Tag Archives: personal fibro stories

Fibro Warrior of the Week (#47)

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Location: Bayonne, New Jersey, USA

Facebook: Lynn Crimaldi

Mantra: Love all, trust a few, do wrong to none.—William Shakespeare

Lynn Crimaldi wrote a piece for our Fibro Daily Facebook page called Fibromyalgia……Who are you??? which received an overwhelmingly positive response. (We also featured it here on the site!) We are very pleased to have her as our 47th Fibro Warrior of the Week! In addition to writing, Lynn is a mother of two boys, designs jewelry, and designs spectacular nail creations for her friends. Read on to find out more about the woman who created the piece so many of you love…


FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.

 

Lynn: My name is Lynn Crimaldi. I have lived in New Jersey all my forty-four years of life. I am a single mom, with two beautiful boys, David who is twelve years old and Christopher who is almost ten. my-jewelry-098-300x225My youngest, Christopher, has autism. He was diagnosed at age two. Because of my son’s disability, as well as having immune system issues, he is on a home program which has me staying home with him. I do my best to work from home doing nails and making homemade jewelry. I strive through the chronic pain and do my best to care for my young boys and continue to work, as not to loose myself to this illness. Some days I loose, but the days I win, I create beautiful jewelry and make someone else’s nails very beautiful. My boys keep me going, truly. They are my heart. Continue reading

Obama care? Update

It has been a rather upsetting  month for me. It began last month with my Pain Doctor telling me that after 6 months of trying his office was still not authorized to take my insurance. I have been his patient for over 3 years but he decided to leave the Hospital Clinic which was closing soon and start his own pain clinic.

My primary care doctor was searching for a replacement for me but the earliest appointment was in April and not guaranteed, furthermore he would not write my pain medications, leaving me without my medications and having to go through withdrawal. Continue reading

Obama Care, Just what we all needed, right?

I don’t know if I ever mentioned that I live in Massachusetts, USA. I am disabled and on a very limited income but I have been fortunate that with Mitt Romney signing in our comprehensive health care insurance system, I was able to obtain a quality plan for a very modest payment. This plan has paid for all of my past surgeries, tests, doctors, pharmacies during the last 6 years. This included my c2-c5 fusion at a prestigious hospital done by a top surgeon with little wait time. My co-pays have been as high as $5.00 for brand name drugs and doctor visits. A plan as good as any major health provider!
Continue reading

Were we hacked?

ON March 12th 2012 every post in this blog was deleted! Why, How? No one seems to know. I contacted my hosting company and they said nothing there has changed. Hmm  other than their name, billing company, mysql database time up, security of the web sites I host, by that i mean I was unable to get into any sites I have created and maintain for others!!

Those problems were fixed but what happened to my little fibro blog? Did I do it? maybe the fog got me and I accidentally highlighted all my posts and hit delete! naw it cant be done, Continue reading

FM CONFERENCE AND PAMPERS 2011 ANOTHER BIG HIT

By Jeanne Hambleton ©
The Fibromyalgia Conference and Pamper Weekend in April on the south coast was another great success inspite of cancellations by the Americans. Described as a ‘coalition’ conference many Group Leaders played a major part in collecting stage payments at group meetings over several months, to enable delegates to come to conference. Without the support of those Leaders, many living on benefits would have been unable to come. Others found their local Rotary Club willing to help fund their visit to the conference. So many people pulled together to make it happen and during the ‘fond farewell’ it was clear that they all enjoyed themselves. Continue reading

Treating Fibromyalgia with Massage Therapy

by Jordan Rocksmith

Life with fibromyalgia has not been easy for me. I have one of the rare cases that strikes juveniles, so I have felt wiped out and in pain since before I started my freshman year of high school. I was unable to actively start seeking treatment until I had graduated–when my family had health insurance.

But since then, I have vigorously pursued various avenues of treatment to help me enjoy a higher quality of life. That is why I started investigating the benefits of massage therapy, and I have found that with a monthly massages in San Francisco, I lower my stress level and experience much less pain than I would without one.


