Fibromyalgia, Chronic Myofascial Pain and CFIDS.
Inside Stories of People Living With The Dragon.
An FMS Community E-Book
Copyright (C) 2005
The Fibromyalgia Community.
All Rights Reserved.
This is not a book written by experts, or professionals. This is a
book written by those who live with Fibromyalgia,
Chronic Myofascial Pain, CFIDS and overlapping conditions. It is a book that tells what it
really means to wake
up each day. What it takes to make it through this day. It tells of sacrifice, losses,
support and hope.
This is not a book full of despair. It is a book full of
experiences, what we have learned and what we can
share with those who may be newly diagnosed and looking for a ray of hope. It is
stories of success, rebirth,
coping skills, finding new friends and all of the life altering experiences that go
hand in hand with living with
a chronic illness.
You may notice slight errors in the text, words misspelled..this is all part of having
Fibromyalgia and the fibrofog
that goes with it. These are real life accounts, as written by those living with a chronic
pain condition, in their own words.
Those who despair, hurt, thrive and survive despite the obstacles they encounter.
Read this book and know you are not alone. There is hope and support out there.
You may read stories that contain political opinions or
spiritual opinions. These are solely the opinions of the people who
submitted entries. The FMS Community does not endorse any one political agenda,
religion or lifestyle. The opinions expressed within are solely those of the authors who
submit a piece to the book.
Submit Your Story
Read Before submitting Your Story.
By submitting your story via this link, you give the FMS Community full copyright
permission to publish and use your submission. There is no remuneration for this
submission. Your submission may be distributed to those in need via this ebook and other
publications put out by the FMS Community. Your real name and/or email address will never
be published without your permission.. If you wish to have your
full name or contact information listed with your submission you must state this in your
submission in terms that make it clear you wish for us to list this information.
Index:
Care Provider experiences. Struggles and success stories in finding a caring doctor and those to stay away from.
Books, Websites and Other Items That Made A Difference in My Life.
Family Relationships and Chronic Illness.
Dating and Chronic Illness.
Sex and Chronic Illness.
Life As A Man With Fibromyalgia, CFIDS, CMP.
Disability; To File Or Not.
Attending School And Social Issues For Children And Young Adults
Spirituality and Chronic Illness.
I Can't Believe I Did That! Fad Treatments or Scams I Wasted My Money On.
That which is lost; Grieving for our former life.
Grief, I think we have all felt this emotion. The context of the word, that I was raised
with, and how I was trained to use the word "grieving" was mourning a lost loved
one or family pet. It was a stoic word with a socially acceptable definition on how
it was to be used.
I was totally unprepared for the feeling of grief I
experienced when my illness progressed so far I was forced to give up an 18 year career in
hospital management and employee advocacy. I knew I was sad. I knew my financial situation
changed drastically. But I had no tools to deal with the depth of feelings I experienced
or tried to deny.
What I did not know, was that I should take time to grieve,
adjust. I was trained to just suck it up and move on. I was A
woman. A woman with Children, pets and a mate. It was up to me to plan dinners, shop
for toilet paper and other household goods.
I had to plan the families social functions, be there to bandage boo boos, listen to
my families problems, do homework, mail bills, attend school functions, decorate for
holidays....I was trainedto handle all of this. I was never trained on how to take care of
myself.
Well, this illness, the multiple illnesses that I was
experiencing had never been included in my early training
on the use of grief, or guilt. Nowhere in my childhood upbringing had I been prepared for
this! I put on a brave face and grew more dependent on my husband for my well-being.
I was miserable and felt frozen in time, not sure why
I could not act, nor react or move on. I never realized how slowly my life had been taken
from me, a piece at a time.
One day I realized I could no longer play tennis or basketball,
hmmmm. Then I had to give up bike riding, dancing, breaking mules...then my 5 mile a day
walk. Next came bowling, late night bonfires with the family.
One by one my life's pleasures slipped away and my mind just let it go, but
never dealt with it.
I think the pivotal point was giving up my job, not just a mere
job, a career, one I worked and scraped and put in countless hours to achieve.
The loss of this job put me down, far down and even I could not see how far I was down,
how it was affecting my family.
I was paralyzed, unable to help my family deal with the changes and unable to formulate a
plan for my future.
