosed with Crohn's 10 years ago taking Immunosuppresants only to find out I  do no have crohns.  I started Plaquenil in July and it has helped me with the fatigue and some pain.  I take only 2-3 naps a week instead of everyday. I take muscle relaxers for the fibromyalgia. I think I am ready to start work Part-Time but am scared. I have an interview coming up Thursday at a Retail store but am hesitant to actually go. I would hate to start working and then have to quit. I would like to work for a number of different reasons. I miss working and being part of a team, I need a break from my 3 kids :) and of course who couldn't use the extra money now a days. I used to waitress a lot but have decided not to do that with all my pain.
Today I feel crappy and am dealing with a migraine...which I get 3-4 x a week. I know the days I do too much I am paying for it for days and have to limp. Then there are days I feel so good and wish I was working. If I had to go to work tonight I know I would have a hard time. Some days I can't even unload the dishwasher or do laundry.
Any Ideas????

I also have inflammatory arthritis, hypothyroid, anxiety, and Gerd

New Member

Date Joined Oct 2008
Total Posts : 17
   Posted 10/14/2008 3:57 PM (GMT -6)   
Kitkat, hi i'm new to the group and i just tell you that i work 40 hours as a CNA in a nursing home and i am very tired at the end of my days. I have lupus nephritis have had this since 1995 and lately my symptoms have been more like fibro which i think that i may have but no diagnose yet. I am sore all over and so tired all the time and dont want to do much when i get home but i make myself do so much when i have to take care of my daughter but i rather be sleeping you know what i mean. somedays i dont want to do things eitther but i also get headaches but i feelt aht i get those often so i dont knwo i think that i have fibro cause i wentotthe rhemy the other month and i thought i was going to jump off my chair because he touched me just rright on my shoulders and neck that hurt so bad I will tlak to you later . I just try to relax when i can. Dawn

New Member

Date Joined Oct 2008
Total Posts : 4
   Posted 10/14/2008 4:12 PM (GMT -6)   
Hi Kitkat, I'm new to this chatroom and Lupus all together. I was diagnosed July 2006 with lupus Nephritis, RA, and acute UTI's. I still work a 40 week for a non-profit. I haven't had a flare since I've been diagnosed. I take my meds everyday (Predinose 10mg daily, prenatal vitamins(I'm anemic); Cyclosporin 75mg twice daily, plaqenil, and ampicillin 500mg every 8 hrs (for my current infection).

I want to let you know that you're not alone, I'm 29 and I take naps like a 2-year-old. I travel with my job on occassion and the best advice I would give is to REST as much as possible. I take the prenatal vitamins because I still felt fatigued with the regular over the counter vitamins. I have a lot more energy now. I eat fruit constantly and lots of green leafy veggies. I have a VERY ACTIVE 11 year old, he keeps me on my toes. I try to take naps when I can and if I can't close my eyes at that very moment I will prop my feet up in a minute! I find that getting a pedicure at least once a month helped with my ankle swelling the massages help the blood flow in my legs. I stay under my doctors care, but you have to know your limit, I do have work from home days where I can sleep until 9 or 10 then I'll get on the computer and work. Its a nice quiet day working at home in my jammies.


Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2008 6:31 PM (GMT -6)   
HI Kitkat. I finally had to quit my job about 2 and a half years ago. I worked for almost 3 years after I got sick, but it got to the point where I wasn't able to do all that my job required of me and also I had no energy left for my kids and husband. I am fortunate enough that my husband earns a good enough living that I could quit. Now I do have more energy to spend on my family, but like the rest of you, I sometimes have to rest and sleep a lot and how I feel can be pretty unpredictable. I just can't imagine working anymore.

If you do go back to work, it would be really important to listen to your body and make sure you got plenty of rest when you are at home.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 10/14/2008 6:46 PM (GMT -6)   
Hi Kitkat,
Wow, you have been through a lot. Holy smokes.  I can completely understand how the work situation is so hard for you. 
I also have fibro.  Makes working 1 million time harder when you have it plus lupus.  It sucks.  I'm right there with ya....
I had to become my own boss.  I am a self employed photographer!  I can make my own schedule, and take on as much or as little work as I can manage. Of course, being a business owner isn't easy.  Has its stresses.  But I wouldn't be able to work if I wasn't self employed.  Helps when I'm the only employee too:)
Do you have a hobby or past time that you can make money at?  That's how I went into photography.  I loved it as a hobby, had all the gear, so it worked great!  I've been at it for over 7 years now.  Try some brainstorming and see what you can come up with!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 10/14/2008 7:46 PM (GMT -6)   
Hi kitkat,

I used to work retail, and I had to quit 4 years ago because it was tearing my body apart. I only worked 4 hours a day, but after being on my feet the whole time I would come home exhausted with my joints aching so badly.

I understand the need to want to work. I have been trying to find a part time job lately as well, but something that doesn't have me running around constantly. That's the hard part, because I'm limited in what I can handle.

Good luck!!
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
Also a wife and mother of three.

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