Chronic Fatigue and Lupus

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New Member

Date Joined Jun 2007
Total Posts : 3
   Posted 6/11/2007 4:50 PM (GMT -6)   
I have recently been diagnosed with Systemic Lupus. I have been dealing with it for about a year and didn't know what it was. I have a lot of joint pain and muscle aches; but my biggest complaint is major fatigue! I can't seem to get anything done anymore and I used to be really active. Does anyone out there have any suggestions as to boost my energy? Is there anything my doctor can prescribe for this? Right now I am on Plaquinel and Lexapro.
Any help would be great!!  tongue

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2007 5:58 PM (GMT -6)   
Hi Bunny, and welcome to the forum. While I'm sorry you've been diagnosed with SLE, you've come to a good place to ask questions and to receive moral support.

Your question about major fatigue is one that most of us deal with, and for me it is more debilitating than any other symptoms that I have, including some pretty severe pain. I wish I had an answer for you. Have you discussed this with your rheumy? CellCept has helped me a great deal, but it suppresses your immune system and has lots of potentially serious side effects so may not be for everyone. I've already had to decrease my dosage because of a side effect and the fatigue is back again. It's really a trial and error process as well as a process that is aided by open communication between you and your rheumy.

I'll be interested to read some other responses you get from the terrific folks here because I find myself learning something new just about every day. Lots of luck.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 6/11/2007 5:58 PM (GMT -6)   
I am sorry to hear you have been dx with Lupus, but glad you found us. This is a great place and I know you will like it here. There are a lot of wonderful supportive people here truly wanting to help others get through the ups and downs of this disease.

Hopefully the Plaquenil will help with your fatigue, it did with mine. I don't know how long you have been taking it but it can take 6+ months before you notice a lot of improvement.

For me the fatigue was very hard to deal with and it's something I talked to my rheumy about. She said it is the number one complaint of people with Lupus or another chronic illness and unfortunately there is not much that can be done to help it except, eating right and resting when your body needs it. Take naps during the day, if you can, that one has been a hard one for me as I work but I do rest at home when needed. There is a med out there that some doctors use, it's called Provigal. I never tried it but have heard good things about it, I didn't want to take any more meds and tried harder to manage my time and learn to listen to my body better.

I am sure others will be along shortly to offer some more advise. Please let us know if you have any more questions and keep us posted on how you are doing. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 6/11/2007 7:40 PM (GMT -6)   
Welcome to the forum. I wish I had an answer for you. The fatigue, indeed, as others say, is the most difficult thing to deal with. For me, it just hits suddenly. Sometimes if I overdo myself, then my body suffers. Sometimes out of the blue, I am tired and have no energy to do anything. I used to be very active also, but now...... I will listen more to my body and follow the feel from my body. Resting and not work yourself out, including doing housework, will help. If I have to clean up the house, I do one task at a time. Hope you find more advise from others

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/11/2007 8:46 PM (GMT -6)   
Hi Bunny,
  Another welcome coming your way! I'm also sorry you have been dx'd with Lupus. Like the others said, the fatigue is awful! They all had some great advice for you. Hopefully, the Plaq will kick in soon and give you a little boost of energy. Your doctor may have to try you on different meds to get the right combo to help you feel better.
  If you haven't read the Spoons Theory, it is a great story that helps you learn to pace yourself on a daily basis and will also help your family better understand what your going through. This is the link.  I hope you like it! It has helped alot of us here.
   I hope you get some relief soon. Please post again soon and keep us updated. You will be in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

New Member

Date Joined Jun 2007
Total Posts : 3
   Posted 6/11/2007 9:45 PM (GMT -6)   

Thank you all for the wonderful replies. It does help to know I'm not alone. I have just started on the Plaqunil so I haven't felt the effects from it as of yet. The doc says it can take up to 6 months and that was very discouraging to hear. But, I have been hearing the same thing over and over and I know it to be true is to listen to my body when I need a rest and give myself permission to take it easy. It's been hard for me to do that but I am now excepting that is what I have to do and let the housework fall to the way side. I am now working full time and it has been a struggle especially in the mornings. Have you guys been able to keep working full time?

