Posted by: nashuafibrosupport | June 28, 2012

My journey back to health (part 3)

From My Journey Back to Health …part I:

I am pleased to post today that I have not experienced any Fibromyalgia flare-ups for nearly 3 months now….I still experience an occasional joint pain here and there, sometimes have trouble sleeping, but nothing compared to how I felt 4 months ago.

Before I share how I did it, allow me to clarify one key point: I am not a salesperson, am not affiliated or associated in any way with any of the products or people listed below. I will gain absolutely nothing if you choose to follow the same path I did, other than the satisfaction of knowing that what worked for me had a positive effect on you. I can’t stress enough the importance of consulting your doctor before changing anything in your current daily routine.  It is important for you, the reader, to understand that everyone reacts differently to different treatments, and results will vary.

Let’s recap the information on the previous posts:

Part I – Patricia Stephen’s theory and the importance of working with your doctor to identify hormonal imbalances

Part II –Start by making some modifications to your daily routine

Part III –Correcting the hormonal imbalances with natural therapies / herbal medicine

The last piece of the puzzle

By working with my doctor and obtaining a thorough blood and hormone work-up, I was able to identify that my levels of magnesium, iron, serotonin, and dopamine where not appropriate. The next step in my journey was to understand the proper way to bring these to the right level and keep them balanced. This required a bit of trial and error and a lot of commitment on my part.

Prescription medication

My doctor went back and forth between prescribing anti-depressants or anti-anxiety medication. I am not a doctor, but I do know these medications address different hormones (see part I of this post) and work differently. He decided to prescribe Zoloft, which I have not used yet. I also weaned off my Neurontin medication before starting all these changes. I wanted to be medication and supplement free to be able to make a clear distinction if and when results were achieved. I am in the process of being tested for ADD or ADHD, and am waiting for those results before I choose to get on formal prescription medication. At this time I am feeling great and don’t believe I need anything more.

Natural medicine / supplements / herbs

As I’ve mentioned previously, this is my preferred route. I believe in alternative medicine and will always start trying natural remedies before resorting to chemical pills. This is just my preference; it does not have to be yours!

Magnesium- According to About.com: up to 90 percent of Americans don’t get the recommended daily allowance (RDA) of magnesium from their diet alone. Symptoms of magnesium deficiency can include leg cramps, migraines, fatigue, loss of appetite, depression, nausea and vomiting or high blood pressure. Magnesium contributes to bone health and is an electrolyte, so it reduces muscle spasms. The RDA of magnesium is 320 mg/day for women and 420 mg/day for men. Sources of magnesium include nuts such as almonds and cashews, kidney or pinto beans, and dairy such as reduced-fat yogurt or milk.  I have noticed significant reduction in headaches and restless legs since I started taking magnesium tablets.

Iron – I have always had low iron levels, which could be a genetic condition. Iron is a key component in manufacturing hemoglobin, which allows the red cells to transport oxygen-rich blood throughout the body. Iron deficiency symptoms include fatigue, irregular heartbeat, pale skin, dizziness, irritability, and cold hands or feet. Sources of iron in food are any type of red meat, spinach, eggs, beans and iron-fortified cereals, among others. Consuming foods high in vitamin C will increase the absorption of iron. When I am low in iron I can tell almost immediately. I feel very fatigued, overwhelmed, and sometimes dizzy. I keep myself and iron pills, recommended by my doctor, which also maintains my energy level up (something people living with FMS could definitely use)!

Serotonin – To see a description on serotonin and the impact on your body, read part I of this post. Serotonin deficiency can lead to depression. It also influences your social behavior and decreases the body’s sensitivity to light, among other symptoms. Tryptophan is the best way to increase serotonin levels. Foods high in tryptophan include avocadoes, chicken, cottage cheese, dark chocolate, eggs, oats, pork, turkey, wheat germ, and wild oats. Try to include at least one tryptophan-rich food at every meal, choosing organic foods whenever possible. B vitamins (especially B1, B3, folic acid, niacin, pantothenic acid, and vitamin B12), calcium, and magnesium, all of which are usually found in a good multivitamin/mineral formula are also helpful. Tryptophan and its precursor, 5-HTP (5-hydroxy tryptophan) can also be used, although both of these should ideally be taken under your doctor’s supervision.

Dopamine – To see a description on serotonin and the impact on your body, read part I of this post. It was not shocking for me to learn that exercise increases dopamine levels in the brain naturally. I noticed this as I run, my fibro fog tends to disappear! Meditation also releases dopamine from your brain. Lean proteins and vegetables can increase dopamine production, as well as black beans, chick peas, nuts and seeds. Taking L-tyrosine as a supplement will assist in increasing your dopamine level but again, make sure your doctor is aware and on-board!

I found this article on livestrong.com that has a good recipe for balancing the levels of serotonin and dopamine. Read here for more information.

Tips and Warnings

If you have a high stress lifestyle, poor dietary habits, drink alcohol or have addictions, medications and supplements tend to wear off over time. For lasting results, increase your hormone levels naturally through diet and lifestyle changes, and only use supplements or medications when necessary and approved by a physician.

 

Bottom Line:

I know I have provided you with a lot of information to digest here, but re-read the 3-part post when you have some quiet time, analyze what you read and make sure it makes sense to you. I recommend you have an honest chat with your doctor about my story before you give anything I try. Modifying your daily routine can prove to be very successful and if you so choose, you can stop there. Taking supplements and other medication might require more investigative work on your part and your doctor’s supervision.

Today I feel wonderful, and am looking forward to no more FMS flare-ups!  I will keep you posted on my condition should anything change. For now, I am giving myself a big, fat KUDOS! for perseverance and commitment.

As always, please share what works for you. If you’re interested in more details, send me a msg or comment.

 

Related articles:

http://thyroid.about.com/b/2005/05/26/what-you-need-to-know-about-the-benefits-of-magnesium.htm

http://www.livestrong.com/article/540047-nutritional-suggestions-for-iron-deficiency/

http://www.ehow.com/how_4617145_naturally-increase-dopamine-levels.html

Posted by: nashuafibrosupport | June 28, 2012

My journey back to health (part 2)

From My Journey Back to Health …part I:

 

I am pleased to post today that I have not experienced any Fibromyalgia flare-ups for nearly 3 months now….I still experience an occasional joint pain here and there, sometimes have trouble sleeping, but nothing compared to how I felt 4 months ago.

Before I share how I did it, allow me to clarify one key point: I am not a salesperson, am not affiliated or associated in any way with any of the products or people listed below. I will gain absolutely nothing if you choose to follow the same path I did, other than the satisfaction of knowing that what worked for me had a positive effect on you. I can’t stress enough the importance of consulting your doctor before changing anything in your current daily routine.  It is important for you, the reader, to understand that everyone reacts differently to different treatments, and results will vary.

3.6 months pain free and counting…

If you have felt the pain of Fibromyalgia as much as I have, you will understand that I was at the point where I would try anything. As I have mentioned in previous posts, I do not wish to be on a daily prescription pill for the rest of my life, and will continue to look for ways to be prescription medication free as long as I can.  I want to be able to enjoy time with my family without feeling sick or having to rely on chemical pills, with potential side effects. If being on a daily prescription pill does not bother you and you prefer to do so, by all means go ahead and choose what works best for you.

I mentioned in part I of this post that the first step is to consult your doctor and order a complete blood and hormonal work-up. Once you have figured out what is out of balance, you can work with a nutritionist or other doctors to identify the best plan for you.  Again, I am on a natural medicine route.

When starting any treatment, to ensure success, you must be committed to taking your medication at the same or appropriate time each day and the right dose as well. You must also make changes to your daily habits.

Changes to my routine

Daily routines have a bigger impact on our symptoms than we realize, so changes are necessary! Patricia Stephen’s theory is based on correcting hormonal imbalances with a decreased level of stress and ridding the body of toxins.

Sleep – I made a commitment to sleeping 8-9 hrs a day, and minimize sleeping interruptions. I have always been a sleeper, and after the birth of my 2 kids I have been unable to get more than 6-7 hrs/sleep, with interruptions. Making this simple adjustment meant making a lot of changes, including where my kids sleep, putting my husband on night duty, and committing to practicing relaxation techniques if I did wake up in the middle of the night so I could get back to bed. It is not easy and I still haven’t mastered it, but have improved my sleep habits tremendously and the impact on my life has been very obvious and significant. The brain fog has dramatically improved, the headaches have disappeared, no more morning stiffness and just a general sense of well being.

