April 21, 2010

Guest Blogger Dr. Barbara Segal talks about what is abnormal fatigue, and what can be done about it

Fatigue that is often severe, persistent and disabling is a common problem for lupus patients. A sense of exhaustion which interferes with normal functioning is an experience that affects as many as 70% of people with lupus. We all appreciate that illness of many types is associated with extreme tiredness. Fatigue is frequently the first symptom of common illnesses such as viral infection.

Distressingly, in lupus, often the tiredness persists even when the disease is “under control,” a fact that has led many researchers to conclude that disease activity has little or nothing to do with the cause of the fatigue. Yet paradoxically, many patients report that the first symptom of a flare is a worsening or relapse of fatigue. Despite extensive research, many questions remain about the biology of fatigue.

One of the reasons that progress in understanding abnormal fatigue has been slow is that fatigue, like pain, is complex and subjective and therefore a challenge for researchers to describe and measure. Fatigue has physical (needing to rest, weakness), emotional (decreased interest, low motivation) and cognitive aspects (for example: problems with concentration). The physical and emotional impact of fatigue is not the same for each individual and can be present to varying degrees in the same person at different times. Also, the words used to describe fatigue such as tiredness, sleepiness, and exhaustion mean different things to different people.

Clearly, fatigue is very challenging problem and multiple factors potentially contribute. Not surprisingly poor sleep is a major factor. Two thirds of patients with SLE report poor sleep quality. Low mood, pain, lack of exercise and medications all contribute to the high prevalence of fatigue in autoimmune disorders. A comprehensive evaluation to address each one of these issues is a good place to start in turning the fatigue problem into a symptom that is manageable and not disabling.

Fatigue, Depression and Sleep Disorder

Both fatigue and pain are strongly associated with depression in patients with autoimmune disorders including SLE. Depression is particularly frequent in the first year after lupus is diagnosed when medications and inflammatory processes, as well as the challenges of coping with a serious unpredictable illness, can be overwhelming. People with depression typically experience decreased energy along with changes in appetite, memory problems, slow thinking, difficulty with attention, feelings of sadness and loss, and pessimistic thoughts.

Medication to treat depression is often very helpful in treating both the low mood and accompanying changes in appetite, energy and sleep. When daytime tiredness persists even in the absence of depression, poor sleep quality is often a major factor. Sleep disturbance can also be related to many different problems. When pain interferes with sleep, whether the cause is nerve damage, joint inflammation or fibromyalgia , appropriate treatment of the underlying cause is essential.

Sorting out the Cause

Fatigue that follows even minimal activity is frequently associated with deconditioning. Whether decreased physical fitness is the cause or the result of abnormal fatigue, a conditioning exercise program designed to gradually improve fitness is safe and effective in treating fatigue in SLE. Depression is often associated with fatigue that is present throughout the day and is not relieved by sleep or rest. The fatigue is typically severe in the morning, which is also the case when fibromyalgia is present. In fibromyalgia sufferers, patients are likely to awaken feeling unrefreshed, tired or exhausted.

As many as 20% of SLE patients are also experiencing the symptoms of fibromyalgia: widespread muscle pain that is not associated with tissue damage and diffuse tenderness. Because the pain in fibromyalgia is thought to be due to abnormal sensory pain processing, treatment with anti-inflammatory and narcotic analgesics is usually not effective, whereas pain medications that act specifically on pain pathways that are dysregulated may be beneficial. If treatment of depression or fibromyalgia is not helpful in improving poor sleep quality, a formal evaluation to determine whether there is a specific sleep disorder interfering with normal sleep patterns, such as obstructed airway or restless leg syndrome, can be useful. Delay in falling asleep can also be helped by exercising early in the day, avoiding alcoholic beverages after dinner and a establishing a relaxing gradual process of winding down before bedtime.

Unraveling the mystery of fatigue: the way forward

More effective treatments for fatigue are likely to be linked to the discovery of novel lupus biomarkers. Biomarkers can be any one of several types of measurable quantities that reflect the biology of a disease process and relate to the mechanism of the disease. Research is this area has been very exciting. A good example is the discovery that up-regulation of the interferon gene pathway is characteristic of lupus and Sjogren’s syndrome as well as several other autoimmune disorders.