Then, one day, after I had been out of work for about 9 months, we went
shopping. I needed a new pair of jeans and this seemed innocent enough. We
shopped, I found a pair that fit me just right. We walked to the checkout and put the
jeans on the counter, a perky 20 something clerk asked us if we "found everything
ok?" We said "Yes, thank you".
Then she asked "Will this be cash or charge?" I froze.
For the first time it hit me, I no longer had my own funds to buy my own clothes!!! My
husband reached for his wallet and said "Cash" and I broke into tears, right
there in the store.
A floodgate opened and I felt helpless, useless and not sure I
should stay and be a burden to my husband.
We fled the store and got in the car and talked I did not realize how
much I had bottled up inside.
All the thoughts I had pushed into the bottom of my mind and refused to deal with.
After a long, long tearful talk, my husband said something like,
"You realize you lost something big. It may not be a person in your life, but it was
a big part of you. You lost a job, a career, the friendships you make at work. You have
given up sports, volunteering and a lot of your social life. You need to
"GRIEVE"! This is a major loss for you and you are allowed to grieve, face it,
think it through, seek support take care of yourself"
This was the first time anyone gave me permission to grieve. It was not selfish at
all. I lost a lot and needed to grieve for it and then hopefully grow and move
on.
It was not easy, and I am not sure I could have done it if I did not
have much support. My husband, my mom and dad, and wonderful people I met in online
support groups.
I will not sit here and tell you it is easy. It is not a program you go
through and then life is all rosy. I went through many stages, stages such as you go
through when you lose a loved one. Despair, anger, guilt, hatred. But it helped and I was
able to move on and make some future plans, find out what else I was good at and able to
do at my new physical capacity.
I will also not sit here and say you will only go through it once. I
can go along for a year or so and then something triggers it all over again. Something in
the paper about a local handicapped persons troubles at work will send me into a tizzy, I
know I could help if I was just healthy enough to go back to work, this can send me into
the grief process again.
Missing my kids school play because the pain in my head and neck is so
bad I don't trust myself to drive a car,
can trigger a whole new level of grief.
But now I know a bit more and I know it is ok to grieve what I can not do, without
beating myself up. I am a better person
for it and I feel my quality of life is better than it could be if I just pull in and
refuse to deal with my emotions.
Allow yourself to grieve, please! You have given up jobs, social obligations,
clubs, volunteer duties, parenting duties
hobbies and health care for loved ones, the list is endless. Treat yourself as you would a
best friend in the
same position. You would help your friend grieve and work things out, you owe it to
yourself to do the same thing.
Yes, this is the same as getting permission to be self-indulgent. You need to
remember, feel what your
life will be without these things. You are given permission to cry, be angry, be snippy,
be sad, go over old
photos. It is a healthy and much needed thing to do. Then, and only then, can you relax
and think
of the future and what you can do.
I have since returned to an old love of mine, art. I never had time to create
when I was busy working. I find painting, drawing and carving something I can do when I
feel up to it and it allows me to make a bit of income. So when one door closed due to my
illness, another door opened. I can tell you, I enjoy creating every day better than
punching a time clock.
JK
Care Provider experiences.
As early as the age of 10, I experienced pain. Pain my family doctor could not
find a cause for. He ran test after test and nothing showed up. This was in the 1960's and
early 1970's. He tried to help me, he gave me a yucky green liquid called Donnatal for my
rib pain and back pain. As I grew up and went to work, I
saw doctor after doctor. I must have gone through 23 doctors. Each one would refer me to
yet another
specialist. The neurologist told me my pain could not be real, for my slipped disc would
cause pain on the left side of my body, I told them the pain was NOT on my left side, it
was all over. They patted me on the
head and gave me yet another referal.
They ran tests for arthritis, MS, Cancer, slipped discs,
ruptured discs. I had EMG's, EEG's, CAT Scans, MRI's, bone scans and more. I even
had a carpal tunnel surgery after one test, hoping it would lessen the pain in my arm and
shoulder. Nothing worked! My migraine headaches got worse and worse. I could not sleep
through an entire night. I was soooo tired all the time. It got so bad I crawled to work
when I could, crawled home and handed my kids money to order pizza for dinner, cause I
sure could not stand up any more, let alone cook.
