Living With Fibromyalgia & CFS/ME
Experts estimate that about 10 million Americans and approximately 3-6% of the
population worldwide suffer with Fibromyalgia (FM). While approximately 4 per 1,000
adults in the United States are thought to have CFS/ME. These numbers show that you
are not alone in your fight against FM and/or CFS/ME.
I suffer from FM
and CFS/ME. I believe in the power of people. I feel that you can over come anything
if you have support from other people. Living with Fibromyalgia & CFS/ME is
a collection of personal stories from people living with these disabling medical
conditions. I know that you find their stories helpful in your own battle with these
disabling medical conditions.
Help someone by sharing your story. Not sure how to start?
I've provided writing tips & guidelines to get
Read Their Stories
My Story - Anonymous #2
Where to start. My journey into an unknown realm of a battle that rages within me,
started in the Spring of 1991. I'd taken a well deserved vacation with a couple of
friends up to Lake Tahoe. Several weeks later, after returning to job and life as I
knew it, I started becoming ill.
My eyes blurred, I was throwing up, aches, pains, and my head felt like I'd never
felt before. It was torture; like the worst fog or some thick sludge had entered my
brain. I couldn't think. As a computer programmer, and depending on my quickness of
thought and reaction ... I became afraid ... very afraid of what was happening to me.
My private physician did every test possible on me. Nothing was showing up. He
finally, though he professed to me that he didn't believe that CFS was a disease, sent
me to a professional that had been working with other patients. His prognosis was
that I did indeed have CFS.
I hadn't a clue about it. I started reading up and found that a whole little area
in Lake Tahoe had come down with what was found to be CFS a decade or so before. I
still believe to this day that it had to be viral or bacterial... what? In the water?
The air? But, that fateful trip to Lake Tahoe introduced me to my Terrorist.
I was a single mom, raising two children. I fought .... I lost my job due to my
inability to keep my head up. It was awful. Some days I fOught just to get out of bed.
I'd scare myself ... forgetting where I'd parked my car, until I learned I had to
slow my thinking and detail it because of the breaking of thought within the neurons.
Thank goodness I was blessed with a sister and mother that helped me with my children
until I could better cope.
I struggled to learn to live with this monster inside me. The doc tried several things
that seemed to have no effect. What was interesting was he told me that the government
was requiring him to turn over patient names being diagnosed with CFS. And even
stranger, years later, I returned to the same clinic to find that my filed records
had recorded me as having had Mono, of which I'd never had in my life and no mention
I used meditation and learned to know my limits over the years. Simplification in
every part of my life, a must. I had and do take vitamins and allergy pills every day
and try to eat right. Emotional extremes were a complete no no. But, in real life,
you cannot always avoid disaster. Some days have been better than others, but the
worst thing, the worst thing of all ... I can't remember how it feels to wake up
feeling good; to ever feel like I had a good nights sleep. The cup is always half
I always wondered, if a cure didn't come along, how getting older would affect me
and my ability to cope. Well, I'm getting there now, my later 50's. My energy is at
an all time low. I lost my job of the last 12 years, a year ago due to a lay off. I
live in southern part of US and the heat of Summer makes it only worse getting through
My children are out of college and on their own now, and hopefully not scarred for
life. I still practice my thinking ... and not every time ... but most the time,
remember where I've parked my car. :o)
It's hard for me to explain to others why I must keep myself somewhat protected. Why
I have to keep simplification in my life and struggle to keep the world of chaos that
is now all around us, out best I can. How do you explain that if I didn't, I couldn't
And I haven't given up hope that some day, just maybe some day I might wake up and
realize something's different. The glass is half full today. God bless you all in the
My Story - Anonymous #3
As a child I always knew there was something wrong. Then as a teenager it got worse.
Always tired, never feeling good, and the list goes on. It was really hard because my
family and friends passed it off as just me complaining. I knew there was something
wrong, I just didn't know what it was.
To make a long story short ....I am now 57 and finally in 2004 got a diagnosis of
Fibromyalgia. I can't tell you all the pain I have EVERYDAY. And the fatigue? It makes
you feel like you don't want to go on. I am on Neurontin which really makes you tired
also. This year has been the worst yet. I have had to double my dosage of my med.
Depression is constant. I just pray that there will be a cure for this awful disease.
My Story - Anonymous #4
I developed fibromyalgia after a large SUV rear-ended my little Toyota Celica at a
stop sign. I was completely stopped and the driver of the large vehicle behind
me hallucinated that I had made my turn and plowed into my car. The car was totaled,
and I had to have surgery on my left shoulder. After some months I noticed that the
pain had spread from my left shoulder across my back to my right shoulder, up my neck
and down my back, and was present in my arms and legs as well. I couldn't figure out
what was going on until a co-worker who had fibromyalgia suggested that I get tested
for it. I received the diagnosis in 1998 and have suffered from severe pain on a
daily basis since.