The interferon gene signature is a fingerprint for severe SLE that is more likely to be detected in patients with serious organ involvement (especially kidney and brain) and when disease is very active. Within the central nervous system, inflammatory molecules regulated by interferon play a role in causing symptoms that we associate with illness including decreased appetite, fatigue and abnormal sleep as well as depression. Other potential biomarkers for fatigue include genetic fingerprints (DNA and RNA messages within cells that are identifiable with modern technologies of molecular biology) and imaging techniques, such as nonconventional protocols for high resolution brain magnetic resonance imaging.

So far, while the results are preliminary and require further study, there are some clues that suggest that disruption in normal signaling between brain cells involved in monitoring stress and pain may contribute to fatigue in individuals with autoimmune disease. Another line of recent research suggests that increased oxidative stress and possibly mitochondrial dysfunction could play a role in causing fatigue in lupus as well as fibromyalgia and chronic fatigue syndrome. Future studies combining both high resolution brain imaging and molecular techniques capable of measuring abnormal proteins could provide answers to the mystery of the origin of fatigue. New insights into the two-way relationships between the immune system and the brain will shed more light on the origin of abnormal pain and fatigue. In the meantime a model that takes into account the complex physical and psychological aspects is the starting point for tailor-made therapeutic help.

You can learn more about fatigue on lupus.org.

Dr. Barbara Segal
Hennepin County Medical Center
Minneapolis, Minnesota


Pamsir CT said...

I have had lupus for 11 years and when I read articles like this it is comforting knowing I am not alone in my struggle. A friend of mine introduced me to MonaVie a fruit beverage with the acai berry as the main ingredient. I feel like I have been cured I sleep better I no longer suffer with fibromalagia I have more energy and no pain at all. Has there ever been a study on nutrition relating to lupus?

Jan said...

Thank you, Dr Segal for addressing this distressing symptom. Because it is subjective and comes from different causes, it does not seem treatable, and therefore increases a sense of hopelessness. My favorite exercise is swimming but I do not live near an affordable pool now and SSD doesn't afford much. Thanks again for recognizing the importance of research in this specific area.
Jan Ross

adugan said...

A very good read and will post on my Facebook wall. I have ADHD and lupus so I am hyperactive and then crash with fatigue from overdoing it. I lift weights and do 40 minutes of cardio a day, 60-80 minutes on weekends, that includes swimmung and hiking with my husband. Unfortunately I have avascular osteonecrosis in my right hip. I am 44 and need a new one but doctors said to wait longer. I cannot stand opiod agonists because of nausea so I will moan and gripe like the new drug-free Dr House from the tv show House.

Antonia said...

To read your article make me feel so much better. My name is Claudia and I suffer of Lupus since 2004. My doctor discovered it after my second pregnancy. Since then my life changed a lot. I used to be a very active woman. But little by little I lost much of my energy of doing many things in one day. Now even I need a nap and that makes me feel so old, so useless. I tried to work this year and frantically it was so hard because I couldn't memorize some of the codes that I need to use a cash register. I really thought that I became a terribly lazy woman, that all those tiredness and nap things corresponded to a lazy woman. I still don't understand the real magnitude of a flare. Sometimes even I feel very anguish because it is supposed my lupus is not so severe. I don't know. But thanks for your explanation it really makes me feel understood by someone

Anonymous said...

Fatigue is the most frustrating issue in dealing with both lupus and fibromyalgia. It's difficult to describe to others how debilitating it is especially when you're a "do-er". Working full-time and attending grad school leaves no energy for anything else. I hope there is more research into this or at least more acknowledgement and awareness even among the medical community. Quality of life cannot be underestimated. This is one of the things that makes this disease so challenging.

Anonymous said...

I agree with many of the comments here. I am also a "do-er" and always have been. I was finally diagnosed Sept 2008 after knowing something was wrong since 2005 after the birth of my second child. I have levels of fatigue that I rank...The regular sluggish feeling I have daily, the can't get out of bed exhaustion after sleeping for nearly 10 hours and then finally the feeling that someone is actually pushing on my shoulders and forcing me to lay down. Laying down and taking a nap on a sunny day is the worst feeling when you have two healthy happy children running around the house. Thank you for the hope.

