FOR IMMEDIATE RELEASE

LADY GAGA FIBROMYALGIA ANNOUNCEMENT GIVES VOICE TO MILLIONS OF PATIENTS

Superstar seeks rejuvenation and reprieve from symptoms of disease

Logan, Utah. Sept. 19, 2017 - Statement from Sharon Waldrop, Vice President of the National Fibromyalgia & Chronic Pain Association on Lady Gaga’s recent announcement that she suffers from the illness:

lady gaga sm"We commend Lady Gaga for the incredibly brave act of revealing her fibromyalgia diagnosis. By sharing her story with the world, she is giving voice to the estimated five million Americans like me--overwhelmingly women--who suffer with the illness.

Fibromyalgia is characterized by a long list of symptoms, including chronic pain and debilitating fatigue. The cause is still unknown, there is no cure and it lacks effective treatments and understanding. Better treatments and a cure can be found, if we raise awareness of the disease and the devastating challenges it presents daily to millions of American families.
Fibromyalgia’s invisibility and the public’s misunderstanding of its effects often leaves people afraid to reveal their diagnosis. When I was diagnosed with the disease I thought my life was over. My once-healthy body suddenly felt badly bruised and broken even though on the outside I looked completely fine. I was even yelled at for using my disability parking pass, because people didn’t believe it was mine. Those who suffer from fibromyalgia could be your friends, coworkers, neighbors and family members, who have been suffering in silence with this disease for years. It is our hope that Lady Gaga's courageous act to step forward into the light will inspire others to do the same.

More answers are out there, but we need everyone's help to advocate for increased resources toward finding them. We urge the public to contact their legislators and ask them to implement and fund the National Pain Strategy developed by the Department of Health & Human Services to address the burden of Chronic Pain in America. We look forward to continuing our work on finding a cure for fibromyalgia. With the support and participation of leaders like Lady Gaga, the government, advocates and patients, no goal is unachievable."

The National Fibromyalgia & Chronic Pain Association is your partner in tackling fibromyalgia and chronic pain. Our goal is to end chronic pain conditions from derailing lives by promoting early diagnosis, driving scientific research for a cure, and advocating for appropriate, accessible, and affordable treatments. Join our online community at fmcpaware.org.

MEDIA CONTACT: Sharon Waldrop
248-885-4673; waldrops@famichigan.org

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When I found out at 36 years old that I was pregnant with my first child, I knew I wanted to breastfeed. So I dove into every available breastfeeding book, visited online forums, and my husband and I attended the breastfeeding class offered by our hospital. And although all of this education helped me, none of it addressed what breastfeeding would be like for a new mom with daily muscle and joint pain.

 

How was I going to manage it with my fibromyalgia—with my neck, head, shoulder, arm, hand, wrist pain, daily migraines, and chronic fatigue? Could I handle the demands of breastfeeding with its around-the-clock feedings? Where would I get the extra energy that it would require of my body to care for myself, to feed my baby, and make my milk supply?

 

I wasn’t sure that I could handle it, but I knew that I wanted to give it a try. After ten and a half months of breastfeeding here are a few tips that I have learned—most importantly: I did it, and enjoyed it, and so can you!

 

The hormones while nursing helped ease my fibromyalgia pain and migraines.

 

Begin your breastfeeding journey without placing any expectations on yourself. Know that this time is a sacred bonding time for only you and your baby. Everything else can wait. Remember that you are both learning. And in the beginning, breastfeeding takes practice and patience. You both will get the hang of it.

 

Breastfeeding is natural. Remain calm. Concentrate only on the task at hand. Focus on your breath. Breathe. Listen to the little sounds that your baby is making. Focus on the love, nourishment, and support that you are providing for your baby. Be gentle with yourself.

 

Please keep in mind that nursing a newborn can take up to two hours per session. Breathe and relax. Don’t panic. This is normal due to baby’s hiccups, gas, and tendency to fall back asleep. No one told me this and I never found it in any of my breastfeeding books! Just realizing that this is normal ahead of time can help ease your mind and reduce your stress level.

 

Enlist hubby or partner to do the diaper change and /or bring the baby to you whenever possible. All housework can wait. Your main job right now and for the next few months is feeding your baby and that is okay. Be gentle with yourself.

 

Make sure that you learn all of the positions and holds. Do not leave the hospital without mastering at least one of them! You will need to alternate them often. Alternating the holds will help with your fatigue (breastfeeding while lying down), muscle stiffness and pain, and nipple soreness.