I ended up having to quit my career and go on state disability; when that ran out I
had to go on SSDI, for which I'm eternally grateful. I am single, and there's no one
here to help me do anything such as clean the house, or to provide any financial
support. Over the years I've lost my career completely and have been unable to
work full time. I rely on very short-term little jobs that I can do online or whatever
to supplement my income, but am still on the verge of bankruptcy. It's interesting
that the government decided that I make too much money to qualify for Medicaid or for
any other supplemental income, but I cannot pay my bills. I don't know what is going
to happen in the future. My family cannot or will not help me economically, so I know
I'm on my own completely.
Most of my friends are really sick and tired of hearing about the fibromyalgia pain
and other symptoms, so I've pretty much stopped talking about it with them. Some
don't seem to understand the enormity of the symptoms and how they can interfere with
life on a daily basis. Others, although sympathetic, are frustrated because they can't
do anything about my situation and they feel badly that they can't help, so they
don't want to hear about it either.
I am very blessed in that I have been able to find a doctor who specializes in
pain management. It's made such a difference! I have to take antidepressants and
a painkiller, and am so tired of the government's interference in the prescribing
of painkillers. We aren't criminals, for goodness' sakes! We need our medication
to function at all, and we are not drug addicts. I monitor my use of the painkiller
very, very carefully, and only take it for the pain, not because I'm not happy with
my reality or for any other reasons. I support the American Pain Foundation's efforts
to help people like me continue to obtain pain medication and to try to decrease
the stigma attached to people like us who taken them for diseases such as fibromyalgia.
I suggest that we all get behind this organization and do what we can to help
I've recently been prescribed Savella, generic name milnacipran, and it's helping
my depression so very much. It's started to have an effect on the pain as well after
the past three months, and I'm hoping this continues to increase. Perhaps I might be
able to work part-time at some point in the future.
I have no idea how I've made it this far and still have a roof over my head, food to
eat, and the SSDI to keep me alive. But I'm so very grateful for all that I have. I
do miss everything I've lost - my career, economic stability and security,
relationships, and my health. But I am grateful to be relatively content at this
time, thanks to my doctor and his excellent care. I hope every day that I'll have
the energy to do something to help my mood, such as writing, doing art, exploring
new areas of knowledge, reading books, and so on. Unfortunately on many days this
past several weeks I've not had the energy, and have been virtually a prisoner in my
own home. I don't think people understand how devastating fibromyalgia can be to
one's life, and hope that someday there will be a greater understanding and compassion
for people like us. Thanks for reading my story, and good luck to those of us who
are struggling to stay afloat in these difficult times.
My Story - Fran Rhodes
I am 46 living in the UK, and have suffered from pains of all sorts etc since I was a
teenager. Like everyone else on this site I have been to various doctors over the years.
It wasn't until 2005 when the major problems began to appear. I started off that year
with 8 weeks in hospital with a breakdown, a major adverse reaction to medication, flu
and other depression. My mother died on the eve of my birthday in August, then end of
2005 I was diagnosed with Gall Bladder problems. This meant I spent every other couple of
weeks in and out of hospital until they operated.
In the meantime a hospital consultant decided while they were checking my gall bladder
area that I had Fibromyalgia and I could go home. I couldn't say the word let alone spell
it ~ I certainly can now! Home I went totally confused, and then looked it up on the
internet finding out all sorts of symptoms to look forward to.
In 2006 I was diagnosed with diabetes II that was a bigger shock as I knew what that was
and what that could lead to. My Fibro has now lead to CFS after Swine flu last year,
arthritis in hands/knees and elbows, my hips compressing, and anything else my body wants
to try out.
I have found that having friends with these illnesses help as we can discuss how we are
feeling without boring our friends and family. I have had the 'Its all in your head' from
a very unhelpful GP, and the 'don't you look well' from well meaning people. So please
expect these sayings somewhere along the rocky road.
How I managed: Facebook, friends ~ a great source of help with someone being there 24/7
to talk to. I will probably never meet any of these people but knowing they are there
lets me know I am not alone and neither are you! We don't have to talk 'illness' but we
can have a great and a good laugh too, humour after all is a good medicine.
