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Old 03-18-2010, 02:08 AM   #1
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Unhappy A full days work with sjogrens

Hello everyone , i was just wondering how people manage to work full time with sjogrens , i also have it , and find working full time very tiring, but cannot afford to give up my job, i have to get up at at 5am every day, and don't get home at night till around 6 .45 pm, i am absolutely exhausted all the time ,and sometimes i wonder if pushing my self like this every day will make things worse. look forward to any comments.

 
Old 03-20-2010, 10:31 AM   #2
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Re: A full days work with sjogrens

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Originally Posted by sparkle16 View Post
Hello everyone , i was just wondering how people manage to work full time with sjogrens , i also have it , and find working full time very tiring, but cannot afford to give up my job, i have to get up at at 5am every day, and don't get home at night till around 6 .45 pm, i am absolutely exhausted all the time ,and sometimes i wonder if pushing my self like this every day will make things worse. look forward to any comments.
You have a very long day and that does contribute to your fatigue.

If you didn't know, I just want to make you aware that your health condition does qualify you for FMLA leave from work. That is, if you've worked at your job for at least one year (1250 hrs) then you have job protected leave. You should check with your HR dept. and have your doctor fill out the necessary forms.

You never know you may need a day off here and there to recover and not have to worry about keeping your job. Good luck

 
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Old 03-21-2010, 02:10 AM   #3
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Re: A full days work with sjogrens

Thanks for that , i didn't know that as i never have a lot of time off work due to illness, but i will look into it.many thanks.

 
Old 03-24-2010, 03:46 PM   #4
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Re: A full days work with sjogrens

Hi Sparkle16,

I get up at 5:15 and normally don't get home until 6:30. This week I am working two late shifts so won't get home until 8:45 because I need the $$. I know it is so hard to push yourself. I think that is why I crash hard on the weekends. I can't afford the FMLA because I live paycheck to paycheck. Try to rest as much as you can. I don't have children right now, so I can sleep in a bit on the weekends and pace myself.

You might also look into disability options in your state or social security. If it gets real bad that may be an option for you. Good luck to you and keep us posted!

 
Old 03-25-2010, 01:22 PM   #5
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Re: A full days work with sjogrens

hi Angie10, thanks for that,yes it is hard to push yourself everyday, it nice to know i'm not the only one that has to do this (by the way i'm female not male as it says on this message board- pressed wrong button & can't get rid of it) anyway i assume you too have sjogrens, just wondering if you have any tips on how to deal with the dry eyes , tried loads of stuff & nothing seems to work, i'm like you and have to rest a lot at weekends as it's the only chance i get, i will carry on for as long as i can, oh and i'm in the uk, nice to hear from you, and take care of yourself. and don't work too hard.

 
Old 03-25-2010, 02:24 PM   #6
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Re: A full days work with sjogrens

Hi Sparkle16,

I haven't been officially diagnosed with Sjorgrens but have all the positive bloodwork for it (anti-ro and anti-la, rheumatoid factor, High ANA, sed rate, crp, etc.). I also have dry eyes, mouth, and skin. Unfortunatley, my rheumie is on vacation this week so I cannot go over what has gone on this week for me. I had horrible eye pain on Sunday and stayed home Monday. Went to the eye doctor and he put a plug in the duct of my left eye. He also gave me lubricating drops and steroidal drops.

I noticed the only thing that works to reduce the pain is lubricating my eyes every couple of hours. I haven't noticed much with the plug, unfortunatley. I just bought some lubricating gel drops (thicker formula than regular drops) today that I am going to try tonight. I'm hoping that it will work for the pain and dryness when I wake up in the morning.

My eyes starting getting really bad a month ago and I finally had a positive Schirmer's test with the eye doctor. I'm hoping when I touch base with the doctor that she will agree that it is Sjorgrens. Like you, I feel like nothing really keeps my eyes moist for too long.

It can be very frustrating not knowing why this is going on and feeling like we have to go through a rigorous routine to function well enough. I'm working late again tonight after being out sick Monday and Tuesday with the extremely painful eye symptoms. Bright light - not good either. However, I know that this weekend I am going to be a ridiculously lazy individual so that I can come in ready to go next Monday.

Try to pace yourself as best you can. Are you seeing a rheumatologist? Mine has been very helpful in this medical "journey". Keep me posted!

Take care,

Angie10

 
Old 03-27-2010, 10:04 AM   #7
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Re: A full days work with sjogrens

Hello Angie10, hope you're ok , i too have been off work for a couple of weeks(sick) how are your employers with your condition are they understanding ? mine aren't ,had to visit the company occupational health nurse and she more or less told me i had to '' PUT UP OR SHUT UP !! and was no help at all , i have to stand all day ,and it gets a bit tiring, and they refuse to give me a sitting down job, think i will have to get the union involved. and what makes things worse is that i wake up several times a night needing a drink because my mouth is so dry, wondered if you have the same problem, anyway i hope you have a nice restful weekend, hope to hear from you soon.

 
Old 03-29-2010, 05:26 AM   #8
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Re: A full days work with sjogrens

Hi, sparkle16,

For dry eyes, while it is expensive (though each vial, if you have a sterile little cup to keep it in, can go for 3 days!), Restasis is a miraculous product for most Sjogren's patients, as it increases, without the nasty systemic oral steroid problems, tear production, getting to the source in the most safe manner. Oral meds that can help are evoxac (indicated for mouth only, but it helps my eyes a bit), maybe salagen (less effective than evoxac but some insurers will only cover it as it has a generic--argue with them though, as Evoxac is actually its own little drug class as it stimulates the parasympathetic glands and was created JUST for Sjogrens)... Be sure if they are itchy or red/swollen lids, you get checked for conjunctivitis, which calls for steroids...

