Life After Fibromyalgia
FMS, CFS, PTSD, and N-SAN-I-TE
The last thing I ever wanted to be was one of those people with a bunch of letters defining who they are and what they can do. Though I did always think PhD had a nice ring to it, instead at the age of 32 I was diagnosed with Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS) and Post Traumatic Stress Disorder (PTSD).
Then the N-SAN-I-TE began.
Having Fibromyalgia isn't quite the end of the world, but you can see it from here sometimes.
There are good days and bad, and one thing you learn early on is reduce stress.. The more stress you are under, the more humor you need, some days I need an IV.
There is no cure, and very few options in the way of treatment. Many doctors don't believe it exists at all. Yet through my diagnosis I have found peace in my life.
A personal lens about the struggles and triumphs of living with Fibromyalgia.
In Spring of 2005 I went to work like any other day. I started feeling funny, sort of wobbly and my hands were shaking. By the end of the day I was unable to walk without supporting myself on the counter. My legs felt like I had just run a marathon.
The condition slowly worsened, leaving me stuck in bed or relying on a cane for nearly four months.
The doctor told me it was stress. I was under a huge amount of stress at the time, but I refused to believe that stress could cause the symptoms I was having. I couldn't keep food down, my hair was falling out, and I kept getting hives. I had no sense of balance, and when I closed my eyes I fell forward.
I saw doctor after doctor, and each one had a different idea of what was wrong with me. I waited almost a year to see a local Rheumatologist, who then poked me a few times and said there was nothing wrong with me, I just needed to lose weight and get a better bra. I wasn't impressed.
How my bra has anything to do with being unable to walk is beyond me. One doctor was certain it was multiple sclerosis, but they found no lesions on my brain. Another doctor thought it was lupus, but tests ruled that out.
There were some days when I had to use a wheelchair just to get through the store. Part of it is the muscle fatigue, and part of it is loss of equilibrium, I developed severe vertigo and I fall a lot, I tend to have nasty bruises and strange injuries more often than not. I'm a clutz on overdrive some days.
I was blessed to have my grandmother by my side through all of this.
I had planned on taking care of my grandmother when she got older, and instead she was driving me to appointments, and patiently holding the door open for me while I shuffled my way into the doctors office, turtles and snails passing me on the way in. Somehow I saw this the other way around. It was nothing short of humiliating.
Even worse, some people hinted that I might be faking my illness, and that I just wasn't trying hard enough. My husband was one of them until he really understood my condition.
There were many times that I just wanted to give up, my whole body seemed to hurt and nobody seemed to be able to offer me any hope.
It took months, and many, many tests to finally get a diagnosis... Fibromyalgia, aka myofascial pain, sometimes known as chronic fatigue syndrome.
Personal experience with fibromyalgia.
Do you or does someone you know have fibromyalgia?
What it is...
Fibromyalgia is categorized as a syndrome rather than a disease, meaning it is not one symptom but a cluster of wide ranging symptoms. The two main symptoms are muscle pain and stiffness coupled with chronic fatigue. It really affects nearly every part of your body.
Your body lacks the ability to produce energy properly, so it tends to rob energy from the non-life supporting systems. Hair, nails, muscles. Even small tasks like mopping the floor can leave you fatigued for hours.