If you suffer from this debilitating disease, then massage therapy may be one way to take your life back. Allow me to give a brief explanation on how this may work for you.
Continue reading

Doc’s Fibromyalgia Story Part 2

This entry is part of a series, docs story»

Many things have been going on since I last updated my post. After7 months or so the Imipramine stopped working for my fibro pain. I hate when that happens, you just get use to something and bam, you have to start over.
We decided to give Cymbalta a try. The doctor more than me, I have heard many bad stories about Cymbalta, but we are all different so I went along with trying it.

At 30 mg twice a day, the pain had lessened to a 4/5 but after a few months I was starting to get a little bitchy. The doc upped it to 60 mg twice a day and the feeling bitchy went away but I was not feeling anything but my pain. I was numb, a zombie …

After fighting so hard to get the insurance to pay for the Cymbalta, I now new I would have to stop using it and try again..

In the mean time, my blood sugar levels, which had been fine for years are now running very high, My doctor has added medication, pills for now to help control the glucose levels and I cant seem to shake this extra 30 lbs I am carrying

On the Fibro front, I am now taking the newest medication, Savella 50mg twice daily, this med has been approved and used in Europe for 5 or more years, but it is new here in the States.

I must admit, the Fibro and Neuropathy pains are almost gone !!!!! My head is a lot clearer, and I feel like myself not some Zombie.. I get angry, I get happy.. this is good!

The Cymbalta required a withdrawal, that the makers do not admit to. I had to reduce the amount slowly to avoid the painful headaches and stomach aches. Then there is the brain zaps ! don’t know what else to call them, all of a sudden its like an electric shock in the brain, happens more when you twist your head or even your eyes! Well they are not as frequent now, It has been a month! that’s it for now!

Entries in this series:
  1. Docs Fibromyalgia Story
  2. Doc's Fibromyalgia Story Part 2
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A letter from the Knights of Fibromyalgia

written by Brady, aka PizzaMan242

Suddenly, in the middle of doing some small task, sharp shooting pains begin in your chest that start traveling down your arm and it is very hard to breathe. Your first thought is a heart attack. You go to the ER and they say you are fine, it is nothing. The next day or a week later it happens again. Again they say you are fine but this time they give you a referral to a psychiatrist. Now they think you are imagining the pain, yet you know it is very real. What do you do? There is always a psychological aspect to the experience of pain, but this does not necessarily mean that the source of the pain is rooted in the psyche.

What I have just described is a very common Fibromyalgia flare up. Yet they only look at you as if you have a screw loose. They do not even check to see if it is Fibromyalgia. They look at your heart and other physical problems that could cause this pain but find nothing. They could perform a simple pressure test to eliminate or confirm Fibromyalgia but you must first navigate a maze of other tests.

Doctors and others in the professional fields label us as depressive personalities and prescribe anti depressants, then are confused when they do not have the desired effect. Probably because at the root we are not depressed, yet. You begin to doubt the doctors and yourself. They say they cannot cure it, and they can only treat some of the symptoms with a limited degree of success.

Your chest still hurts, you can hardly breathe, your shoulders hurt and the pain is traveling down your arms to your hands. Your hands are slightly swollen and discolored, your fingers are numb, your legs are killing you and there is a burning sensation in them. The abdomen is sore to touch, the bowels are churning, and it feels as if you have been shot through the middle with a rocket. Then when we ask for something for the pain, because by now it has become a constant pain gnawing at your very being. Then they label you a drug addict and believe you are faking the pain to get drugs. Now they think we are just in it for the drugs and if they do give you something for the pain. Then the DEA starts watching your doctor’s prescriptions, making the doctor afraid to prescribe more potent medications.

What do we do then? We try to describe it for our doctors and they in turn tell us we are not active enough, we are depressed, so exercise and a mood change should straighten you out. You follow the doctor’s and therapist’s directions completely, yet when all these things are done you are still in pain only it has gotten worse. You are now almost begging for something to kill the pain. Instead you are given massage therapy, heat therapy and maybe if your lucky pool therapy. None of these will work. Only the pool therapy will give you temporary relief, with it’s blood warm waters and gentle exercises. Yet even this fails, you find yourself going into a flair as soon as your body cools down. At each different therapy you are greeted with the following. Oh no problem I have seen people come in here in wheelchairs and walk out on their own two feet. Wow, you think this must be the one. They have such high success rate, But sadly with each one we see an escalation of the pain. No matter how good the treatments feel, the effects are only temporary and your back in the same old routine of pain and exhaustion.