I have been lucky to have an understanding medical team around and thankfully my GP has
got me to see pain management team, had scans, and even neurologists. Don't be fooled by
the websites which say 'I cured Fibro etc in 5 mins, unless you are really lucky this is
with you for life. Unfortunately Fibro covers a huge amount of other illnesses which seem
to appear over night too, so be on the look out for urinary problems, sight problems,
coordination, loss of memory, hand tremors, and the list goes on. But please make sure
you do check out new and unexplained pains and don't put them all down to Fibro. Stay
safe, stay strong and keep positive.
My Story - Janet L.
I have never been formally diagnosed by rheumatology although I was diagnosed with
Hypermobility Syndrome by them in 2006. I noticed weakness in my back in my mid twenties,
I'm 39 now, and by 2006 the pain would strike after two minutes of being on my feet. It
was easy to see I was hypermobile so the referral was quick and the diagnosis easy.
My biggest difficulty is that I also have C-PTSD which ended up marring my medical
records and leading to a GP saying Unexplained Medical Symptoms, No More Testing. That
doesn't help when you have relentless symptoms that are causing you great distress. My
P-doc, after hearing of I think three types of symptoms marked me down as Somatizing back
Along with the backache, I started to have abdominal pain that was crippling, doubling up
outside, scan done, no findings, this type of pain did disappear once I gave up fizzy
drink. Late 2007 or thereabouts I cant recall dates too clearly, I just ended up crashing
with an all consuming fatigue, my ex partner couldn't even wake me up to get me to eat.
When I was awake I researched on somatization trying to find an answer to a self-help.
I was abused for ten years by my step father and my mother disowned me after I brought
charges against him in 1989. My Grandmother was the only person to provide safety for me,
she has been slowly dying with dementia since 2006, all during the same time frame so I
found it hard to argue against the label of Somatization. Summer 2008, I oddly had enough
energy to go out and pick up my prescription (so I thought). I was climbing uphill when I
got enormously out of breathe and felt like I was going to collapse for sure. When I got
home, my abdomen swelled up so bad I had to quickly undo buttons and just was bewildered
at what was happening to me. Then the chest pain started, paramedics came ecg normal. I
was suddenly choking when any fragrance or chemical hit my senses, dizziness, migraines,
infections, you know the end list list that comes with fibro/cfs/me.
In early spring 2010 a GP handed me a leaflet on Fibromyalgia Syndrome. There was no
surprise at this because of my own research on my symptoms, everyone fitted but some were
suggestive of MS too like face/tongue numbness but I am assured I don't have MS and am
having an MRI on January 6th. With Fibro, it feels to me like my body is being assaulted
by many different symptoms all of the time, and I have grown tired of reporting to
doctors are there have been so many and examinations have been negative or inconclusive.
I have not accepted my condition yet. I think I get confused when my psych tells me I
don't have fibromyalgia I have fibromyalgia "type" symptoms. Ummm... Recently, I have been
discharged by the CFS specialist telling me I have to heal before he can offer me any
progressive treatment. I wish I knew how. I wish someone could say you must start here. I
am not in denial of my PTSD but I will always believe that fibro made my PTSD worse
before the fear made my fibro worse. I am due to have my brain scan in 5 days time and I
do want a referral to rheumatology.
Fibromyalgia/CFS/ME are beasts that we must conquer and manage not allow them to manage
us. It still does on bad symptom days but my hope is to take my control back and LIVE
with my condition.
My Story - Richard Brown
My name is Richard Brown, and I have had Fibro for 13 years now. I am 46 years old, a
high school Band director (or was until November, because of Fibro), married for 21
years, with 4 boys. I live in Central Texas, like football, NCIS, Burn Notice, don't
like annoying people, and have had to learn to live with constant pain and fatigue in a
profession that is fast paced and stressful.
13 years ago, I stepped out of bed, and a sharp pain shot thru my foot. I walked,
rather, I hopped around on it, till the pain subsided, and went on with my day, firmly
believing I had a pulled muscle. The next day, same thing. As time went on, the pain
crept up the right side of my body, until it hurt all over the right side of my body,
all of the time.
Fibro tends to do it's own thing. In my family, we figure that it's genetic, because my
aunt has it, and only has it on her right side also. We figure my grandmother had it
too, we just didn't know what it was. My sister-in-law, who is a Physical Therapist,
believes that we have it on both sides of the body, but that the left side is "fudging"
Well, 13 years ago, I thought I was dying. I did research on several things, went to a
doctor, thought I had the early stages of Lou Gehrig's disease (until I found out the
voice was the first thing to go). The doctor (was a skeptic, go figure), told me I was
in excellent health, and that my body was wearing out. At the age of 33.... After
several months of pain/fatigue/fog, my parents came back from a family gathering.... and
told me my Aunt had the same symptoms, and that she had a thing called Fibromyalgia. I
was floored. And relieved! I was going to live!