 

I started out in the hospital with the football hold and felt confident of it before I left the hospital. Make sure that you do the same. I wanted to stick with that hold until I had it mastered and I knew that I had the proper latch-on. This took about a week. Once mastered, I realized that this hold was aggravating my fibro. I then switched to the cradle hold. Once I felt comfortable with that hold (this was at about the two month marker), I learned the lying down position and alternated them. It is very important to keep trying different holds until you find the right one for yourself. You may still have pain, but there are exercises that you can do to stretch your muscles. (They are included below.)

 

Make sure that you get the correct latch-on before you leave the hospital. This is vital for preventing future breast infections.

 

The nurses in the hospital are a wonderful resource and they are usually all trained in breastfeeding and can help you. No offense to the lactation consultants in the hospital, as they can be a wonderful resource, but they were too pushy for me. They didn’t understand my fibromyalgia, which caused me more stress and anxiety. Don’t be afraid to fire the lactation consultants and ask the nurses for help.

 

Make sure that you have at least one breast pump at home—either hand-held or electric—prior to your arrival home from the hospital. The Medela Harmony Breast Pump Series is wonderful.

 

If you need to supplement with a bottle filled with breast milk or formula, then do so. Do what feels right for you. Be gentle with yourself and with your preconceived thoughts about nursing. Plans can change, and that’s okay.

 

My baby had jaundice at four days old, just as my milk was coming in, and he had to be on the bilirubin blanket for three days. I had to stop nursing him at this point and I pumped and dumped to keep my milk supply up.

 

I also had gestational diabetes while pregnant and the baby was given glucose in a bottle right after he was born. So, he was used to the bottle. I was worried about this. In my case, this did not cause any problems of nipple rejection when it came time for breastfeeding.

 

My husband and I worked out a system. Every night at around 6 p.m. he would bottle feed the baby 4-6 ounces of formula while I slept. I would then wake up at 10 p.m. and resume the two hour nursing schedule. This system worked out well for us and ended up being the only chunk of time that I could sleep for the first four months.

 

Stay hydrated in order to maintain milk production.

 

Try to rest as much as possible in between feedings. The housework can wait.

 

Eat six mini-meals per day packed with protein and good fat.

 

Invest in a Boppy. Buy one for each floor of your house. The Boppy is great for positioning the baby on your lap when breast feeding.

 

Invest in a good nursing bra with good support. Bravado bras (you can find them online) are wonderful. They are available in plus sizes and are made of a comfortable and stretchy material. They also have cotton/terry cloth “breathable” and “washable” breast pads that are very comfortable on sensitive skin.

 

Switch your holds and positions. With FM, any repeated activity will give you more muscle pain. So it is important to learn the different breast feeding positions.

 

Develop a routine. Use more than one position or hold each day. I always nurse the baby in bed in the morning. I either have my husband bring him to me or I go get him and then I nurse him lying down. Usually, the first two feedings of the day are done in bed. This allows me to rest a bit more. Once the baby is fed, he takes a nap in his crib and then I take a shower.

 

Always wash your nursing bras, tanks, tops and breast pads separately in hot water with laundry soap or wash in cold water with laundry soap and one cup of white vinegar.

 

Gentian violet works well for breast yeast infections and thrush. You local pharmacy can order it for you.

 

Cherish these moments. They too soon will come to an end.

 

Gentle Stretches for the Breastfeeding Fibromyalgic Mother


Middle and Low Back—The Cat Stretch—Start on the floor (or on your bed) on hands and knees. Arch your back and imagine your mid-back being gradually lifted up toward the ceiling. Hold for 10 seconds. Gradually lower your back and repeat six times.

 

Neck/Shoulders/Thoracic Spine/Headaches/Fatigue—Child’s Pose—Begin by kneeling. Sit on your heels and extend your arms forward. Rest your forehead on the floor. Relax your neck, face, and shoulders. Keep your arms stretched and fingers spread. Take 10-15 deep slow breaths.

 

Upper Torso/Chest—Stand in a doorway. Brace your arms on each side of it at shoulder height or lower. Lean forward. Hold for as long as you’d like. Feel the gentle stretch.

 

Front of Shoulders—Stand and touch the tops of your hands to the small of your back. Take a nice deep breath in and, while exhaling, gently press the shoulders backward and down. Repeat six times.

 

Back of Neck—Take a nice breath in, then tuck the chin in and exhale while moving the head forward and down. Repeat six times.

 

Side of Neck Sit on a chair, back straight, head facing forward. Turn your head to face one corner then tuck the chin in and down, toward the collarbone. Let gravity provide a gradual pull. Repeat six times.

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Life with a newborn is overwhelming and exhausting, even for healthy parents. So what’s a new mom with fibromyalgia or a chronic pain illness to do? These simple steps can help you survive and enjoy the first few months of your baby’s life.

