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Julie's Story: A Young Mother with Fibromyalgia Since 2008

  [ 106 votes ]   [ 12 Comments ]
By Julie Wendell* • • March 16, 2011

"Mommy, open this, please?" my 3-year-old son asked as he handed me a cereal bar early one morning. I tried to tear off the top of the wrapper, but my fingers would not move or grasp the wrapper! Terrified, I tried opening it again, but to no avail. I had lost all strength in both of my hands!

As calmly as I could, I asked my 7-year-old son to open the cereal bar for his brother. But inside, I was panicking because the weakness in my hands persisted for about an hour. What was happening to me?

February 2008

Little did I know that the morning of February 10, 2008 marked the beginning of a myriad of severely painful symptoms. My life was about to change drastically.

Over the course of the next few weeks, I started to experience alarming new symptoms. In addition to the weakness in my hands, I noticed that the joints in my hands were very swollen and stiff.

I even took pictures of my hands from all angles to make sure that their odd shape was not just my imagination. I would often feel sharp zinging pains in my extremities, especially in my hands, wrists, knees, and ankles. My muscles and joints ached like I had the flu.

There were times when I would be convinced I had a temperature of at least 101, just to find out it was completely normal every time I checked.  

My level of fatigue went from "full time single working mother" to "full time single working mother who also ran 100 miles a day." I was physically exhausted from dealing with so much pain every day.

To make matters worse, I started noticing that when I woke up each morning, I would not feel refreshed, even after a full straight 6 to 8 hours of sleep. Instead, it felt like I only slept for one hour each night.

So not only was I physically exhausted, I was emotionally drained as well.

The overall level of exhaustion was indescribable, the worst I have ever experienced in my life! But I was hoping that whatever was plaguing me would just stop on its own.

April 2008

One afternoon in April 2008, after I got off work and picked up my kids, I couldn't get home fast enough. My body was overwhelmed with pain like I never felt before. As soon as we walked through the door, I immediately headed for the couch, where I spent the next four days. I had to call my mom to help me take care of the kids.

In addition to my ongoing symptoms, I also suffered from oppressive chest pain, muscles/joints that felt bruised, extreme coldness in my arms and face, and TMJ-like jaw pain. I also had the sensation that my aching spine and pelvis were going to slide out of my body.

I cried often, because I had no idea how to cope with these bizarre symptoms. I tried heating packs, ice packs, Tylenol/Advil, but nothing even remotely helped me. My temperature was still normal at 98.6.

My mom, who is a nurse, thought maybe I had a virus. But most of the symptoms did not even resemble any virus I had ever had in the past, plus I was not running a fever.

Even after the four worst days of feeling severely ‘sick’, most of my symptoms never fully disappeared.

Rheumatoid Arthritis, Lupus, Mono, MS?

At this point, I was at my wits' end, and finally decided to get some help. Even though I was terrified of the possible outcomes, I made an appointment to see my primary care physician. After reviewing my list of symptoms and seeing the pictures of my hands, he thought it was very likely that I had rheumatoid arthritis.

He immediately referred me to a rheumatologist, who wanted to test me for not only rheumatoid arthritis, but also lupus, mononucleosis, and multiple sclerosis. He ordered some X-rays of my hands and a lot of bloodwork. He also prescribed a week's worth of steroids to see if that would help.

My daily life started becoming a real chore for me. Everything and anything I usually did without a problem was now unbearable or overwhelming. The mornings and evenings were the worst times of day for my pain, fatigue, and weakness.

I tried to stay strong, especially for my children, but there were days where I felt like giving up on everything. I tried talking to a few friends and family members about how I was feeling, but they would just say that I was complaining too much and/or accuse me of being a hypochondriac.

I had never felt so alone in my life.

Tests – “Completely Normal”

The results of the blood tests and X-rays came back the following week and were completely normal. Also, the steroids ended up not helping me at all.

Based on these findings, the rheumotologist suggested that I may have fibromyalgia. He prescribed an NSAID [non-steroidal anti-inflammatory drug] called Mobic® (meloxicam) to help with my muscle/joint pain and an anti-convulsant/anti-neuropathy medication called gabapentin (Neurontin®) to help with my nerve pain.