Then the fun started. Funny, some doctors didn't want to recognize that Fibro existed.
My doctor told me flat out I didn't have it, because it was only on one side. I went
to a rheumatologist who told me the same thing. I did happen to find a doctor who
believed me enough to treat me (finally). Meanwhile, I went from teaching beginner band
students at a middle school to teaching the lowest level of band student at a High
School. It was a stress increase of monumental proportions. Add to that, a boss who
didn't give a rat's....butt if I hurt or not, I had a job to do, etc. I could spend
another full email on what a pain in the posterior this guy was.
I was managing. I was able to control pain with otc pain killers, not well, but
decently. After 2 years at the high school, my boss left, and another came in... and
after a year he put me back teaching sixth graders. That year I had a emotional
meltdown and started Zoloft to deal with the mounting depression. Pain was a part of
the job, I dealt with it. 4 years passed. Then the boss moved me back to the high
school. And the Fibro got worse.
High school band directors deal with 10 football games every year. Our high school
band also goes to 4 marching contests (STRESS!!!), hosts two concert and sight reading
contests, sends students to honor band every year, hosts a week long concert festival
in Feb, etc, etc, etc, etc. The first year back was ok. The second year back harder.
Third year harder still. The fourth year.... Before our last football game this year,
my boss pulled me out of my position as 3rd director at our high school (we got 200
kids, with 3 bands). He put me in as a floating instructor to the junior high schools
in our district.
After out last marching contest this year, I was expecting my pain levels to relax.
They never did, instead, it got worse. My last month at the high school was spent in
a mental and physical haze. Not a good thing for a band director in charge of 9th
and 10th grade students. I shuffled thru the day each day trying to get to quitting
time. When I was finally moved out of my position, I began to realize how bad I
was getting. My wife and kids have noticed quite a difference in how I handle
The one thing that nearly everyone has said since November (when I moved to my present
position) is "I had no idea you were in so much pain". "You hid it well". Women are
expected by our society, even now, to be able to show weakness and pain more readily
than men. As a man with Fibro, it was almost understood that I was in pain, but it
didn't matter. I was to "shut up and soldier". "Everyone has problems". "Deal with
it", "get over it," you name it. It didn't matter if I was in pain, I was a guy.
I could "handle" it.
I learned I couldn't. And now I don't pretend. If I hurt, then I look like I hurt. No
more hiding pain. Pain sucks. Depression sucks. Walking thru the house, trying to
figure out what it was you were looking for SUCKS. It's easier if I don't try to hide
My Story - Rande Newsome-Brown
Hi, my name is Rande Newsome-Brown and this is my story of living with Fibromyalgia.
I was working in Monroe, La. at a local hospital on the geriatric psychiatric ward. I
was the type of employee that was one of the first to respond to any actions that
called for more than one employee to handle. In other words, I enjoyed my work and
gave 100% to my job. And, I was a pretty high energy person.
I don't know what caused me to have Fibromyalgia but I do know that I was required to
have a flu shot (something in the past that I had never done as I never seemed to get
sick) and lo and behold, I started having low grade fevers and aches and pain. Real
debilitating pain to the degree that I couldn't stand to be touched!
While at work, I was sent to the ER on multiple occasions as I was falling asleep,
running low grade fever, etc. and I just chalked it down to reaction of the flu shot.
However, the symptoms which included poor sleep patterns, extreme fatigue and pain
became unbearable. I asked the director of the unit, who was a psychiatrist, if it
could be psychosomatic and he firmly replied in the negative and pointed out that I
always had very verifiable symptoms that all the medical personnel had noticed. He
told me to find a good internal medicine doctor and get to the bottom of my problems.
I hated going to another doctor. I had been to several and due to my age and medical
history I was always asked "are you depressed" or "are you experiencing a lot of
stress". In other words, I was treated like a pre-menopausal woman who was
experiencing psychosomatic symptoms.
Fortunately, the last doctor I went to thought I had Fibromyalgia or CFS and did not
feel qualified to diagnose this and referred me to Touro Infirmary. After going through
a battery of tests with practically every discipline, i.e., psychiatrist, internal
medicine, endocronologists, etc., they determined that I did have Fibromyalgia. However,
they were concerned about some irregularities in my blood work and sent me to the
University of Alabama Medical Center as there as a CDC branch there and they didn't
want to miss anything. I did have some irregularities with my immune system but the
doctors felt it could be contributed to the chronic pain I was in. As it was explained
to me, the brain recognized pain and sent the immune system on the attack to fix it
when there was nothing that could be fixed so my immune system went haywire with
extreme highs on some tests and extreme lows on others. Anyway, everyone felt that
once the pain issues were addressed that the immune system would settle down.