Plaquenil is also--when pain--especially joints--and fatigue are present, indicated for Sjogrens related arthritises, though if you have RA with it, by all means go for the biologics: Remicade, Humira, Enbrel, or Orencia (unless you get colds/flus a lot or have TB)...

Now most MDs hate being told this, but it IS safe to take up to 5mg prednisone (or my preference, 4mg methylprednisolone as it doesn't tinker with salt levels so much) a day without killing your adrenal function... Though being monitored a month in with an ACTH stimulation test would be keen to be sure Cushing's or Addison's doesn't become a risk if your body somehow needed less than those 5mg--not likely with an AI disorder (Addison's is, though, far worse than Sjogren's, I can confidently say, but also not often associated with it or though to be caused by it--it is caused by either destruction of the Adrenals or extreme suppression of them from high dose chronic steroid use)... The 5mg a day might be exactly what gives you energy and chills out your burning eyes enough to not need much else (still do restasis if at all possible as it prevents damage as the biological do for the joints)...

Hope this helps... It is something I live with... The one nightmare for me that is also a salvation for some is methotrexate... It killed my hyperactive immune system to extremes though, making me wiped out... But some are utterly relieved, so take my exhaustion with lots of salt (and be sure you have lots more water and also a bit more salt in your diet so you don't just urinate it all out fast!)

Take care!
laura

Last edited by Administrator; 03-29-2010 at 08:50 AM.

 
Old 03-29-2010, 10:45 AM   #9
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Re: A full days work with sjogrens

Hi Laura,

Thank you for posting such helpful information. No wonder I have been craving salt and water a great deal these days. I think I'm in a bit of a flare right now.

Sparkle16 - to answer your questions below:

I have a job where I can sit and that is extremely helpful. The only thing that has provided relief from agonizing bouts of arthritis pain is injectable methotrexate. I could not tolerate the pill version because it wiped me out. The injectable version is so much better. I actually switched to methotrexate when I became allergic to both the generic and name brand Plaquenil. The plaquenil stopped working anyways.

Do you have a rhematologist knowledgable in Sjorgrens? If not, please see if you can find one that will write you a note for the nurse who seems not to get it. Unfortunately, there is not a lot of understanding about Sjorgrens with the general community, so it helps to have someone on your side. Keep me posted!

Angie

 
Old 04-21-2010, 11:04 AM   #10
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Smile Re: A full days work with sjogrens

Quote:
Originally Posted by sparkle16 View Post
Hello everyone , i was just wondering how people manage to work full time with sjogrens , i also have it , and find working full time very tiring, but cannot afford to give up my job, i have to get up at at 5am every day, and don't get home at night till around 6 .45 pm, i am absolutely exhausted all the time ,and sometimes i wonder if pushing my self like this every day will make things worse. look forward to any comments.
A huge help to this condition is MANUKA HONEY UMF 20+ as it really builds the immune system naturally!!
I have only just learned about a colleage suffering with this she has had to take lighter duties of work and more reasonable hours which has helped even when we arent ill its important to consider our health dont take it for granted lifes too short enjoy every moment even at work.If your boss cant help, look for something else starting later in the morning would definately help.

 
Old 05-24-2010, 05:29 PM   #11
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Re: A full days work with sjogrens

Hello across the Pond, Sparkle,
I have Sjogrens, am female and 61, and work full time for a law firm (stressful!). Tiredness is a part of my week, just like yours, and I'd take Angie10's idea to crash hard on the weekends. I do. Sometimes I sleep most of Saturday and Sunday away, but I need it. I used to feel guilty doing this, but not anymore; we have to look out for ourselves! Have you tried Vitamin B12 shots or tablets? Might want to check with your doc about them and see if you could take them. Whatever you do, DON'T GIVE UP! Rest as much as you can, get to bed early during the week, and feel good about doing that for yourself.

 
Old 04-29-2012, 12:43 PM   #12
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Re: A full days work with sjogrens

I retired early because of scleroderma and Sjogren's. Started Pilocarpine HCL a few months ago and it has increased all of my secretions enormously. Also some help from punctal plugs. I keep humidifiers going day and night as air here is dry. I went gluten free a year ago and it has eased many of my other symptoms. The dry eyes are just such a huge problem still, and now hay fever is further complicating my problem. Suggestions requested. Thanks.

Last edited by ablondegypsy; 04-29-2012 at 12:44 PM.

 
Old 04-30-2012, 05:44 AM   #13
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Re: A full days work with sjogrens

Quote:
Originally Posted by ablondegypsy View Post
I retired early because of scleroderma and Sjogren's. Started Pilocarpine HCL a few months ago and it has increased all of my secretions enormously. Also some help from punctal plugs. I keep humidifiers going day and night as air here is dry. I went gluten free a year ago and it has eased many of my other symptoms. The dry eyes are just such a huge problem still, and now hay fever is further complicating my problem. Suggestions requested. Thanks.
Do you mind if I ask you if you were able to retire early on disability? If you prefer not to answer, that's fine. Thanks in any event.

 
Old 04-30-2012, 01:43 PM   #14
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Re: A full days work with sjogrens

I requested a layoff and used unemployment to bridge the gap until I was 62, then took the cut to be able to stay home. It seems like it would be difficult to prove exhaustion and muddy thinking as being linked to disease and didn't have the severe dryness issues at that time. Hope people are successful with their claims because the disability is REAL and debilitating. Good luck to all.

 
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