I understand about the not having the energy. However, I still make myself get in at least 4-5 40 minute walks a week. It does make me feel better and adds to my energy. It's hard to do because it also hurts my back, neck and arms, feet, etc. you get the idea. Anyway, I just try to remember "it's only pain" and be thankful that I still can do the walking. It also helps if I take a Tramadol and hour or so before I plan to walk.

I have to try and keep up my energy level because I still work full time. It's getting harder and harder to do because I never know when I'm really going to feel like crap. So got to keep up with the walking.

My advice is to do what ever exercise you can do plus a little more. I think you will see an increase in your energy level after a few weeks of regular exercise.

Good luck and have a nice day.

I agree with dadsgirl1, I have to push myself to exercise sometimes. I find that it does help. I found that Plaquenil helped with the fatigue and pain. It does not get rid of it but it helps.

I hear you about the lack of energy as well as the other things we all have to live with. I still try to walk for an hour three times a week. Each time I do I walk three miles in that hour. I have to push myself. It isn't always easy to do but in the long run I do think it makes me feel better. All you can do is try Every little bit will add up. Just like the rain drops add up and eventually turn into a puddle.
Take care : O)

start doing joga it will help with the muscles stiffness and then add on slow but firm you will start getting a little energy little by littler trust me it will help. but above all be proactive and possitive good luck

Before my diagnosis I was in the gym everyday doing 30 mins. of cardio and 30 mins. or weight training with a personal trainer, now I do well, if I get 2 - 30 mins. walks in a week. and i'm dragging myself up the steps when i get home. So, I completely understand how you feel, I was thinking about doing yoga, but I don't want to sign any contracts and have to pay for the classes if I really don't feel well that day.

Reverse the question- what will happen without exercise?

Inflammation will be better with exercise blood flow decreases it. Hence him telling you to exercise. You keep weight off , you keep solid lung function , remember we get lung involvement with SjS.

I always , I mean every single time I walk ... I feel better- I just went through a three days knee swollen issue from RA I still walked my 3+ miles. My knee cleared up after three days without walking it probably would take a week.

We are not talking going to a gym and training like a Arnold. Talking about walking or swimming or something that gets your heart rate up some and blood flowing.

Tired , tell me about it...... I walk during flares......as the saying goes rest when you 're dead. :-)

It helps mentally too. You conquered this rotten disease one more day! You triumphed over fatigue.... you also keep fit.

Tom, that's really great advice. My rheum. told me not to push myself and just to rest through the flares. I just had a friend ask me to babyset her children both, under 3, starting in Sept. I've been kinda afraid to do it. Because to the fatigue. I told her I would. Maybe this will be a good thing out every day running and keeping up with the kids,

Ok, sounds like you all push yourselves. But do you get so fatigued afterwards that you need to take a nap? Then you can't accomplish much the rest of the day?

NO, just the opposite you feel refreshed! you got this all wrong...exercise is critical to blood flow. Critical to involve your heart, lungs and overall blood flow.
You might get tired for the first few weeks , so what! After you start getting used to the walks you feel better everytime. You can then make them faster or longer.

I know ever yspring when I really step up my exercise with yard work the first few days I am drained. As I continue my stamina gets better and better. You must fight through it.

Getting in shape adds to energy ......procrastination adds to energy DRAIN. your call......

YES, take a nap! so what again- Nothing wrong with a siesta...

I take one religiously daily about mid day! I wake up refreshed. I don't sleep thoroughly at night so a nap is perfect ....

My wife even asks me when we are on vacation if I need a nap. I am the type that pushes the envelope always have. Now I've learned my limits and my wife understands totally.

Eating right is the other thing for energy.

Yeah I push through flares and IMO it shortens them considerably. :-) I wish there was magic potion.....or fountain of youth...but sometimes no pain - no gain has merits.
We still can stay fairly fit.....as much as we are limited.

You could start out slow and just do 10 minute walks and work your way up to 20 min. You will be suprised at how much you can do if you put one foot in front of the other. Bring a partner, someone that can help accomplish your goals, and be there for support. I know its easy to develop a fear of exercise, but it is there to help not harm you. I also find stretching everyday helps with mobility. Don't push yourself if you are in extreme pain, know your limits.

I started a walking regimen at night and it does help. I am also noticing my muscle is coming back, and it helps with the emotional aspect of feeling less able to do things.