I think the worst part of having fibromyalgia is constantly feeling like I let people
down. I can be going along on an even keel, with my medications taking care of my
pain, etc. and then have a flare up that sends me to bed in extreme pain and having
to take heavy duty pain medications. I am fortunate that I do not have an addictive
personality as I have been able to use these medications judiciously and have not
fallen prey to addiction which is very likely with people who are on a lot of
different controlled substances.
I, too, have people look at me and wonder why I am on disability because for the most
part, I do not look ill (unless you catch me when I have a flare up and then I look
like something the cat drug in).
Even family members have a hard time dealing with the fatigue and the constant issues
I have with pain, etc. They try to be sympathetic but it is hard to understand what I
go through as they have nothing to judge it by. One of my doctors told me to explain
it like this "that on a good day I feet like I have the flu and on bad days well, you
just don't want to go there". So if a person asking me about this can remember how it
feels when they last had the flu, the aches and pains, etc., they can kind of
understand how horrible it would be to feel like that every day.
I really try to live as normally as possible and most of the time can do this with a
juggling of medications. However, when I have a flare up it is pretty hard to deal
with for everyone, and it does interfere with the quality of life at times.
Living with Fibromyalgia takes a lot of understanding from everyone and it interferes
with all relationships at times. It is sad to not be able to do a lot of running around
with grandchildren and to not be able to keep up with others, at times. It is sad to
make plans with friends and then have to cancel at the last minute due to flare ups.
It is hard to realize that at the present time, there is nothing that can be done
except to treat the symptoms, which can vary from day to day.
Hopefully, my grandchildren will remember other good things about "Nana", my friends
will be accepting of my limitations and, hopefully, a simple cure for Fibromyalgia
will be found! That is what I hope for!
My Story - Cat Buchanan
Where to begin? I was diagnosed with arthritis at the age of 12 (in 1981) and psoriasis
at the age of 16 by Air Force physicians. My parents were dumbfounded that a 12 year old
was diagnosed with osteo arthritis, especially when we were told that I would probably be
in a wheelchair by the time I was 40. The psoriasis actually made sense to all of us
since my dad's mother had it and my dad has it as well. What we didn't know was that I
would develop psoriatic arthritis as well.
I lived with crushing fatigue off and on throughout my teens and 20's. It caused me to
miss school both in high school and an entire semester in college. I didn't know at the
time WHY I was so tired all the time, and attributed it to depression (I have been
diagnosed with mild bi-polar disorder - depressive type) and agoraphobia (another
inherited "gift"). The aches and pains I attributed to my arthritis, though why my
muscles would ache was something I just couldn't figure out. But the fatigue and aches
would go away after several weeks or months so I wasn't too concerned.
When I reached my 30's in I was entering a wonderful period of my life where I had
energy and was very active. I loved taking long walks and just being active.
Unfortunately, it only lasted 2 1/2 years. One afternoon after a nice 2 - 2 1/2 mile
walk with my boyfriend, I sat down and realized that all of a sudden I couldn't move my
legs. I couldn't stand up. Luckily, it only lasted a few minutes but it started me on a
journey that still hasn't completely ended as I searched for a cause and a treatment.
I contacted a neurologist and made appointments for tests. I went through an MRI,
electromyelegrams (EMG's), EEG's (I was having seizure symptoms) and other tests. My MRI
came back "clean" for lesions so I was told I didn't have MS (which I still think I
have) but I was told that I DO have carpal tunnel syndrome in both hands and potentially
nerve damage in my feet as well. I was then diagnosed with Chronic Fatigue Immune
Deficiency Syndrome and Fibro. With the Fibro I also have restless legs (in actuality
BODY) syndrome, IBS, gastro espophogeal reflux disease, a haitial hernia, myofascial pain
syndrome, asthma, psoriasis, arthritis and probably other stuff that I can't remember
right now. I eventually became so debilitated that I could no longer work as a Contract
Mortgage Underwriter. I lost my job and filed for disability, then I lost my boyfriend
who was not willing to "carry" a sick girlfriend. I was unemployed, broke, on food stamps,
sick, tired and now homeless ... and still waiting for disability after a year and an
appeal. Luckily, I met a wonderful man who told me that while I may have Fibromyalgia it
was NOT who I was. We fell in love, got married and had a handsome little boy. I also
finally was approved for Social Security Disability (early retirement) with the amount
based entirely on my previous income and not by "need", this enabled me to keep the same
amount coming in even though my husband earns a good income.
