Causes, Doctors, and Medications

I ended my last post with the promise of information regarding what Fibromyalgia is, as well as discuss the “causes” of Fibro, how to find a doctor that is familiar with it, and obtaining the right diagnosis.

I shall begin by saying that there are no known absolute causes of FMS. There are theories as to what causes it. Some of the top theories include: (taken directly from Fibromyalgia for Dummies, by Roland Staud, M.D. and Christine Adamec, Medical Writer, 2002, Wiley Publishing, Inc. -- pg. 11) "The cause could be hormones or an autoimmune problem or biochemicals gone awry, or it may be related to a previous trauma, such as an injury that you incurred in a car crash or in another serious accident."

It is important to note the emotional side of it as well. If an individual suffers from depression or another mental disorder, the symptoms of Fibromyalgia can become exacerbated. It is important to discuss with your doctor what the possible cause can be.

In terms of finding a physician who understands the dynamics and troubles of Fibromyalgia, this may be difficult at first, but do not let it deter you from reaching your goal of finding a doctor and exploring pain and symptom management. Along with the cause being in the grey area, you must know that there is also no cure for FMS. But fear not, if you are suffering, there are a great many things that can be done to help alleviate the symptoms. These can include medication, life-style changes, complimentary therapies (Chiropractic care, Physical therapy, Massage therapy, etc.) a change in diet, - or any combination of these.

While many physicians are at least familiar with FMS, some are not quite well versed in it's symptoms, etc. You can work with your existing family doctor and explore the syndrome together, or look for another doctor that is well educated to it's effect, pain, symptoms, etc. The best place to start would be to gather a complete medical history, and perform a full medical examination. Once that is completed, the two of you can create a treatment plan that can include any of the suggestions recently mentioned. It is likely that your beginning treatment plan will include medications, either prescribed or over-the-counter (or both), some basic life-style changes, minor diet changes, and what I like to call "Soft" exercises.

"Soft" exercises for me in my pain management is Yoga (which helps with fatigue really well), doing basic exercises using a yoga ball (55cm size would be my recommendation as some days you may not feel quite steady and anything larger may put you at risk for a fall or a twist that you don't want) Books that outline types of exercises on the Yoga ball can be found at most book stores and certainly online. I also try to walk everyday, even if it is just to the end of the street and back. In the colder months, that will prove impossible, because any extened exposure to the elements can cause more pain than anything, but there are things that can be done inside during the winter that can be equivilent. If it is in your budget, perhaps you could invest in a treadmill.

It is important to note that IMMOBILITY can be as bad as MOBILITY. So make sure that you are getting up and moving around every day, even if you are in the middle of a flare. Sitting on the edge of the couch and doing some simple deep breathing, and stretching can make a world of diference.

MEDICATIONS:

I am not a doctor, and therefore, will not recommend anything. This is for you and your doctor to determine what will work best for you. But I will tell you MY experiences/ progressions with medications.

When I was diagnosed in 2006, I was put on Cymbalta. This is an anti-depressant that claims to help with the physical symptoms of depression (pain, etc.) and has been shown to improve the symptoms of FMS in some patients. I was also given Neurontin. I did NOT like this as it made me so loopy, I could not focus on anything, drive, and at times, felt as though I was not walking straight.

Please note: Anything that I may tell you about my medications is MY story, I do not want it to deter you from trying these medications. Each person is different and medications will affect each person differently.

After those two, I was given countless NSAID's ('Non-steroidal Anti-Inflammatories' - such as Tylenol, Ibuprofen, etc.) I was also given a low dose of an anti-depressant, of which we had to cycle through a few of them as well, to find one that I could tolerate. My pain continued to get worse and my tolerance for it diminished. We then tried narcotic pain medication. We started out with Tylenol-Codeine 3, it didn't work out..too many unpleasant side-effects. We then went to Vicodin, then Norco - both hydrocodone and it had absolutely no effect on me. Next we tried Darvocet (also a Narcotic) and that worked for about one and a half years.

The thing with Narcotic pain meds is, one: they have the potential to be very addicting rather quickly, and two: you may have to continue to increase the dose as your body will begin to build a tolerance to them. This is what I experienced with the Darvocet. We increased the dose twice, then the frequency, then as with many narcotic pain meds - my body got so used to it, that it began to lose it's effectiveness. From there we attempted Vicodin again - still did not work, and now for the past six months, I have been on Percocet (Oxycodone). This seems to work very well, but even within six months, we have had to adjust the dose and frequency already. I am however, NOT addicted to it. It take is as prescribed and it is working well.