Nutrition – I also looked into my eating habits and signed up to a diet (if you want to know the details, send me a comment with your email). By making conscious choices to improve not only the portions but also what I was eating, I started feeling more energetic, lost 20 lbs in 3 months, and reduced greatly my joint pain. I am not saying you should go on a diet. I am saying, that by substituting sweets, starches, and/or candy for things like fruit, sugar-free jellies, and natural fruit juices or frappes you can make big improvements in your well being. You can make a simple change like deciding the order in which to eat your food. For instance, if you have beef, pasta, and vegetables in your plate, eat the veggies first, the beef second, and the pasta last. It takes a while for your stomach to send the signal to your brain that it’s full, and by starting with the most nutritious items first you have less chance of eating the whole portion of pasta to feel satiated. You can also try reducing your portions, or eating whole wheat or grain pasta instead of regular pasta. It’s simply about making healthier choices.

Exercise – I committed to exercising 4 days/week, at the very least. I am not killing myself at the gym, or doing anything strenuous. I am simply running (see my post on How running changed my life) for 10-15 mins each day minimum and on the days I don’t run I try to walk 1-2 miles. This may seem like very little to you, but it was the most I could do while still feeling comfortable and not incurring in additional exercise or injury pain. It works too! A little every day adds up and does generate results in your body. Ten minutes exercising is better than nothing, and one mile/day = 7 miles per week! Your body starts getting used to the activity, creates more energy, and accelerates your metabolism. It’s a win/ win deal!

Reducing stress – This is easier said than done! I am certainly not an expert on reducing stress but have gotten better at managing stress. I practice yoga once or twice per week and use meditation techniques when I am feeling anxious, worried, or overwhelmed. The exercise also helps reduce the stress impact in your body. Something else I like to do is to get a massage, if possible, once a month. If you can afford more than that then you are well on your way! Massage therapy helps the body eliminate toxins that do not contribute to well being.

Water intake – How many times have we heard this one? Eight cups per day of fluids (not just water). The water intake really depends on a number of variables, including the weather and your gender. Women need approx. 91 ounces of water daily, while men need 125, according to www.livestrong.com. Water helps with joint lubrication, increases the metabolic rate leading to weight loss, it also assists with losing fat in the body. The benefits are endless! I don’t like to drink water, so I have found distilled water with a flavor that appeals to me and have also started flavoring my water with Splenda and a tea bag of my favorite decaffeinated tea. I prepare a 64 ounce bottle in the morning with plenty of ice to last me throughout the day and make it a point to drink while I’m at the office. Most days by 3pm I have finished the 64 ounces, so I take a regular 16 oz. water bottle and drink that before I have dinner. About.com has a water intake calculator you can use.

Yes, these are things we’ve all heard before. Like I said, it takes commitment on our part to make these adjustments, but it’s worth the try! When you see the results and start feeling better, making these changes will seem very natural to you. It only takes 21 days to form a new habit, so practice, practice, practice!  Don’t give up just because you couldn’t stick to your routine for a day or two (especially if you’re on vacation), but commit yourself to getting back on it as soon as you can! You’ll master the technique before you know it!

Stay tuned as I share in “My journey back to health….part 3”  how I am correcting my hormonal imbalances and have managed to live pain free for the past 3+ months.

Related articles:

http://www.mayoclinic.com/health/water/NU00283/NSECTIONGROUP=2

http://stress.about.com/od/meditation/ht/meditation.htm

Posted by: nashuafibrosupport | June 27, 2012

Flare-up free for 3 months…my journey back to health!

I am pleased to post today that I have not experienced any Fibromyalgia flare-ups for 3+ months now. By “Flare-ups” I mean waking up feeling stiff and achy, not being able to get out of bed, experiencing insomnia, restless legs or leg cramps, having flu-like symptoms and mood swings, and of course brain fog. Most importantly flare-ups, in my definition, mean experiencing one or more of the previous symptoms consecutively for more than 2-3 days. I still experience an occasional joint pain here and there, sometimes have trouble sleeping, but nothing compared to how I felt 4 months ago.

Before I share how I started my journey, allow me to clarify one key point: I am not a salesperson, am not affiliated or associated in any way with any of the products or people listed below. I will gain absolutely nothing if you choose to follow the same path I did, other than the satisfaction of knowing that what worked for me had a positive effect on you. I can’t stress enough the importance of consulting your doctor before changing anything in your current daily routine.  I am merely an individual sharing my experience, and what has been working for me. It is important for you, the reader, to understand that everyone reacts differently to different treatments, and results will vary.

 

How my journey started…

Towards the beginning of the year my husband and I decided to get ourselves smart phones and tablets, and get in sync with technology (I feel old just saying that). We have always been avid readers and enjoy topics such as nutrition, fitness, and health. As my husband taught me to navigate my way through blogs, podcasts, ebooks, and the likes, I started researching even more on Fibromyalgia. I stumbled upon a podcast that sparked my interest. It was an interview with Patricia Stephens, a known nutritionist and author of the book “Reversing Chronic Disease – A Journey Back to Health”. Her story is amazing and I will let you read it on her website, but in a nutshell, she was diagnosed with FMS when she turned 40 yrs. old, and had been through several surgeries to correct her symptoms, which did not yield results. She has researched the connection between FMS and ADHD that has enabled people to be treated more effectively. By replacing conventional Fibromyalgia medication with natural therapies she has been symptom free for many years.

Patricia Stephens’ theory is based on chronic disease as a result of nutritional deficiencies, hormonal imbalances, and brain chemical imbalances. Correcting this with a decreased level of stress and ridding the body of toxins provides great relief. This hormonal imbalance and brain chemical imbalances caught my attention, and I began researching more and more on the topic. As it turns out, there is a lot of information on the net about the impact of hormones on the nervous system that are related to FMS symptoms.

As cited in http://thedea.org/yourbrain.html:

There are four major modulatory networks in your brain: Serotonin, dopamine, norepinephrine, and acetylcholine. These are a group of nerves in the brain that control how the different parts of the brain work. Each one of these networks controls specific functions within the brain, and an imbalance would certainly affect the person’s well being.

1)      Serotonin is important for managing mood, appetite, sleep, and dreaming. If your serotonin levels become low, you may become irritable, anxious, depressed, and have trouble sleeping. Outside the brain, serotonin promotes the contraction of smooth muscle. Smooth muscle is the kind of muscle that lines our digestive tract and blood vessels.

2)      Dopamine is most famous for its stimulant and pleasurable effects, and appears to be important in learning. The popular drug Ritalin (prescribed for attention-deficit/hyperactivity disorder) works by elevating dopamine levels, making the user more focused and interested in what they are doing. Highly elevated dopamine levels are associated with some mental illnesses, such as schizophrenia. By the same token, very low dopamine levels also cause problems–the symptoms of Parkinson’s disease are caused by the loss of dopamine neurons.

3)      Norepinephrine is similar to dopamine in that it also produces alertness, focus and motivation.

4)      Acetylcholine – When acetylcholine levels rise, the brain generally becomes less active; nerves are less able to ‘fire’. This system becomes active during sleep, and may be responsible for disconnecting the brain from the body (so you don’t actually try to run when you dream that you’re running.) Outside the brain, acetylcholine has a critical role: It’s used by nerves to tell striated muscles to contract. Striated muscles are what people normally think of as muscles…your biceps, etc.

According to http://en.wikipedia.org/wiki/Fibromyalgia:

Dopamine dysfunction (hypodopaminergia)

The “dopamine hypothesis of fibromyalgia” proposes that the central abnormality responsible for symptoms associated with fibromyalgia is a disruption of normal dopamine-related neurotransmission.[43] There is also strong evidence for a role of dopamine in restless leg syndrome,[44] which is a condition found frequently in patients with fibromyalgia.[45] Some fibromyalgia patients responded in controlled trials to pramipexole, a dopamine agonist that selectively stimulates dopamine D2/D3 receptors and is used to treat both Parkinson’s disease and restless leg syndrome.[46]

Abnormal serotonin metabolism

In 1975, researchers hypothesized that serotonin, a neurotransmitter that regulates sleep patterns, mood, concentration and pain, could be involved in the pathophysiology of fibromyalgia-associated symptoms.[24] In 1992, decreased serotonin metabolites in patient blood samples[47] and cerebrospinal fluid were reported.[48] However, selective serotonin reuptake inhibitors (SSRIs) have met with limited success in alleviating the symptoms of the disorder, while drugs with activity as mixed serotonin-norepinephrine reuptake inhibitors (SNRIs) have been more successful.[49]

One of the most reproduced laboratory finding in patients with fibromyalgia is an elevation in cerebrospinal fluid levels of substance P, a putative nociceptive neurotransmitter.[87][88][89] Metabolites for the monoamine neurotransmitters serotonin, norepinephrine, and dopamine—all of which play a role in natural analgesia—have been shown to be lower.