My memory has so many holes that everybody knows I will start talking and suddenly "lose"
a word or two. I don't always remember important things my husband tells me. Driving
longer than 15 - 20 minutes in one direction will cause me to have to go to bed (or the
recliner) for up to a week at a time. I can't clean my house because I am exhausted
physically and mentally and facing the normal messes of a 4 year old just overwhelms me.
I HAVE mostly accepted my limitations and what is required of me to keep myself to my
Because I can't work outside of the home, I started my own micro-business making fine
jewelry at home. It enables me to do something in VERY small "bursts" at whatever pace
my chronic illnesses allow me. I don't HAVE to make anything if I'm not "up to it" ...
if my vision is blurry, if my hands don't co-operate, if I can't think straight. But it
gives me something I can "do" to feel productive. My son is simultaneously a delight and
a terror - he's ALL boy and has a very loving, inquisitive soul. He knows Mommy is sick
and does his best in his 4 year old way to take care of himself and take care of Mommy
when she's having a bad hour or week. My husband is as supportive as he can be. He gets
frustrated at the state our house is in, but he never "blames" me for it. When I tell
him I NEED to rest he does his best to take our son out of the house to let me lie down
with no concerns over where he is.
Living with FMS/CFIDS/CTS et al is a challenge. It has robbed me of being an active
woman, of having a career outside of my home, sometimes of being able to get out of the
house and to a degree has forced me to redefine who I am and what success means. I am on
a variety of medications for the variety of illnesses I have (including slow sleep
insomnia) and I usually want to rebel at taking SO MANY PILLS every day. I went off my
medications before I got pregnant to make sure they wouldn't cause problems in my son and
I stayed off them for 15 1/2 months while I nursed him to make sure they still wouldn't
cause him problems. That experience forced me to realize that I NEED these medications
(or I need to stay pregnant since I apparently fit into that group that has a
near-cessation of symptoms while pregnant except fatigue) so while I don't WANT to be on
them ... I still take them.
Is my life as full as it was before my illnesses "cut the legs out from under me"? Yes.
It's just full in a different way. I have learned how to slow down and appreciate every
day, every moment of feeling halfway normal. Is my life as fulfilling? Absolutely! I just
find fulfillment in different ways: the intelligence and happiness of my son, the
unfolding of a flower in my half-tended garden, the smiles of those who love me and whom
I love, shorter walks outside when the weather is warm and nice where I can still feel
the sun on my face and the wind in my hair, completion of a variety of crafts projects...
Life may not be "perfect" for me, but who really wants perfection, anyway? I think it
would be boring. We "type A's" relish a challenge - isn't that what makes us type A's?
My Story - Lorna Eells
The Other Woman
I have known about her for many years. Back then I saw her pretty much the same way I
would view any other woman. She wasn't bad looking, reasonable figure, pleasant enough
personality. But four years ago my view of her changed, the more I thought about her,
was the angrier I became, my being, my mind and thoughts were consumed with 'her'. The
envy I felt was unimaginable in a sane person. Indeed there were moments when I felt as
if I was indeed losing my sanity.
I suppose if I think back to when it all began, it coincided with a massive bout of
depression. Whenever I saw her, my mind confused with the fog of anti-depressants and
pain killers, made me see her as everything I wasn't. I couldn't compete she was a
threat! In my more 'mad' moments I imagined her with my husband. In my mind's eye; I
would see her laughing with him and making him laugh. I knew she loved to dance and I
imagined my husband with his two left feet swinging her round as she twirled happily.
I imagined them making love in every position imaginable and then laying in each other's
arms in the afterglow of fulfillment.
I spend hours imagining her world and comparing it to mine, it didn't take much
detective work. She's bright and holds down a good job, she has friends that she
sometimes goes out with. She goes dancing regularly; I believe Latino dancing is her
'thing'. She always looks well dressed and manicured. She seems friendly and has the
kind of face that shows kindness and makes people want to empty their souls to her,
trust her. She has children and has been married more than once; to all intents and
purposes she is now 'happily' married. She's chatty and loves to be around people.
My world was by stark contrast, a lonely one. I have one friend whom I speak to on the
telephone and see occasionally. If I go out of the house once in a week it's a major
achievement. I swallow one cocktail of medicines after the other throughout the day. One
set for the excruciating pain that has become my life, some for the chronic depression,
some to help me sleep; so the list goes on. I walk stooped over often using walking
sticks; and find it difficult to get out my chair. I don't want to be around people,
they make me feel 'less than'. I actively avoid being social it's just too much like
hard work. Love making happens when I'm not in too much pain, not too tired etc etc.