Some may not tolerate Narcotic pain meds well due to the side effects. I certainly would encourage you to explore Non-narcotic meds to help manage your symptoms, if that is what you and your doctor decide to do before progressing to Narcotics.

Another medication, that you may have seen commercials for is a medication called: Lyrica (Pregabalin) that can start at 25mg and go as high as 100mg capsules (if I remember correctly)

http://www.lyrica.com/fibro_homepage.aspx

I am currently taking 100mg capsules three times a day. It seems to be helping and I take it faithfully. I have enclosed that link so that you can explore the medication's website. It is very informative about more than just the medication itself.

Well, I should get off to bed, but I will return soon and offer more information as much as I can. As always, you are welcome to contact me with any questions, comments, etc. Take care and remember that you are not alone in this battle for relief.

Just what IS Fibromyalgia??

WHAT IS FIBROMYALGIA?

FIBROMYALGIA, also called FMS, is a chronic syndrome of wide spread pain and fatigue. It is not degenerative, but the symptoms can get worse over time. There are certain areas of the body that are extremely sensitive to touch, pressure, etc. These are called Trigger Points. There are roughly eighteen of them throughout the body, most commonly in areas where there is a connection of tendons to muscle. (ie: just below the collar bone in the front, the lower back, hips, inside of elbows, back side of knees, and many other places.

The American Medical Association (AMA) recognizes FMS as a true illness, and not something that is all in your head. Fibromyalgia sufferers hear this phrase very very frequently..”It’s all in your head.” This is not the case, expecially if you are the one with FMS – you know different….but how do you convince others that you really are in pain?? This can be very difficult, but do not get discouraged…take care of yourself first and worry what other people think….well…never!

Some major and very common symptoms of Fibromyalgia include wide spread pain, a constant feeling of exhaustion, body aches, depression, irritable bowel syndrome is sometimes seen with FMS patients, insomnia or other sleep problems, and headaches, sensitivity to sound, light, etc., confusion and clumsyness, often called Fibrofog – it gives you a feeling of spacey, sometimes lightheadedness, and forgetfulness. These are some of the most common, but this is not the final word on symptoms. They vary in occurrence, severity, etc. per patient.

There is also something called a FLARE. This is when the symptoms of FMS increase (Flare-up) and can basically render you useless at work and at home. Me personally, I am couch-ridden during flares and it hurts to even walk to the bathroom or to the sink for a glass of water. Often times, many patients need medication, sometimes even narcotic pain meds, to relieve the symptoms…this will be discussed in detail in a later posting. The thing you need to know about flares is that when they occur – they can occur out of nowhere, although there is generally always a trigger that sets it off. When you feel a flare coming on – MOBILIZE! Mobilize your children, your significant other, your family, your boss, everyone that helps you through this.

Don’t be afraid to take time to yourself. Give yourself permission the let the dishes sit in the sink, the laundry remain unfolded, and allow yourself to rest as much as possible. Now of course, if you are a mom – you barely know what rest and naps are anymore unless it is your children that are doing so. NO MATTER HOW OLD YOUR CHILDREN ARE – THEY WILL UNDERSTAND AND THEY WILL NOT HATE YOU FOR IT.

Some tips for interacting with your children during a flare:

• Have them lay on the couch with you and watch a movie (Finding Nemo is my favorite), and if you happen to dose off for a few minutes- that is ok.

• Lay on the floor (if you can tolerate it) and color or draw with them. (It may be difficult to color as your arms will feel like they are on fire after only a few minutes, but who says you have to finish the whole page?)

• Ask them to fold your laundry for you and let them play dress up with some of your clothes and while laying on the couch – let them give you a fashion show. Perhaps even take out your camera and snap a few shots.

• Allow them to water the plants and feed the animals – most kids like to do that.

• If you can tolerate it and of course, depending on the weather – sit or lay outside in a law chair with a blanket and watch as your children play, you may even be able to throw the ball back to them a few times.

• ALWAYS keep board games on hand! Guess Who is one of my favorites, my oldest and I can play that for hours. Another fun game and good for younger children, as it will help with their counting is Mancala. On your good days, take the children to the store and have them pick out two or three board games with you and simply explain to them, that when mommy does not feel well, we can play these games together, etc.

