Fibromyalgia is a common condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression, and anxiety.

Saturday, January 30, 2010

Lupus and Fibromyalgia Similarites

I have an online friend who mentioned the symptoms of lupus being similar to fibromyalgia so I decided to look it up. Without getting into all the specifics of this disease I do want to say that the people suffering from this certainly have my admiration because on top of all the aches and pains, severe life-altering fatigue, skin rashes and fevers there is also the possibility of loss of kidney function, anemia and hair loss. This is only a partial list of what lupus can do to your body so my heart really goes out to those sufferers.

The reason I brought this up is because so many illnesses start out similarly in symptoms and can so easily be misdiagnosed, therefore, it is crucial that you become aware of your own body so that when you do go into the doctor you will be able to accurately describe your symptoms. I would write them down and keep a running list as certain problems arise because some are infrequent and you might have forget to mention it.

I also want to invite anyone suffering with aches and pains that seriously alter your life to feel free to comment and be a part of this blog. Fibromyalgia happens to be my diagnosis and I am doing everything I can to educate myself and others about this chronic illness but as I mentioned before, pain is pain, and we all can relate to one another regardless of the label put on the diagnosis.

I would love to hear from each of you how you deal with your illness on a daily basis. Do you find yourself scheduling your activities around it or do you press on and just bite the bullet. For me, the best time of the day is about 2 hours after I have taken my tramadol. I am in the peak of performance and I know I can last several hours before I start to fade. My friends and kids know that I am a morning person and don't bother to ask me to do something late in the afternoon.

I take a 2nd set of my pain pills around 4:30 or so and then I am generally pretty good until bedtime at 11:30.

I have had this long enough to have figured out what works for me. Many times things need to be done or appointments are scheduled in the latter part of the day, but on a regular basis I try to have everything finished before 2:00 in the afternoon. Working on my mosaics is not in this category. I love to work on them anytime of day as long as I feel comfortable enough to sit for a long period of time.

I am not a person who deals well with pain, so if I can take something to release the tension and pressures of the pain then that is what I am going to do. The quality of my life is much better if I am either pain free or experiencing minimal pain. I do know several people, my son included, that simply won't take anything unless the pain gets so bad they have little choice.

I can't honestly say I understand that concept unless there is concern for addiction or reliance on it as I can't imagine having pain constantly and try to get much done. But I want to make it clear that I recognize that each of us has their own way of coping and what may work great for some may not work at all for others.

What do you do?

Thursday, January 28, 2010

Treatments for Fibromyalgia

I didn't do a lot of research on the medications available for sufferers of fibromyalgia before I was diagnosed because, frankly, I didn't think that was what was wrong with me and once my rhuematologist confirmed my illness she immediately put me on a pain pill called "Tramadol" or "Ultram"and it has worked fabulously for me.

But I would like to take a moment and mention some of the natural and prescription treatments that are available on the market today. Because fibromyalgia has so many varied symptoms it's difficult for doctors to really know what to prescribe and I am sure they are concerned about over medicating as well as dependency or addiction.

Each person's symptoms vary so each person's medication will vary too. It's not as simple as some illnesses where there is maybe one medication type and several brands of that type.

The most important thing to remember when you are seeking treatment for your fibromyalgia is to take a look at which of your set of symptoms seems to be the worst. For many it's the overall aches and pains, but for others it's the fatigue and depression.
I think I have had fibromyalgia for many years but there were times when I felt fine physically and could get by with some ibuprofen so it didn't really occur to me to pursue any kind of diagnosis. I had the depression, fatigue and insomnia but I thought it was more situational rather than symptoms of a chronic illness.

Here is a list of the 5 categories of treatment that are currently used for patients suffering from fibromyalgia. I am by no means endorsing any of these personally, but I thought it was pertinent information for this blog.