According to ChronicFatigue.about.com
General Fibromyalgia Symptoms Include:
* Delayed reactions to physical exertion or stressful events
* Other family members with fibromyalgia (genetic predisposition)
* Unexplained weight gain or loss
* Cravings for carbohydrate and chocolate
* Headaches & migraines
Muscle & Tissue-Related Fibromyalgia Symptoms
* Morning stiffness
* Muscle twitches
* Diffuse swelling
* Fibrocystic (lumpy, tender) breasts (as an overlapping condition)
Sinus & Allergy-Related Fibromyalgia Symptoms
* Post nasal drip
* Runny nose
* Mold & yeast sensitivity
* Shortness of breath
* Earaches & itchy ears
* Ringing ears (tinitis)
* Thick secretions
Sleep-Related Fibromyalgia Symptoms
* Light and/or broken sleep pattern with unrefreshing sleep
* Sleep starts (falling sensations)
* Twitchy muscles at night
* Teeth grinding (bruxism)
Reproductive Fibromyalgia Symptoms
* Menstrual problems
* PMS (as an overlapping condition)
* Loss of libido
Abdominal & Excretory Fibromyalgia Symptoms
* Bloating & nausea
* Abdominal cramps
* Pelvic pain
* Irritable bowel syndrome (as an overlapping condition)
* Urinary frequency
Cognitive (fibrofog) Fibromyalgia Symptoms
* Difficulty speaking known words
* Directional disorientation
* Loss of ability to distinguish some shades of colors
* Short-term memory impairment
* Trouble concentrating
* Staring into space before brain "kicks in"
* Inability to recognize familiar surroundings
Sensory Fibromyalgia Symptoms
* Sensitivity to odors
* Sensitivity to pressure changes, temperature & humidity
* Sensitivity to light
* Night driving difficulty
* Sensory overload
* Paresthesias in the upper limbs(tingling or burning sensations)
Emotional Fibromyalgia Symptoms
* Panic attacks
* Depression (as an overlapping condition)
* Tendency to cry easily
* Free-floating anxiety (not associated with situation or object)
* Mood swings
* Unaccountable irritability
Heart-Related Fibromyalgia Symptoms
* Mitral valve prolapse (as an overlapping condition)
* Rapid, fluttery, irregular heartbeat
* Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
Skin, Hair & Nail-Related Fibromyalgia Symptoms
* Pronounced nail ridges
* Nails that curve under
* Mottled skin
* Bruising or scaring easily
* Hair loss (temporary)
* Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)
Miscellaneous Fibromyalgia Symptoms
* Nose bleeds
What is it really like to live with fibromyalgia?
Bad days can be really bad. Usually a flare happens after a major upset or a series of smaller ones. Sometimes they seem to happen for no reason at all though. They can last anywhere from a day to several weeks. If you don't take care to control them, meaning TAKE CARE OF YOURSELF those weeks can stretch out for months.
There will be times when everything hurts, and you have to prepare for those days during the times you are feeling well. I have collections of "happy thoughts" everywhere. Where your mind goes during a flare, your body will follow. Depression tends to come along with the flares so be on your guard.
Visualization is a big one for me. It seemed silly at first, but once I got used to it I found that I really could control my pain with my mind, at least to some degree. It really doesn't matter which visualization I use, the main thing that works is using my mind to force the pain out of my body. Sometimes I visualize light surrounding the pain and swallowing it, sometimes I capture it and push it away from me, and sometimes I use my mind to compress the pain into a smaller and smaller portion of my body.
Along with visualization comes relaxation. When you are in pain, your muscles can become very tense. Just one or two things that relax you probably aren't going to be enough. I have a list of favorite relaxation activities, baths, reading, drawing, watching movies... I even have a list of favorite books and movies that put me into a particular mood.
During a flare it can become very easy to start feeling sorry for yourself. Don't go there. Negative thoughts are a downward spiral. Once you start thinking them you will find them coming more and more often and after awhile it gets very hard to stop them. So catch them as early as you can and then turn your attention towards something on your happy list.
Remember that it doesn't last. This is going to be your biggest defeating thought if you allow it to take root. If you start focusing on how bad it is, you tend to forget that it isn't always that bad. It passes, but it will pass a lot faster if you remember the good times and look forward to the next round. Don't get mired in it, and don't let it defeat you.
I was fairly healthy before the symptoms of fibromyalgia made themselves at home in my body. I had never even had the flu until I was in my twenties. That all changed fairly quickly.
They are still trying to figure out what Fibromyalgia is, what causes it, and how to treat it, but keeping up on the latest news helps me manage my condition.
- Alltop - Top Fibromyalgia News
Fibromyaglia news and headlines from around the web.
Living With Fibromyalgia
That is the clinical list, but living with it is something like having the flu several days a week, at least for me. The body aches, the muscle tremors, and even the stomach troubles come and go.
There are good days, and there are bad days but most lie somewhere in between.
It is very hard to live inside of a body that is changing its mind every day. Some days I can eat anything, others even mild foods refuse to stay down. Sometimes I will literally be leaving a restaurant and throw up for no real reason.
Yesterday I could walk two miles, today I can't even make it to the corner. Sometimes I have to use a cane, most times I don't. I've had to point to pictures on menus just to order a meal because I couldn't say it, my mouth could not form the words.
Sometimes when it is really bad I get muscle tremors that are almost like seizures. My hands clench, my muscles tense, and I shake all over. My mind refuses to work, I can't find words, I can read something ten times and not remember what it was as soon as I have finished.
There are times when my husband throws his arm over me in the middle of the night and just that small amount of pressure is excruciating. I can't wear clothes that have elastic in them, the pressure hurts too much.