One day, after I had to leave a meeting at work, suddenly due to pain, I
walked the corridors of the hospital I worked at. I saw the name of a woman doctor on a
sign and went into ask for an appointment. Not sure why.....She saw me the next week and
listened to me, she said that she too had the same symptoms as I and she had deemed it
Fibromyotosis.
I took this diagnosis and ran with it. I found Devin
Starlanyl, the real name of the syndrom, Fibromyalgia and other research online. I
presented my primary care doctor with this information and she dug in and helped me find a
routine that worked. She has given me my life back. I still have pain, I still feel tired,
but the migraines are gone and I can function much better that I used to. You never know
where help will come from. You may find help from a Neurologist, or a pain specialist, or
a Dentist....it could be as simple as a caring family doctor. Do your research, actively
seek a care provider. You life can change, mine did. It is a pain, you will want to give
up. You will feel that nobody can help you. Not true. Even when you feel you are ready to
give up,don't. Find support, find someone to help you do it, but do not give up. Somewhere
there is a doctor for you.
Submitted by Anonymous
A mess works out.
Years
went by, I went to my family doctor. I went to any specialist that my health insurance
would cover. I had test after test....mri's, cat scans, xrays, bone scans, eeg's, emg's,
you name it, I had it done. I knew what my problem was. I had read all of the books, I
went to Devin Starlanyl's website, I did research, but I could not get anyone on my
medical team to listen or believe me.
Then the bottom fell out of my world, my employer was changing its health insurance
provider. I had to pick a new primary care provider or one would be chosen for me. I felt
lost and at my wits end. The pure energy I had to use to call a new office, get an
appointment, drive there, clean up, explain my problem to the nurse taking vitals before
the doctor came in, all of the fuss that comes with going to the doctor, was JUST to much
for me. I just did not want to deal with it, physically or mentally.
At this point, I did not care anymore so I basically closed my eyes and put my pen on a doctors name. I then signed up under the new plan with this doctors name as my primary.
I did not sleep for a week before my first visit to this new doctor. I was prepared for her to tell me it was all in my head, I had no pain, I needed to lose weight, exercise more.
I could not have been more wrong. This unforseen event brought me to the doorstep of a doctor who asked me to submit my research to her. Medications I have heard of, therapies I have heard of and more.
She was true to her word and listened and put me on Flexeril and zoloft and after 9 months I am sleeping longer during the night. My pain levels have lessened. She is open to sending me for therapy, massage, water therapy, whatever it takes and whatever my insurance will pay for.
One big door closed in my face and it was hard to go willingly to another door to open it, but behind that door lay a new life for me.
Keep your eyes open, you never know when a seemingly bad thing will turn out to be a good thing for you.
Kaylin-Illinois
Health care in the U.S.A. Stinks.
I am a 60 year old woman who has worked her entire adult life. I can not find a doctor willing to believe in Fibromyalgia let alone treat it.
I found one doctor willing to put me on an anti-depressant, not because it could help with my sleep like research shows, but because he believes I am depressed and all of my paiin stems from the depression.
As of now, I can pay a few bills, such as joining the local ymca so I can use the pool for exercise, and I can get a massage about every 3 months.
But what happens when I retire? Retirement is close for me and my pension will not allow me the luxury of pools or massage. I will be without health insurance so I will be unable to even pay for antidepressants if the prices do not come down.
In all honesty, I am not sure I will make it to retirement. I have days when I can barely get up and brush my hair. I am going to work barely groomed now. I am taking more and more days off as I just can not trust myself to drive. I get dizzy, my arms go numb, my eyes un-focus.
What
will happen to me if I lose my retirement benefits? What will happen to me even if I make
it to retirement?
Health care in this country stinks and I may just have to take the cowards way out before
old age leaves me to weak to do it.
This country needs to do somethng about its healthcare and fast. A lot of people, in good, honest hard working jobs are falling through the cracks and they will be left with no relief in their old age if they do not have a family to care for them.
I lost my husband 11 years ago, we were never able to have children and my only sister died 44 years ago, I am alone in this world.
I guess if I do take the cowards way out, at least nobody will miss me. I will leave it up to the young folks in this country to make some noise and get things fixed.
Elise-N.Y. N.Y.