What does this all mean?

Going back to Patricia Stephen’s theory: she discussed how FMS patients are frequently prescribed with medication that brings balance to norepinephrine and sometimes serotonin, with minimum impact to dopamine levels. She proposes balancing this with stimulants used to treat ADHD, when both conditions coexist. This would correct the balance of dopamine and serotonin, as well as balancing other hormones such as cortisol, that could lead to a person free of Fibromyalgia symptoms, such as herself, for many years.  She emphasizes on taking the right dose at the right time for maximum relief.

The first step is to talk to your doctor and order a completed blood work-up, including ADHD testing and hormonal work-up. Check for things like cortisol, adrenaline, thyroid levels, etc. Explain to your doctor what you are trying to understand and get his/her perspective on the topic. Get to the lab and get your tests done, preferably fasting for more accurate results. In terms of ADD testing, you might be referred to a neurologist. If you find out that you have FMS and ADD or ADHD, the stimulant treatment might work for you. If you do not have ADD or ADHD, the next level is to try and figure out which hormones are not balanced and work your way from there.  Read my post on migraines in patients with FMS, some of the cures suggested for migraines can also help alleviate other FMS symptoms.

As the title of this post reads, getting back your health is a journey, there’s no quick remedy. It is important to take the time and work with your doctor to figure out what is out of balance in your body, and what is the best combination of medications to correct it, and get you back to being 100%.

This post is getting a bit lengthy….stay tuned as I share in “My journey back to health….part 2” how I personally have been pain free (on natural medicine) for 3+ months.

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http://www.danijohnson.com/go/75218275p59
Posted by: nashuafibrosupport | May 29, 2012

Prior onset of FMS symptoms

Have you ever been labeled a hypochondriac? I know I have, multiple times!  Surely you have read about people experiencing FMS symptoms up to a year prior to onset or diagnosis, but how far back does it go?

I had a very healthy childhood. As I went through puberty I started experiencing unusual symptoms. “Growing pains” my doctor called it. Occasionally a joint would hurt here and there, my ankles would swell and sprain often. I started fainting, which was diagnosed and treated as low/high blood sugar level. I remember having palpitations every day, more than once a day. I was unable to practice sports or anything requiring too much physical activity due to my heart condition, which was diagnosed and treated as arrhythmia (I forget which type).  All this was happening around the time I reached 15 yrs old. I developed also a severe case of gastritis, and had to live on a strict diet for a few years. I couldn’t tolerate high temperatures and had to live on a very steady routine to avoid triggering symptoms. I was diagnosed some time later with polycystic ovarian syndrome. Monthly migraines started around 18 yrs old. Can you imagine?  I felt like a mess, and I was only a teenager.  

By the time I reached 19-20 yrs. old every one of these symptoms magically disappeared, except the migraines, which have decided to keep me company all this time. Not all my symptoms disappeared at once. I just gradually started feeling better and happier, until I eventually forgot that I had felt that sick. A decade later began my journey into the world of Fibromyalgia. As I started learning more and more about this disorder I realized that, those symptoms that were so easily dismissed by some doctors, friends, and even family were real. I am not a hypochondriac! Here’s a list of other symptoms I have experienced:

-          Tension headaches

-          Irritable bowel syndrome

-          Lightheadedness when standing up

-          Teeth grinding while sleeping

-          Sleep apnea

-          Exercise intolerance

-          Blood vessel spasms

-          Eczema

-          Yeast infections

-          Attention deficit

-          Fibro fog

-          Generalized weakness

-          Fatigue

-          anemia

Fibromyalgia patients experience a heightened sensitivity to pain. My rheumatologist described it this way “it’s as if someone turned up the radio really loud, you experience a higher level of pain than most folks”. I believe that this heightened sensitivity to pain has been there my entire life. It’s the only way I can explain why every single headache felt so intense, why a baby crying stressed me out, why when I stubbed a toe I felt like someone hit my foot with a baseball bat. I distinctly remember visiting my OB/GYN’s office because my ovary pain was “killing” me and when she performed the ultrasound, she found a cyst so minuscule she stated that I shouldn’t have been in any pain whatsoever. My heart arrhythmia came back as an adult; I had stress-tests performed several times, all which came back normal. Yet I still couldn’t exercise. I noticed that on the treadmill, when other people were running same distance, same pace, their heart rate was normal, mine was in the cardio burning zone within the first minute or so. As I started running I could hit the 174-180 heart rate without much effort. My blood tests were also always normal, except for some very minor iron deficiency now and then.

Some days I am amazed that I was able to go through two pregnancies and deliveries (one via c-section). I am also extremely sensitive to narcotics, so when I have surgery, I can’t take strong pain medication. I also went through surgery to extract a bone spur that was believed to be causing my migraines. When the doctor removed the splints one week later I cried from the pain, and she asked me why I was crying. She could not believe that it was so painful. I have plenty of stories of people being skeptical about my pain level.

I wonder…how many of you have experienced a similar situation? Was I destined to have FMS and it was just waiting for the trigger to start manifesting itself? Can one be born with this? Could heightened sensitivity be treated as an indicator in kids of FMS development?

Fibromyalgia, in one way or another, has enabled me to be more in tune with my body and understand a lot more about myself. Now I don’t have to beat myself up for not feeling able to do something. If something hurts, I have learned to identify when it’s heightened pain or real pain. It has allowed me to get to know my body and its limitations, but also understand what I am capable of doing when I set my mind to it. It has taught me not to compare my life or situation with anyone else’s, and to rely on others when I need help (something not easy for me to do). I am not thankful for having this disorder, but am very thankful for what it has taught me, and for giving me the strength to reach out to others, like you!

Did you experience similar symptoms as you were growing up? Do you recall having FMS symptoms far before the onset?  Please share your story. The more we learn the better we can support each other.

Posted by: nashuafibrosupport | May 24, 2012

To tell or no to tell? That is the question!

When I was first diagnosed with Fibromyalgia (read  my story here) many questions popped into my head. One of the most important issues I face is whether to disclose the information to friends, family, workplace, etc.  What are the implications of revealing my disorder to others? How will they treat me from now on?  Will the friendship change? Will my family be empathic or pity me? Will this limit my career choices and advancement?

Should I tell my family and friends?

The answer is: absolutely! The real question is: how do you define family? In other words, which family members should you tell? The people closest to you should know, and by that I mean those who actually share your household. This disorder affects us from day to day, and because it varies, some days we can perform certain tasks that other days seem excruciating. Some days I get out of bed very energetic, do the laundry, and lay out the kids’ clothes, get them brushed and dressed, and clean half the house before having breakfast! Other days I can barely get out of bed.  It is very important for those closest to us to understand that we might have certain limitations and that plans might not always come to fruition. Being flexible is important to someone with FMS.  My family has been extremely supportive, my husband helps out in any way he can. I will admit, they still won’t know exactly what you’re going through, but they can help out.

Other family members, such as siblings, cousins, parents (if they don’t live with you) and friends, may not need to know. My guideline is the following: if I might need their help or support and I trust them, I tell them. If I believe it’ll do more harm than good, I don’t. For instance, I have some family members that tend to exaggerate things. They might jump to the conclusion that I am dying, so I have decided not to tell those people. This is why my blog is Anonymous.  What about the kids?  My kids are little, my older one is just turning 5, even though she might start to understand, I choose not to fully disclose the situation yet. When I am going through a flare, I just tell her that “mommy” doesn’t feel well right now and can’t play, but would gladly play with you as soon as I’m up for it. A 5 yr old can understand that. I do not want her to be concerned or alarmed by my condition yet. My 2 yr old does not have a clue, so I don’t give her any information. This is when I rely on my husband. If she needs something, he takes care of her until I can. I will eventually tell them when they’re old enough to understand and help out.