Anti-convulsants-which were designed for seizures have been known to help many sufferers.
One of the most commonly known one is Lyrica. Two new medications being studied are Neurontin and Ativan, each known for changing chemicals in the brain.
Anti-depressants-some of the properties in anti-depressants seem to work very well for many fibro patients and the most commonly known ones are Cymbalta and Effexor, however, last I heard Cymbalta is the only one recognized by the FDA for treating fibromyalgia.
Apparently the changes in the chemicals of the brain that these drugs bring about has a positive affect for many people. My sister-in-law has a severe case of fibromyalgia and this has improved her life considerably.

Pain Relievers: I was told Ultram or Ultracet was called the "Business mans pain pill" because it is non-narcotic and you will not become addicted. I am not certain how true this statement is but I do know that without the use of the Ultram in my life on a regular basis I would be functioning by at least half the level I am now.
Flexerill is a muscle relaxer that can really help a person, especially during sleep, as it does make you feel calm and relaxed. I use this if my pain is flared up at night as the Ultram has a tendency to keep me awake.

The WebMD states "that insomnia is a big problem in people with fibromyalgia. Research shows that frequent disruptions in sleep prevent growth hormone -- the important restorative hormone -- from being produced by the body. Without growth hormone, muscles don't heal and neurotransmitters (like serotonin) are not replenished.
Without deep sleep, the body can't recuperate from the day's stresses. This can overwhelm the body’s systems, creating a great sensitivity to pain."

There are any number of medications including Ambien, Lunesta, and Rozerem prescribed for sleep that if used carefully and on a short term basis can make a huge difference to people with fibromyalgia. So many times during the night you might be experiencing just enough pain to keep you from reaching that REM state of sleep and when you wake up you are just as tired as you went to bed, if not more. Sometimes we don't even know this is going on and are confused as to why we feel so draggy in the morning.

I would wake up feeling great most of the time but around one or two in the afternoon I just had to take a nap or I wouldn't make it through the rest of the day and I am grateful that I was home and allowed to do that.

Combination Medications: I would imagine this is more common for most of us who suffer from fibromyalgia and are aware of it. We recognize the need for better sleep so we might be taking something for that as well as a muscle relaxer or pain pill for the muscle aches. After all, we have lives to live and we can't do it if we are at half capacity.

Lifestyle Change: This is the last and most important treatment for fibromyalgia patients. We must be willing to take a look at what areas of our life could use and overhaul and work towards a better option.

Excercise and stretching is essential to feeling better. The key is to figure out what works for you and what works against you. Don't overdue, but be consistent and I believe you will feel a difference in a short amount of time.

The foods we consume are also a factor in how we feel whether we have an illness or not. Eating healthy, whole foods on a regular basis can also make a huge difference in your mood and well-being.
I will post on some of the foods that are recommended for those with fibromyalgia at a later time.

I believe we have to take an active part in our overall health and pay attention to our bodies. We need to realize that we can't always keep up with everyone else. The sooner we can figure out what does and doesn't work for us the sooner we can start to enjoy life more.

Sunday, January 24, 2010

More Symptoms of Fibromyalgia

I just got back from my 7 day cruise with my husband and I invite you to my blog Chris' Comments to see some of our pictures and to read my journal of our trip.

In the meantime, I was doing a little more research on fibromyalgia and thought about listing some of the other symptoms associated with this illness.

I have listed the top 9 tender spots on the side of my blog that are used when diagnosing fibromyalgia, but there are definitely many other factors involved when trying to determine this elusive illness.

Here are a few of the more commonly known symptoms you may experience if you suffer from fibromyalgia:

Pain: First of all the pain is not muscular it is more neurological. Fibromyalgia sufferers experience an increased sensation of pain due to a glitch in the central nervous system's processing of pain information. In short, the pain you feel is very real, but the brain has amplified it many times over. Maybe that is where the stigma "It's all in your head" attached to this chronic problem might have come from.

Pain is pain whether it's your brain telling you incorrectly or not. Some sufferers have mild aching pain, while others feel like you might it you had an ongoing flu. That allover aching, tired, worn down feeling.

One of the first things I told my doctor when I was being diagnosed was that the tasks I perform do not warrant the pain I experience the next day. Now I know why. It's not really anything seriously wrong with my muscles, just my brain telling me there is.