Don't
Give Up.
I went year after year, feeling pain. I could not sleep and I was So tired all the time. I
went to the local hospitals emergency room, local doctors and doctors not so local. I had
cat scans, MRI's, x'rays, blood tests, nuclear scans...I had so many tests I lost track of
them all. Then I found a copy of Devin Starlanyl's book on Fibromyalgia and Chronic
Myofascial pain.
I did a ton of research online and in libraries and I came up with some medications that
may help me. I took this list of medications to my Primary care doctor and asked her if I
could try them. She was up to the task of helping me and admitted that she felt bad for
not being able to help me all along. Long story short. She listened to me, I tried the
meds. suggested by Devin and other sources and I am now sleeping a good 8 hours a night
and my pain levels are down. The pain is still there, but it is not life altering, stop me
in my tracks pain. Do NOT be afraid to ask your doctor about treatments you feel may help.
All they can do is say no. If they say no, move on to another doctor as you can until you
find one that will allow you to try new things.
Beth in WVA
I have Fibromyalgia Syndrome, which falls under the Arthritis Foundation.
Fibromyalgia Syndrome (FMS) is a common condition affecting at least 3.7 million
Americans, if not more. FMS causes scattered pain, lack of energy, poor sleep and
myriad of other signs and symptoms. Because symptoms of many diseases cause similar
complaints, diagnosis is difficult. Often many weeks, months or years will go by
before the person with FMS or the doctor recognizes what is wrong. During this time
the results of an examination by the doctor are normal, as are routine studies like blood
tests, urinalysis and X-rays. But reassurances that nothing is wrong provide little
relief from pain, and the patient and doctor become equally frustrated that the symptoms
refuse to go away. A patient worries that a serious illness remains unrevealed,
adding to the patient's anxiety. The key so far has been the active participation
and take charge attitude by the person with FMS. There is a real need for more
awareness among our health care professionals about FMS.
I have aching, burning, shooting pain from my muscles, fatigue and disturbed sleep. My
neck hurts, my shoulders, my arms down into my hands and so does my lower back, hips,
knees and feet from pain due to FMS. I can't remember the last time I have woke up
refreshed from sleep. I have terrible headaches, irritable bowel syndrome, irritable
bladder, morning stiffness, and memory problems. I now have numbness from the elbows
down into my hands most nights. I have sensory loss, and now ocular
impairment. I have been treated in the past for non-cardiac chest pain which
simulate cardiac disorder and often have abnormal smooth muscle tone in muscles
surrounding the bronchi of the lungs which caused severe life threatening pneumonia on
three occasions. The list could go on, but the bottom line, I can't work, I can't
hold a job. It takes two incomes in the Bush Administration to raise two child in
today's economy and actually have food on the table. I can't do that any more, all
the burden goes to my 56 year old husband who has lost so many jobs due to down sizing,
companies going under, including Enron, and lay offs, plus age discrimination, that can't
be proven in this country's courts, due to the current laws and enforcement. Mr.
Bush wants to raise Social Security Retirement age higher and higher, yet employers want
to lay off workers by the time they hit their 50th birthdays. They don't want them
or their families causing their insurance rates to rise due to illness brought on by
age. They want to hire young people, for less pay, who are willing to work 80 hour
work weeks to keep their jobs and let their children raise themselves, of course, unless
you are rich like movie stars and President Bush and have lost sight what it is really
like to be a real normal person living the every day life in this country
FMS hits all ages, women and men. My daughter who is 16 years old has now been diagnosed with FMS. It's a death sentence of pain and illness for the rest of her life unless something is done. She lives with that fear on a day to day basis watching me suffer and feeling her own aches and pains. You think I am kidding, you think I am blowing things out of proportion, I am making a mound out of a mole hill. I am NOT! FMS is a serious illness, so serious in fact that with more and more health care professionals learning to diagnosing this illness, you, are someone in your family will have this or have had this and has never really been explained.
