Need Sleep Like A Skinny Chick Needs A Cupcake? Here Are Some Coping Suggestions

For people with Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS), the combination of pain and sleep disturbance is a constant influencer in their everyday health as well as a double edged sword: the pain makes sleep more difficult and the sleep deprivation exacerbates the pain. It seems pretty simple that if you can impact the sleep issue, in turn you will be relieving the pain, at least to a point. If you aren't already, it is recommended that if you suffer from (FM/CFS) to implement sleep specialists into your treatment plan to help get you on the right track to healthy sleep habits.

There are a variety of conditions that can lead to widespread pain and chronic fatigue; however, Fibromyalgia generally includes cognitive difficulties (foggy thought) and the grievance of fatigue that is debilitating, and unrelieved by rest. Now, it is possible to experience these same symptoms if a person is suffering from sleep apnea or other non FM related disorders. Don't self diagnose yourself here, people with FM may also suffer from sleep disordered breathing, so it is recommended you keep a sleep and sleepiness diary to present to your physician or specialist on your next visit.

SYMPTOMS:
Fibromyalgia usually includes a broad range of symptoms including some combination of the following:

• widespread pain
• sleep disturbances
• morning stiffness in the joints and muscles
• chronic daytime fatigue
• migraine headaches
• painful menstrual periods
• irritable bowl syndrome
• restless legs syndrome
• numbness or tingling of the extremities
• temperature sensitivity
• cognitive and memory problems
• mood disturbance such as depression and anxiety

TREATMENT:

As of yet there are no FDA-approved drugs specifically developed for fibromyalgia but there are medications commonly used for other conditions that are effective treatments(ie.Lyrica) So for now most physicians focus on the treatment of behavioral methods such as exercise and massage which have shown to help patients improve their sleep and in return reducing the amount of pain and daytime fatigue.

COPING:

Fibromyalgia is a very real and persistent condition for which there is no cure. There may be times of the day, month or year that symptoms become more severe and they have also been known to remit for an extended period of time only to reappear later for no apparent reason or following a traumatic stressful event either physically or emotionally. But, there are ways of helping you cope with the symptoms of FM/CFS and aiding in the prevention of exacerbated pain. Here are some tips:

• Prioritize sleep - it is important for people with fibromyalgia to maintain a regular sleep schedule and to get treatment for sleep disorders if necessary.
• Create a quiet environment - chronic pain has been known to intensify in the presence of sound stress.
• Exercise - regular exercise is known to improve symptoms in some patients. For people with fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
• Medication - work with your physician to develop an effective medication regime.
• Massage - gentle message, deep breathing and relaxation techniques are all generally considered beneficial with respect to chronic pain/fatigue management.

I know for some of you seasoned sufferers this is all old hat information but if you are not implementing any of these treatments or coping strategies into your daily routine you are doing yourself a great disservice. I know there is nothing harder than waking up in the morning, barely making it out of bed only to put one more fight in your schedule such as diet and exercise. I am the last person to preach about exercise, I hate it even on a good day but I do know that when I do force myself past the pain, even to just walk around the block I have made a difference in my recovery and not just become a victim of it. I also know it helps if you have motivators, so find a walking group or a FM/CFS support group and suggest a group walk activity. (this is one of those good peer pressure times) What do you have to lose? Besides, if you can find a way to motivate yourself into healthy exercise and sleep habits you just might be able to have your cake and eat it too!

Stem Cells: Leap Forward Or False Start For Fybromyalgia/Chronic Fatigue Syndrome Patients?

As I sift through all the media files, emails, updates that I get everyday on Fibromyalgia(FMS) and Chronic Fatigue Syndrome(CFS) treatments, this subject caught my eye. Before you fall fate to the stigma of stem cells research read on first, this may just peak your interest.

[1]Researchers at Harvard said they have taken bone marrow cells from people with several genetic diseases and turned them into stem cells. Their motivation here is to help them understand how illnesses like Parkinson's and ALS (Lou Gehrig's disease) work and hopefully, lead to better treatments and possible cures. What does this have to do with FMS/CFS? There are a few key factors we do know about all of these illnesses and that is they are neurological, have a lot in common and are all poorly understood.

[2]What we do know, is FMS/CFS and people with Gulf War Syndrome share the same genetic mutation that can lead to ALS. (Note: In Gulf War syndrome, it takes the genetic mutation combined with exposure to certain chemicals to trigger the condition, much like a genetic predisposition combined with certain viruses or other stress's that may lead to FMS and CFS.) 