The doctor said that diagnosing fibromyalgia was very tricky because there are no actual diagnostic tools. Instead, the diagnosis is made after everything else has been ruled out. He also wanted to wait and see how the next few months went with the new medications before confirming the suspected diagnosis.

Medications Helped

During the following months, both of the medications had made a difference to where my daily activities became more tolerable. I still felt very fatigued, but my quality of sleep seemed to be more restorative (due to the gabapentin). My muscle and joint pain were definitely persistent but they were on more manageable levels (due to the Mobic).

August 2008 – Diagnosis, Fibromyalgia

When I went back to the doctor in August 2008, he reviewed all of my test results and evaluated me again, then officially diagnosed me with fibromyalgia, a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints (definition by

The treatment for fibromyalgia includes pain medication and exercise.

• The doctor advised me to continue with the medications I was currently taking and to try doing light exercise when possible.

• He also warned me that my medication combination was not always going to be perfect. He said it may take a few tries with various medications before reaching optimal pain management, and what works for me now may not work for me in a few years.

I was completely devastated, knowing that I was going to live with unrelenting complicated pain and severe fatigue for the rest of my life.

Sometimes Gluten-Free Diets Help

Sometimes, in addition to medication and exercise, doctors recommend a gluten free diet to help alleviate fibromyalgia symptoms. Coincidentally, I had already been on a gluten free diet for 4 years, due to having an auto-immune digestive disorder called Celiac Disease.

Unfortunately, being on this diet did not stop me from having fibromyalgia, nor had it eased its symptoms. My doctor said that I'm one of the unlucky fibromyalgia patients who was not positively affected by a gluten free diet.

Sometimes I like to think that being gluten free has stopped my fibromyalgia symptoms from becoming uncontrollable.

The Feeling of Uninformed Stigma

A diagnosis of fibromyalgia carries a negative stigma in society because the symptoms are very vague and are not so clear-cut as other diseases/conditions. I have actually heard people say that there is no such thing as fibromyalgia, or that the symptoms are fake and they are all in the person's head.

It is also widely believed that people who have fibromyalgia just want attention and/or medication. There are many doctors who do not recognize fibromyalgia as an actual medical condition. Therefore, people who do have fibromyalgia usually have to see numerous doctors before receiving a diagnosis.

Luckily for me, reaching a diagnosis for my symptoms only took 6 months and involved seeing only 2 doctors. Some people suffer for years before finding an answer.

Growing Hypersensitivity

Since my diagnosis, additional symptoms have added themselves onto the original list, such as hypersensitivity to stimuli.

• For example, if there is too much light or sound, I start feeling very overwhelmed and need to remove myself from the situation.

• There are times where I cannot be touched, when even my clothes feel like too much overload on my skin and receiving a hug actually HURTS.

• I also started becoming sensitive to the weather patterns, especially low pressure systems. I jokingly call myself the "human barometer" because I seem to predict rain better than the weatherman! During periods of damp or cold weather, my muscles and joints heavily protest, and in turn, the pain increases substantially.

• I found that I have a low tolerance for any kind of exercise; it makes me feel worse rather than making me feel energetic and refreshed.

• I have also developed difficulty with my short term memory and concentration (i.e., "fibro-fog"), which has affected all aspects of my life, especially work.

Coping Day-to-Day

Today, it remains difficult for me to deal with the pain and fatigue that I experience every day with fibromyalgia. My doctor has changed my pain reliever from Mobic to tramadol (Ultram®), which is a bit stronger, so my pain is at a tolerable level most of the time. But I definitely have my share of bad days.

On a positive note, I have learned a few things from my experience with fibromyalgia. I've learned not to push myself to do more than I can handle, but I'm still learning that it's okay to ask for help. I have also learned to prioritize what is actually important and to just take things one day at a time.   

Having fibromyalgia has made me realize it is so important not to take anything for granted. After my diagnosis, my rheumatologist had pointed out to me that fibromyalgia is not a deadly or destructive disease, which is very fortunate. However, living with chronic pain and fatigue is still a difficult challenge, no matter what the cause.

Yes, fibromyalgia is REAL.

