26, Frightened and frustrated
Hi everyone. I'm 26 (next week is my 27th birthday) and today I was diagnosed with SLE. It's good to finally know what's been going on in my body for the last 6 weeks or so (i'd never experienced any symptoms before). The joint pain came on hard and fast and my arms and legs are in a lot of pain, especially in the mornings. I eat well and exercise, and I am at a good weight for my height and age, so I'm hoping I'll be able to control this. I'm terrified and frustrated though because I just graduated from law school, have tons of debt because of it, and am now studying for the bar exam. The problem is that in the mornings I'm in so much pain that it's hard to get to my bar review class, and sit through all 3 hours of it 5 days a week. I can't seem to concentrate. And then I'm so tired when I get home that I just nap and can't seem to get any work done. I'm seeing a rheumatologist tomorrow for the first time and I'm keeping my fingers crossed that he or she will help me attack this aggressively, but I was just wondering if there were any tips on how to get moving a little easier in the mornings, and if there was anything to help with the fatigue and inability to focus/concentrate. I can't afford to not pass the bar on the first try.
Also, does anyone experience sore throat at random times of the day? I have been and it seems to come and go. I don't know if it's at all related and I'm also concerned with infection.
Finally, does anyone know of a good book to help family members cope with the diagnosis? My mom is taking it really hard (no one in my family has ever been diagnosed with lupus) and even though i tell her i'm fine she just cries all the time. I try to tell her it's not the end of the world, just another obstacle in life that i'm just going to have to deal with (hopefully with success) and that it's best to try to not freak out because that just adds to stress which isn't going to do anyone any good, but nothing seems to help. We live in different parts of the country so I can't have her come with me to appointments, which I guess makes it even more difficult for her but what can I do? Ideas?
Sorry for the long rambling start. Just looking for some advice I guess.
Thanks for listening and God bless.
It sounds as if you are doing the right things to manage your fatigue. Exercising regularily is one of the best ways to increase your stamina and strengthen your immune system (as well as we can with this illness). But, it is also important to listen to you body and to make sure that you allow time for recuperative rest periods. I, too, have pain and stiffness in the morinings when I awake. I try to set my alarm 15-30 minutes earlier so that I can lie in bed and sit on the edge of the bed do light stretches before I get up. I find that taking that extra time to "Lubricate" my body helps me to get around easier in the morning and alleviates some of the pain. Also, I try to do stretching exercises prior to going to bed so that I do not wake up so stiff and sore.
With reference to concentration: that too is a common symptom of lupus. It is generally cause by the involvment of the nervous system with the disease. The most common manifestations are: headaches, confusion,
difficulty with concentration, fatigue, and occasional seizures or stroke. There is no known means for preventing cognitive dysfunction in SLE. Similarly there are no established or proven treatments for cognitive dysfunction in SLE. It has been suggested that if you exercise your body in the morning (light stretches as I mentioned before and perhaps even some weight bearing exercises), that will help your concentration throughout the day. There are some studies that suggest that the drug Modafinil can improve cognitive function in patients with lupus. Modafinil is currently being used to treat excessive sleepiness caused by certain sleep disorders. It has also been shown to improve attention and concentration in some people who have lupus or sleep disorders.
As far as exercise, you should choos activities that strengthen your stamina and don't cause stress to the joints and muscles are best. These include swimming to provide an all-over fitness, walking and cycling. Jogging should be avoided as this may prove too strenuous. It is always advisable to ask the advice of your doctor when thinking of starting any exercise regime.
You will have to make some lifestyle changes in order to effectively manage your lupus (avoiding flares, getting a good balance of exercise and rest etc.). This will take a bit of time and experimentation until you find the balance that works best for you. The most important thing to do is to listen to your body, continue to eat healthy meals, exercise, rest, avoid the sun and do the best that you can to avoid unecessary stress.
Here are some very good books for you and your family:
1. The Lupus Book: A Guide for Patients and Their Families: Books: Daniel J. Wallace by Daniel J. Wallace.
2. Sick and Tired of Feeling Sick and Tired: by Paul J. Donoghue & Mary Elizabeth Siegal
3. The First Year - Lupus: by Nancy C. Hanger
4. Living With Lupus: by Mary Horowitz, MD, and Marietta Abrams Brill.
5. Living with Lupus: The Complete Guide by Sheldon Paul Blau, MD, FACP, FACR and Dodi Schultz
6. Learning About Lupus: A User Friendly Guide edited by Mary E. Moore, PhD, MD, et. al.
Peace and Blessings