Word of caution: telling some and not telling others is a situation that requires a lot of care. People usually talk and someone you didn’t want to know could find out about your disorder from someone else you did share it with. In that case, they will be hurt that you did not confide in them. My advice to you is be very careful, you can tell no one or everyone, but if you decide to go 50/50 and are concerned about others finding out, make sure you really trust who you tell. Even when you specifically ask them not to share your story, they might blurt it out accidentally.

What about the boss?

This one’s more complicated. There are many consequences that could result from telling your boss. While it is very well understood that employers can’t discriminate against employees based on race, religion, sex, ethnicity, disability, etc., a lot is to be said about discriminating against someone with a disorder.  Bosses are human, just like you, and make mistakes. The law does protect people like us, but only if we can actually prove discrimination. Your boss could decide that your performance is suffering and that you are no longer fit to do your job. His only obligation is to not fire you, he could still move you from location, change your responsibilities and role, and “offer” other less appealing choices. You need to be clear on which trade-offs you’re willing to accept.

On a positive note, if you have a good relationship with your manager and trust them, letting them know that you have Fibromyalgia and certain limitations might be of great benefit to you. You might be able to work out a flexible schedule, accommodations, or even arrange to work from home when you are going through a flare up. If you are a good, faithful employee, chances are your boss will offer these choices. Staying productive is important. You might want to balance the quality of the work you do on the days you feel better with that of the days you don’t. On days when I feel energetic I arrive at work earlier, leave later, make up for time lost. I work extra hard and am extremely productive, to compensate for those days when I’m feeling in pain or when Fibro fog  hits me (read about Fribro fog here). There is a fine line between balancing your productivity and over-working yourself. Make sure you listen to your body. Doing too much could lead to a flare up.

The following articles provides some ideas worth discussing, should you choose to disclose:

http://www.fibromyalgia-associationuk.org/useful-information/553-coping-with-the-symptoms-of-fibromyalgia-whilst-working?showall=1

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-work-and-disability

I have not had the talk with my manager yet. I put a lot of emphasis on my career and worked very hard to get where I am, and do have a fear of getting passed on for promotions, or having limited career choices. I can still manage to work most days full time. I keep myself active (read how here) in order to keep my energy level up. I am clear on the fact that if I do get to the point where I need special allowances, I will discuss with my boss. I already have a plan and have investigated which types of jobs I could do if he were to change my responsibilities.  I am in control of my future!

 

 

 

 

Bottom Line

Telling others about your condition is most definitely a personal choice. Something you should think about is gains vs losses. Are you asking for special privileges and if you get them, will that help? If there are consequences, like losing your position, would you really care? Would doing something else make you happy?  What trade-offs are you willing to make?

If you do decide to tell you might want to educate your boss, but keep it simple. It is best not to provide too much detail. All they need to know is that you might not feel 100% all the time and might need special circumstances or accommodations on certain days.

Be confident in your decision and move forward. Remember, FMS does not define who you are. You are not looking for pity, you are looking for support and assistance!

Have you told your family yet?  How about your boss?  Have you experienced positive or negative consequences? Please share! 

Posted by: nashuafibrosupport | May 12, 2012

Are you genetically predisposed?

Have you ever wondered how and where you got Fibromyalgia?  Why do you have it? How did you get it? Did you inherit this disorder from your parents? Have you always had it and not known?

I did. I still do. As I learned more and more about my disorder I started noticing a unique resemblance to my father’s condition. For as long as I can remember he has complained of back pain, hip pain, joint pain overall. He’s always had trouble sleeping, feels exhausted most days, and had started to get angry about being sick all the time. This has been going on for the past 20 years. It got to the point where, when he complained about a new pain, we would just think “it’s another one of dad’s ailments”. After I was diagnosed and understood better what FMS is and entails, I decided to ask him. I asked about his symptoms and explained Fibromyalgia, which he’d never heard of. I explained how I felt and, the more we compared notes, the more similar our symptoms were. To my surprise, when I asked about his diagnosis, he mentioned “Diabetic neuropathic pain” (DNP).  If you look it up, it is another collection of symptoms that could easily overlap with FMS. When I asked about his treatment, it turned out he was prescribed the exact same medication that I had been prescribed with for FMS, in a stronger dose. I have since done extensive research on DNP and FMS, and am 90% confident he has FMS. His diabetes started only 5 yrs ago; the fact that he was experiencing the remaining symptoms so many years prior was still unexplained. Perhaps he has both and the doctor’s have not figured it out.

This led me on the path of investigating genetic predisposition and the applicability to Fibromyalgia.

Genetic predisposition

Many experts believe that genetic causes of fibromyalgia (FMS) are possible, but what does “genetic predisposition” mean, exactly?

If you’re genetically predisposed to a disease or condition, it means that your risk of contracting it is higher simply because of your genetic makeup. It does not, however, mean that you will definitely come down with the illness. Typically, something else would have to come into play. For instance, someone with a genetic predisposition to fibromyalgia may not develop it until she is exposed to long-term stress then suffers physical or emotional trauma.

Genes appear to play an important role in fibromyalgia, so you could be genetically predisposed to the disorder. Researchers have found that some people with fibromyalgia have genes that affect the way the body transmits pain signals. These genes affect brain chemicals such as serotonin, dopamine and catecholamines that control the experience of pain. But while you can always blame mom for giving you that weird hairdo when you were eight, don’t blame her for giving you FMS. Just having a genetic predisposition doesn’t mean you’ll get fibromyalgia.

From the ProHealth website:

New research using twins may point to a genetic predisposition to FMS. Both identical and fraternal female twins were examined at the University of Washington. In Phase One of a two-phase study, several interesting results were found. Out of 74 sets of female identical twins, 34% of both twins had FM. In 23 sets of fraternal twins, only 4% of both had FM.

Doctors can perform genetic tests to reveal predispositions to certain diseases, but because the possible genetic components of fibromyalgia remain a mystery, they can’t test you for them. If you have close family members with one of the conditions, though, you’re considered at risk for developing it yourself and may want to identify your risk factors and work to mitigate them.

Trigger(s) / Stressor(s)

Are you able to pinpoint the moment FMS started? I believe mine started during my second pregnancy. I had a difficult pregnancy and an extremely hard and long delivery with my first born, and felt somewhat apprehensive about being pregnant and delivering again. I had asked my doctor to guarantee that we would do a C-section, I thought I wouldn’t suffer and the baby would be born healthy. I had just found out I was pregnant when we decided we needed a bigger place. As we went through the very stressful process of trying to sell a condo in this economy and buying a house, I started feeling exhausted, overwhelmed. At 6 mos. pregnancy and about 25 more lbs., I was working full time, taking care of my 2 yr old, packing boxes, painting, moving, etc. Half our things hadn’t been unpacked when the baby was born. The baby was born with gastric reflux, which led to many sleepless nights, screams, and a whole lot of stress. I distinctly remember feeling numb, achy, flu-like ALL the time. I was emotionally happy yet my body was reflecting a totally different story. I was then diagnosed with post-partum depression, which I was sure I didn’t have. It wasn’t until years later that I received a formal FMS diagnosis (see my story here).

From what I’ve read Fibromyalgia could also be caused by a trigger. Current research indicates that people are not born with Fibromyalgia, but a trigger or stressor “turns on” the disorder. The most common triggers are high levels of stress, surgery, labor, car crash, fall, any major physical or emotional impact on the body. There are also general triggers which cost FMS flares. Some people relate their flares to food, others to physical activity and stress.

The impact of stress on people with Fibromyalgia is huge! Stress can make your symptoms worse and even generate specific physical symptoms. Stress management techniques such as exercise, meditation, warm bath, good night’s sleep, and knowing your limitations can have significant impact on your well being. I use running and yoga as my favorite exercises, but the most recommended exercises are low impact such as walking, elliptical, cycling, and swimming.  (Read about how running changed my life here).

Lessons learned

When you visit any doctor’s office they typically ask you about your family medical history. If you’re anything like me you probably think “geez, what are the illnesses in my family?” We are not always aware of the details of illnesses on close family members. What I’ve learned is, not only should we know their history, but we should also pay close attention to their symptoms, as there is always the possibility of a misdiagnosis. You should also know that the children of Fibromyalgia patients have twice the risk of contracting the disease. Don’t let this alarm you though; this risk is still low enough that it is highly unlikely that they will develop the disorder.