-    Julie Wendell


* Julie Wendell describes herself as person with Celiac Disease diagnosed with Fibromyalgia in February, 2008. She writes: “ I was born in Milwaukee, Wisconsin and grew up in Naples, Florida. I am a single divorced mother of 2 sons who are 9 and 5 yrs old and work as an office manager/dispatcher for an A/C company. I enjoy singing, reading, watching movies, playing outside with my kids, and learning something new every day. My goal is to be an advocate of Fibromyalgia and Celiac Disease awareness."

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Article Comments Post a Comment

The details are different but the story is the same.
Posted by: linger01
Mar 16, 2011
Thanks for sharing your story. I could relate so much to what you've gone through, the feelings you expressed and the changes in your life. I've had FM for 30 years, but have been actually diagnosed for only 10. This is a one day at a time disease. You don't know how you're going to feel each and every day. You just have to pace yourself, don't overdo it and do the best you can. Take care of yourself, so you can take care of your children. Thanks again.
Reply Reply

re: Julie;s Story
Posted by: rt207
Mar 16, 2011
Wow my story is so much like Julie's. She did an excellent job of describing what is so hard to put into words.......the pain and feeling of overwhelming tiredness that never, ever goes away. The part about the exercise too, they sent me to physical therapy and it made me flare for weeks. I now refuse to go when it is suggested. I know what my body can and cannot take these days, and try really hard to not push it too far. I can't stress enough the importance of finding a GOOD Rheumatologist, it's essential for proper diagnosis and testing to rule out other problems. The one thing I didn't see mentioned was the Tender Point exam. Lots of people do this, but you need someone properly trained to do it correctly. To make a diagnosis, you also need to have had pain in widespread areas of the body for longer than....I believe 6 months? I was awarded SSDI in 2007 for Fibromyalgia, which was pretty rare at that time, plus I was only 39 years old! I was a nurse working full time and just couldn't continue. Thank goodness I have a compassionate doctor and have been given pain management, although my meds have had to be adjusted many times. I currently take Methadone to manage my pain. Most people don't know that this started out as a pain medication, and only later was used for drug withdrawal. It's good for FM because it has a very long half life, so while it's not actually "extended release" you can take the doses further apart, and still get excellent pain relief. Good luck to all you guys who are in this with me, it's hard life but can be done. I remember crying too when I finally found out what was causing my pain......because I knew it would never go away. Thanks Julie for a great story! Roni :)
Reply Reply

julie´s story
Posted by: harboreen
Mar 16, 2011
Your´s is one a the few articles I´ve read where exercise actually makes you feel worse. This is the very case for me as well. I wish I could exercise to increase strength and stamina. Having tried numerous times only to suffer with setbacks for days or weeks at a time. After seventeen years my muscles which were in great shape prior to my fibro diagnoses have lost most of their strength and I fear what will become of me as I age. As you and I know all to well this is just one issue of fibromyalgia. I wish you better days ahead with strength and stamina to enjoy your young family. Good Luck!
Reply Reply

Posted by: asmom15
Mar 16, 2011
Your story has really hit home. I have had Fibro and Chronic fatigue syndrome for 12 years. The isolation is horrible. You feel like no one cares or they get tired of dealing with you. I have problems with walking and standing long. Dizziness and vertigo came a few years later, really keeping me in doors. I have chemical sensitivity so taking drugs is no option for me. I have tried over the years and they make me feel worse. I have developed depression, and anxiety and have been dealing with that also. This is no joke, and needs to be taken seriously. I went thru hell trying to find someone to believe me. I went from an active sports person, coach and mother of 2 girls. To basicly a couch potato. I fight everyday, and force myself to try and do things. I also can't do any kind of exercise, or just going out and socializing causing me extreme fatigue, which takes me days to recover from. Bright lights and noises also affect me greatly. The pain exhausts me and all I want to do is sit and rest, but then that just gets me all stiff. Doctors in the beginning told me it was all in my head, and to take antidepressants, but they only made me feel worse. I have missed out on alot of my life and my girls lives. I take alot of vitamins, the one thing that has helped with the fatigue is COQ10. Also having thyroid issues now, so dealing with that and menopause, what a joy. I feel for you and know what it is like to feel all alone in this. But hopefully you have an understanding family. Take care and wish you well.
Reply Reply

