So Tired . . .
I am new to the site...I have been having problems for a couple of years now, but in the last couple of months I have had 2 visits to the ER and have just been feeling crummy all the time! I am seeing a new PCP and he has recently diagnosed me with Lupus. My grandfather has it, which is rare for men, but I am starting to get scared! I go to see the Rheumatologist next friday. I am just so TIRED and worn down. I go to bed every night at 8 and dont wake up till 7 and its like it is such a big deal just to drag myself out of the bed. I have been having off and on fevers sometimes as high as 102, infection after infection, sore aching joints, and headaches! I am only 22 and feel like I am living in the body of a 70 year old woman. My boyfriend has been very supportive, but I know he is so tired of hearing me say "I just don't feel good baby". He has read up on lupus and last night we read the Spoon Theroy. I just started crying as we were reading it together...I can so relate to how the author feels!!! I'm just very frustrated ...I JUST WANT TO FEEL GOOD!! Is there any advise someone could give me about the fatigue and the achey joints. . . Does anyone know what I should expect when I go to the Rheumatologist? [/quote]
Unfortunately, the fatigue is the most misunderstood aspect of Lupus. Many people just cannot understand what we mean when we tell them that our fatigue is truly debilitating - we can't do anything! Getting out of bed and brushing our teeth feels like a major accomplishment!
Many say that their use of Plaquenil has helped them with their fatigue. However, it takes weeks of use before you feel any benefit from Plaquenil, so if it is prescribed for you, you must be patient.
We are all told that the best way to deal with the fatigue is to try to do some form of exercise every day (non-jarring). Like, taking short walks, swimming, beginners yoga, beginners Pilates. It really does help a bit with the fatigue and also helps us to sleep a little better!
I am glad that you and your boyfriend read "The Spoon Theory" together. Since he is very supportive, it is a good idea that you both learn as much as you can about your lupus, your medications and their side-effects, and your treatments. Also, it will help both of you to make decisions about the lifestyle changes you will need to make in order for you to manage your disease.
I cannot tell you what to expect from your next appointment as I do not know what your doctors have done so far. But, if you have any questions afterwards, please do not hesitate to come to us and we will help you as much as we can.
Peace and Blessings