There are no real treatment protocols for FMS and most FMS suffers can NOT manage their pain with Advil, Alveve, or Tylenol as the Arthritis Foundation suggest. Nor by just taking antidepressants. They suggest exercise, but most FMS patient are in such great pain and without funds and the lack of places with 92 degree pools to exercise in that most give up. I know, I have been on several support groups for years listening to people talk of this very issue and many more. We can do gentle stretching of muscles all day and every day, but I can tell you, I will be in pain while stretching, after stretching and the next hour and the next day, week, and year. This is a year in and year out illness with no hope of escape. You can rest and relax all day, all week and all year, but the pain does not go away nor the need for you to function and work to suppose your family. I have attended education classes on this illness and have done extensive research and so far have found very little help in actually making headway into this illness. You can have all the healthy habits in this world and this illness will not go away. I have been there and tried that, I have taken just about every supplement known to man and just about every medication the doctors can dish out and still I suffer, and my daughter suffers. Just going to high school and sitting through classes is very hard, missing school days due to pain and headaches is hard to keep her grades strong for a strong future and the ability to enter college or later the work force. I wonder if she has a future. She is 16 and takes Tramadol, hydrocodone for break through pain, she is on antidepressant, muscle relaxants, sleep medication and going to physical therapy twice a week, as long as I can pay for it and the insurance company does not say enough!
I
have tried acupuncture and acupressure, massage, biofeedback at Baylor Hospital,
meditation and guided imagery. And, I can tell you for a fact that when I have a
major flare of this illness nothing works other than going to bed with 325 mg of Percocet
as many as four times a day. I can be in bed for days, weeks and even months.
The longest flare was for 6 months.
I have seen many doctors from rheumatologist, general practitioners, psychiatrists,
chiropractors, nurse practitioners, occupational therapists, and physical therapists and
more to no real avail!
I have use my humor, sense of purpose, sense of control, social support, and positive
self-image only to have this FMS still cut me down. FMS has effected my sex life, my
marriage, and my life to the point of no return. I don't want this for my daughter,
my child, my future hope in tomorrow wasted away due to FMS. I don't want the cycle
of pain, reduced activity, deconditioning, fatigue, depression, and stress to haunt her
for the rest of her life. What parent would want this for their child or for
themselves for that matter! You can have all the proper body mechanics and still you
will have pain from FMS. You can develop energy saving techniques and you will still have
pain from FMS. You can stand on your head and ask God to take you and, if he
doesn't, you still have pain from FMS. You lose your ability to make an income and
you lose your ability to manage FMS. You have grief for the former self because you
have suffered a loss, you grieve for your old life, your family grieves, they want the old
you back. Some family members can never except FMS, they can never acknowledge FMS
and if they try they often spiral into depression right along with the patient.
No
FMS patient can take enough of every day stress out of their lives with little income to
handle stress and emotional challenges that most well people can manage. If you lack
financial funds, jobs and health care no one can manage FMS. NO ONE!
Mr. Bush, where are the jobs that are needed in OUR country. Why are US companies
taking our jobs away from Americans to third world countries, so that they can just make
more money to line their greedy pockets to help you pay to stay in office. Do you
really care about the American people? Our men and women are dying in a senseless
war and we pour billions of dollars into third world countries, but do little at home to
make sure that we have good jobs, health care, and retirement for today or for the
future. We are supposed to be the greatest country in this world, what
happened? Your children are born with silver spoons in their mouths, they don't have
to worry. But, my children and the bulk of children in this country are NOT! I
hate to say this Mr. President, but you have blinders on, you know the kind that you put
on a plow horse. You do know about plow horses, right?