Think about it, when we all look back at the "trigger" that started the landslide of physical events in our lives whether it be enduring periods of high physical and emotional stress or even a common virus that has triggered CFS in some people; wouldn't of it been great to have a test that would reveal a genetic marker to the predisposition of CFS/FM? This obviously isn't a cure, but if they are able to create such technology from their stem cell research it would be a huge step in the right direction if you ask me.

If I could take back those 9 years of my life where I didn't know what was wrong with me, being misdiagnosed, misunderstood and feeling helpless;it would be priceless. What do you think about stem cell research in this form? Do you think it is a step in the right direction or is it just another scientific hype that is wasted hope? 

[1] Harvard Stem Cell Institute
[2] Topix.com

Do I Have Fibromyalgia? Or Was I Misdiagnosed?

We talk a lot about sufferers of Fibromyalgia and Chronic Fatigue/Pain Syndrome not being heard, but what about the patient who is having similar symptoms but being misdiagnosed. I read an article on WebMD that shares a story of such an event as well as some other people who are in search of answers that I though I would share with you.

"One member of WebMD’s fibromyalgia community wonders if it's possible that she has been misdiagnosed with fibromyalgia. “My pain is centered in my lower back. I was under the impression that fibromyalgia affects the whole body,” she says. She has back spasms and can’t sit for an extended amount of time. Some days her spine is tender to the touch. A set of X-rays showed she had a curvature in her spine and an MRI showed multiple bulging discs. But her doctor says her back pain is due to fibromyalgia, not the discs. “My doctor says the discs are not the problem,” she says. “Per my doctor, I have over 17 pressure points.”

Her other symptoms include extremely dry eyes, mostly in the morning. “Both eyes feel dry and feel as though there is something in them.” In addition, she has difficulty sleeping and often feels fatigued. She is taking pain medication and a medication for anxiety, but she is no longer doing any type of therapy because it caused too much strain on her back. She wonders if any other community members have experienced similar symptoms.

One man responds that he had a similar experience when he was first diagnosed with fibromyalgia. “My intro was just in my chest muscles -- I thought I was having a heart attack at the time.” He suggests she see a rheumatologist, if she hasn't already, for an accurate diagnosis. But he says it’s important to find a rheumatologist who is experienced in treating fibromyalgia. “Call around. Your first question should be, ‘Does the doctor treat fibromyalgia?’ Unless you get a definite YES, keep dialing.”

Another community member agrees that the symptoms described sound like fibromyalgia. She says that in her experience, fibromyalgia symptoms can vary a lot from day to day. “I know that in the many years I have dealt with fibromyalgia that there aren’t many days that are the same or many areas of my body that acted or reacted the same time after time,” she says.

One member wonders how to find a doctor in her area who will diagnose fibromyalgia. “I live in the Louisville, Kentucky area and have yet to find any doctor within 100 miles who will diagnose or believe in fibromyalgia,” she says.

Two community members say that diagnosing fibromyalgia can be a long and frustrating process. One of them adds that it took her three years to get diagnosed.

Another woman suggests consulting with her primary care doctor and voicing her concerns about fibromyalgia. “You have to keep at it until someone listens,” she says. She suggests writing down a list of all her symptoms and giving the list to her doctor. “That way you don’t forget anything, and if you are shy or nervous then it is in plain English for the doctor to see. Usually it starts the process of questions by the doctor.”

Two other community members also suggest trying to find a rheumatologist to diagnose fibromyalgia. They say that in their experience, rheumatologists generally seem to know the most about fibromyalgia and are more likely to diagnose it correctly. “Don’t give up, ever. Keep asking until you have an answer and a diagnosis,” one says."

It is just as important to be proactive in your healthcare as it is to be hesitant when the pieces don't fit together. I am the first to admit it is frustrating to want a name, a diagnosis for all the pain that you are in and sometime we get desperate and when the Dr. says it's Fibro, well it must be Fibro, right? Well, it's not always the case and as some of you already know many autoimmune disease symptoms run parallel to each other (ie:Lupus,etc) and when not treated correctly the long term damage can be scary. 

The lesson here once again, is to find Dr.'s and specialists you not only trust but come recommended, but to trust your gut. If you feel as though things just aren't adding up, speak up and keep pushing forward until they do.

If It Was All In My Head I'd Just Take An Aspirin!