Fybromyalgia (I cried)
Posted by: angeline64
Mar 16, 2011
Julie, your story makes so much sense. I know exactly where you are and it makes me sad to know that I will continue to struggle.I feel like I have tried everything to help me feel better but digging myself a hole. I have been taking morphine (prescribed by my doctor) for a year and a half and have been suffering with FM symptoms for over ten years. I never know what to do next. The morphine is strong enough to deal with the pain but the side effects are also strong. The exhaustion and fatigue is monumental which the morphine does not help with. I pray every day for answers and still don't know what to do.
Reply Reply

Fibromyalgia Treatment
Posted by: OzChick
Mar 16, 2011
I was finally diagnosed with Fibromyalgia about 15 years ago and know all about the horrible symptoms Julie and others are experiencing. I refused to take drugs my doctors wanted to put me on, but OTC drugs didn't touch my pains and very bad muscle spasms, so I kept searching the net for answers, and found one that works for me and thousands of people with FMS. After almost four years on this protocol I am about 90% better. Please read 'What your Doctor May Not Tell You About Fibromyalgia' by Dr Paul St Amand, and go to his website: .This protocol will not cure FMS, as there is no known cure to date, but by following it to the 'T' your symptoms will gradually reverse. FMS is not a life sentence if you take this road!


There is an easy and effective way to relieve your Fibromyalgia Symptoms
Posted by: Susan_with_hope
Mar 16, 2011
Dear Julie (and other responders), Your story is not that different from mine. Please see Susan's Story at Click on "About Us" and then "Meet the Co-founders" OR copy and paste the following link: I have been fibromyalgia symptom free for 6 years now and you can be too! It's easy, painless, and takes most people 6 weekly to get their lives back. Please check out and contact us with any questions. Wishing you health, happiness, and peace, Susan Minneapolis, MN
Reply Reply

Fibro treatments
Posted by: CarolBuck
Mar 17, 2011
Julie (and everyone who has fibromyalgia), One thing I have found as an exercise is deep-water aerobics. But the pool must be around 84-87 degrees. Any cooler is detrimental, any warmer will possibly weaken the muscles. I and others like me have found this to be extremely helpful, even for the depression and, sometimes, for the sleep. Massage from a licensed massage therapist can break the pain and swelling cycle, but no aromatherapy or exotic oils. One thing my daughter found during her computer research (she was also in great pain and exhausted with fibro) was a reference on the U.S. Centers for Disease Control web site to the use of colostrum for fibro and many other disorders. The CDC recommends pure colostrum powder, usually in capsule form. It must be from certified organic cows, taken within 12-16 hours of the birth of the calf. I always recommend to my students that they start out slowly, with one capsule per day (usually about 500 mg) taken with water at least 2 hours after eating or 1/2 hour before eating, with nothing else taken during those time periods, including medication. Do that for the first 4 or 5 days to prevent any heavy detoxing which would cause headaches, digestive problems, etc. Then increase the dose slowly to at least 2000 mg per day. The CDC has stated that any more than 6500 mg per day is just a waste of money, that this is the highest effective dose. If you have side disorders, such as MS, lupus, etc., try Dr. St. Amand's guaifenesin treatment instead. It works for many. For those who may have problems with foods, keep a daily journal of everything you eat and drink, how you feel at any given time, how you sleep, pain levels, etc. After maybe 3 or 4 months, you may see a pattern that will help you get better. One thing I have found with most of my students is that they have a problem with eating too many carbohydrates. One gave them up completely, with astounding results. I tried that and shook violently for 4 days, so gave up and just lowered the amount I was eating and went to whole grains. Lots of veggies might be helpful with the fatigue, especially when eaten at breakfast time, but stay away from white potatoes and tomatoes until you can determine whether or not they are contributing to your symptoms. Lean red meats also help in small amounts at breakfast or lunch. I would also strongly suggest your physician check you for possible aluminum or mercury toxicity. They cause a lot of the pain in many people, plus they are physically destructive to the body. Prayers help, too. So does talking about the disease with many people. We fibromyalgics have to stick together and support each other. My love and best wishes to all of you, that you may become as happy and energetic and as low-pain as this 69-year-old fibromyalgic.
Reply Reply