A simple pressure test on the back and shoulders will confirm the presence of an invisible serious illness called Fibromyalgia. Still, most sufferers go to many doctors and go for years without a diagnosis. Why?

We have to pay thousands of dollars we cannot afford for tests to eliminate other possibilities. Why does it take so long, everyone knows the test? Why can’t they confirm it? Are they afraid of us because they cannot cure us? Well are they?

For the medical community this disease is a mystery. No one knows what triggers it or where it is in the body, they have their theories but nothing conclusive. Many doctors refuse to believe that it exists since it lacks that evidence. Others believe but do not want to treat it because there is no clear answer. Yet they are the ones we must turn to and put our trust in, only to leave us just hanging. Why?

Again it is because they do not know the why, how, or where to begin. They only know that we are in pain and we tend not to exercise because it causes even greater pain. Nevertheless, we must exercise. So we do so we can still stand and walk, We know we must do that much, yet they want more so we try, why? Because that is what they tell us to do. Some even believe that the more we exercise the better the chance is to be cured. The only thing they have right is that we do need to exercise although it hurts, we just have to learn to pace at our own individual level. There is no cure or even hope of major relief.

Searching for someone we can get to help us turns into a full time job. Hundreds of dollars are spent on prescribed drugs and therapies that do not help. Sometimes they are damaging, causing side effects that build until we become intolerant of most drugs and even just over stretching a little one time, can set someone back for months.

No money is being spent to research a cure, and no panel has been formed to study the effects of fibromyalgia. It is almost as if we are Lepers, banned to living a nightmare existence from which there is no escape.

The pain wakes you every two hours through the night and the days are spent in a barely functional fog. You do not feel safe to drive and even the short ride to the doctor with a friend driving increases the pain. Then only when the overwhelming tiredness consumes you. It is the same as always, 3:00 o’clock in the morning. Only to sleep for 2-4 hours, more if your very lucky.

Fibromyalgia remains a very devastating but invisible disease. It is debilitating because when we try to do anything we are in fact hurting ourselves because our muscles cannot heal themselves. Instead we are risking triggering a flare up that could last a day or even a month. Some are bedridden by the effects of this disease. Unable to do the simplest of tasks. Some take the antidepressants and after years of taking them suddenly start thinking that suicide is in fact a really good option, and sadly some have taken that course. May their souls find peace.

Everyone says that you look fine. Your employer, if you are still able to work at all, questions why you can barely do anything and then implies that you are slacking on the duties you once could do without a problem.

How can something that cannot be seen or found in a x-ray or a blood test be so devastating? We do not know. We just know that we are in pain and no one wants to help. Those who are willing to try to help are few and far between. Even then we are forced to weed through the charlatans selling their Snake Oil Cures. That is how rare it is to find a doctor who really wants to try to understand and help you. Yet even he cannot cure you or even lessen your pain.

We who suffer from this disease wonder when somebody will take notice that there is not a few of us but millions. Yes, I said millions. They can treat some of us with a couple of Advil but there are those among us who take Morphine and it does not stop the pain. The medical community only sees the ones who are getting by taking Advil and walking for 30 minutes or more per day. Some of us cannot walk for 10 minutes without a break. Some are even worse.

You stand to lose your wife, husband, family, career and your home, because this disease does not allow you to function enough to take care of all these things, to protect them as you always did before.

Your friends do not want to be around someone who is constantly sick and cannot go out to do things. No single person could imagine the multitude of sordid symptoms, let alone millions of people from all over the country and world with identical symptoms. Surely no one would choose to live like this.

We call on you to help us draw attention to this. We are tired of being ignored, and watching those among us who we call friends deteriorate further and die, but not from Fibromyalgia. No, that is not the killer, it just makes you wish you were dead. No the drugs that we take have a cumulative effect so that we get diabetes, hypertension, kidney disease, all caused by taking the wrong drugs but they cannot tell us what the correct drugs are. Nor will they admit that the drugs you have been taking are the root cause to your more mundane problems.