Senator Hutchison, Senator Cornyn and Senator Hall what are your plans for the Arthritis Prevention, Control and Cure Act? Will you let my daughter's life fall through a crack, will you be their to pick up her broken heart, will you be their to hold her hand when she suffers such pain she can barley breath or talk. Who will be there to make sure she has health care, a job, a life without pain and suffering beyond what any cancer patient suffers with day in and day out, year in and year out, until one picks up a gun and ends it or dies a slow painful death from having FMS with NO hope in sight for proper treatment, medication or cure. How would you like to walk in my shoes and suffer with FMS and watch your child suffer with no hope in sight in their life time. That's what my mother has had to do with me and now her granddaughter. When will this all end? I need your help. I'd love to get in front of congress and state my case. Pay for me to fly to Washington, my hotel and food expense, help me lobby for FMS, but wait, I most likely will be too ill to travel that day, the stress of traveling or speaking in front of the house would cause me the pain and the flare from hell. I can not do this illness on $928 dollars a month from Social Security income and neither can my daughter. What does it really take to get people in Washington to hear the people, after all I pay taxes, your salaries, your health care, your retirement. You don't retire on what social security offers any way. What about me? Where is my job, my health care, my hope for the future, my retirement, where are my golden years, what happens to my child after I am dead. My mother wonders the same things about her daughter and now her granddaughter. I know I am not rich and I really don't matter to you, but I should! Please help support this bill and other questions that I have asked. Please do not send me a form letter telling me how you may or may not support this bill, please just do your job and care and support this bill and the concerns of the very people who placed you in office hoping for a brighter tomorrow for their children. Good jobs, good health care and retirement for the golden years. Not everyone gets to go to The University of Texas of Harvard nor will have learned to invest in the stock market, mutual's, or the bond market. What happens if and when it crashes like it did in the 30s, and not so long ago when people lost all their life savings. I guess I should learn to pull a rabbit out of my hat. But, please don't let my daughter down and not vote for this bill, YOU are all that she has.
Submitted
by Freda Lovell
What We Need From the "Healthy" People In Our Life.
What I need from my family is more personal responsibility. They all try and help me by
carrying groceries, or moving things for me, yet they over look the small, day to day
things that cause me a lot of work and energy that I can not afford.
An example; I go to sweep the kitchen, a simple chore. But first, I have to pick up 6
pairs of shoes, a discarded jacket, toys, inside out socks, a book they are reading,
pencils, crayons. A simple chore like sweeping turns into a major chore by the time I bend
over numerous times to pick up and then I have to walk to various locations to put the
stuff away. By then, I am to tired and sore to sweep! I need them to hang up towels. Put
clothes in the hamper. Put water in dishes so I don't have to scrub so hard when i wash
them. If you drop toothpaste on the sink, wipe it up ASAP, don't leave it there for me to
scrub a day later. Just take care of your own messes and you will save me a TON of energy.
I also need them to know that I can feel good mentally, but not physically. If I am happy
and talking and having fun, that does NOT mean I can take you up on your offer to go to
the zoo or shopping. I can have pain and still be happy. Sometimes we are forced to act
unhappy, even when we feel good so you do not expect things from us we can not do
physically. A good mental day, does not equal a good physical day. One last thing I need
from those in my life, is for you to NOT take it personally. If I have a bad day and
cancel lunch with you, don't think it is because I do not want to be with you. If we are
at a function and I ask to leave early, don't think something is wrong or that I am
unhappy, I just know my limits and know I have to go home and get some heat and
medication. Also, please know I will push and push myself to be there for you, if for any
reason I have to cancel plans or leave early, I will do so with MUCH regret and I will
have guilt and beat myself up over it for a long time.
JK
Emotional Support Can Keep You Sane.
I have seen many talk shows and magazine articles that tell you to beware of online
information and chat groups.
While I believe there are sites out there that can hurt you or may be out to scam you I
also have to be thankful for the group I found., I have to say it can also be a lifeline.
I found an online group 11 years ago. All of the members have Fibromyalgia, CMP, TMJ,
Chronic Fatigue, Cancer, you name it, we have gone through it all together.
My family was unable to relate to my stress or pain levels. They could not always grasp
why I could not just get in the car and go out for ice cream...
This group of people I found online were great. They actually listened to me, and I knew
when they spoke, it was from experience.
In the years I have known them, we have gotten married, divorced. Had babies, gotten pets,
lost pets, felt good, felt bad.
Worked, got laid off, filed for disability. I do not think I could have made it without my
small band of support and information. If you do nothing else for yourself this week, vow
to find a good support group.
I must have signed up for at least 12 online groups before I found one that was right for
me. Don't give up, keep on looking and you will not regret it.
These gals and guys have helped me through a move, the loss of a parent, the loss of a
job, the loss of my dog and the joy of a new baby, a new home, a new career.
Even when it seems bleak and you find groups that squabble and fight and have tons of
rules you can not follow, don't give up. Find a group that is right for you and get to
know the people. Share photos, talk and you will not regret it!
Allison K.
Books, Websites and Other Items That Made A Difference in My Life
I was just 29 years old, I was married 3 years and I had an 18 month old baby. I also
worked at a local
grocery store, first stocking shelves and then working my way up to assistant manager.