According to the American Autoimmune Related Diseases Association, an estimated 23.5 million people world wide suffer from autoimmune diseases. It makes me ask, "With that many voices, why are we still not being heard?" All be it, the majority of these diseases have scribed their place in the medical books and are becoming more and more recognizable; however, a large number of people are plagued with invisible diseases that continue to go unrecognized, untreated and with disregard not just by the medical community but society as well.

What are we left with? An entire society of people who have become afraid to use their voice. They have been told by Dr's that it's all in their head and not to worry. Their peers have muted cries for help because there was nothing visibly wrong and the worst part of it all, is after a while they start to believe it!

This plight is not about sympathy but empathy. It is about the community of our peers, family and friends not just recognizing but supporting in the cause for a cure. I am here to tell you, it is not all in your head! You are not alone in this fight for understanding and a sense of reprieve for wanting someone to say, "It's ok, we will fight this together. You are not alone".

You are the voice, you are the teacher and you are a survivor! To show your support and help fund the expansion of awareness for Fibromyalgia, donate $2.99 by purchasing our "Fight Like A Girl" bracelets. (shipping included to all U.S. states)

CLICK HERE TO BUY NOW!

Fight Like A Girl! National Fibromyalgia Awareness Day, May 12, 2011

May 12th is the National Fibromyalgia Awareness Day so this is our chance to educate, advocate and put a face to this invisible disease. "Subscribe" to show your support for this cause, share this link with your networking sites and invite friends to join in and "Fight Like A Girl!"  We are always in need of donations to help expand our exposure, create awareness and aide in finding a cure for Fibromyalgia so this year we will be selling purple silicone bracelets that read "Fight Like A Girl for Fibromyalgia". They are $2.99/each including shipping and for larger orders there are discounted rates. You can email us with questions about donations and bracelet orders here: I Fight Like A Girl!.

CLICK HERE TO BUY NOW!

Taking Tramadol or Ultram For Your Fibromyalgia?

I don't usually do this sort of thing, but it is Tramadol that has saved my life! It is a non-narcotic that has curbed my pain, given me mood elevators and mobility I never thought I would have again. They are U.S. based, legitimate and only ship within the U.S and to all 50 states. I wouldn't use or put my name on something I don't use myself. It is worth checking out - plus they have 24/7 customer service. www.usloyalrx.com Email me if you want more info, I swear by it! ploorden@gmail.com 


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Information Overload: Where Do I Begin?

All of us who have been diagnosed with Fibromyalgia have felt like a dummy at one point or another, in my case I still do; sometimes more than others but there is always a place to start. My story begins with a horrible car accident back in 2004 that has clearly become the bookmark to my path down Fibro lane. Up until this point in my life I was a happy mother of two young girls, working full time in a career I loved and had always been physically active - in fact I was a firefighter for the USFS all through college.

Then BAM! My world was turned upside down and inside out with a treasure trove of  unexplained illness and pain. I religiously met with my physician to discuss why I felt so tired, sick and just plain bad all the time. His response, "You are just recovering form the accident, this too shall pass". Well, a year later, countless Dr. visits and an undisclosed amount of increased pain medication I was still no better then when I was hit by that truck a year earlier. There was one thing the Dr. was right about, when he said, 'this too shall pass' I don't think either one of us assumed it would be massive blood clots or Deep Vein Thrombosis that had been building up in my legs that had then moved onward and upward causing a massive pulmonary embolism. I was diagnosed by sheer necessity, after driving down the highway with my children in the backseat of my car when I just stopped breathing. My lungs had become so consumed with clots that I had lost a large amount of lung function, leaving nothing but literally the oxygen from the blood in my lungs to keep me going long enough to get to the hospital.

Well, isn't that just dandy right? This was the beginning of the end of my old life. I will leave the rest of my personal health discoveries for another time, but my point, is that we all have a bookmark. I had started a daily journal just after my accident about the way I felt each day and noted if something unusual popped up, possibly from a food I ate or an activity I had done. It all sounds mundane I will admit, but I still keep this journal even after all these years so I can keep track of not only my progress but so I can be aware of any changes I may feel the need to discuss at my next Dr.'s visit.

Everyones experience and "bookmark" will be different, this just happens to be mine. I think it is important for each of us to know when and how this disease decided to trigger in our lives in order for us to come to some sort of understanding. Undoubtedly you will go through a sort of grieving process, I sure did. Sadness, Anger, Fear, S%^*! (I had more than one of those), until we get to understanding. Not closure, but understanding. This is where we can start to make the right decisions about our bodies, the disease we have and how best to manage it.