Sleep and fatigue: Because your brain does not shut off at night you could be feeling spurts of pain and discomfort that may be keeping you awake or making you feel restless. Either way, your sleep suffers and you wake up tired before you've even started your day. Sleep Apnea and Restless Legs Syndrome are rather common for patients with fibromyalgia.

I suffer from restless legs and have found a natural remedy online called Great Night Sleep that works wonders. It is designed for sleep, but the combination of ingredients is what seems to work for me.

Memory problems: Difficulty in concentrating and remembering is also something you may experience with fibromyalgia, but oftentimes it is difficult to know as we generally lose a bit of that as we age anyway.

Depression: There are varying degrees of depression from the mild lack of interest in activity to the all encompassing black cloud of despair. For many fibro patients depression can arise due to a lack of proper sleep, fear of a life-changing illness, and the constant pain that can wear down your body and mind. Fibromyalgia is definitely a life-changing illness and depression often follows.

The good news is that it doesn't generally get worse with time and there are medications that can help with the various symptoms. I will be writing about some of these medications in a later post.

I think it takes such a long time to diagnose fibromyalgia because of the type of symptoms associated with it. Many people experience depression or have problems sleeping, but they do not have fibromyalgia. It is a combination of the tender points, the aching muscles or overall fatigue along with some of the above symptoms that can finally bring about a true diagnosis.

One of the things you can do when you have fibromyalgia is to not over exert yourself physically, if possible. Don't start up some new exercise plan to lose weight or whatever, because your brain will be telling you for days that you are in extreme pain.

Go slowly and see how long it takes for your body to respond and condition. Truthfully, I have been told by a physical therapist not to even start any kind of major exercise program, ever. Not because your muscles can't take it, but because your brain misinterprets it and can cause serious havoc on your system.

It's unfortunate that many medical professionals still roll their eyes when you mention the word "fibromyalgia" because it is a very real illness. It is also unfortunate that many people abuse the term and it becomes their excuse for their life. Fibromyalgia may not get worse, but it may be here to stay so we have to learn to make adjustments in our lives to work with it.

One of the main reasons I started this blog is so that others will have a safe forum to talk about their frustrations, their symptoms, their highs and their lows. Having a support system is key in dealing with these issues on a daily basis as it can get overwhelming at times and so many people just do not understand what you are experiencing.

I hope each of you will feel free to comment about whatever comes to mind when reading my posts.

I appreciate each comment and will always comment back.

Friday, January 15, 2010

The Frustrations of Living with Fibromyalgia

I wasn't planning to post again before we left for vacation but yesterday I experienced a small setback with my fibromyalgia and it's times like this that frustrate me more than others.

I am not always sure whether it's the fibromyalgia or other problems I have with my neck and back, but either way, they can certainly get in the way sometimes.

Yesterday I sat in the hair salon for 3 hours. I knew when I made the appt. (something you learn when living with fibromyalgia) that I shouldn't have made it so close to the time we were leaving town, but the stylist who cuts my hair wasn't going to be in that week except for yesterday. Anyway, this is a fairly new salon for me and she was still trying to understand what it was I wanted done with my hair, so that took quite a bit of extra time(in the chair).

When she was putting the highlights in my hair she kept telling me to put my head back and then she was putting unusual pressure on my neck and now I am paying for it.

Last night I could tell things weren't right. I don't know if you experience this or not but you can just tell that either your back is on the verge of "going out" or something's going to give real soon.
I felt a pull from my lower right side of my back all the way up my neck into the base of my skull. Nothing real major, but from experience I knew to treat it carefully so I used my electrode machine on it as well as a heating pad for a while, then did my stretching exercises very carefully.

This morning I wake up and now I am trying to decide if I should make an emergency appt. with my chiropractor or wait and see what happens today.

As I have mentioned before, for me, the sitting too long is a killer especially in a hard chair. Having sat for 3 hours in the salon chair was a definite mistake and now I am looking at around 3 1/2-4 hours of traveling in a car.

