I have followed different blog sites about Fibromyalgia and Chronic Fatigue Syndrome and there seems to be a lot of fear that the pain medications they are taking will be removed from the market and that they won’t have any pain medication to take. Again, please note that no final decision has been made. I would recommend the following:

1. Discuss with your Physician the ramifications and develop a plan for dealing with this if it goes into
effect.
2. Contact the FDA (Food and Drug Administration) directly and discuss your concerns.

3. Contact your Congressmen/Women and Senators to discuss the potential impact of such an action
on you.

4. If you are in a Fibromyalgia or Chronic Fatigue Syndrome support group, discuss with the group what
you all might do to educate people about this potential problem.

5. Discuss with your Pharmacist your concerns and find out what pain killers are available for pain that
do not contain acetaminophen.

Please note that I am aware that there are some narcotics on the market such as Hydrocodone that are made without acetaminofen. This is one issue you can discuss with your Physician or Pharmacist.

Dr. Robin

First of all, I would like to state that for many patients with CFIDS and Fibro, the deconditioning (lack of exercise and stretching) can add other symptoms such as anxiety, depression, sleep problems, malaise CFIDS), and pain (Fibromyalgia).  And make sure that you don't do exercises in the evening as there is a very good chance that this will interfere with your sleep.  This is nothing that I care to happen to me.

In CFIDS, sometimes even a little too much exercise can lead to a relapse or worsening of symptoms.  This is often referred to as post-exertional fatigue.  Some exercises you may already do without even realizaing it.  This can be such activities as washing the car or taking your child to school.  Make sure you include those activities when you make up an exercise plan.  It is also a good idea to make up a chart of your exercises and stretching so that you can see over time whether you are doing too much and the impact, good or bad, the exercise and stretching are contributing to.

CFIDS

1.  Check with your Physician first as to  whether she recommends an exercise plan and if there are any limitations to this plan. .

2. I  suggest that you start with reasonable exercise.  This may be as short as two minutes of stretching or washing your dishes.  See how that goes before increasing the amount of exercise that you do.

3.  The first type of exercise may include just stretching and strength .  These can be done easily at home.  It may be good to monitor your daily activity levels in order to establish a point that does not cause a relapse.

4.  Pacing yourself means not overdoing it.  For examply, you make wake up one morning feeling particularly good and try to fit more activities in that you usually do and the whammo!!  You relapse.  So try to keep roughly the same amount of activity per day unless you have planned to increase the amount of exercise that you do.  Slow is the operative word.

5.  It is important both in CFIDS and Fibro to have rest periods between activities.  You might exercise for five minutes and then rest for one half hour.  For me, the rest period is longer.

FIBROMYALGIA

1.  The differences in exercise for Fibromyalgia includes stretching and endurance exercise but again, started very carefully until you know how much you can do without causing relapse.

2.  Stretching usually helps reduce pain and stiffness.

3.  An endurance program like walking helps most fibromyalgia patients.  Again, start off very slowly until you know your threshold level so that you don't relapse.  Water exercise may also be good exercise because it takes stress off of joints and connective tissues but still provides endurance exercise.

Good exercising helps deconditioning!!!

Dr. Robin

It is thought by some practitioners that Fibromyalgia and Chronic Fatigue Syndrome may actually be a part of the same continuum.  Both disorders may have both chronic pain and fatigue, sleep disturbance, and brain fog (cognitive dysfunction), bowel disorders, and frequent infections .

Symptoms of Fibromyalgia may include: (1) Sleep Disturbance, (2) Impaired occupational and social functioning, (3) Wide spread pain covering four quadrants of the body [2above your waist on your right and left side and 2 below your waist, right and left sides],  (4) Cognitive dysfunction which includes problems with short-term memory, difficulty concentrating and word finding  (5) Eleven out of 18 tender points, (6) Morning stiffness, sensitivity to sound, smells, and lights (6) Bowel disorders including irritible bowel syndrome, (7) Sinusitis and frequent infections, (8) Fatigue after a small amount of exertion (9) Depression or anxiety (10) Neurally mediated hypotension.