Please do not let another one of us fall by the wayside because we are not a majority and Fibromyalgia is a little known disease that is “all in their head” until the devastating effects strike you personally.

Acute pain protects life, Chronic pain destroys it.” Always remember this.

We the Knights of Fibromyalgia stand before you and ask there be an accounting, a task has been set before you. Are you willing to pick up the sword and aid us in our fight for recognition.

Why do we call ourselves Knights, because like the Knights of old we too are given a formidable task. The task to finally gain recognition for our cause. Our swords are our words, our steeds are our computers as we spread our cause from one end of the globe to the other. We must not fail.
We are the Knights of Fibromyalgia!

Men with Fibro STEVE’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush

Here is some of what I have learned as a man from my own
experience with CFIDS/FMS, life, suffering and shame.

Who can know the pain and suffering one must endure?
When misunderstood by those who have no time,
to account for their own infirmity and lack of understanding.

There was One who bore all of our diseases, faults, shortcomings
and weaknesses. He understands. The One who was rejected,
so that we might know acceptance. Hated that we may be loved.
Reviled so we could be blessed. Had compassion for those who
murdered Him.

Pray for Mercy upon all those who would judge, having so far
been spared the pain themselves, knowing not what they inflict.
So fulfiling our own calling, that we might use that which was
meant for evil, rather to be turned back and used for good
instead. As One has already done for us in loving kindness.

This is why my loud cry is always for Grace!

Courtesy of Dominie Bush

Men with Fibro SCOTT’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush

Sometime during my mid teen years I began to have great difficulty sleeping. It would take me 1-2 hours or more to fall asleep. Waking up in the morning I felt as if I had not slept at all. I hated mornings. However, I was still able to function normally albeit I was ready to take a nap at any given moment. I finished high school a half-year early because I had already fulfilled the required number of credits for graduation. I enrolled in college and began my first semester in the spring of 1981. At this time I also took a job with a landscaping company to help pay for my college tuition. It was very hard manual labor. I would often go home too exhausted to eat and would simply plop down in bed, dirty clothes and all, and fall asleep. Mornings brought no relief from the fatigue yet I kept pressing on. Getting through college was extremely hard. Not because the academics were more difficult than they were for anyone else. It was the simple fact that I had great difficulty staying awake during class and while studying. I thought what I was experiencing was normal. I was to find out in later years that it was not.

With the Lord’s help and the strength that youth brings I was able to graduate from college. However, the fatigue would continue to plague me as I entered the workforce. I found I had the same problem at a corporate desk that I did at a classroom desk. I was becoming deeply depressed and it was at this point in my life that I began to entertain suicidal thoughts.

Please continue reading Scott’s story at www.skblades.net/fibro/fibro.html. Scott’s experience with insomnia is similar to mine – beginning in the mid-teen years. See www.fms-help.com/insomnia.htm. I once heard from a man in his 70′s who had not slept since he was 18 in boot camp! He said, “If you think boot camp is rough, try it without sleep!” He went on to have a life filled with bad health, physical suffering, surgeries, etc. Years later, he called to report that he had finally slept after he began taking an immune balancing powder. I have often wondered if the vaccinations he was given in boot camp damaged his immune function and the part of the brain that controls sleep. Or perhaps the stress of boot camp itself changed his brain function or chemicals. I hear from many more teens now who are developing insomnia, FMS and CFIDS. Wonder what’s going on? Could it be a virus, a mycoplasma infection, or too much modern day stress? More comments about kids and teens with FMS/CFIDS is at www.fms-help.com/teens.htm. After much stress in my life, my health collapsed in June of 1982 (literally overnight) when I was 30. I was diagnosed shortly thereafter with fibromyalgia (then called “fibrositis”). My story is at www.fms-help.com/fibro.htm. Fibromyalgia is an epidemic now – hindering and hurting people at every stage of life – all over the world! Still, doctors can’t seem to help us much. Many don’t “believe” in fibromyalgia, and the ones who do don’t understand it unless they have it themselves (assuming they can still practice while battling this disabling condition!) See my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm for some things I’ve learned as a fellow sufferer.

Courtesy of Domini Bush