 

Be Prepared
Going shopping on your own can be tiring enough, even without having to tote along a massive diaper bag and carrier car seat. Before your baby is born, stock your house with everything you think you might need over the coming months. Make sure you have a very large supply of diapers, and if you plan on bottle-feeding, buy a good amount of formula as well.

 

If the responsibility of meal preparation usually falls on you, this is one area that you may want to plan ahead for as much as possible. During the last month of my pregnancy, I made several meals to store in the freezer. This can be done easily by doubling recipes. Have some of your favorite take-out menus available too.

 

Be Realistic
When planning for your postpartum period, don’t overestimate your abilities. Caring for yourself and your newborn will take up all of your time and energy. You should recognize that having FM may make your recovery period longer than normal. I was told in childbirth class that a healthy woman who underwent a normal delivery should not do any housework at all for the first two weeks postpartum. Since it normally takes me longer to heal than most people, I tried to do as little as possible for the first four weeks after delivery. You may need six weeks, or even longer. Listen to your body and give yourself plenty of time to heal before you start attempting any additional activities.

 

Take All the Help You Can Get
New babies tend to attract a lot of visitors. If your friends and family are considerate of your situation, hopefully they will offer to bring meals when they come to admire your baby, or give their help in other ways. If not, there is nothing wrong with telling them that you could use some help while they are visiting. Ask your mom to pick up some groceries before she stops by, or ask a friend to get the laundry out of the dryer for you. These offers of help won’t last, so take advantage of them when you can!

 

If you are financially able, you might also consider hiring a doula for your immediate postpartum period, or having a cleaning agency do the major housework for the first few months of your baby’s life.

 

Naps are a New Mom’s Best Friend
We’ve all heard that saying, “sleep when your baby sleeps,” but unfortunately, this practice doesn’t always work out in real life. Sometimes the baby only sleeps 10 or 15 minutes—just long enough for you to get comfortable and settled in to nap. Other times, you may be feeling physically exhausted, but still too alert to sleep. Don’t force yourself to nap every time your baby does if you aren’t ready for sleep. You can always relax in other ways. Spend some time reading, watching TV, or surfing the net. Rejuvenating your spirit is important too.

 

During the first few weeks of my daughter’s life, I made it a point to try and get a good nap every afternoon, continuing a habit I’d developed during my pregnancy. After a rough night, I often napped in the morning too. Find out what works with your own inner clock, whether that’s going to bed earlier, sleeping in later, or taking several naps throughout the day.

 

Make Yourself Comfortable
New moms tend to spend a lot of time hunched over their babies, particularly during feedings. This can cause a great deal of pain and tension in the neck, shoulder and back area. Fortunately, this pain is somewhat avoidable. Make sure you are sitting in a comfortable position before feeding your baby. Watch your posture and try not to sag into yourself. A nursing pillow will be very helpful with this, whether or not you are breastfeeding. The pillow will allow the baby’s weight to be supported by your lap, taking the strain off your back and arms. I used my nursing pillow so much while my daughter was a newborn that I started to feel like it was attached to my midsection.

 

As your baby grows larger and heavier, you may want to consider doing some gentle stretches or a postnatal yoga practice to ease some of the strain on your body.

 

Convenience is Key
Take a look at your arrangements for baby care and make sure they are in the easiest configuration possible. You should have diaper changing supplies on each floor and close to the areas where you and the baby will be spending most of your time. You don’t want to be wasting energy running back and forth across the house a dozen times a day if the changing station is inconveniently located. Also, watch out for your back when you change those diapers. It may not seem like you spend a lot of time changing a diaper, but when you are doing a dozen changes a day, it really adds up.

 

Making Nighttimes Easier
One easy way to help minimize the amount of time you’re awake at night is by having your baby sleep in your bedroom. Set up a bassinet or cradle, or consider a co-sleeper. This arrangement is particularly good for nursing moms. If you are bottle-feeding, involve your partner in the overnight feedings, getting up to feed and change the baby at least some of the time. Breastfeeding moms can consider supplementing with formula or pumping milk to allow themselves some longer stretches of sleep.

 

The Feeding Dilemma
The choice between breast- and bottle-feeding is one of the earliest and most important decisions you will make for your newborn. Although many women assume that they will have to bottle-feed in order to continue taking their medications, this is not always the case. There are a surprising number of medications that can be taken safely while breastfeeding. If you really want to breastfeed, talk to your obstetrician ahead of time about which medications you will be able to take.

 

Breastfeeding with FM is absolutely possible. My daughter is four months old and has been entirely breastfed since day one. While breastfeeding your baby can make it harder for you to get several hours of consecutive sleep, particularly in the early months, you may find that the rewards outweigh the sacrifices. I have come to cherish the times I spend nursing my baby, and I feel that the benefits to my daughter’s health are worth the interrupted sleep.

