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catlady04240
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/12/2008 12:41 PM (GMT -7)   
hi my name is Dawn and i am 32 yrs old and have had SLE since 1995 and lately i have been having soreness all over and headaches and tired alot and my dr even touched to area on my shoulders and i thought i was going to jump off the chair  it hurt so bad I think that i may have fibro as well I really dont know how to go about this i hurt my hands and i could sleep all the time Well i have had multiple problems withthee lupus I had blood clot in my lung in 96 and multplie kidney bipsies and a subdural hematoma in 2002 that i almost died from so i am just wanting some answers i know that my lupus is not active but then why am i so tired and sore all over and feel that i can never get enough rest thanks Dawn

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 10/12/2008 1:34 PM (GMT -7)   
Look at this information on fatigue and it might help you to understand what is going on.  You are not imagining your fatigue and it could be the result of damage to your body, fatigue being the only manifestation of your lupus, or someothing else.  Just because you don't have other symptoms does not mean that your lupus is not active.
 
 
I think that all of us wrestle with fatigue to some degree and there are probably many different causes. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2008 2:00 PM (GMT -7)   
Hi Dawn,

Welcome to the forum. Are you taking any rx meds?? If so, do you mind sharing what they are?

Yes it does sound like it could be fibro and lupus. Ginny and some of the others here have both and that sounds really difficult. She could tell you more about the fibro end of it. I hope you post on the fibro board too.

Are you sleeping well at night? We heal in our deep sleep, so if you aren't getting a good 4 hour block, its hard for your body to recover. Most of us also need some type of prescription for depression as well . . . and most of us resisted that at least at first. But an anti-depressant can help quite a bit.

Glad you found us. It is amazing how helpful it is to be able to come here and share with others who understand.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


catlady04240
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/12/2008 4:42 PM (GMT -7)   
HI Rosie,
                   I do take Rx prescptions. I take Cellcept 500 mg atually i take 3 of these twice a day, meterprolol 50mg twice a day, prozac 60 mg a day, Diovan 160mg a day,protonix40 mg once a day,prednisone 4mg a day, Oscal  with vid 2 twice a Day, womens multivit 1 twice a day, baby asprin 81 mg once a day, tyenol mostly daily 4 tab of extra stength at a time.
 
I know that I can have no symptoms of the lupus but i just have never been so sore in my life i find it hard to do things i have a hard time watching a movie without fallingg asleep. I try ot get to bed by 9 every nite but i usualy get up two times for some reason and i know that i wake up i can barely move i find it hard so i dont know I know that I dont see any of ym drs till next month so i dont know if i should see if there is someblood work that i can have done.
i work full time and i get up at 4 am usually and that is tiring i am ready for bed at 7 but i cant cause i need to take care of my daughter but i dont have the energy to do things with her do you understand. thanks for listening Dawn

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2008 4:55 PM (GMT -7)   
(((((((( Dawn )))))))

Wow! So much going on. I really feel for you Dawn. Its so hard for all of you young moms. *sigh* I remember dreaming about the day I could sleep-in when needed.

YES! Call your doctor tomorrow and let him know how bad you feel. You sound like Ginny, who has major lupus, but is dealing with a fibro flare right now.

One non-medical thing I can suggest is sleeping in a cool room with electric blanket or heated bed topper. For some reason, this helps both fibro and lupus pain. It might serve to help keep the muscles more relaxed while we sleep. I know you don't have extra time, but a hot soak in the tub might help too.

With so many meds, have you ever talked to a pharmacist to consider the best way to split them up over the day? It might be really helpful if you haven't already done that.

Hopefully some of the others will have some ideas for you. I'm sorry I don't have any great suggestions ...but make sure to try the warm blanket.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 10/12/2008 8:17 PM (GMT -7)   
Dawn
Welcome, before they figured out I had fibro, i was like every day I had been hit by a semi. and that went on for a year. Once they figured out the fibro and gave me some meds to help me sleep after about 6 weeks I realized one day I wasn't in pain.

Getting the sleep is number 1 in getting thur that part. I soak in the bathtub with very hot water to help relax the muscles. I also take Soma at night and a Lortab. I try not to take them during the day especally if I know I'm going to have to drive.

Learn to listen to what your body is telling you and learn your limits. good luck with every thing.

Lynn
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 10/13/2008 7:32 PM (GMT -7)   
Greetings, Dawn,

Welcome to HW. I am so sorry to hear of your terrible pain and fatigue. I had almost the same symptoms and it took forever for a diagnosis. They just recently concuded that I might have fibro, also, so that explains a lot. I now take numerous meds but it is certainly worth it since the meds have actually helped me quite a bit. I hope you can see your doctor soon to find some answers to your many questions. It might be time to try out some of the meds to see if they can help you with the extreme fatigue and with your terrible pain.

Prayers to you!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2008 4:44 PM (GMT -7)   
Hi Dawn and welcome. I don have much to add to the great information that the others have already given to you. I just wanted to welcome you and let you know that I think you will get a lot of support from our forum. I'm glad you joined us.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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