Life was good. My husband
and I bought a house I love, with land. We put in big gardens and I just loved planting,
picking and eating all
of our fresh foods. I had one horse that was a part of my life since I was 17 that I cared
for and rode often.
Then I just kept feeling worse and worse. Tired, aching, my muscles burned. I could not
come home from
work and play with the baby and cook in the same night, let alone garden, clean stalls, go
riding.
Something was wrong! Really wrong. When I started to have sleepless night after sleepless
night I knew I needed
some help.
One day while eating my lunch at work I started talking to a
co-worker who looked liked she had not had any
sleep for a month, I asked her what was wrong. and she told me a tale of her mother and of
her life in the past
year. A tale of pain, fatigue, sleepless nights. She was doing her moms shopping,
cleaning, paying her bills and more
as her mom just could not do it for herself. It was not my co-worker who was sick, but her
mother, and her mother had
all the same symptoms I had.
Needless to say, she had my attention. When the story was over, I
had a name! A real condition that others
have suffered with as I was suffering then. I have since found out that I have not only
Fibromyalgia, but CMP as well, two conditions, two different treatments. I had to find
this out on my own and then find doctors to treat me.
The two of us put out heads together and decided to take an
active role in learning all we could about
the condition, treatments, causes...and most of all to see if there was a cure.
Long story short, both of us found help. It was a long road and
it is still a bumpy road at times. We did find some great
information and advice online that steered us to doctors, treatments and emotional
support. We were also
able to avoid a few common traps and scam treatments I may have tried if I had not found
valid information online first.
Here are some of the resources that helped me gain the courage to actively
seek healthcare and treatment.
Devin
Starlanyl's Website and books. She speaks to you in common human language and
shares a ton of
up to date information, on everything from medication to how to get off of a
bed without straining your neck.
The Trigger Point Therapy Workbook.
Your self-Treatment guide for pain relief by Clair Davies. If you have CMP
this book is a must have for self-treatment of your Trp's. It can be hard to
find, but if you find a copy on Amazon or ebay it will change your
life and help your pain.
FMS Community. I found
some links to help me understand how to file for disability on this site that gave me
direction.
I also found 2 great support groups that I joined and I was able to go over
all of the medication information, do
some more research and then talk to my doctor about the options. She agreed
with my research and put me
on a new combination that seems to be working well.
I submit this tale in the hope that you too, will read and read until you
find a treatment that will help you regain
some of your normal life. I still have bad days, heck, bad weeks! But I have
more and more good days
when I can work a full day and with some rest, still enjoy my family in the
evening and pursue my interests
a bit more.
Tiffany Albertson - New York
Attending School And Social Issues For Children And
Young Adults
I don't know how I made it through High School. I had to make a
choice between doing my studies and having a social life. I lost a lot of friends and I
had to drop out of a lot of extra activities I enjoyed. I was so wrapped up in looking
normal, it took all of my energy and I lost a lot of things I could have kept if I had not
been so concerned over my appearance.
But I did keep my grades up by letting other things go. When I made it to my freshman year
at college, I decided I had to make some changes so I could go to school and still have a
social life. When I was in high school, I did not want to look different or act different
from my friends. So I did not do anything that would aid me in my studies and leave me
extra energy to have fun later. Once I hit college I realized how dumb that was. I now
keep a small tape recorder in my backpack, so I can tape lectures and not have to sit and
take a lot of notes. If my back hurt, I would just suck it up and let it eat my energy
when in high school, now, I put my backpack under my chair and prop my legs up for some
relief. I bought fat pens that are easier to grip. I take a nap during the day if I need
one so I can go out for pizza with my friends. I have talked to my professors, told them
about my health so if I need to get up and stand during a class, I can do so. The first
time I did this, I was SO afraid they would all laugh at me or avoid me, but I have found
the opposite is true. Some fellow classmates have told me they admire me for pushing on
even when ill. I think we give our fellow humans less credit than they deserve when it
comes to being understanding. This is all still new to me, but I am learning and so far no
major embarrassments have happened, lol. Its hard. There are days I can barely keep up in
class, let alone date. But there are days I do really well.
Mitz from Alabama
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