Identifying your original trigger is important in order to enable you to reduce future impact. For instance, if your trigger was surgery, labor/delivery, or similar controllable situations, you might be able to decrease the probability that these things will happen to you again, eliminating further pain and/or managing stress appropriately. Knowing your day to day triggers will help you avoid recurring flares and additional stress as a consequence of the pain.

Lastly, finding ways to manage your stress will prove to significantly reduce the amount of pain and physical symptoms experienced. Massage therapy, acupuncture, and meditation techniques might help accomplish this.

Are you genetically predisposed? Have you identified your triggers? How many are there?  Share your story here…

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Posted by: nashuafibrosupport | May 5, 2012

Why Fibromyalgia could be misdiagnosed…

If you’re reading this post, chances are you haven’t felt well in a while. How tired are you? Do you have just fatigue or chronic fatigue? Are you able to get out of bed in the morning? Do you have flu like symptoms? Do you have joint pain that appears one moment, and disappears the next? Does your pain travel through your body (mostly through your spine)? Do you find that when you stub a toe, it hurts 10 times more than it did before? If you said yes to all these questions, there’s a good chance you might have FMS. Now here’s the trick, if you said yes to only a few of these questions, you could still be experiencing Fibromyalgia.

Are you aware that in the USA approximately 2-4% of the population has Fibromyalgia? How do you know whether your current diagnosis is right or not?

I will let you refer to other websites to seek out what are the main characteristics of Fibromyalgia and suggested treatments. I will however, discuss here why FMS is so frequently misdiagnosed and how to best assess your condition.

It’s only now that understanding and awareness on FMS is growing. For nearly two decades, patients dealt not only with their often mysterious symptoms but also a baffled public and medical community. Patients often endure a string of misdiagnoses before they finally find a name for what they are going through.

Diagnosing Fibromyalgia is very difficult. Throughout the years this disorder was diagnosed by exclusion, meaning that every other potential disease needed to be discarded before you could be diagnosed. Nowadays, the following criterion is used:FMS tender points

  • A history of widespread pain with no evident cause that lasts three months or more
  • Identification of at least 11 out of 18 tender points on the patient’s body

Tender points are locations on the body that may be unusually sensitive to light pressure. To identify tender points, the doctor applies pressure to the spot to gauge the patient’s reaction.

The concern with this approach is: what happens if a person has 10 tender points? Or better yet, tender points could diminish with treatment, so if a person who has been diagnosed with Fibromyalgia has less than 11 tender points, do they no longer have the disorder? The medical community does not currently have straight forward answers to these questions.

Commonality of Symptoms

The main symptom of fibromyalgia is widespread pain and chronic fatigue. A diagnosis of fibromyalgia can be tricky because fibromyalgia isn’t the only condition with widespread pain or chronic fatigue.

There are other symptoms that may occur in fibromyalgia. But just like pain and fatigue, the symptoms are experienced by patients with other conditions. These symptoms include:

  • Thinking and memory problems (fibro fog)
  • Headaches, both tension and migraine
  • Sensitivity to temperature, light, and noise
  • Irritable bowel syndrome
  • TMJ syndrome
  • Morning stiffness
  • Numbing or tingling of the extremities
  • Sleep disturbances
  • Urinary problems

Any combination of these symptoms can also suggest the presence of other serious illnesses, such as:

These symptoms and their combination can signal many diseases. It is important to note that everyone experiences FMS differently, and the symptoms vary greatly from person to person. Another factor to consider is that a person could be experiencing a disease and also have Fibromyalgia. Some diseases mimic FMS so much that it is quite difficult to detect both.

My Diagnosis

My diagnosis was not quick or simple. It took many iterations and visits to my PCP and OB/GYN. I was diagnosed with post-partum depression at one point. I knew I was not depressed and my persistency led to a formal diagnosis two years later. Read more about my story here.

Assessing your symptoms

Symptom inventory exercise

It is important to take inventory of your symptoms. Consider closing your eyes, breathing deeply in and out, and achieving a relaxed state (concentrate on your breath).  Once there, bring your awareness to your toes, and give your mind a chance to experience all the sensations in your toes. Take mental note of every sensation: tingling, pain, tickles, blood flow, or just nothing. Work your way up from your toes, to your heels, ankles, knees, thighs, hips, abs, chest, arms, shoulders, back, neck, head and finally scalp. When you finish give yourself a mental hug, take 3 more deep breaths, and notice if any symptoms have changed. As you open your eyes, jot down any sensations worth noting in your journal.

Keeping a Journal

Keeping a diary of your symptoms is very important. Your doctor will think of you as “more prepared” and this will provide accurate data and extremely valuable insight to them. He or she may notice patterns, and maybe even triggers. These patterns might be more obvious to your doctor than to you for two reasons:

  • They interact with other FMS patients very frequently
  • They’re a different set of eyes with a lot more background information

The journal can be as simple or complex as you like, but it should at least contain symptom, intensity of pain, and date. I have included an example from a fellow blogger here.

Talking to your doctor

When talking to your doctor, don’t be afraid to ask for time and attention. You do not want to be rushed out of the doctor’s office. You need them to listen carefully. It is best if you provide details, the more the better. If you have your journal, bring it with you. The journal will do the talking!

 If you are visiting a PCP or OB/GYN don’t be afraid to ask for a referral to a Rheumatologist. They are the most adequately trained professionals in Fibromyalgia and making a proper diagnosis / test. Your PCP might want to order some blood work, let them! Remember, they need to eliminate the potential of many other diseases before they can even think about FMS. Bring the lab results with you to the Rheumatologist.

My best suggestion is to be persistent! If you are not happy with your diagnosis, don’t be afraid to ask what criteria the doctor is using to assess your condition. You might want to consult a second or third doctor as well. Don’t give up and keep seeking a diagnosis, the earlier you get diagnosed the sooner you can gain back control of your life!

Posted by: nashuafibrosupport | May 1, 2012

How running changed my life

If you’re thinking…”how can I possibly run with a Fibromyalgia diagnosis? I can barely get out of bed!” I will tell you…it is very possible, and even enjoyable! Since I was diagnosed I have managed to run four 5K races and continue to register for more when I have the time. I will not sit here and write about how easy this was because, as you know, nothing comes easy to people with FMS. What I will tell you is that running changed my life, significantly for the better, here’s how I did it.

My background

First of all, a bit of my background. I lived with my mother and my brother until College. My mom worked long hours during the week to be able to support us, and when night came she was too exhausted to even think about anything but food and bed. My dad’s idea of keeping the kids busy was to take us to some playground, park, skating, bicycling, basketball, baseball, etc.  My hobbies were to write songs or  listen to music, exercising was never in my plans.  I do believe both my parents understood the value of exercising and even practiced it at some point, but we never experienced consistency, never joined a gym, just never really grew up with that mindset. It wasn’t until later in life that I learned from other friends about going to a gym. As the years passed I made several attempts to exercise and would last a few months, perhaps even up to a year, before giving up again because I had more important things to do.

How I came to running

I am a goal driven person. At work and home, I am known as a go-getter. My main issue when it comes to exercising is finding the motivation. When I was diagnosed with FMS it became my wake-up call. As soon as I walked out of that rheumatologist office I knew that I did not want to be on a prescription pill for the rest of my life, and would do whatever it took to get better. Furthermore, my husband has been exercising for years and managed to lose 30 lbs and fully re-sculpt his body within 1-2 years, and seeing the results on him was definitely a motivator. One day he decided to start running and for some reason, I followed (figuratively speaking). I signed up to my nearest gym and started walking on the treadmill, and continued to push myself. I eventually began running. Even though we had our own treadmill at home, I found it extremely boring. Using the treadmill in the gym worked for me because I  get easily distracted,  at the gym I can focus on what other people are doing instead of myself. They also have huge screens TVs and music. Yet I always still looked at the people running beside me and wondered how they could run form 30 minutes at a time.  

When spring started I decided to try running around my neighborhood. WOW! How different. It was wonderful. It was a beautiful, sunny day and my goal was to get from my house to the traffic light and back, which is one exact mile. I started running at a slow pace, and had fun on my way to the traffic light. Before I realized it I was 200 meters from getting home! I had spent the entire run just admiring the houses, the road, the traffic, animals, you name it! I ran the mile in 11:23 minutes, and loved it! At that point I decided to sign up for a 5K. Yes, I know it sounds crazy, but remember when I said I was goal driven? I knew that if I didn’t have a reason to push myself, I probably wouldn’t. So I then proceeded to create myself a plan to increase that 1 mile run to a 3 mile run.