Keisha in New Orleans said...

Thank you for your blog, and thank you to all who commented to share their experiences. I was diagnosed with Lupus SLE after my first pregnancy in 2002. I went from this active woman to someone who needed a nap after grocery shopping. I felt like a lazy "bad" mother. I agree with the other comment that one of the worse feelings is wanting to nap on a beautiful day. I can sleep for 10 hours and I still feel tired. Every morning I awake to fatigue. I try to remain positive mentally and to manage my energy levels. Thanks again. I don't feel so alone.

Anonymous said...

The word fibromyalgia should not even enter the conversation of lupus. Lupus victims suffer from a fatigue and general body ache that can be severe enough to prevent basic care, and for now is thought to be caused by elevated or over-active interferon A. Lupus patients in a recent study providing antibodies to interferon A had major relief in symptoms (study not yet released) validating the point. Just like the miserable ache and fatigue one has with a really bad flu, lupus patients suffer with varied levels daily. Fibromyalgia is intended to be a diagnosis of exclusion, when you can't find another cause...not the case in lupus. This diagnosis just makes lupus patients feel more useless and allows the physician caring for the lupus patient to avoid actively helping them. (and we have all experienced this!) As lupus patients, we need to insist we can have relief from our symptoms without just being told "exercise and take antidepressants". There is a strong bias against treating lupus sufferers with energizing meds such as provigyl and stimulants...but clearly we need it as much or more than the other patients deemed acceptable to receive these meds. Hopefully as more women practitioners become involved, lupus patients will cease to be thought of as tired for no reason!~

Glenda from Hialeah, FL said...

I was diagnosed with Lupus 2 years ago and this has definitely been the toughest symptom to deal with. I have found ways to overlook my joint pain and do different things to alleviate that pain such as excercising and maintaining a strict diet (i.e. no starchy carbs, red peppers, spicy food & dairy) but the fatigue I have found no solution to other than sleep. I get frustrated when someone is talking to me and Im falling asleep. I will definitely forward this to my family & friends so they dont think Im a sleepy head with no cause but this does make me feel so much better to know I'm not such a sleepyhead for no reason afterall.

Anonymous said...

I was diagnosed with Lupus in 1993mine is discoid lupus with skin involvement. I became very fatigued about 4 years ago. They started me on B12 shots and I have never felt better. Please ask your Rumy Dr to get more info on it.
I give myself a shot once a month.

Anonymous said...

I thought twice about leaving a comment since I am almost too fatigued to leave one. I was recently diagnosed with SLE and previously dx with bi-polar. I appreciated the blog stating the need for mri to detect the relationship possibilities between the fatigue factors and pain pathways. We are considering that approach now. I have been an avid Jazzercise person and have lost 60 pounds, worked through lots of pain and serious pain but think that the group support and music helped alot with the fatigue. Can't do much right now, but still attend 3-4 classes per week.

Kaitlyn said...

Hi all,
My sister was just diagnosed with Lupus, and I was wondering if you had any ideas on how I can help her or any advice I can share with her based on your experiences.


Anonymous said...

I was just disgnosed with Lupus (SLE) after over 10 years of feeling so utterly miserable. It started when I was about 15 and I have spent the last 12 years seeing dozens of Psychiatrists and Doctors who all believed I was depressed. Yes, I was very depressed, but as I kept telling them, I am depressed because I am too exhausted to do anything - it wasn't that I didn't want to participate lifes activities, I just simply couldn't!
I finally found a doctor, who for the first time in my search, didn't act like I was lying about my symptoms and diagnosed me with SLE.
I wish now I had known to push for a Lupus test with previous GPs all those years ago.
I'm a little worried the severe tiredness may never go away, but hopefully now I won't feel so bad overall as I'm finally getting treatment.

Carol said...