    Unfortunately, there is still some disbelief in the general community as well as by some ignorant physicians as to whether Fibromyalgia and Chronic Fatigue Syndrome really exists.  Just to let you know that Fibromyalgia and Chronic Fatigue Syndrome are recognized by The American Medical Association, The American College of Rheumatology, The World Health Organization, and the National Institutes of Health among others.  Just because you look well does not mean that you aren't suffering.

Chronic Fatigue and Immune Dysfunction Syndrome (often referred to as CFIDS)  lasts at least 6 months and includes at least 4 of the following symptoms, (1) Sleep Disturbance (2) Chronic Pain (3) Brain fog  which includes problems with short-term memory and concentration (4) Bowel dysfunction (5) Achiness in many muscle groups which some people describe as flu like (6) Frequent infections (7) Joint pain without swelling or redness (8) Malaise and worsening of symptoms lasting 24 hours or more after exercising (9) Tender lymph nodes in the neck and arm pits (10) Sore throat (11) Headaches of a new type, pattern or severity. (12) Depression and/or anxiety (13) neurally-mediated hypotension.

It should be noted that before a diagnosis can be given, your physician might want to rule out other things that can cause some similar symptoms like an underactive thyroid or Lyme disease.

I would be glad to hear from you.  Leave a message and I will post your note.

Dr. Robin

Patients in the trial studies noticed that their symptoms decrease were noticeable after only one week.  It helped reduce daytime fatigue, memory and concentration difficulties, and has a slight effect on weight loss.  Hurrah, no more weight gain like on the other drugs that have been used off label for the treatment of Fibromyalgia.  Side effects include a slight increase in both blood pressure and heart rate.  It also has other side effects like headache, constipation, sweating, insomnia, dry mouth and palpations.

However, while Savella is similar to other tricyclic antidepressants like amitriptyline (Elavil), it does not effect other neurotransmitter substances that cause severe dry mouth, weight gain and hangover effect the next day.  It's not for everyone especially for people with hard to control hypertension.  It also may not be good for people who already take other medications that raise the level of serotonin in your body such as tramadol, cyclobenzaprine for relaxing muscles, over the counter 5-HTP, and sumatriptan for migraines so discuss this at length with your physician and make sure he/she knows that you are taking these drugs.  Also discuss any other over the counter drugs that you are taking.

For more information, go to the website, www.savella.com. 

Please do not consider this medical advice.  This obviously needs to be discussed thoroughly with your physician.  This is for information purposes only.

This provides some hope that new medications are being developed with hopefully fewer side effects.  For those of you who decide to try it, please write in to me and let us all know how it is working for you.

Dr. Robin

Let me say first that relaxation techniques are often practiced because they help with pain, tense muscles, help you rest, and they also lower blood pressure, sends more oxygen to the brain, decreases lactic acid (which is very important as when lactic acid builds up in the muscles it contributes to pain in some patients.

Abdominal breathing is one of the best and simplest techniques for relaxation.  Most of us, especially women, do shallow breathing into our chests.  Abdominal breathing is practiced by slowly breathing through your nose and then bringing the air down towards your stomach.  If you put your hand on your abdomen, you should be able to feel your stomach rising.  Pause for a very short period of time.  Then slowly breathe out through your mouth and imagine gently blowing a feather.  Be careful not to hyperventilate (breathing in too quickly or much more deeply than you normally breathe.  After you have breathed out, imagine letting your whole body go and imagine the tension flowing out through your arms and legs.  Just let go!  Do approximately ten breathes like this. The good thing about this technique is that you can do it while you are at your desk, for example, it takes little time, and you don't need any equipment.

In coming blogs, I will discuss other relaxation techniques such as meditation and calming rest.

Please share what works for you in the comments section of the blog.  I'd love to hear from you.

Dr. Robin

For some reason, when I went to post my most recent blog, it came up third from the top of all of my blogs.  So, please scroll down a little to find that blog.

Here are the latest, hot off the press, tips for dealing with sleep problems.

