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Thread: when does it get better?

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    Default when does it get better?

    I was diagnosed in mid-December. At that time I was prescribed plaquenil. The doctor said it would take about 3 months to work.
    I am a chemistry teacher (53 yrs. old). It takes all the energy I can muster even get up, much less to make it through the day. By the end of the day, I am totally exhausted. Is he right? Three months?
    In five years I will reach the 25 yr. mark in which I could retire. I keep telling myself it will get better, otherwise I can't even imagine another year. I can't affort to stop working. I guess I just need some words of encouragement that I can get better. It has taken three years for someone to finally diagnose this. Every year has gotten worse. I have one more question. I have tried to exercise (treadmill). I feel worse for days afterwards. Not sore, but actually worse. Is this part of the package?

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    I'm sorry you are having such a rough time - I used to be a teacher and I know it can be a stressful and tiring job even without lupus. Plaquenil may start to kick in by three months, but a lot of people find that it takes six months to feel the full benefit. Sorry, I know it's not what you wanted to hear, but I don't want you to be discouraged if you still weren't feeling better in three months. For some people it works more quickly, but for others it takes time. But it does get better, and the more you learn about the particular pattern of your disease, and what works for you, the easier it becomes to manage, although the fatigue never goes away completely, but it isn't as completely disabling as early on. Exercise helps some people but makes others feel worse, so you just have to judge by your own reactions. Maybe the treadmill is too much right now, and you should stick with some stretching or just walking. If you have access to a pool, swimming gives you exercise without putting a lot of stress on your joints. Avoiding UV exposure, getting plenty of rest and eating a healthy diet are all important ways to manage the disease. I don't want to overwhelm you with a lot of information right now, but if you have specific questions, please post them and someone will try to help.

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    Hi,

    I'm 2 years in since diagnosis, and there are ups and downs. It took about 4 months before I was able to really notice much change with the plaquenol. I did take prednisone, and that made a marked difference in my fatigue and achy feelings. I am also one of those people that has to take it easy with exercise. If I'm not on preds, I can't do it at all. I was able to start with just 10 minutes a day on the treadmill, and over several months... very slowly work it up to an hour. Normal, heart pounding exercise that other people take for granted will put me in the bed for 2 days... Good news, is that when you do start feeling good, boy do you ever appreciate it....

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi and welcome to our family.
    As Marycain and SonyaLA have said, Plaquenil can take anywhere from 3-6 months before you begin to see (and feel) the real benefits. But, once you do, it will make a difference. The plaquenil also helps with the fatigue, but since this is such a large part of the disease and the one that is the most misunderstood, it will take getting to know your body and how Lupus affects you to find the best way to deal with your fatigue.
    Doctors are usually stumped and/or frustrated by our fatigue and most have agreed that the fatigue results from another condition that most of us have, Fibromyalgia. Yet, the LFA (in a recent study) found that Fibromyalgia was not seen as often as fatigue and so fibromyalgia cannot be the main explanation for the occurrence of fatigue or for the severity of the fatigue Lupus patients. This is very different and hopeful news for those of us who suffer with this fatigue and have to deal with so many who will not accept that IT IS TRULY a part of our disease. The LFA has been studying fatigue in Lupus patients and have found that the degree of the fatigue was directly related to several factors:
    - older age
    - non-Caucasian ethnicity
    - lack of health insurance
    - maladaptive health-related behaviors
    - degree of disease activity
    - helplessness
    - pain (attributable to lupus) and
    - neurological manifestations.
    Now, they understood that fatigue may also occur as a result of seemingly unrelated events-for example, worsening disease activity may lead to fatigue, but so may the lack of exercise, or the use of destructive health-related behaviors.
    The LFA is suggesting that serious steps be taken to help lupus patients with this symptom? How? "First, of course, is to determine the obvious, that is whether patients have any lupus or non-lupus related cause for their fatigue (e.g. anemia, renal insufficiency, hypothyroidism, ongoing disease activity, depression, deconditioning, poor sleeping habits) and intervene accordingly. A negative work up may suggest that other factors are more important and the physician may at least attempt to address them (behavioral interventions)." Since this is the first time that fatigue is being studied through true clinical trials, there are, at present, no systematically gathered data (being that randomized clinical trials or longitudinal observational studies) that can support any such interventions. They hope, through these trials that they are conducting now, that they will be able to produce such data in due time.
    Exercising is still very important in reducing and/or dealing with your fatigue. As Marycain suggested, walking, biking, swimming or other low-impact aerobic exercise may reduce your fatigue. You can also look into beginners Yoga or beginner Pilates (both are non-jarring)and (as Sonya said) start out slowly and for 10-15 minutes at a time. Slowly work your way up to at least 30 minutes and try to do some form of exercise daily. Once you find a routine that fits you and that you can tolerate, you will find that it does help your fatigue and even with some of you other symptoms.
    I wish you the very best....Once again - welcome to our family :lol:
    Peace and Blessings
    Saysusie

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    Lupus is a challenge because it has its ups and downs. There are some days I feel "normal" and others I feel horrible. What I have found, though, is that with time I have found the best ways to manage it myself. For me, medication, rest, healthy boundaries with my work and relationships, yoga, and acupuncture are my main enforcements of dealing with the disease. I think the longer you know how your body reacts to this disease and what works best for your body, the better you can anticipate possible problems and attempt to head them off. So, hopefully, time will be ashelpful to you as it's been to me.
    Missy

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