Wit's End

[Dreamer]

Hi,

Have just been diagnosed with Lupus.

Have had R/A for 19 years. Have Remacaide infusions every 4 weeks, plus take predisone, arava and brextra.

Was just recently released from hospital for blood clots in lungs and pneumonia.

Am trying to be optimistic but it's becoming harder and harder.

The fatigue is beginning to impact my life in a major way. I still work, 50% time, yet on my days off, I sleep most of it away. Any suggestions?

Thanks,
Pat


:wave:

[Christine UK]

hello pat and a warm welcome,
you must be in shock,i do hope u have a good rheumy who specialises in lupus ??? its so important so u get the best advice meds and support,we are here anytime for you ok.
just wondering if u have hughes syndrome/sticky blood ???because of the clots ?

[S-J]

Hi Pat, :flowers:

I am sorry to read that you have been so unwell.

I had the same three years ago and it left me pretty exhausted for many months afterwards and, like you, I was working. You must continue to rest as much as possible.

I was diagnosed with SLE 7 years ago, followed by Hughes three years later. As mentioned by Christine it is something to consider asking about.

I hope you feel brighter soon...keep it touch.

Love

Sally X :flowers: :flowers:

[Star Lady]

Hello Pat,

I just wanted to welcome you to the Lupie family!! There are lots of very knowlegable people who visit the message boards, and they are always there to help.

I really do hope that you start to feel better soon.

Take care and make sure that you get plenty of rest.

Love..........Star Lady x :flowers: :nurse: :wave:

[rhia]

Hi Pat

So sorry your not well, hope you feel better soon :wave:

rhia

[RosemaryP]

Welcome the fatigue knocks us all. You have come out of hospital with pneumonia, that alone will take quite some time to pick up from. One thing I did find after pneumonia was to try and rest more, in the end I got forced bed rest in hospital while waiting for surgery for a month. Much to my shock two days before surgery I got up one night and could not work out what was wrong, it took 2 hours to wrok out I was not in pain, for the first time in 3 years. I have made sure that it never happens again like that! I rest if I have been out, the next day I have a real quiet day.

[raggedyann1]

Dreamer,

There is a possibility that the remicade infusions have caused your lupus.
Some patients develop the anti-dsnda antibodies from remicade and others develop lupus like symptoms.

apparently this is NOT drug induced lupus that goes away when treatment is stopped.

I would talk with your rheumotologist about the continued use of Remicade.

As for the fatigue there is no easy answer that I am aware of. I try to rest when my body tells me to. And to not over do things.

Take care and I hope you are doing better soon.

Karen

[gladm]

Hi Pat, and a big welcome to you. :wave:
Sorry to hear that you are having a bad time. :(
Yes, the fatigue impacts a lot of us in a really big way. I had to quit my job just over a year ago because of the fatigue and pain. :wacko:
Hope you enjoy being here. love gladm.

[martygas]

Hey Pat,

So sorry that you are feeling so bad. Could you take a leave of absence from your job. Rest is so important to getting over a flare. Maybe you could talk to your dr. about putting you on Plaq. for your lupus. It is supposed to stop the disease progression!!! It takes about 6 weeks to 3 months for it to work. My daughter just started on it in July. After 8 weeks she was feeling much better, until she went in the sun, that is! Try to stay away from the sun also, as many lupies are sun senitive!

LOve, Cindy :wave:

[LameWolf]

Pat,

The hardest part I find is in pacing myself - maybe this is an issue for you too? Fatigue is a real pain in the posterior, isn't it!! Hope you feel better soon

Bright blessings

[Dreamer]

Hi All,

Thanks for the warm thoughts and wishes.

Am having a bit of trouble navigating this site. Am sorta PC challenged!

Pat

[Dnabella]

Dear Dreamer,

Before long you will be navigating this site like a pro!

I know that all of us wish that fatigue was not a part of this disease...it does get better once you have the disease under control but for alot of us it does not go completely away...I have learned to live with it..but I could not imagine working even 50%. Is there anything you can do to lessen your work load or perhaps bring work home so that your hours of being out and about are lessened?

My thoughts are with you!

Love Donna

[lisafree]

Hi Dreamer,

So sorry you are feeling bad. I think everyone here can relate to the fatigue. It can be HORRIBLE. Working can be very hard. I still work some. I like working some (get to see hubby since I work for him). If you can pacing yourself is the best awnser for fatigue.
I also take wellbutrin in the morning and in the early afternoon (not to late or I will be exhausted, but to wired to sleep). This increases my energy level and allows me to act more normal, but doing too much can still knock me for a loop. I havent heard of many other people on this site taking wellbutrin for fatigue, but it helps me. My rheumie perscribed.

Welcome to the site. You will find it very comforting and filled with knowledge.

Lots of hugs,
lisafree

[pgm590]

I was diagnosed with lupus 6 months ago. I've had it for 20 yrs. The fatigue was getting worse. I did manage to continue working full time. After work, I would sit on the couch and literally fall asleep in less than five minutes-didn't wake up until the next day. On weekends, I could sleep up to 20 hours a day. After getting up in the morning, I felt good. Within 2 hours, I felt overwhelming fatigue at which time I would take a nap--four hours long. No depression, just fatigue.
I finally went to a reumatologist for diagnosis [my mother has lupus also]. I as started on PLAQUINAL and within a few weeks I felt like a normal person. I can't believe that I suffered for 20 years with the fatigue. The medicine has also helped alleviate recurrent sinusitis, joint pains, and stomach problems. Try it!