View Full Version : Just diagnosed
Hi, my name is Lis (LMH) and I've just been diagnosed with SLE.
I'm 56 and retired from work 6 years ago.
I've had skin problems, sore joints and muscles etc. etc. for a very long time, but what I find the worst is the tiredness - I feel I sometimes sleep my life away. I started reducing my working hours about 10 years ago to eventually 2 days a week in 1999, but even that I found extremely difficult.
I've seen a "million" doctors and specialists, and have now finally found one, that wanted to get to the bottom of all my weird symptoms.
I'm almost "in charge" of my skin-problems now, and I'm currently trying to minimize my joint/muscle pains without using heavy medication.
The tiredness however, I simply don't know how to manage. I sleep 8-10 hours a night + several 1 hours naps during the day. Feel sometimes, that I perhaps should be able to snap out of it ???
What can I do, I wonder? What do other people do??
01-09-2007, 04:16 AM
Hi, Lis. Welcome to the forum. I think you'll find great information and support here. My name is Jody. I was diagnosed with SLE about 9 months ago, and am also 56. (us baby boomers have to stick together! :wink: ) I've had symptoms for a long while and it seems like forever since I've really felt good. I'm so sorry you're having a hard time dealing with the fatigue. I understand. As you can see, insomnia is also a problem...particularly if you're on steroids. I've been up since before 4:00am. Are you on any meds yet? Plaquenil can really help with fatigue, but it takes a long time to really kick in - 6 months or more. Lupus takes so many forms. As you read this forum you'll discover that it's never the same for any two people. You'll need to work with your doctors to find the right mix of medications and treatments for your needs. Don't be shy about telling them if something isn't working, but do give the meds time to work. Naps are good! Lupus requires that we rest and avoid stress. You'll get a good welcome and come great advice from others on this forum who know far more than I do. Just know that I wish the best for you and I'm here to 'talk.'
01-09-2007, 09:35 AM
Welcome Lis to the forum and to the journey of living with Lupus. I was diagnose with SLE 3 years ago. I'm 29 now (the big 3-0 in June!)
My fatigue has been very connected to anemia, so I di use ProCrit to increase my iron level.
I wish you the best in managing your illness. We are all here for you.
01-09-2007, 05:11 PM
Hi Lis :lol:
As you can see, many of us can certainly relate to the debilitating fatigue that is so much a part of Lupus. There are some of us who have a double-whammy because we have both Lupus and Fibromyalgia...so fatigue is just a way of life for us. Several recent studies suggest that the chronic tiredness in Lupus actually comes from fibromyalgia, another autoimmune disorder which often afflicts lupus patients concurrently.
The naps are not only needed, they are necessary. Do not feel guilty about taking your naps or about the fact that you cannot seem to get past the fatigue. The best thing that you can do to lessen the fatigue is to get adequate, recuperative rest. In fact, we are advised to modify and reprioritize our schedules in order to include those naps and cut out energy-sapping extra activities. However, and ironically, just as rest is important for fatigue; regular exercise is just as important! Regular, gentle aerobics usually help lessen fatigue, such as swimming, dancing, fast walking, cycling, even rollerblading, and cross-country skiing. Water aerobics are also a good choice because water supports your body and puts less strain on your joints. However, you must keep this in balance also. You should avoid strenuous exercise, expecially if you have a fever or other signs of a flare (active disease state).
Also, keep track of the foods that you eat. You can keep a food diary, recording both what you eat and how you feel. Some foods or combinations of foods can make you tired because she you may not be able to digest them well. We are told to reduce our intake of animal protein and carbohydrates. I have found that if I eat these foods, I'm exhausted days! However, Fruits and vegetables seem to give me more energy.
Some people belive in taking supplements. I would advise that you consult with your doctor before starting on any regimine of supplements!
I know it may sound confusing and it is a real balancing act...but once you get the rythm of rest, exercise and diet that works for you and your body, you will find that it does help!
I wish you the best
Peace and Blessings
thank you so much for your replies. It is so nice to know that you are all out there, if I need help (which I will and do).
Good to know that there are more people my age. Seems to hear a lot about younger people. Started to feel that it wasn't "normal" to get the diagnose at my age.!!! Then again I have probably had it for years. I'm not on any steroids..yet. I take Celebrex and Panadol for the pains. I'm trying to see if I can manage with that. My specialist has mentioned Plaquenil. Is that a steroid? Has it any side effects. I'm a bit worried (as you can tell) about steroids - have had some bad examples of sideeffects in the family.
My Ferretin level has been extremely low for many years. I can't seem to absorb Iron - be it in tablets or in food. I have had iron injections for a while. However, now that I'm menopausal my Ferretin has increased from a low 3-7 to 36, but tiredness is the same, sometimes worse.
I know that I probably need to exercise a bit more, but I find it so hard to "get my act together". Every now and then I've got the energy for it, but mostly I'm so tired that I feel like sleeping in the middle of my (mild) airobics. I walk my 2 dogs for half an hour each day - they are very good at reminding me :D . I have noticed that food plays a big role. Now after Christmas and all the sweets (sigh) I do feel I'm paying for it. I do take supplements, I find that especially a super B-vitamin is very valuable.
Thanks again to all of you. I went from this :cry: to this :D in a short time.
01-09-2007, 08:44 PM
Hello, Lis. Plaquenil isn't a steroid - it is actually an anti-malarial drug (hydrochloroquine). Its effectiveness as an arthritis treatment was discovered by accident, when military doctors in the 1950s noticed that soldiers with arthritis seemed to improve when they were taking the drugs to prevent malaria in mosquito-infected areas. So civilian doctors started to use it to treat rheumatoid arthritis, and later on, lupus. It does have some potential for side effects, and a lot of people have some upset tummy problems when they first start the drug. But generally, it is well-tolerated and safe. It can take about six months to see any full benefit, but it does improve fatigue, joint pain, and other symptoms, and some research suggests it can prevent flares and reduce the chances of developing organ involvement. So it is often the first drug suggested for someone whose lupus doesn't involve any major organ systems. Hope this is what you needed to know. Welcome!
Hi Marycain, Thank you for your information (and quick response).
That sounds like something, I perhaps should consider. I have just had some bloodtests done to check if internal organs are affected. I hope not. I won't see my specialist before start of March, which I'm a bit upset about, but i guess it's because she's good, that the waitinglist is so long :roll: . Thanks again for the info.