I have poor tolerance to both heat and cold, which is the main reason I rarely leave the house. Secondary is that even a trip to the store can be an exhausting event for me. I can't drive very well anymore, medications and vertigo make it difficult. So I go days, and sometimes weeks without stepping foot outside of my house.
Then there are days when I am physically normal. It's hard to tell there is anything wrong with me. On the good days I run into people who make remarks like, "I see you don't have your cane today." Or "You don't look sick."
No, I don't always look sick, but sometimes I am very, very sick.
There is a large part of it that is humiliating for me, I have always been a very independent person. There have been times when I was having tremors that waitresses refused to look at me, they talk to my husband instead. I don't like to burden anyone, and I hate having to have other people do things for me. It goes against everything I believe in, but I am learning.
I'm still stubborn and independent when I can be. I still refuse to get a handicapped parking permit, even though I qualify. I refuse to go on social security. Words are something that are sort of a superstition with me, deep down I believe that labeling myself as handicapped will settle me into the position of actually being disabled full time. I am a born fighter. I refuse to give up. I can and will take care of myself as long as I can.
Thankfully the really bad times are fairly rare, they aren't fun to get through but somehow coming out of a bad fibro flare gives me a new outlook on the rest of my life. I want to participate in it more than I did when I got sick. I am willing to jump in and do things that I never dreamed of doing before. I've learned to multi-task as much as possible, and to conserve my energy for the things that really matter in life.
If nothing else, Fibromyalgia has taught me balance. Living with fibromyalgia is living with extremes that you can't always control, but you learn to balance it out in so many other ways. You learn to work when you can, but you also learn to rest when you need to. You learn to enjoy the good things in life, but to moderate them. You learn to spend more time and energy on the people you love than on the people who don't really matter. You learn to seek balance when you can.
Fibromyalgia can't be cured yet, but it can be managed most of the time it is just a matter of maintaining good health, listening to my body, and being aware of the signals it is sending me. I try to stay off of the medications as much as possible, to watch what I eat, and force myself to exercise when I can.
Don't just cope with fibromyalgia, learn to LIVE with it.
What does work...
It is a process of experimentation discovering what does and does not work for you. Many of the medications may work on one symptom, but the side effects aren't always pleasant. So I have tried to treat my symptoms without medications as much as possible.
* Hot baths - on really bad days add a cup of epsom salts and soak as long as you can stand it.
* Watch your diet. I've heard different things from different people so it takes a lot of personalization. For me, when I am in a bad phase, carbohydrates make me worse, especially breads.
* Rest when you are tired. It is tempting to push it on a good day, but don't. We tend to have a delayed reaction to overexertion, and one good day overdone can lead to three days or more in bed.
* Keep an eye out for energy vampires and avoid them at all costs. If a friendship or relationship is draining you dry, limit your exposure.
* Check your priorities often. You only have a limited amount of energy, so budget it wisely. Make sure you are spending your time where it means the most.
* Invest in cookbooks that focus on meals with low prep time, and try to do as much of the prep as possible sitting down. You need to eat healthy but don't wear yourself out. Sign up for the Dinner Made Easy newsletter from Betty Crocker
* Avoid negative thinking. If you sit around thinking about how much your body hurts, it only hurts worse. Complaining actually draws you back inside of yourself, it really and truly does. Try to keep your mind busy with happier thoughts whenever possible.
R. Paul St. Amand
Guaifenesin Therapy. It takes a lot of work, but it is worth it.
This method of controlling Fibromyalgia really does help, and it is available over the counter.
Fibromyalgia, PTSD, and Abuse
There is no cure for fibromyalgia, in fact there are many doctors who do not believe it exists at all. There are no real treatments, just a lot of medications that treat various symptoms. I could make the average pharmacy look understocked at times. I refuse to take most of them because they just make me feel worse.
There has been some research linking Fibromyalgia with a history of abuse, and Post Traumatic Stress Disorder. The theory behind it is that too many years spent looking over your shoulder and walking on egg shells causes a sort of permanent muscle tension.
Other researchers have denied the link, but in my case it seem that was probably the root cause. Most of the time my muscles are rock hard, you can't even pinch me. I am totally incapable of relaxing like a normal person, but I am learning.
Stress plays a major role in my symptoms, something as simple as a small argument with my husband or an unhappy bit of news can end with several days of recovery. I don't answer the phone at all. I have had to learn to head most of my stress off at the pass.