• You can also invest in some craft books. I have found many at second hand stores, although my absolute favorite is a book called EcoArt, by Laurie Carlson. It is an "Earth-friendly Art & Craft Experiences for 3-to 9 year-olds". To me, it is an opportunity to teach our children - the next generation - about Environmental respect and care. Craft books are always a fun thing to have on hand, especially on rainy days (and we know what happens on those days).
  

Some tips for meals while dealing with a flare:

• Always keep healthy nutritious snacks in the house – juice boxes, fresh fruit, granola bars, sliced veggies to be eaten with peanut butter or ranch dressing, crackers, popcorn, etc.

• If your child is old enough (I would say at least 8) have them make their own sandwiches for lunch.

• Although I don’t like to feed my kids processed foods very often, I always keep a few frozen meals in the freezer on stand-by. They really like Kids Cuisine meals. This will save you A LOT when you need to make a meal but can’t stand for more than a few minutes at a time without feeling like you are going to fall over.

If your family is in the area, and they are willing, you can always have them bring over a potluck, or even better – go ahead and send them to grandma’s for the day. Don’t allow yourself to feel guilty for not spending time with them, even if you have been at work and they have been at school all week. You have them for eighteen years and beyond – a few days is NOT going to damage them.

Well, I started this post with information about what Fibromyalgia is and kind of went on a rant….that will happen with me. In my next post, I will discuss the “causes” of Fibro, how to find a doctor that is familiar with it and obtaining the right diagnosis. I will also begin to explain medications.

Take care and as always – comment or contact me with questions!

Introduction

Greetings! I suppose this is the part where I tell you a little about me, my background, etc......

I am a single mother of two girls. I am a part-time student, soon to be full-time, working on my Bachelor's in Psychology. I also work as a Home Health Care aide, make my own hours and manage my own clients. I live in the northeast part of the U.S.

I was diagnosed with Fibromyalgia in the Spring of 2006. Since then, I have struggled with finding the right type of treatment, medications, therapies, anything you can think of to relive some or all of my symptoms. Currently, I have state medical insurance (Medicaid) and therefore, I am limited to the type of therapies that I can utilize. I would love to try Chiropractic therapy, but cannot afford. I have done research on Acupuncture and although I cannot afford it, I am still looking for a way to get that done, as it is said to help greatly.

I have been through the gamut of medications as well. It started with Ibuprofen, 800mg. = Did nothing. I then was prescribed various anti-depressants, including Cymbalta, which is said to help with the physical symptoms of depression. = did not work. I have tried many other NSAID's (Non-Steroidal Anti-inflammatories.) This include Tylenol, Motrin, Ibuprofen, etc. None of them worked, I still experience a great deal of pain all the time. I then graduated to Narcotic pain medications. Tylenol/Codeine worked for a short period of time, but the side effects where uncomfortable. Darvocet, Vicodin, Norco, etc. All have been prescribed.

Currently, I am taking Darvocet (narcotic pain medication), Prozac (anti-depressant), and LYRICA. This is the first FDA approved medication to treat the symptoms of Fibromyalgia. I began taking it early last fall (2008) and it seems to actually (finally) be helping! I have, of course, had to increase the dosage. I started out at 50mg three times per day. It worked VERY well and got me through the weather change in the fall. This spring, however, I am struggling much more with my pain and other symptoms. The dosage has been increased to 75mg three times a day.

I have also tried things at home that I can do to alleviate my symptoms. There are many that can be done, so I will follow with a separate blog about that. But I will tell you now that Yoga works VERY well, as long as you can stay disciplined to practicing it - even when you are having a flare.

I am just beginning a book about having Fibromyalgia and being a mom, a student, a woman, etc. I am interested in helping others that find themselves in a similar situation to mine with the agonizing symptoms that never want to go away. I welcome any comments and questions and am willing to share any and all information that I can.

The following posts will include: Defining Fibromyalgia and it's symptoms, Medications and traditional medicine options. I will also include information about herbal supplements, alternative therapies, etc, and much more.
I will include links to websites that provide information, books, etc. about the syndrome, so that you can further your own research.
Again, if you have any questions, please feel free to contact me, ask away!

Take care, remember to breath, and live in Peace.