1.  Go to bed at approximately the same time each night and get up at about the same time; even on the weekends.  Don't build up a sleep debt, i.e. missing some sleep for a night or two and then sleeping much longer other nights to "make up for missed sleep".

2.  Slow down before you go to sleep.  Do calming things like listening to mellow music, reading something that is not going to rev you up. Don't let your to-do list for the day move into this time.  Let it go for tomorrow.

3.  Don't consume alcohol, nicotine, or caffeine before you go to sleep (a couple of hours before you go to sleep).  They actually interfere with a good night's sleep because they are stimulants.

4.  Don't have a big meal 2 hours or less before you go to bed.  If you have heartburn, avoid eating foods for dinner that can cause heartburn.  Limit how much you drink before you go to bed as it may cause you to have to get up in the middle of the night to go to the bathroom, thereby disturbing your sleep.

5.  Make sure that you have a comfortable bed and pillow.  Well, to be honest, I actually sleep with three pillows so go for whatever you need to make you comfortable!  Some people suggest memory foam or magnet mattresses.  Check them out thoroughly.

6.  Make your bedroom a place to sleep and do not watch T.V., work on your computer or other activities.  Keep the room at a comfortable temperature and limit the light coming in with shades.  Also make sure that it is quiet.  If not, consider getting a white noise machine.  Turn your clock face away from you so that you don't have the temptation to look at the time.  That can make you more upset and thus, disturb your sleep,

7.  Take a short nap in the middle of the day (20 to 30 minutes but no more than that) only if you are totally wiped out.  It will refresh you without keeping you awake at night and give you a little more energy during the afternoon. If I am going to take a nap, I set my kitchen alarm to wake me in 20 minutes.  But it seems like the best thing for most people is to rest a few times a day without actually sleeping.

8.  Have a ritual before you go to sleep that you follow every night.  You might take a warm bath, light some candles, meditate, or try progressive muscle relaxation.  Progressive muscle relaxation involves relaxing your muscles by tightening and then relaxing a group of muscles such as the muscles in your face, your neck, your arms, your chest, and so on.  Scan your whole body for tension when you are done to see if any area remains tense, then work on relaxing that particular area.  When I write my pain blog, I'll go into more details on Progressive Muscle Relaxation.

9.  If you absolutely can't get to sleep after about 15 minutes, get out of bed and watch some T.V. or listen to some music in a low light room, or read.  Then try going back to sleep again only when you feel tired.  Staying in bed and agonizing over your lack of sleep only makes you anxious and it then becomes less likely that you'll be able to sleep.

10.  If all fails over time, consult with your physician about medication to be used occasionally.  First you can try over the counter such as valerian, chamomile tea, tryptophan, Tylenol PM, melatonin (3-9mg two hours before sleep), or prescription sleep medication such as Ambien CR or Lunesta, but first check with your health care provider before starting any of these.  If all else fails, ask your doctor about the possibly of a sleep study, if it is bad enough. with a physician who has worked with CFIDS or Fibromyalgia.  You may have restless leg syndrome or sleep apnea which can usually be picked up in a sleep study and can usually be treated.  Cognitive Behavioral Therapy, as discussed in previous blogs, may also help with insomnia that is caused by psycho-physiologic factors.

11.  Most people need 7 to 9 hours of sleep per night although fibro and cfids patients may need a little more.  I need about 10 hours of sleep per night.  Find out what is right for you and then try to build that into your schedule.  Don't fight getting the amount of sleep that you need.

12.  Try to exercise on a regular basis.  It can help you fall asleep faster and make your sleep more restful.  But don't do it three hours before you go to sleep otherwise it can act as a stimulant.

13.  You might try meditation, deep-breathing exercises, and guided imagery.  Guided imagery means that you have some images, like a peaceful walk in the woods that you either imagine or put on tape.  You can imagine the temperature, the smells of the forest, the beauty of the forest, and how good it feels to walk.

14.  If you are having nightmares or wake up worrying about something, try putting pen and paper near your bed and write out what you are worried about.  You can also try to mentally change the outcome of your nightmare to something pleasant.

15.  If you are really worried about something, try writing about it before you go to sleep so you don't end up processing it while you are trying to sleep.