Related Injury

Did I mention that I am a go-getter? So there’s a downside to that. In running, you NEED TO PLAN! My original plan, which I thought was great, was to run 1 mile, every other day, for one week. The next week run 1.5 miles, week after 2 miles, and ramp up to a total of 3.1. I only had 7 weeks for the 5k and I had timed it perfectly, or so I thought. The problem with my plan was that I did no research! I was so happy about being able to run that I did not investigate. Then, came the injuries!  I started feeling a lot of pain in my shin bones, on both legs. I kept running until it got to the point where I couldn’t anymore. You see, now that I have Fibromyalgia I seem to relate all pain to it. Every time something hurts, I just think it’s part of the whole gamma of pains that come with this disorder. In this case I thought I was just sore and the FMS just made me feel worse. My husband warned me about injury so I decided to go to my PCP. Indeed, I had injured myself into shin splints, as a result of overworking my legs. This is very common, but could lead to stress fractures if you don’t rest. Needless to say, this put a hole in my plan.  

Once again, I decided not to give up. I would rest for a couple weeks and continue running, maybe spacing out my runs further. Instead of running 2.5 miles every other day, I would run 2.5 miles every third day and so on. Nothing was stopping me from running that 5k! My husband decided to take me to an actual “running” store to shop for the proper shoes. They did a full assessment and recommended the best options for me, as a beginner. I ended up purchasing 2 pairs of sneakers, different brands for a different feel. I would wear them depending on what I wanted to accomplish during my run. I found more motivation in purchasing myself a running outfit. Yes I admit, I was running in cotton “sweat” pants and a shirt. You know how they say “dress for the occasion”? The same is true for exercising. Finding the right running clothes had influence on how comfortable I was during the run, especially with the weather changes. I had fun color coordinating and just doing something for myself, which as a mom, I rarely do.

I won’t say that I did not experience body pain after my runs, especially after the first time of pushing myself to a longer run. Two Ibuprofen usually worked. After the 2.5 miles, I found that if I took the ibuprofen right before starting, I would have enough time to kick in right before the pain did, and was able to run pain-free. Don’t get me wrong, I am not saying I took ibuprofen every time I ran. I only took it when the runs were on the longer end and it was my first time running the longer distance. I did not want to create and Ibuprofen habit, but wanted to give my body some time to adjust. Currently I don’t have to take any to get through a race pain-free.

My very first 5k

Then the week of the 5k started. The race was scheduled for a Thursday night, so I decided that my last prep run would be the Sunday prior, to allow my legs some time to recover. Thursday came, and my hubby made sure I ate complex carbs and hydrated myself before taking off. I had asked him to run it with me, for support. I was excited, but very scared. Questions kept popping up in my mind. Will I be able to complete the race? Am I going to be the last person? Will I be able to keep up with my hubby? Am I crazy for doing this? We arrived at the registration desk and I was more excited. There were plenty of people, and there were Thunderstorms that day, which happened to subside about an hour earlier, so the weather was perfect, nice and misty, around 72 degrees or so. I breathe through the mouth significantly when I run, as do most runners, so the moist air helps making me feel hydrated. I had purchased myself an ipod nano, loaded it up with the Nike plus app and my favorite 5k playlist, and was ready to go.  Then they lined us up and I felt anxious. “Oh no” I thought, “here we go”. The musket sounded and off we went.

My husband started me on a slow pace, and I found myself going too slow. I increased the pace on him and he was pleasantly surprised. I was able to maintain that pace, having him by my side, grabbed a cup at the water station in the 2.5k mark and thought to myself “half more to go!”. I was happy and feeling very well. By the time we reached the 4K mark I was getting tired. My brain started playing all kinds of tricks on me, telling me to give up, this was just too long. I kept fighting it. At that point I decided to tell my husband how I was feeling so he would motivate me. He did. He started cheering me on, letting me know how to optimize the pace at that point, and allowing me to hold on to his arm to relieve some of the weight on my body. The last 200 meters seemed to last forever! I was trying very hard to see the finish line and couldn’t. I got more and more desperate and he kept me calm. He told me the story about how I came through in my first daughter’s labor, which was a 46 hr labor, and how much he admired me for doing that. He said “if you went through that you can get through this”. That got me to the finish line. I arrived and felt a sense of hope, joy, freedom, and excitement all at the same time. It really was like giving birth, I had gone through the pain, now all I felt was happiness. I didn’t even look at my score or the clock when I arrived. My joy came solely from the fact that I, having been diagnosed with Fibromyalgia just 2 months earlier, had just trained myself and completed a 5k, without ever stopping or walking! It was a great experience, I remember it like it was yesterday.

After the 5k I rested for a full 2 weeks, and started training again.  I have now run a total of four formal 5K races and run an average of 8-10 miles per week. Every time I do it I feel like I’ve completed a milestone. I sign up for the races because this motivates me to continue, if you can motivate yourself there’s really no need to run a race.

The influence on my friends

I started posting my runs on Facebook and as a side effect, lost a lot of weight, which my friends started noticing. Eventually people were coming to me asking me for running advice. They wanted me to train them, or give them a running plan, or be their running mate. My kids see me running outside or on the treadmill and they want to run too. What an honor! Me? Really? A running coach? I am thrilled. There’s no stopping me now!

A new me

Running increased my sense of well being. Running outdoors gets me out of sadness and anger; while I run my mind is clear. I’ve noticed tremendous improvement. When I am training I very rarely experience full flares, I sleep more soundly, even my brain fog gets a lot better. I feel more focused, more energized. It has become very addictive. Every time I see a sunny day I want to get out there and run, or when it’s drizzling ( I love the feeling of light rain on me, it cools me off when I’m running), or just whenever. Running has become something standard in my daily routine, not a hassle, but something I enjoy doing. Even if I can only get out for 1 mile, that usually means around 10 minutes or so of peaceful time, with just me. It is a  time when no one is disturbing me and my mind is focused on whatever I want it to. I am now motivatedto eat healthier, and can very proudly say, that I can run with my kids! The most depressing  fact of FMS to me, as a mom, was that I was barely able to keep up with my kids. Now I go with them to the playground, gymnastics, karate, etc. My 4 yr old. daughter just ran her very first race yesterday and did a wonderful job!

 Recommendations and links to get started

There are two major types of runners: trail and road. You should evaluate the pros and cons of each and decide what works for you. I am sure running doesn’t work the same for everyone and depends greatly on your level of pain. I know I had questioned my ability to run before even trying it. Being strong willed and deciding that you will make up “no excuses” definitely helps. I am human, and still make up excuses some days, but I do manage to exercise at least 3 times a week. If I am going through a flare, I go walking instead. It is important to remember that running is a high impact exercise, and if you have knee or joint problems you should be extremely careful. Running ineffectively can lead to many injuries, I recommend doing research and consulting your doctor before starting.

There are many programs to start running, I have included my favorite links below. There are several “from couch potato to running a 5k” plans as well, just make sure you allow yourself enough time to train effectively. You don’t need to run a race to become an active runner. You can run at a slower pace, and vary your pace by day if you need to. Some days I run one mile in 9 mins, other days I complete it in 11 mins. I have found that even if I’m exhausted, just getting out there helps. The first minute might be hard, but after I get my pace I feel better.

Most towns have a running team and offer free running sessionas as well. If you’re interested in starting, search your town website for support. 

Running changed my life, and it can change yours too!

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Posted by: nashuafibrosupport | April 19, 2012

Did my head just explode?

Have you ever experienced a migraine? If you find that you are suffering from headaches or migraines with your fibromyalgia, you are not alone.

 Last night I had a migraine, a terrible one. The aura started around 9pm, and I pretended that ignoring it and going to sleep would get rid of it. That was a big mistake! The pain woke me up at 1:45am. I took my migraine prescription  medication immediately knowing that the pain would only get worse. It did. About 45 minutes later I had an ice pack on my head, was eating a snack because I was nauseous and did not want to vomit. My husband tried to help by massaging my head (so nice of him!) and acupressure on my hand, which of course didn’t work. The pain got stronger and stronger, on the left side, traveling from front to back. At what point I thought my head would explode, my left ear, and eye were both bothering me. I couldn’t lay down because it only made the pain worse, so I stayed sitting with my eyes close, hoping the medicine would kick in and the pain would go away. About 25 mins later I was finally able to lay down, in child’s pose, and managed to somehow fall asleep. I woke up at 6am and the pain had finally left me. Now I was experiencing the wonderful side effects of my prescription medication: dizziness, drowsiness, tightening of the throat and chest, and inability to focus. Sounds great huh?