Thank you again for the responses.


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/11/2007 10:06 PM (GMT -6)   
Hi Bunny, there isn't much I can add to what the others have said. I do know what you mean about the horrible fatique. I have been on plaq. for the past 6 months. Just the past couple of weeks I have felt surprisingly better. Not like new but diffinently better. I have other physical problems and am on disability but there are a lot of people here that work full time. and you are right. somtimes ya just got to let things go. If it can wait let it wait. Life will not stop if your laundry isn't done or you have dirty dishes. Plus there are things like paper plates! My favorite LOL.

again welcome to the group
God Bless
 Lupus.Possible CREST,COPD, High B/P, Oteoporosis
xanax,triam , vicodin.5x3, Evista,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Veteran Member

Date Joined Dec 2006
Total Posts : 707
   Posted 6/11/2007 10:21 PM (GMT -6)   

Hi Bunny. :-)

I'm kinda new at this lupus stuff too and am sorry to hear you are experiencing the fatigue so bad.  It is a constant battle in a lot of our lives.  I am just now beginning to understand that the activities I do have a direct relation on how bad the fatigue is and am learning more how to read the signs of lupus related fatigue as far as how much rest I need versus how much I feel I can do.  There are days like today where I worked 10 straight hours for work and actually surprised myself making it all the way thru and there are days like yesterday where I just had to literally FORCE myself to get up off the couch to take a bath.  I have really learned a lot from reading all the post her too as far as what signs to look for to know I should so down and such.  I currently am not on any meds like Plaquenil or Cellcept but am trying to locate a new rheumy and primary care physician who can help me find some kind of balance of meds to get my pain under control and the lupus flares under control.  Keep us updated. 

Diane (ocean1)
Soft tissue joint disorder 2007 (can't spell or pronounce the name), Lupus Sept. 2006, IBS 2004, Chronic Hives 2002.
Medications:  Allegra and Zantac; Xanax PRN; Lunesta and Ultram PRN.

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 6/11/2007 11:16 PM (GMT -6)   
Hi Bunny,

yes the doctors do say it can take months to work...But for me I felt better in about a month. I could feel a big difference..JUst be kind to yourself and listen to your body.
Enjoy what you can today and leave the rest for another day.

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 6/11/2007 11:49 PM (GMT -6)   
Hi Bunny,

Welcome... your symptoms are very much like mine. My first complaints were joint pains, weakness, and fatigue with frequent low grade fevers. I was put on Naproxen then and took that until I started getting rashes, I then saw a new rheumy who put me on Plaquenil. I wish I had started it from the beginning because now after 5 months of taken it, I feel a lot better. Thinking about how much time I could have been feeling like this. I'm not 100 percent however I don't think anyone is unless they go on long term remission but it does help loads. The plaquenil is supposed to help with fatigue and I'm finally thinking its working there for me too. Provigil was mentioned also although many docs shy away from it because often people seem to go beyond their limits not realizing that they are still sick and need to take it easy and end up getting worse. Regular exercise (not too strenous maybe light cardio a few times a week) should help with it also.

Take Care
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 6/12/2007 7:14 AM (GMT -6)   
Hi Bunny. I really can't add to much to this post as everyone else as about covered. The tiredness for me is sometimes almost unbearable. Sometimes I can push through it, most times I can't. When this happens I have to lay down until it passes.
I am sorry you have Lupus, it certainly changes your whole life, but it doesn't always have to be for the worse. I hope you can find some relief soon, please keep us posted.
Take care,
Connie smurf
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

New Member

Date Joined Jun 2007
Total Posts : 3
   Posted 6/12/2007 10:33 AM (GMT -6)   
Hey everyone! I feel better just reading all the great replies I've gotten. Someone had mentioned that they started feeling relief from the Plaquinel after about a month. For those who are on this medication, can you tell me your experiences with it?
Thanks much  confused
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