And as always, please send in any tips that work for you.

Good Luck:

Dr. Robin

  Although I don't often do this, I am focusing on an article that was written by Jane Kohler of FMS Community (coypwrited). I have paraphrased some of what she wrote about as I think it is really worthwhile. I don't have the space for the full article. The article is about giving during the holidays with special thought to those people who suffer with Fibromyalgia, CFIDS and other disabling conditions. Hopefully, it will help family members shop for the "perfect" gift or even just a thoughtful gift.

Gift Ideas for People Living with Chronic Pain and Fatigue

The need for specialized gifts is not exclusive to chronic pain and fatigue patients. Many people living with these illnesses are no longer able to work outside of the home, so things taken for granted by a healthy person can be a hardhip for others. Money is also an issue as pain patients give up luxuries to pay for medication, co-pays, and therapy sessions.

HIGH-END GIFTS

– Electric wheelchair or powered scooter to restore independence.
– Personal home elevator
– A home companion, cook, or maid.
– Yard Care
– A car service to and from appointments for those who can't drive or just fill up the tank, check tire
     pressure, fluids, etc.MID-RANGE GIFTS:

– The gift of a massage or Reiki session.
– Electric blankets or wraps.
– Items such as the theracane, thumper, gel-packs, memory foam mattresses and other therapy
     items that can be pricey for those on a fixed income.

MORE AFFORDABLE GIFTS

This is one of the most overlooked categories, yet it may be one of the most important. Those who have large medication bills, or who are unable to work outside the home live without many of the things others take for granted. Something as simple as the morning paper can be out of reach to someone who has to choose between medication, food, or electricity.

– A yearly subscribtion to the local paper can help people locate shopping bargains, connect with
     local support groups and stay in touch with the community.
– A gift card to a local grocery or drug store.
– Gadgets to make cooking or cleaning easier. Items with padded ergonomic handles, self-propelled
     vacuums and robotic vacuums are great. The newer, lightweight bake-ware, pots and pans can
     greatly reduce arm strain.
– A mechanical jar opener or hands-free opener.
– Gift certificates to a local book store or a coupon offering to take them to the library once a week.
– Fibro friendly clothing. Loose fitting, soft clothing that can be easier on the person.
– Warm gloves, hats, scarves, and robes.
– Memory foam pillows or slippers.
– Unscented or low odor bath salts to soothe aching muscles.
– A membership to Netflix or another movie service.
– A portable heater or fan that can make them comfortable in a special room.
– A new ergonomic desk chair for the computer room.
– Cook a large batch of their favorite food and package for the freezer or drop off some cookies or
     other items before the holiday so they can entertain friends without wasting energy or money.
– Items that they are unable to afford for their children or grandchildren such as video games, music
     players, and trendy toys.

Thanks Jane for the extra thoughtful way that you went about thinking about things that may be simple but can provide much comfort and a special sense of caring for those who are sick!!!

And I hope that you guys send some ideas for gifts that would be meaningful for you.  Hey, and also send the list around to relatives and friends.  It might turn out really well.

Dr. Robin

Relaxation techniques are critically importan when dealing with symptoms of Fibromyalgia and Chronic Fatigue Syndrome. Over the next few blogs, I will give you details on how to use such techniques as Progressive Muscle Relaxation, Meditation, Quiet Rest, Guided Imagery, and Practicing Mindfulness. These techniques do a few things. (1) They help reduce stress (2) They help reduce tension in the muscles. Muscle tension can be caused by Fibro and CFIDS but can also make your symptoms worse. (3) They can simply help you feel a little better. By the way, these techniques can also help you relax before bed and might make sleep easier. If that happens, it’s a good thing.

PROGRESSIVE MUSCLE RELAXATION

This is easy to do and it really works for a lot of people after you practice it a little bit. I have gotten so good at it that I can stand waiting for an elevator and relax my muscles. The basic idea is that you tense and then relax muscle groups and that teaches you the feeling of a relaxed muscle After you have practiced this for a while, you will be able to scan your body for any parts that feel tense and just relax them since you will know the feeling of relaxation.