If I weren't going on vacation I wouldn't stress this as I have the resources available to me here at home if things don't get better, but when you are in the middle of the ocean you don't have a lot of choices.

I would love to know if anyone else ever experiences a sudden kick up of their fibromyalgia and what triggers it for you.

Living with fibromyalgia certainly changes everything. You get so used to working around it you don't really think too much about it until something like this happens. Normal people don't have to worry about sitting in a salon chair for too long, nor do they suffer after affects from holding their neck a certain way.

One time I had such severe problems smack in the middle of a cruise that my husband and I spent all day in one of the ports (fortunately it was a U.S. port) looking for a chiropractor that would take me at the last minute.

I did find one eventually, but that is a story in itself.

Tuesday, January 12, 2010

Heading Out on a Cruise

I am looking forward to the cruise my husband and I have planned and we leave on Friday. I have spent all day getting everything ready to pack. My mattress and pillows will be ready to go. LOL

We are traveling to Miami so we plan to stay overnight and have a fresh start in the morning. I also gives us one more day of vacation!!

One thing I always enjoy on most cruises, aside from the obvious, is the rocking of the ship when you sleep. I wish I could bottle that and bring it home. Maybe it's because I am a fidgety sort or maybe it feels like it did when I was a baby, I don't know, but whatever it is I sleep better on a cruise ship than any other time.

Our last cruise was to the Bahamas so the ships don't go far enough away to warrant fast speeds so you never get that rocking motion, and I seriously missed that part.

Cruising has become one of our favorite kinds of vacations because we don't have to take a plane and we don't have to stay in those awful hotel beds for a week (which are too hard for me). We always get lots of walking in at each port and that really helps me with the fibromyalgia. Sitting day in and day out traveling is not fun for me so roadtrips are not on my agenda.

I will be posting pictures on my blog Chris' Comments if you want to see some of our trip.

Friday, January 8, 2010

Positive Attitude Pays Off

Keeping a positive attitude about life certainly has helped me in dealing with fibromyalgia. Just like stress can enhance the pain, a positive approach to your life can help to minimize it.

I try to have a plan for each day and never make the list so long that I fail before I start. I have had a mosaic business online now for a little over a year and recently opened 2 new shops so I could easily overwhelm myself and plan too much, but I have learned that when I do that I usually struggle with more pain just before bedtime.

I can't say enough about the correlation of stress and fibromyalgia. If you have any control over the stresses in your life it would behoove you to try and work it out. Don't take on too much and don't feel you have to say yes every time someone asks for something. This can seriously upset your positive attitude. Taking on too much isn't healthy for anyone, but especially fibromyalgia sufferers because it already takes extra energy from your body when you are in constant pain and can zap your strength rapidly.

It took me years to learn to say no when someone needed a volunteer or asked me to do something for them. I am telling you from experience that it is a much less stressful life if you only do the things you really "want" to do and save the other things for other people. I do realize there are things in life that we can't avoid, but that is not what I am talking about here.

There will be days when you feel worse than other days (that is a known fact with fibromyalgia patients) and when those times come just remember that it won't last and give yourself a break. Try to take it easy on those days if you can and rebuild your strength. I think we learn that more and more as we grow older because there are other "parts" that don't work as well as they used to so we have figured out ways to work around it.

When we have a positive attitude about our lives it gives us reason to press on. I truly believe that every situation that life throws us is an opportunity to learn something. Life really is all about the journey, not the end result.

Thursday, January 7, 2010

Tips for Traveling with Fibromyalgia

One of the reasons fibromyalgia is so difficult to diagnose is due to the wide variety of symptoms from one patient to the another, but nearly everyone who has it will probably tell you that they have a hard time when it comes to traveling. This could be anything from riding for long hours in a car to the uncomfortable beds in a hotel or guest room.

My husband and I love to travel and our favorite thing is cruising. One of the reasons we moved to Florida was because we could eliminate the long plane ride, not to mention the expense.