Another thing I see is that most of the people here are talking about general guidelines about exercise and how it benefits their lives. I agree. It is hard to get started, but I find that it helps a lot. Not only with stamina and emotions, but if you have joint pain as well. By building up the muscle strength on each side of the joint, it decreases the work of the joint in supporting the body.
No one expects you to be able to walk 3 miles in an hour when you first begin. If you can't walk a 20 minute mile, just do what you can. Plan your exercise time well. Plan it to be shortly after a rest period. If you take "as needed" pain meds, maybe take one around 30 minutes before you begin until you are accustomed to your exercise. Walking is excellent. If you have a lot of joint pain, however, you may want to try swimming. Yoga and pilates are both excellent, but give yourself time and realize, you may never be as limber as your instructors or the ones on video.
Hydrate yourself well before and after your exercise routine. Also keep water handy but sip and don't gulp. Dehydration can worsen fatigue. If walking or doing aerobic exercise, don't over exert. You should feel slightly winded, but should be able to keep up a mild conversation. Try to keep a buddy with you for moral support and to keep up their end of a conversation.
If using weights for muscle building. Use low weights and higher repetitions. If you repeat the same move less that 12-15 times, your body will tend to build stockier, bulky type muscle mass. More than 12-15 times will develop a leaner, longer muscle mass.
But above all, if you overdo, REST. Listen to your body. If it demands a rest day, give it to yourself. Your body will only ask for rest for so long until you lose the decision and your body just stops and you have to rest. It takes longer to get over a flare because you don't keep things in balance than taking an occasional rest period or extra nap. If you are severely out of shape, ask your doctor for guidelines on heart rates. You may choose to start out in a gym. Smaller, local gyms usually will be willing to work with you without have to "hire a trainer". When I first started going to the gym, I talked to the owner, explained my health issues and asked if they could accomodate me. He helped me work out a plan for starting, slowly advancing and which areas to concentrate on. He always made time to be there if I needed him.
Best of luck and you are in a wonderful place for encouragement.

Hello All,

The fatigue that makes me want to take a nap (especially after exercise) is MENTAL fatigue, not physical fatigue. Isn't that strange? Do you guys feel that?

Walking or stretching is helpful. Take it slow. If you can only do 5 minutes to start then so be it. Be sure to wear comfy clothes and footwear too. I started just doing laps inside my house, then my hubby got me a treadmill. I put on the mp3 player or the tv and walk to the music or a show like travel channel or something fun that keeps me interested and I don't watch the time so much. I worked up to 25 minutes 4 times a week. I had a set back due to a knee injury but am hopeful to get back up to more than that time soon. I also recommend staying well hydrated for energy. water laden fruits are just as good as water so you can switch it up. Plus then you are sure to get the 5-7 servings of fruit/veggies a day which truly helps us all to better health.

Yes we all have a degree of mental fatigue. Look back for the "brain fog" thread for more.

Walking And Standing: The Two Best Exercises
July 13, 2010 by Dr. Mark Wiley

I am often asked what type of exercise regimen one should begin as part of a health restoration program. There are so many different types of exercises available and so many places to do them that beginning such a program can seem daunting. This is especially true for those who have lived a sedentary lifestyle for a few years.

The thrust of the advice I espouse is one of prevention by means of self-direction. This means that it is not necessary to join a gym or purchase a treadmill in order to restore health through exercise.

Indeed, immediately joining an aerobics class or churning out miles on a treadmill can actually cause pain if you are not currently in shape. And since we are more concerned here with changing lifestyle patterns and outlooks, it is best to start slow. Then you can build to more challenging activities as your body grows stronger and your interest grows.

I dont personally enjoy lifting weights, jogging or aerobic exercises. However, I do train in the martial arts and engage in a regular program of qigong standing and brisk walking as mind/body exercises. Since any health approach should incorporate an integrated mind/body theme, this must be an essential component of the physical activity you choose as exercise.

In this way, in addition to burning calories, increasing oxygen intake, stabilizing blood fats and sugars and releasing those feel-good hormones, you will also develop a mind/body center that will help focus your thoughts, emotions and spirit and help reduce the stress and anxiety that often accompany ill health.

Lets look at two exercises that are easy to do, enjoyable and will get you toned and in shape while also offering a means of connecting your mind and body. These are Brisk Walking and Qigong Standing.

Brisk Walking
If done correctly, brisk walking can be one of the safest, most beneficial and enjoyable of exercises. Walking is an aerobic activity, but since it is low-impact there is little wear-and-tear on the joints and little (if any) triggering of pain from the jarring action of the body experienced in high-impact aerobic exercise or jogging. Although it is a simple activity, walking actually utilizes most of the muscles of the body to propel you forward and keep you on balance. It also increases respiration, heart and lung function, blood and oxygen flow and the burning off of blood sugars and fats. It facilitates the removal of toxins and other wastes through sweat and improved eliminative functions.