I have been experiencing migraines since I was 18 yrs old. They have varied in pain level, length, and side effects. Originally they seemed to be tied to my monthly cycle and estrogen levels. Then they changed to be triggered by hunger, then lack of sleep. Now stress and FMS flares seem to trigger them.

Headaches and Fibromyalgia

Not surprisingly, there seems to be a substantial correlation between migraines and Fibromyalgia. According to http://www.fibromyalgia.com:  After studying 89 fibromyalgia patients, a well-known neurologist diagnosed 84 people suffering from migraine headaches and 5 from tension type headaches (TTH). He then published the statement in 1995, that “fibromyalgia sufferers are headache sufferers.” Unbeknownst to him, he actually diagnosed the two most common headaches to be found in FMS – migraines and tension-type headaches. A 2005 study suggests that up to 53% – 82% of FMS patients report some type of headache pain. In another epidemiologic study a group of rheumatologists found recurrent headaches in 76% of 100 FMS patients being treated at a university pain clinic with 63% suffering from migraine. Of these patients, 80% of patients rated the impact of their headache as severe. In this study, on average, headaches developed approximately seven years prior to FMS symptoms. The onset of headache symptoms prior to FMS had been noted in a previous study where 45% of FMS patients were found to have migraine headaches. This is interesting to me, considering my headaches started many years ago. I will discuss more on “Prior onset of other FMS symptoms” in a separate post.

If you suffer from migraines, you know they are no joke as they can make your life miserable for several days. About 30 million people in the US suffer from migraines, women about 3 times more frequently than men. Migraine headaches may occur after visual disturbances such as blurriness, stars, sensations of tunnel vision, or eye pain. This is termed a migraine with aura; there is both migraine with aura and migraine without aura. Anywhere from a few minutes to up to a day, but usually about 15 minutes after the visual disturbances, migraine sufferers will develop a pounding, pulsating, or pounding pain that is almost always worse on one side of the head and usually behind the eye or in the back of the head. It may start out as a dull pain and then increase over minutes or hours and can last over a day. As if this isn’t bad enough, there is usually nausea and vomiting, tingling sensations, extreme sensitivity to light and sounds, chills, and extreme fatigue that accompany the headache. Tension headaches usually feel like someone has tightened a belt around your neck or head. People will try to move their neck and shoulders as only certain positions provide some type of relief. Unlike a migraine headache, the pain is usually not throbbing but is more like a dull, continuous ache. A common source of tension headaches is myofascial trigger points. Read more here.

Causes of Headaches in Fibromyalgia

Headaches are an extremely common symptom of fibromyalgia. In fact, more than 50% of people with fibromyalgia suffer from constant headaches or migraines. There are a number of interesting theories as to why people with fibromyalgia suffer from so many headaches. Many of these theories rest on the idea that the same dysfunction that causes fibromyalgia also causes migraine headaches.

Sleep Disorders: Migraine and tension headaches may affect people with fibromyalgia because of the disordered sleep that fibromyalgia often causes. Numerous studies conducted on migraine sufferers found that their sleep patterns were significantly disturbed, particularly by sleep apnea. Many people with fibromyalgia also suffer from sleep apnea and other sleep-related disorders. This may be the reason why so many people with the syndrome suffer from morning headaches. Sleep disorders also tend to make the severity and frequency of headaches worse.

Temporomandibular Joint Disorder (TMJD): A large percentage of people with fibromyalgia also suffer from another disorder referred to as TMJD. This disorder causes muscle and joint pain in the face, jaw, and neck, and often causes severe migraine headaches. This disorder may account for the large number of headache sufferers among fibromyalgia sufferers. TMJD also causes bruxism (grinding of the teeth) in many fibromyalgia sufferers, which can also contribute to headaches.

Low Levels of Serotonin: One of the most widely held theories posits that migraine headaches are actually caused by the same factors that cause fibromyalgia. This would mean that the migraine headaches aren’t actually a symptom of fibromyalgia, but are actually a concurrent illness. Recent studies performed on people with migraine headaches show low-levels of serotonin in their brains. Serotonin is a neurotransmitter that helps to communicate pain signals to different parts of the brain. People who don’t have enough serotonin don’t seem to be able to communicate pain signals effectively, resulting in increased, and even severe, pain. Fibromyalgia has also been linked to low levels of serotonin in the brain.

Low Levels of Magnesium: The mineral magnesium is also found in low levels in both migraine sufferers and people with fibromyalgia. Studies support that these low magnesium levels may actually be a cause for migraine headaches and fibromyalgia. Read more here.

Potential natural remedies

I have yet to find a natural remedy that will consistently get rid of my migraines once they’ve begun. Prescription medication does wonders for me. It is not simple though, as I have tried a decent amount of prescriptions to find what works for my migraines and I dislike the side effects of most of them. If you’re interested in which prescriptions have worked for me send me a comment with your email and I will send you a private note. I currently do not endorse prescription medication through my blog because pills work differently for everyone. I can share however, that the following things do provide some level of relief and on some occasions, depending on how bad the pain is, will lead me back to a pain-free head.

The Ice Wrap

One of the most popular home remedies for migraine headaches is the use of ice wraps. Many stores and pharmacies sell these inexpensive ice wraps, which are used around the head or on the neck in order to get rid of headaches quickly. It is usually very effective at soothing the body, which helps to ease pain almost instantly. I have found it tremendously helpful when combined with a warm bath. I fill my tub with water as warm as I can tolerate it, and lie there for 10 mins with an ice wrap on my head. You can dim the bathroom light (or use a candle) and if soothing music works for you, do that as well.

It is important to note that you should not spend more than 15 minutes in hot water or leave the ice pack for more than the same amount of time. Being inside very hot water for more than 15 minutes can raise your body temperature, causing other complications. Leaving the ice wrap on for more than 15 minutes will cause the area to get very cold, and when removed the body will shoot a lot of blood to the area to warm it up, which can trigger more pain.

Deep Massages

When many people think about home remedies for migraine headaches, they initially think of deep, relaxing head massages. The kind that have been proven to give some measure of migraine headache relief. Such quick & easy to do treatments work best when done in a dark room where someone other than yourself is massaging the head and neck. I have found that massages during a migraine do not work for me, but they help me in preventing one.

Taking a Bath or Shower

I talked a little bit about this on the ice wrap paragraph above. This is a fast cure for migraine headache that cannot necessarily be explained, but is usually effective for people who are suffering from a sudden migraine attack. Getting into the shower during pain could prove difficult, but once there, the headache pain will start to slowly subside. It works for me to wash my hair and massage gently while taking the shower. This greatly decreases the level of pain and sometimes I walk out of the shower pain free.

Lie Down in a Dark Room

Since bright lights are known to intensify a migraine headache, lying down in a dark room with your eyes closed can instantly help to bring down the pain by a notch or two.

Preventing migraines – alternative therapies

I will let you do your own research on other alternative methods and will only list here what has worked for me.

Acupuncture

When I was pregnant with my second child my neurologist diagnosed me with 3 different types of headaches, of which 2 were migraines. Due to the pregnancy I wasn’t allowed to take prescription drugs, so he suggested acupuncture. At that point I was experiencing daily migraines and was willing to give anything a try. Acupuncture was very effective in preventing my migraines. Instead of daily migraines, I was now experiencing one a week. If the migraines return to me frequently in the future I will definitely go back to acupuncture. It’s not as painful as it looks and I promise you won’t look like Jason (from Friday the 13th!). Or was that Freddy Krueger?

Magnesium and Riboflavin

There is much research on this topic, there is correlation between lack of magnesium in your blood and migraines. According to the University of Maryland Medical Center, many migraine sufferers have a magnesium deficiency or levels that are lower than those who do not suffer from migraines. Three of the major culprits in migraine attacks–alcohol, menstruation and stress–also deplete magnesium levels in the blood. Food sources of magnesium include seafood, whole grains, soy products, dark green leafy vegetables, beans, wheat germ, milk and bananas, although bananas can trigger migraines in some people. It has been proposed that riboflavin increases low brain energy production in migraine sufferers. The urine may become slightly orange when riboflavin supplements are taken. Magnesium has been shown to reduce the frequency of migraine attacks when sufferers took 200 to 600 mg of magnesium daily. Read more here:  http://www.ehow.com/about_7229729_magnesium-riboflavin-headaches.html#ixzz1sWelf5c5

Oh, the power of exercise!