For me it's all about making the bed comfortable. If I don't have a good night's sleep then I won't get the most out of my vacation. Generally the beds are too hard for me and if I can get to sleep at all I usually wake up several times because I am aching all over or I can't sleep in much past 6a.m. because I just hurt too much to lie there.

My remedy was to purchase a twin size memory foam pad that I roll up and stick into the top part of my suitcase. It goes everywhere I go as well as at least one, if not both, of my bed pillows.
I have a special solid foam pillow for my head and a body pillow that takes the pressure off my spine when I lean against it.

Once you get used to remaking the bed every time you stay in a ship's cabin or hotel it's really not a big deal. I leave it on for the duration of my stay and the cleaning staff just works around it. Granted, I don't know what I would do if I had to use an airplane since they charge for every bag, but if mama ain't happy. . .

Another little tip I use is to carry around a little decorative pill holder with me all the time. I keep one in each of the everyday purses I use so as not to ever be without. It has my pain and allergy pills as well as some tylenol. If you find that you change your purse with different outfits on your travels it saves time to have this done in advance.

My sister-in-law has a severe case of fibromyalgia. She has neck pain that is so bad she can't turn her head to the left very well so I always sit to the right of her when we are together. She also has problems (unrelated to fibro) with her lower spine so she always carts around her pillows and back pads. We make quite a pair when the four of us travel together. Our husbands don't even bother to comment on all our gear.

Since I can't sit for long periods of time, my husband and I always check out the rest areas ahead of time for any car trips. Most of the cruise ports are in southern Florida so we have several hours in the car, but the stops along the way where I can walk around for 15 minutes or more is the only way I could survive it. When I start to really hurt I can barely wait to get up and out of the car and stopping at a gas station and just standing around for the few minutes it takes to gas up is not enough for me. Fortunately my husband is very good about stopping and not complaining and for that I am thankful.

As I mentioned before, fibromyalgia is a broad term for the various muscle aches and pains we experience so there is no list of do's and don't's. You may have to make some adjustments when you travel to get the most out of your experience.

If you have some travel tips you use, please leave a comment and let us know.

Tuesday, January 5, 2010

Does Fibromyalgia Exist? Part 2

As soon as I got home from Arizona I made an appointment with my doctor to get an MRI. I had already done all the x-rays so this was my last hope at finding out what in the world was going on. I have never been in a car accident nor have I ever fallen hard so I couldn't figure out why I was having so many problems with my back, sciatic nerve and neck.

To make a long story shorter, my doctor (who is no longer my doctor) placed the wrong order for the MRI and the technician took the pictures my hip rather than my lower back.  It took all I had to get through the 45 minutes doing the first one as I also suffer from panic attacks and if anything was going to give me a panic attack it was someone telling me I had to lay on a hard metal table right on my sciatic nerve with no pain meds for 45 minutes and not move so much as an eyelash.

Needless to say, I found another doctor and she immediately suspected I suffered from fibromyalgia and set up an appt. with a rheumatologist. At this point I was still very skeptical that I had fibro as I didn't really have the kind of symptoms I saw in some of my friends who have it. I didn't think I had any tender points at all.
The first thing the rheumatologist did was squeeze those "fibro tender spots"  and I about went through the roof with the pain. She told me that half her patients suffer from fibro in one form or another and that it doesn't generally worsen in time, which was a good thing.  She also informed me that there is no known reason for it's occurance and that the studies are still very new.

Before I left her office she had scheduled me for PT for 3x a week for 2 months. It was the best thing I ever did.  I learned so much about how the muscles work and why it is important to keep it up.

When I think back now to all those times I have been misdiagnosed and all the paces I was put through it makes me very angry.  That is one of the primary reasons I chose to do this blog.  I am hoping others will get the information they need and to find the right doctor. I am hoping people will comment with their stories so that others can learn from their experiences.

I have seen a total of 4 chiropractors, 3 doctors and one physical therapist before anyone diagnosed me correctly. I have had countless x-rays and one MRI and ten years or more of my life taken away because of misdiagnosis. It seriously affected where I went from restaurants to traveling because I couldn't sit on a hard surface for more than about 15 minutes.