Walking is so simple and ordinary, yet in one 30-minute session you can raise high-density lipoprotein (HDL)the goodcholesterol levels, increase respiration within safe limits, sweat out toxins, release feel-good hormones called endorphins, improve heart function, begin reducing weight, reduce stress, promote relaxation and improve overall endurance and body tone. Amazing.

Many of the triggers that attack our health can be reduced or eliminated simply by walking. And this activity only requires time, as no special place need be made to do itthough it is preferable to walk in a park as opposed to a busy city sidewalk.

Though walking in and of itself is a common activity, few of us do it properly. In fact, walking as we naturally do will do little for our purposes. You must look to walking as a mind/body activity, wherein your mind is clear, emotions calm, respiration steady, body properly aligned and relaxed and each walking step even and balanced. If you are able to integrate each of these components while briskly walking for at least 30 minutes a day, then your walks can be considered a microcosm of an integrated mind/body approach to health and wellness

Qigong Standing
Qigong is an ancient Chinese mind/body discipline that seeks to establish a healthy body by developing the so-called three treasures and three regulations. The three treasures are known in Chinese as jing (essence), qi (vital energy) and shen (spirit).

Jing is simply the bodys energy that is derived from glucogen and turned into glucose that is used to propel the body during any physical activity.

Qi has a number of meanings, many of which are esoteric and difficult to comprehend in Western terms. However, all of these meanings and definitions involve the coordination of breath or respiration with concentration.

Shen encompasses the many functions of the mind and your emotions and disposition.

Qigong, then, is primarily concerned with focus, intention and thought, as it is the intention that leads the breath to develop energy to power the body to then help make us healthy.

I have found that despite the hundreds of qigong practices, they all have a similar theme. Therefore, the more simple the qigong system the better (especially for busy Americans).

I have chosen to describe here the method known as zhanzhuang, or simply the standing pole method. It requires only enough space to stand still, and it is so simple that you will not be distracted by having to remember specific sequences of movement.

In a nutshell, this practice is as easy as standing with your legs a shoulders width apart with the knees bent only one or two inches and with both arms bent and held at the same level. Below are three standing postures for you to do in sequence.

1. Hand Floating On Water Hold your arms out to their respective sides, palms facing down. Try to visualize that your palms are floating on water. Be sure to keep them in place and not move them during the exercise.

2. Hugging A Tree From the previous posture, slowly raise your arms to chest level while pulling them inward. You want to feel as if you are hugging a tree, which is a mental image to keep your arms from coming too close to the body. Relax your hands and elbows and wrists, again like they are floating on water.

3. Holding Up The Sky From the previous posture, slowly rotate your palm outward while lifting your arms upward. The final position should find your hands at about forehead height, extended slightly forward and upward, as if holding up the sky from falling.

Once each posture is assumed, do the following steps:

Quiet the mind by not stressing over distracting thoughts that may comesimply allow them to go freely without passing judgment.
Regulate respiration by quietly breathing in and out at a steady relaxed pace. Now enjoy yourself for the next nine minutes.
After nine minutes, slowly move your arm position to the next posture. Do not excite your mind or move your legs as this will distract your energy and intention.
Sounds simple, but so much is going on. Here is a quote from Traditional Chinese Therapeutic ExercisesStanding Pole, by Wang Xuanjei and J.P.C. Moffett:

Standing pole is an exercise of the whole body. As the outer form of the body is not moved, all the internal organs settle, while all metabolic functions increase. This develops movement within non-movement, that is, unhindered internal activity and movement within external stillness. It is a non-violent and non-overburdening exercise, simultaneously providing rest and exercise, easily adaptable to any condition and encouraging development of the bodys innate strengths and abilities in a natural way.

You see, while it appears as if you are doing nothing at all, in actuality the body is engaged in a process of physical activity. While quieting the mind and regulating respiration you are reducing stress, relaxing the cerebral cortex and rejuvenating the central nervous system. You are also working muscles by virtue of maintaining an isometric posture wherein the knees and elbows are bent, the arms are raised and this position held steady without release until the end of the session. This elevates heart rate without overtaxing the heart, improves the circulation of blood and oxygen throughout the body and increases metabolic functions while releasing toxins and tension from the body.

Youll be surprised to find how difficult merely standing still can be. To be honest, most people have difficulty standing still (unmoving/frozen) for more than five minutes. Whether you think youre already fit, or in need of more tone give qigong a try. The results may surprise you.

Go ahead and take a brisk 30-minute walk and later that day or the next day, stand still for 30 minutes. You may find youve never felt better.

Dr. Mark Wiley