You might have to experiment a little to make sure that you are not tensing too much which could actually cause you to go into muscle spasms in areas that are already really tense. This technique may not work for everyone and don’t try it if you are already in muscle spasms or have an area that is injured. In that case, you might try just relaxing the muscle without tensing it. And, you should check with you physician or physical therapist to make sure that they think it is a good idea to try.

So, here we go:
1. Always practice Progressive Muscle Relaxation in a quiet place and with no distractions.
2. Wear loose clothing and take off your shoes
3. Either lie down or sit in a very comfortable chair.
4. Try not to eat or drink right before doing PMR.
5. Try doing PMR twice per day or whenever you feel yourself starting to stress a bit.
6. If you do it at night in bed, don’t be surprised if you fall asleep while doing it which is a good benefit of doing PMR. This is a great thing if it happens but it doesn’t happen for everyone.

Starting at your right foot, crunch up your toes and hold for about 10 seconds until it starts to feel a little uncomfortable, then let go and relax those muscles.
Imagine the tension in your foot going out of your toes and imagine that your foot feels very light and relaxed. Or imagine the tension melting, dissolving, and finally disappearing out the tips of your toes. Another image to have is that you are floating on a float and that the water is supporting you and you can just sink down into the float. As you exhale, let all of the tightness and pain flow out of the muscles. Feel the muscles relax and become loose and limp, tension flowing away like a wave flowing out from shore.
Continue doing this process for each muscle group in the following order:
1. Right lower leg
2. Right calf muscle
3. Right hamstring and knee
4. Entire right leg
5. Do the same thing on the left side, foot, calf muscle, hamstring and knee.
6. Right Hand
7. Right forearm and hand
8. Entire right arm
9. Reverse and do the same thing on the left side
10. Butt. I tell people to scrunch up their butt or push it into the chair or bed.
11. Abdomen
12. Chest
13. Shoulders
14. Neck
15. Facial Muscles, scrunch up your facial muscles

When you have gone through the whole procedure, scan your whole body for anyplace that still feels tense. Then go through the procedure with that part of your body. Once your body is as relaxed as you can make it, you might just sit and enjoy the sense of relaxation for 5 or 10 minutes. It can be a great stress reliever.

Dr. Robin

Here are some suggestions but please add your own.

1.  How do you arrive at a diagnosis of fibromyalgia or chronic fatigue syndrome?

2.  What lab tests need to be done?

3.  What are the treatments available to try to help me including medications, exercise, physical therapy, biofeedback, alternative treatments (such as yoga, acupuncture, meditation, supplements, stress reduction, and diet)?  What additional treatments might you suggest?

4.  If you are to be put on medications, ask what side effects are common and don't forget to bring a list of those medications that you are currently taking including supplements?

5.  Is there anything that I should avoid like certain medications, exercise, foods?

6.  What particular exercises should I do and for what period of time?  Note, if you do too much exercise, it often results in a relapse.  How about physical therapy and massage?

7.  Are you aware of any resources to help such as a local support group, internet groups, books that you would recommend?

8.  Do you recommend any counseling and if so, do you have someone who you would recommend who has experience with fibro/cfids?  The counselor might provide support as well as help with dealing with pain and sleep more effectively.  Cognitive/behavioral therapy is also being used a lot for Fibro and CFIDS.  You might ask your physician if he/she knows someone who specializes in this area.

If you have already been through a number of treatments with little or no change, you might want to ask the following:

9.  Are there any clinical trials that would be appropriate for me?

10.  How can I explain to family, friends, and business associates what my illness is about and how they can help me?

11. Should I have a sleep study?

12. How much will I be able to work, if at all?

I would also suggest that you keep a file with all of the questions and answers that you have asked and received an answer to.  Because most of us can experience fbro fog or brain fog, you may forget some important information if you leave it up to your memory.  And remember that tape recorder and/or bring a friend with you.

Please, write in with some of the questions that you have asked your doctor that aren't on this list. It might help someone else.

Warm fuzzies to you;

Dr. Robin