 

Forget Perfection
No parent can be perfect—not even a healthy, energetic one. Don’t create impossible standards. Your baby doesn’t care if you can take her to Mommy and Me classes. Your baby doesn’t care if his laundry never gets put away. All your baby needs is your loving attention, a full tummy, and a dry diaper. Focus on the love and care that you can provide for your baby, and forget about the rest. Just try to do the best you can each day with the strength you have. Some days will be better than others, and some days will be downright awful, but the loving bond you share with your baby will make it all worthwhile.

 

Be Aware of Time
Though the cycle of nighttime feedings and diaper changes may seem endless, keep reminding yourself that the newborn stage does end. While I know that’s hard to imagine, especially when you are rocking a wide-awake baby at 3 a.m., the newborn days are very brief in comparison with the rest of your child’s life. Savor these special moments with your new baby.

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I am a mother of three, soon to be four. My kids are 9, 6, and 2, and the baby is due in June. My major FM symptoms started after I had my second child, so I have been dealing with parenting and fibro for about six years.  
  
Kids want a parent that is present and interested in their lives, and that doesn't necessarily mean you have to be constantly active and running them here and there. I feel like my children have gotten a bigger piece of me because of all the days I've needed to rest on the couch. These are the days we've spent looking at books, learning about different animals and watching shows together. These are also the days that they tell me their likes and dislikes, and I really get to learn their personalities.  
 
I also feel like having a parent with FM is teaching my kids to be compassionate and they will go out into society with an understanding of those with chronic pain. They won't tell someone it’s "in their head" or to just "get over it.”  
 
Here are some of the tips that work for me. 
 
Newborns
1.  Accept help!  
Newborns don't sleep much and new moms, especially with FM, need as much sleep as possible.  When friends offer to come over and help with the house, baby, or dinner, say “Yes!” Don't worry about the housework during this time; it will still be there when you start getting more sleep. If you can, freeze meals ahead of time so you don't have to worry about cooking during this time.  
 
2.  Divide duties, especially night time feedings.
If you are breastfeeding, breast pumps are great for getting more than two hours sleep at a time. For the first week our daughter was home, my husband would bring her to me when it was time for feeding and then he would get her when she was done. This allowed me to sleep between feedings and gave him bonding time during the week he was off. After awhile I pumped and kept extra breastmilk stored for weekends so that he could do the night feedings and I could get a little more uninterrupted sleep.
 
3.  If you have older children start a ritual of "Mommy and Me" snuggly time.  This is a great time when you can rest in bed and read a book or watch a show with your older children.  It allows you to continue to rest and also gives that child your undivided attention.
 
Toddlers
1.  Find ways to be active with your toddler.
Toddlers love to learn about new things and explore. I sit on the floor and lean against the couch and surround myself with toddler toys. Then my daughter will run and get me things, and she thinks this is a great game. I also have little balls that we use to play catch or roll across the living room floor. This doubles as a learning tool too because I use the balls to teach her colors and the toys to teach her shapes!
 
2.  Mommy “time-out”
It’s always important to have "me time,” even if it’s just 15-30 minutes a day. Letting your partner watch the kids while you take a bath is a great way to take care of yourself, and the bath can help loosen up those stiff muscles.
 
3.  Cuddling time
Truly, kids just want our attention and to know we care. Looking at a book can be a great way to connect with your child and teach them different things. I've also found that my kids, especially as toddlers, love to cuddle on the couch or bed. My daughter, 2, loves to lie in my bed and "talk" to me. I ask her "What do you want to talk about?" and she will just talk away while I nod and ask questions. She is only 2, so sometimes I'm not quite sure what she is saying—but it’s fun to teach her how to pronounce things and learn how her little mind works at this young age.
 
School-Age Kids
1.  Learning to help
I found that as my kids got older it made them feel good when I let them help out around the house. They are 9 and 6, so it’s mainly small things, but we started this when my oldest was younger and now he will ask what he can do to help out. I was always worried he would feel neglected that I can't do a lot of physical things, but my husband and I trade off, and on good days I do what I can. My husband taught our oldest how to ride a horse, and he loves that on my good days I will get on his horse. Now it turns into him teaching me something! That makes him feel good and builds his confidence.
 
2.  Be honest
I have found that my kids respond better to explanations than to me just saying "I don't feel good.”  Our kids know what FM is, and that Mommy has chronic pain. (Of course, the explanations are done in an age-appropriate manner.)
 
3.  Have "special times"
My 9-year-old no longer wants to snuggle on the couch or let me read to him. So we've had to find things we can do together on the "bad" days. This changes based on his interests. Both my sons got Nintendo DS's for Christmas, and my oldest son and I "PictoChat" from different rooms of our house. We play "unscramble the words" and question/answer.

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