I am by no means saying that every ache of the muscle means fibromyalgia, but if you have never had any severe injuries and you are experiencing chronic muscle aches and pains you may want to see a rheumatologist.

My mother passed away on October 8th of 2006 and my father a little more than a month later on November 28th. I wish I would have had the correct information about this illness prior to that time as I would have been in much better shape and could have stayed with them until the end.

Does Fibromyalgia Exist?

Does fibromyalgia exist?

Yes, I would have to say that it does exist and I am living proof of that. I was officially diagnosed with fibromyalgia in the spring of 2007 by a rheumatologist, however it was quite a journey to finally come to this conclusion.

Here is my story:

I have had some issues with lower back pain and my sciatic nerve for some time and had been seeing a chiropractor for nearly 10 years. I would have bouts of pretty intense pain that would take several visits to finally go away, but for the most part, not life altering. I took ibuprophen and figured I was just worn down from too much stress in my life and not enough exercise. It wasn't until the year 2006 that everything started going downhill. Both my mother and my father passed away that year and the stress was at an all time high.

My father was in a nursing home due to failing health. He had been on dialysis 3 times a week for 3 years and also had been in and out of the hospital with heart problems. He and my mother no longer lived together and hadn't for nearly 22 years so he was on one side of town and my mother was on the other. They still remained close and my mother continued to make sure he had the proper attention he needed in the nursing home.

My mother was diagnosed with stage 3 ovarian cancer in the spring of 2006 and just a few months later my two sisters and I began to make trips to Arizona to stay with her and to check in with my dad and the nursing staff to be sure he was being cared for as my mom could no longer do this.

During the last month of my mother's life my sister and I were taking care of her round the clock at her home. My other sister had to get back to Colorado so as not to lose her job. We had moved the "hospital" bed into her living room so that we could keep constant watch over her. It was stressful, it was emotionally draining, and it was physically exhausting.

On top of that my father was getting weaker and weaker and could no longer use the phone or get up and eat with the others. He really wasn't even coherant enough to fully understand that my mom was dying. It was heartbreaking to see him in such a state and not be able to do more for him like we were doing for my mom.

I remember waking up each morning in so much pain from sleeping in the guest bed that I would be in tears. It's terrible to confess, but I would pray my mom would stay asleep long enough for my meds to kick in so that I could help her. I would tiptoe out to grab a cup of coffee and my medications and just sit on the back porch waiting for them to take affect.

I had no idea I had fibro but I knew something was terribly wrong as the tasks I was performing, even though they were tiring, did not warrant the pain I would feel the next day. It felt like a truck had run over me in the mornings. I had even gone to the expense of buying several layers of the memory foam hoping to make the bed more comfortable to sleep in and not be in such pain upon awakening. I was seeing a chiropractor twice a week just to stay upright. The stress to care for both my mom and my dad as well as get the house ready for sale was completely overwhelming not just mentally but physically too.

It got so bad after several weeks that I had to go home. I could no longer function and I was taking so many pain meds that I couldn't stay awake, yet I couldn't sleep. It was a total nightmare.

My decision to leave was one of the most difficult choices I have ever made in my life. I cannot tell you how gut wrenching it was to say my final goodbye to my mom and my dad but I knew that I was just getting worse and worse and my sister was doing more and more. We finally called my older sister to come back and help and the very next day I was on a plane home.

I fully believe the amount of stress that was in my life at that time in addition to the already stressful life I had is what brought about my fibromyalgia.

I know the professionals say there is no known reason and that the degree each person experiences is different, but I know first hand that high stress plays a significant role because the more stress I have, the worse the fibro is.

I will continue my story in part 2 on my blog. I will tell you what brought about the diagnosis as well as some information I received from the rheumatologist and the physical therapist.

I want and encourage you to comment and tell me your story or to add to anything I have written. I am not a professional. I am a just a woman living my life with fibromyalgia.