I have a good husband so we have that in common. But how he came to be with her eight
years ago, was not his fault. I believe she somehow tricked him! The torment of him
being with her; even though he's with me now, still manages to arouse the envy the
'what did she have that I didn't' syndrome. I guess some people would say 'it's not
too hard to see'. I have forgiven him, what's to forgive? You see he truly did nothing
wrong. That other woman was ME!
My Story - Bronwynn
I was a very lively toddler, child and teen! My mother thought of me as the hardest to
bring up I think as always on the go!! I started ballet before I was supposed to and
Brownies!! However, there was another side to my life. My father was manipulative and
physically abusive of my sister mother and me.
As the eldest of three kids I felt responsible for protecting everyone and even tried to
help my dad. He had many lady friends and eventually had one who was involved with our
family from when I was 13 till my 30's when they got married and he divorced my mother, who
was housed in different houses like the other woman!!
I was the only kid of his who couldn't stick boarding school so I lived with his changing
wife!! I also was alone with him a lot as a third wife figure (not normal). He was a
Doctor and his reputation had to be kept looking good!
Generally life was extremely hard with no real holidays and lots of lies to live out and
hurts. Eventually I left home at 19 to do Nursing in London (as father recommended). It
was a big move for me! My parents rang but never came to visit. I felt very alone and
started to feel I was going mad! I saw Doctors and got some counseling but felt very
strange and out on a limb.
A few months in I started to do night duty on a female surgical ward. I was told I was a
good nurse but never believed it really. On these nights I as a student nurse was
expected to do a lot of running around and bed pans became difficult. Eventually my left
elbow wouldn't straighten and was painful. Then my whole body became painful. Even my
bedding was too heavy!! I could hardly move! This was early 1980.
I was eventually told after admission and tests that I must have caught a virus and got
polyarthritis, (inflammation of many joints). I took anti-inflammatories for about 7 years
after this. Advised by GP's and my father!! Eventually after many different jobs and bad
episodes a consultant advised me (sensibly) to come off the anti-inflamatories and take
pain killers like co-proxamol when really bad or paracetamol when bearable.
I continued having tests every six months around this time to test for Rheumatoid
Factor. 1987 I was now 27. My husband and I lived together at this time and things
happened to us such as he had a horrendous car accident/we had the world's worst neighbor
and were ripped off on our first family home. A few years later we moved back to where
our families were to settle and get married. Our first baby nearly died on arrival and
was starved of oxygen so that she had a damaged piece of brain the size of a pea. She
turned out to be a miracle baby but is now 20 and still needs me. She could have been
far worse off. I count my blessings! I have another daughter 7 years younger though
wanted a baby sooner but my husband was unsettled in work and was behaving badly, not
coming home etc.
Eventually his work settled I had my family then my father had things going on with that
same woman and number three was now installed!! Keeping it short he caused me
difficulties with my kids and I broke down and then he shouted at me and I crumbled.
Ten years on my second daughter has been diagnosed with M.E. and my sleeping is already
all over!! She comes awake at midnight!!!
I was diagnosed with Fibromyalgia only a couple of years ago! When finally crawling out
of a long period of breakdown and analysis. I have had mostly achy days which I live
through. I try always to be positive, however my husband is the messiest being to live
with and I'm a natural tidy person but can't possibly keep up!!! It can be HELL!! I hope
for my daughter it isn't for anywhere as near as long!!! It plays on my mind though! As
it does stop you being the person you want to be if people around you give up on you.
I have to fight and prove best I can who I am.
My Story - Lisa Harmon
I was always active as a young girl, being a cheerleader, gymnast, and living in the
country with all it's physical chores. But even then there were foreshadowing of the
difficulties to come.
Growing up in a home filled with abuse and fear, I learned young to close off my
feelings. I also found that I was the only one who could manipulate my father's moods,
and sometimes to prevent the violence and meanness. A little girl found herself
responsible for other people's moods, and if I failed, it was "my fault".
By high school I was having strange bouts of exhaustion, the occasional migraine, and
unexplained pain. Because I felt the responsibility to protect my mother and brother,
though, I next learned to grit my teeth and do what I needed to do, pain or not.
In my early 30's the body could take no more and I was almost bedridden with exhaustion
and terrible pain. Many doctors sympathized but didn't know what to do. Some doctors
told me I was making it up or "just depressed". Such is a familiar story to FMS/CFS/ME
There were years of anger and despair, yes, and they were the hardest years of my life.
But there comes a point where you find that it takes as much energy to be miserable as
it does to find your feet and build a life you care to live in. Those hard years had
the best, most life-building lessons in them. "It's my fault" was met by the truth that
I am responsible only for myself. And that no one was going to put my needs ahead of
their own unless I insisted that a relationship meant equal.