Removing stressful people from my life was a huge factor for me. I had to limit my contact with some, cut others out totally and a there were a few that I just had to pretend no longer existed at all.
I was always trying to save the world, getting involved in other peoples problems, trying to save friends marriages. That was the first thing that had to go. I had to find a balance in my life between helping others and taking care of myself.
You learn to listen very closely to your body, if you are tired you rest, if you are hungry you eat. Schedules for me pretty much went out the window. I try not to make too many commitments ahead of time because I wont know if I can handle it until the time comes.
Lessons I've learned from Fibromyalgia
While life is certainly interesting, never sure which body you will have and for how long. Having FMS actually teaches you a lot about yourself, and brings a certain focus to your life.
I have four kids, three dogs, several jobs, and a husband to share my life with. My life can get downright insane at times. Sometimes everything comes at me all at once, and those are the days I need that IV.
Everyone thinks they know how to cure me, if I just tried a little harder, ignored the pain, or joined their multi-level I could be free. I swear health and wellness MLM people see me coming and salivate.
It isn't all bad though... not by a long shot.
I struggled with keeping up with all of the super-moms I knew for a long time. They seemed to be able to do everything, and do it well. Once you accept that you can't do everything, you are free to focus on what you can do.
I'm not Martha Stewart and never will be, but that isn't a bad thing. In struggling to accept my illness, I finally began to accept myself.
Physically, I can't keep up with those super moms, but I can make up for it by loving and caring for my children in other ways. I will never be a super wife either, but I have a husband who loves me, fibro and all and I can be a good enough wife for him.
I may not be the best at a lot of things, but I can be good enough, and sometimes that's all you need.
You learn to focus not on what you can't do, but what you can. There are a lot of places I can't fit in, but there are a lot of places I can. I guess in the long run you become more focused on balance than you may have been otherwise.
Things that would have left me livid in the past, now get about as much attention as a mosquito bite. Deal with it and move on. Keep your focus on the good stuff and let the bad stuff go.
I listen to and live for comedy and peace. The Beatles and I are constant companions. Most movies I watch are comedy. I devour stand-up, and thank the stars for Monty Python. More often than not I am either listening to comedy or a musical. Singing always helps me feel better, even in wal-mart at the top of my lungs.
I shy away from negative people pretty quickly, sometimes I'm afraid they'll think I'm rude, but I can almost feel them sucking the energy right out of me. Instead I've learned to surround myself with good and positive people.
I have been blessed in abundance in that respect. I have a wonderfully supportive family, a grandmother I can't keep up with, kids who would do anything for me, a husband who loves me and so many wonderful friends online and off.
I still tend to take on too many projects at once, but after awhile you learn. I was almost incapable of saying no, and now I can say it and not feel bad about it.
Sometimes I wonder...
Perhaps fibromyalgia came into my life not as a curse, but as a blessing. Maybe it was my body's way of balancing me out whether I liked it or not. I certainly needed it.
We all face hardships in life, we all have our own limitations of one sort of another. My problems are no better or worse than the problems of those around me. Just like I have good days and bad days physically, I have good days and bad days in other ways.
We all do. Now, when the bad days come, I allow myself to rest and focus on the good days that I know are just around the corner. That's not such a bad way to live when you really think about it.
The Serenity Prayer
I learned the serenity prayer many years ago, in fact the first time I read it I thought it was meant to be a joke. Now I fully understand what it means.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Be Gentle with Us
I wanted to put a personal spin on the face of fibromyalgia. We really aren't just a diagnosis, a bunch of letters, or people who make a big deal out of small pains.
We are normal people trying to live normal lives. Living with chronic pain isn't easy, but it can be done. It takes a lot of positive thinking, a great deal of balancing out roles, and a new awareness of your mind and body.
It really does take a lot of humor as well. Lucky for me that is one thing I am good at, I can laugh at myself quite easily.
If you know someone with fibromyalgia, offer your support, not your pity or multi-levels. They really will appreciate it.
In the immortal words of John, Paul, George and Ringo...
"All you need is love..."
Do you know someone with Fibromyalgia?
Yes, I do.
Fibromyalgia Lenses - FMS on Squidoo
- Living with Fibromyalgia
This lens is about living with fibromyalgia. It includes resources on the symptoms of fibromyalgia, medications that can be helpful, types of exercise, and other related issues. I personally have had fibromyalgia for the past 20 years. It has certain
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