So helpful to read these comments. I was diagnosed summer 2010, with fatigue and headaches being my worst symptoms - muscle weakness and some joint pain following behind. I have been quite low since the diagnosis but finally got to grips with myself just after Christmas. I have started to swim every other day - could only do 4 lengths to start but am up to 20 already. Have put myself on a diet which is supposed to reduce inflammation and feel better after just 6 weeks having lost 7lbs. Still have bad days when getting moving and feeling positive is very hard. The lady who said she felt bad as she has been told she doesn't have the worst type of Lupus really struck a chord - same was said to me and I have been feeling such a fraud as the fatigue makes everything rather hard work - and I actually had to give up my very stressful job as I just couldn't concentrate or cope. But for the first time in 3 or 4 years I woke up the other day feeling really good - it was followed by two days of migraine - but I had that really good day - so I am going to keep on with the diet and exercise and stay positive!!

Anonymous said...

I empathize with those of you who feel like a bad parent. I wish I had the energy I should have to run around with my girls. Despite my lupus medications, antidepressants, and prescription sleep aides, I still have days when getting out of bed is near impossible.
I feel I am letting my life pass me by and watching my children get older. I can't get passed the guilt I feel when I can't physically spend time with them.
Despite the support I get from my family, none of them understand how it feels to be exhausted all of the time.
I only hope to get some relief some time soon.

Anonymous said...

Thank you, thank you so much for this site!
I was diagnosed with SLE in 1998. I've grown accustomed to well-meaning family and friends pushing me to join them in activities and then becoming hurt when I say "no".

Reading the stories on this site made me want to cry...finding out that someone understands the profound, crippling fatigue and the guilt and depression that follows.
God bless you all and thanks for sharing. I will visit this site often from now on.

Anonymous said...

It is refreshing to see that I am not alone in coping with the fatigue at its varying levels - and the related guilt for not being a part of LIFE. I began being treated for lupus-like syndrome in 2001 or 2001. Last year, I began suffering with severe headaches, as well as wide spread pain, which sent me into a downward spiral physically and emotionally. Now my GP has diagnosed me with depression (HA! I wonder why - besides feeling MISERABLE for 6 months straight, my job was being threatened at the time of the diagnosis, and since then I lost my job...hmmm) and he also tried tagging on fibromyalgia because I had widespread pain. I just don't believe that I have fibromyalgia. Thanks to new meds, my headaches are better now, but the extreme fatigue is making it hard for me to concentrate, which is really bad when I need to be searching for a job.

To those who say that their lupus isn't very bad, at least your doctor has given you a solid diagnosis of lupus. Many of my symptoms fit into the "not so bad" lupus category, but my current rheumatologist is calling it undifferentiated connective tissue disorder, which makes it only that much more difficult to explain to employers and others when I am so exhausted that I simply can't function.

Thank you to all who have posted on this site and thank you for this article! I really needed this information just now and now I must push myself forward!

michelle b said...

Thanks for this article I was diagnosed with fibromyalgia and lupus nobody really understands all the pain and exhaustion that occurs with these diseases. Sometimes I want to do things so bad that when I finally get up the energy to do it I get so tired and in so much pain that I think it was'nt even worth it. All the tears later and days of excruciating pain , tiredness that follows. It is music to my ears that I am not alone in this fight for a pain and tired free life. Michelle

Anonymous said...

If I just have signs of Lupus such as an arm rash does it mean I have the subcutaneous version?

Anonymous said...

Anonymous again. If the skin will always be discolored, how do I know when to stop using the cortisteroid cream? When it is no longer itching or the skin is no longer thick?

Sophie - LFA said...

Anon: please give our health educators a call and they can provide you with some resources that may help you. They can be reached at 800-558-0121.

Anonymous said...

My mother-in-law is forever tired, goes back to bed and/or naps as well sometimes, hurts a lot of the time. She is diabetic, has arthritis in her hips, takes other medication) and has lost weight and her doctor doesn't seem to be concerned but as long as she has been tired (years), I think she needs to ask her doctor or another doctor to do an MRI or other tests to rule out anything that they might be missing. The lack of energy and being tired all the time keeps her from doing things but she doesn't seem to think that there's anything wrong and she said all blood work is normal but something just seems off. Suggestions?