Fibro vs CFS
Posted by: ccantiques
Mar 17, 2011
With all due respect, check the diagnostic criteria for chronic fatigue syndrome. You might be surprised that you better fit the diagnosis of cfs. Although I have to say I have NEVER heard of swollen joints occurring in either cfs or fibro. Have you been tested for Lyme disease?? I've had cfs/fibro, whatever you want to call it since July 1988 - nearly 23 years. I used to see a specialist who swore that most cfs specialists are convinced that cfs and fibro are the exact same illness. The only difference being that people who get a diagnosis of cfs tend to have fatigue as their primary symptom and pain is secondary. If pain is your primary symptom you tend to be referred to a rheumatologist and get a diagnosis of fibro. My primary symptom is pain but I fit the diagnostic criteria of cfs perfectly. I tell people I have fibro because people actually have MUCH better understanding and empathy for that diagnosis than they do of cfs. If I tell people I have cfs they say "oh so you're just tired all the time? maybe you need more exercise". Duh...
Reply Reply

Wow, understand the path, applaud your coping
Posted by: yupitisFM
Mar 18, 2011
This is my experience as well - though not with the children. I just don't know how you and the others out there trying to take care of children and cope with FM do it. Applause and peace.
Reply Reply

Your experience sounds so familiar
Posted by: Grandma Bogart
Mar 18, 2011
Fibromyalgia is like a chameleon, it hides, it morphs, it mimics. I began having small episodes in the mid to late 80's. Some of my 1st symptoms, like yours included excruciating hand pain with swelling, bad enough to turn one knuckle black. I too had young children (born '81 & '82), but was blessed with an incredible husband who was & is always there for me. Ironically at that time I also was an office manager/dispatcher for a Refrigeration/A/C company. After enduring negativity from both the medical profession & the general public I was finally diagnosed in 2000. Even after being diagnosed by a prominent rheumotologist I still had to endure the "suck it up & get over it" attitude from many. We are blessed in Canada to have a Fibromyalgia Day Program run at St. Joseph's Hospital in London. Four weeks, Monday to Friday including group classes of physio, pool therapy, relaxation therapy, pacing, information lectures & more. They even had a session on Friday afternoons when family & friends were invited to learn more about Fibro/CF to be more supportive. It was a lifesaver. "FibroLand" as I referred to it was a place where you didn't have to explain why you needed to leave a lecture or activity to go to the quiet room. The very 1st day the Program Director told us "To all the people who think Fibromyalgia doesn't exist - Do you think the Canadian Government & the Ivy Family (the program's benefactors)would invest the millions of dollars it takes to run 9 of these programs per year, if Fibromyalgia didn't exist?" The program validated me. I have accepted that I am unable to work & applied for & am now receiving a C.P.P. disability pension. I now acknowledge who I am. Pacing is crucial as well as allowing myself to say no if I feel I need to. Blessings to all "FibroFriends"
Reply Reply

Posted by: melrose44
Apr 14, 2011
About 10 years ago, I developed sarcoidosis. Shortly thereafter the fibromyalgia symptoms began. My journey has been very frustrating, as most of you with FM know. I became very angry and bitter because my doctor refused to hear what I was telling him. When I would describe my muscle pain, his response was, "Sounds musculoskeletal to me." Really? I also suffer from migraines, and these have also intensified in frequency and severity. I took it upon myself to see a rheumatologist and thankfully he listened to what I had to say, and he didn't make me feel like I was crazy. He diagnosed me with FM. After a round of blood work, he informed me that my vitamin D level was one of the lowest he had ever seen (5). He told me that a lot of his patients feel better once they take the prescribed dosages of vitamin D but he wasn't going to assume that I would - he said we'd wait and see. Like most people have said, exercising seems to increase the pain, not help it. I've found that swimming is the best exercise for me. And it also relaxes me. I just think it's a shame that FM sufferers are made to feel like they're crazy because some people don't want to accept it as a real illness. I've had a few friends ask me why I haven't applied for disability benefits, but that just isn't an option for me. To me, that would be admitting defeat, and I'm not ready to give up the fight. My family is very supportive and I'm so thankful for that. Thanks for listening.
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