We can talk ourselves into anything and with the countless information out there you could talk yourself crazy! So don't, start with the things you do know - yourself! Write it down, make notes of questions to ask your Dr. and remember, "This too shall pass", from one Fibro fighter to another and then another.

P.S. If your medication is not covered by a medical plan or you do not have insurance like I do, I will recommend this site. It is the best American loyal U.S. based online pharmacy there is. They will treat you with the respect you deserve and answer any questions you may have. www.usloyalrx.com

Can You See Me Now?

"Can you see me now!?" I don't know how many times I had thought of saying this to a Dr. while describing the symptoms of my already diagnosed Fibromyalgia, especially when they gaze back at you with this blank stare of either disbelief or annoyance. "I'm sorry, am I waisting your time?" I say to myself. Well, too bad. I am not about to get into religion on here, but I have come to the conclusion that the drones of science have forgotten what the rest of us rely on, FAITH. I am personally a realist and mainly live by the notion that my life completely rests on my ability to make things happen. 

I think Fibro is life's little way of throwing a wrench into my albeit flawed ideal and saying, "See, told you it wasn't that simple". Well, thank you wrench, you're right. I can't do this by myself, so for now like most of you I am at the mercy of Dr.'s, family, friends and the occasional perfect stranger to help me make face this invisible attacker.  

Mercy, mercy, me! Sounds like a lot to take on and sometimes it most definitely is. The good news, there are things you can do to help make your situation and hopefully you feel better. First and foremost my best advice is always, Be your own advocate! This is crucial, especially if you are still trying to figure out what is wrong you. It is a long and tedious path to travel in order to get to the final and last resort diagnosis of Fibromyalgia. There are so many different autoimmune diseases out there that can mimic the same symptoms unless you are tested for them all, you will never really know what you have. This is where your determination to get answers and relief come in. If you feel as though your Dr. is ignoring your concerns, tell them! Don't be afraid to stand up and say, "You know, if you don't take me seriously and help me figure out what is causing my discomfort, then I will be finding a new Dr.". 

I'll tell you this, I went through 4 General Practitioners, 2 Pulmonologist's , 3 Internal Medicine Specialists, 1 Gastroenterologist, 1 Oncologist and 2 Pain Management Specialists  before my final diagnosis. Only then, was I able to say without a shadow of a doubt that I have Fibromyalgia. The lesson here is, don't take no for an answer. This is your body, your life and you are the one who has to live with both. So, take a stand, make demands and find answers, it isn't until then that you can start working on a true recovery. Not only will this save you some pain and sometimes heartache in the process but it will give you a sense of empowerment, you should be in control. 

Can you see me now?!

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Fibromyalgia: The Social Killer?

We all have the pain, some more than others but what's more than just fighting the constant physical disruption is the interference this disease has on the relationships we have with our family and friends. It is the invisible destructor of mind, body and soul; that is if we let it. 

I have have had Fibromyalgia for almost 6 years now and between managing work, family and friends, the last thing I wanted to do was reveal my diagnosis. I didn't want to be thought of as week(though I was), or a burden. It is hard enough to find physicians who will work with you to the final diagnosis let alone trying to explain what is going on to your closest friends right?

The way I look at it we have two options, one is to keep is quiet and carry this overwhelming burden to ourselves or two, choose a few close family and friends and do a sort of information intervention. Over dinner, drinks, whatever; talk to them about what this disease is and how it effects your day to day activities. Show them some information about treatment and the side effects of the disease. Up until this point all they know is that you have been evasive, despondent and great at avoidance.

I think you will be surprised and relieved by the response you will get. Instead of your closest feeling as if they had done something wrong to trigger your behavior, they will begin to understand why you have canceled coffee with the girls, dancing with your husband or all the other social activities you now find yourself avoiding due to the pain and lack of energy.

I too, am still a work in progress and try to be as independent as possible but sometimes there are days that are just too much for me to handle. So when I ask a friend to help carpool the kids or to go shopping with me and help unload the groceries it takes some of the stress out of my day and also keeps me in touch with those I am closest to.

There are some great support groups in most cities out there, if you know of some in your area please feel free to post them here and be sure to share your story with us; it is the lessons of other which make us stronger.