I learned compassion where there had been no feeling, and to just keep a person company
rather than try to fix. I found friends who support rather than demand, and how to hear
my body's warnings. There is life after fibro or ME hits. There is in ways a better
life after chronic illness begins. The pain and fatigue has improved some thanks to
medicine and a smart doc, but it will never go away.
This I know, that how you look at your life will determine how happy you are with it.
Learning how to find the upside in the down, and how to stay in that upside when it gets
hard is the only way I know to learn happiness. Happiness and strength cannot come from
circumstances or other people, really. We must find it in ourselves, and let it flow
out of us.
My Story - Stefanie
My name is Stef and I am almost 25 years old. For as long as I can remember, I have
always felt pain. Mum tells me that when I was little, I used to say "ow" and complain
when she patted me lightly. She never understood how a light touch could be hurting
me. I've ground my teeth since I've had teeth, and have suffered with sensitive teeth
for as long as I can remember.
At school, I was bullied a lot and had few if any friends - I also suffered badly
from cold sores which made me the butt of many jokes. Because I was very petite,
young looking and lacked stamina, other kids would make fun of me on an almost constant
basis. I went home from school sick a lot. Luckily my Mum has always believed me when
I said I was sick, even if she didn't always understand how or why I could be in so
much pain for no apparent reason. I really was sick however, although it wasn't from
a virus or anything - I think I used to worry myself sick.
About the age of 10, I got the first of the joint problems I would have yearly from
then on. Initially, it was a knee joint, then a couple of years trying to fix a
bothersome ankle, then same with an elbow and my jaw joint. At 15, I was diagnose
with TMJ and had a splint made. This splint turned out to be the worst thing I
could've had made for me, and a new dentist replaced this splint and told me (at 17)
I had 2 years before I had to go back for braces. Six months later, after a few
particularly stressful months, I went back to the dentist who told me to come back
asap - 6 weeks wasn't quick enough for him, simply because of the damage I had done.
I was one of the worst grinders he had ever seen and he had been a TMJ specialist for
I moved 800 kilometers away from my family to get the braces, and for the two and a half years
away from them I spent much of my time sick. I was unable to turn on a shower myself,
or dry myself, and sometimes dressing was beyond me. One GP did mention after a
multitude of tests it could be FMS, but research and discussions with a rheumatologist
amongst others led me to believe I either didn't have it or it wasn't a real disease.
It has been 6-7 years since that first diagnosis, and I have been tested for Lupus 6
times, various types of arthritis 3-4 times, and have discovered I am also really
allergic to dust mites and Penicillin. I have invested a lot of money and time into
various cures, including expensive dust mite covers and protectors (they help
immensely). I have seen various natural health experts, and have had several
operations. These include:
Laparoscopy - this found endometriosis but has not helped the cramping etc, which I
still suffer from.
Arthroscopy - this was for a meniscal cyst, one of the biggest my specialist had seen
at 2.5cm. This operation eventually resulted in Osteoarthritis.
Sinus/Rhinoplasty - for chronic sinusitis.
Sadly it has not worked as well as hoped, but I can at least use nasal sprays with
limited success now.
I have spent more time at home being sick than I ever have at a job, I didn't work at
all while at school because I wouldn't have coped, and am currently on a disability
allowance. In recent days my pain levels have increased dramatically, but I am unable
to take much in the way of NSAID's as I am going to have a gastroendoscopy and
colonoscopy in the coming months - this is to look for the possible IBS symptoms I may
have as a result of FMS. Most mornings I struggle to get out of my bed, simply because
my body is so incredibly stiff and sore and moving it is agony. I eventually work it
up to a point where I can get up, but doing much beyond that is pretty much a joke.
I have read many, many stories about FMS sufferer and one thing I've noticed in a
majority is how many have been forced to give up their previous activities. I guess
I am lucky in I've never been able to experience having a busy job or anything like
that, and you can't miss what you've never had. My goal this year was to diagnose
me and I've achieved that. I'm happy knowing it's not in my head, and I'm okay with
knowing I won't ever be able to work like other people do - at least I know I'm not
making it up, it's all real and that is such a relief.
In the 7 years since I first heard about FMS, the wealth of resources on it has
increased so much that I don't feel alone anymore. I feel that reaching out to those
who understand online makes the pain so much easier to deal with. Also being back
with my family and having a boyfriend who cares about me (unlike the abusive
boyfriend I had when I had braces) has made it easier to deal with the pain, even
though the pain is worse now than it was then - I can get through it if I have the
support of good people.