If you read my blog on Fibro fog you probably read about the impact that running and yoga have had on my life. What I neglected to mention in that post is that they also help prevent migraines! You don’t have to limit yourself to these 2 types of exercise, it is proven that any type of exercise improves your well being by increasing the oxygen flow to the brain and the production of hormones. A lack of serotonin, as stated above, has been linked to migraines. See a related article: http://www.sciencedaily.com/releases/2009/04/090416102243.htm

I hope this post helps you. If you have found other things that work please do share!  There are 30 million of us with migraine headaches that could benefit!

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Posted by: nashuafibrosupport | April 16, 2012

Caution! Brain on vacation …

If you’re anything like me you forget things. It dawned on me that something was wrong when my 4 year old daughter told me one day in the car “Mommy, you forget everything.” How embarrassing! If she notices, certainly my peers and friends have noticed. This is another wonderful perk of Fibromyalgia (FMS), it is referred to as Fibro Fog.

When I was first diagnosed with FMS I was in a full flare, so I was very focused on the pain and exhaustion. No one, including my doctor, ever mentioned to me that there was a brain fog component to this disorder. I was juggling so many things: a full time job, 2 kids under 3 yrs. old, a brand new house, my husband, my baby’s newborn diseases, FMS and going through all kinds of hormonal changes related to my current birth control method. Multitasking had become my way of life, and I thought the occasional forgetfulness had everything to do with my multitasking. Then the forgetfulness became an everyday thing, that’s when I found out about cognitive dysfunction related to FMS.

Foggy brain?

On a typical day I set out to the kitchen to get something and once I get there, can’t remember what I am going to do. I had to start asking the daycare teacher to send me a text reminding me everything I needed to do to prepare my children for the next day. My credit score suffered because I would forget to send payments. Oh, how it bothers me to have to pay a $35 late fee because I am late! Even worse, I prepare the checks (stamped envelope and all) and carry them in my purse for weeks before remembering to mail them. I now have to keep TO-DO lists everywhere and for everything. It’s a miracle that somehow I am still able to remember my most frequent passwords! Now I keep a file with all my usernames and passwords, which I believe is a terrible thing to do.

What’s on the menu? I’ll have some scrambled thoughts with a side of inattention please! At work I feel extremely stupid. People approach me to explain something technical or just an issue, and I can’t make anything out of what they are saying. They might as well speak Swahili! Not only do I not understand, but even when I do, I am incapable of repeating exactly what I just heard. Yes, I’m also beginning to think I have ADD. I find myself wandering around mentally while people are talking to me. I travel to Italy, visit Australia, I think about how to resolve my baby’s sleeping habits, when will I do the groceries, what else am I missing from this morning’s to-do list. In the past few years this seemed to happen to me only when attending boring meetings. Now it happens on one-on-one meetings with peers. Imagine having to lead daily meetings with high leadership at work, you know, the big Kahunas. The future of your career depends on it. You start to “impress” and all of a sudden stop talking because you have no idea where you were headed with your thoughts! This happens to me frequently.

Fog and ADD

There is correlation between ADD and FMS. I heard on a podcast from this website that 30% of the patients with ADD are also diagnosed with FMS. I have asked my doctor to test me during my next physical. You probably should too. I will let you do your own research on ADD but here are some similarities.

Symptoms common to both ADD and FMS
· Low stress tolerance
· Concentration or memory problems
· Mood swings, depression, anxiety
· Poor organizational skills
· Low energy
· Difficulty relaxing
· Sleep disturbances
· Poor regulation of body temperature
· Skin rashes, itching
· Urinary frequency
· Reflux, gastritis, ulcers, constipation or diarrhea
· Aches and pains
· Low or high blood pressure
· Yeast or fungal infections
· Allergies, asthma, bronchitis, sinusitis
· Sexual over- or under-arousal
· Numbness and tingling (carpal tunnel symptoms, legs “going to sleep,” etc.)
· Heart-related symptoms (chest tightness, palpitations, etc )
· Poor coordination, other gross motor skills
· Poor handwriting, other fine motor skills
· Impulsive eating or spending

I do remember when I was smart! I remember getting my Engineering degree, mentoring others, teaching a roomful of adults at work, being considered a Subject Matter Expert (SME) in my field, etc. I remember thinking other people were slow and being impatient with them because they just didn’t get it. Now I don’t get it! I lack self-confidence. I imagine that I have secretly become the joke at work: “There goes AMR.  You think she remembers how to get to the conference room? Ha ha ha”. Sadly, this is part of FMS, so it’s here to stay. Luckily, I have found several things that work for me.

The power of exercise

Don’t leave my post yet! Yes, I did say exercise, but I did NOT say weight training. I understand how difficult it is for people like us to even think about exercising. I cringe even thinking about it most days but have found that if I push myself and do it, I feel much better afterwards. Exercise stabilizes your hormonal balance, mitigates stress, and increases well-being. Yes I admit, I am in pain the next day, depending on how much I push myself. This pain however, results from being sore because I did something great. It is not the dull, boring pain we FMS “sufferers” feel every day.

Every single day is different. I will tell you what works for me, most days. I started with walking ½ mile a day every other day. I was feeling well so I ramped it up to every day, and eventually 1 mile every day. Then I decided to run. I will give you full details on running in a separate post but will summarize it this way: running changed my life! It was extremely difficult at first, some days it still is, but every time I do it I feel a wonderful sense of accomplishment and well being. I can’t describe it. You know the expression on a baby’s face when they take their first 2-3 steps and reach the sofa without falling? That’s exactly how I feel. After a year, I am now able to run 8-10 miles a week, and could do even more if I had the time. Whenever I feel very stressed or worried, I go running. Whenever I see a nice sunny day, I go running. Whenever I can muster some energy, I go running.  On average, the weeks I run I can sleep better and have significantly less pain that on the weeks I don’t. In the winter, when running outside is harder, I have found I have more 3-4 flares per month. In the summer time when I run outside, maybe 1 per month. Even better, the fog has lifted! My focus increases tremendously, I have clarity of mind when I run regularly. Go ahead and visit my running post to learn how I did it. Every little bit helps, if you’re not interested in running, try walking as briskly as you can. It is important to note that prior to starting ANY exercise regimen, you should consult your doctor!

Another one of my secrets to well being is Yoga! I had been practicing Yoga for years, including pre-natal yoga. Once I had my first child I stopped entirely (not sure why). Oh, how I missed it. Yoga does wonders for joint pain, and because it’s about stretching your muscles and getting balance, it helps your brain too. Again, I will admit, it is difficult for me to do Yoga, so I choose what works for me. In my case Hatha or Slow-Flow Yoga works best, I have not been able to do Vinyasa yet without being in pain for weeks, but am working my way there. It’s key as well to understand the philosophy behind Yoga and want to do the poses correctly, to gain maximum benefit. The most important thing is, to listen to your body! Do the modified poses whenever you are in pain, that’s what they exist for. By no means force your joints into pain, you will be much more sore afterwards and probably even hate it. If you are unclear on how to modify a pose ask your instructor. There is ALWAYS a modified pose, and the wonderful thing about yoga is, you can make it as deep as you want it to be, it’s just like a massage. There’s no need to do all those weird yoga poses to gain benefit, you can do it step by step, at your own pace. Meditation helps improve your sleep! I have found that on the days I do Yoga, I fall asleep within 5 minutes, whereas on a typical non-exercise day it might take me anywhere from 20-45 mins. You can read my post on yoga (coming soon) to get more details.

I have found time and time again that exercise improves my foggy brain significantly, and when I’m feeling confused, hazy, or on the road to depression, exercise always brings me back. It also helps me be a better mom and I can now engage on activities with my kids, and am less moody.

My suggestion is: give it a try, there’s plenty of other things you can do that are low impact on joints, such as, swimming (another thing I love to do), bike or spinning, and just plain walking. Keep it at your own pace, listen to your body, and push yourself only as far as you can go with the pain, maybe a bit further! The most important thing is to keep your body and MIND active, reduce stress, and gain sleep.

Does anything else work for you? Have you noticed improvement in brain fog and how did you do it? Are you willing to try any of the suggestions stated here? Let me know your thoughts!

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