What were you like before you got sick? | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

What were you like before you got sick?

snowdonia92

New Member
What were you like before you got sick? What's your story?

1997: I had just finished graduate school at a prestigious university (snooty place!) and was in the first year of working at my new job. I was a runner, fitness enthusiast and overall high achiever. I almost never, ever took naps or was tired. In fact, I was almost never, ever sick and if I was I could almost always continue to work/go to school if I was.

Before this time I was always working out too and very, very healthy.

In 1996 I started to feel very tired at the end of the day for no reason. The doctor told me I was just depressed, but I knew this did not feel like depression, it felt like exhaustion- total exhaustion.

In 1997 I got a very bad case of food poisoning and was never the same since. I had to go on medical leave two months later and eventually had to quit and move across the country and live with my parents at 27.

This illness is such a HUGE departure from what I am and who I was that it amazes me and maddens me to no end that some people think I am faking it or am really not sick. Are you kidding me???!! I have missed out on so much and have suffered so much, why would I fake this???

I would love to here about you all and how you were before you got sick and what your story is.

Thank you.
 

Nanie46

Moderator
It was Fall 1986: I was working as an RN on the 3-11 shift in the Obstetrics Dept of a small hospital and taking care of my 2 small children.

I developed a bad respiratory virus and kept working 9 days in a row while sick, due to lack of staff. Within weeks, I developed a constant ache in my right hip, which within weeks progressed to constant throbbing in every joint in my body.

Afer several weeks of that, the FM settled into it's chronic phase of pain, stiffness, soreness and sleep disturbance.

I tried a couple meds back then and stopped them due to side effects. Dr's didn't know much about FM back then (that sounds funny since most still don't!)

After that I just kept working and taking care of my kids because I had to. I never did take pain meds. I just try to keep plugging.

I worked full time until 2000, then part time until 2002. Now I just work occasionally and I care for my Grandchildren several days a week.

For 20 years I searched for a Dr who would believe that I got this from a virus and would treat it that way. Thanks to the internet I found that Dr in 2007. I exercise at Curves and now take Famvir and follow an elimination diet. I have seen about 50% improvement.
 

snowdonia92

New Member
Thank you Nanie for replying. :)

If I may ask, what anti-viral did you take. I am just about completely convinced that CFIDS is caused by a virus too and that it laid somewhat dormant in my body until the food poisoning episode- much like the FM did for you until after the URI.
 

Sleepyby8

New Member
On May 22, 1998 my 9 month old daughter died of heart failure and I experienced unrelenting grief while still taking care of my two young surviving daughters and being a full time housewife. I had always been very healthy, active and had boundless energy so I thought that I would return to that state once I worked through my grief. However, in May 1999 I came down with Fifth Disease (a childhood virus which causes high fever, rash and joint pain) and was right down in bed for two weeks in horrible pain. The doctor's said the joint pain could last for 2-3 years. I've had the aches and pains ever since but wasn't diagnosed with FM until December 2005.

It makes me sad to think about all the dreams and hopes I had prior to this DD that I'm not sure I'll realize. I had dreamed of going back to finish my degree in nursing and working in peds or ob. Now I have very little energy for anything anymore and always hurt. I feel bad that my 5 year old son has always known me this way and didn't get to experience the more energetic me that my older daughters still remember.

However, I am just thankful that I am able to do what I can and be there for them as much as I can. I still don't pace myself well and tend to go "full out" when I'm having a good day and then paying for it for 2-3 days.

I hate taking medication so right now I'm only on Lexapro and taking OTC pain medication as needed. I stretch, use relaxation, try to walk each day, take long showers and try to rest when I can and am joining a chronic pain management group in September (had my evaluation with the psychologist today to get my ok to join). I'm always researching new treatments and ideas and love this site to feel out others with FM about topics.

Thank you for this post. It feels good to share our stories!

Hugs, Carrie

 

snowdonia92

New Member
Carrie,

I am SO sorry about your daughter. It's interesting because last night I was reading about research that has scientifically proven that emotional trauma is retained on a cellular level in our bodies. I wonder if this has happened to you too?

I can understand your feeling about your 5 year old not knowing the "real" you. I don't have kids, but my majority of my neices and my nephew have never know the "real" me. In fact, one of my neices calls me "burn out" because I'm always burned out. She doesn't know that it's a sad thing to call me and her parents think I'm faking this so they probably support it. :-(

I really thank you though for sharing your experience and your story. Our stories are important and I think it's so important to remember who were were before this.
 

Nanie46

Moderator
I take Famvir 500 mg, three times daily. I have been taking it for 3 1/2 months.

The delayed food allergy testing and subsequent elimination diet has been the most eye opening improvement for me. It has decreased my soreness, stiffness, brain fog etc. You can read my previous posts about this if you are interested.
 

msullivan

New Member
Up until February '04, I was just a normal wife and mom. I was busy working (I am a respiratory therapist at a local hospital) and raising my then two-year-old son . I loved playing softball, being outside, just doing the normal everyday stuff. Then I came down with some kind of virus. It kept me down for a couple of weeks, because it caused my asthma to flare up. I haven't been the same since. I started having these "spells" where I would ache all over and have a sore throat and low-grade fever. It would last anywhere from a few hours to a few days. It would just come out of nowhere. And it would completely exhaust me.

I went to my doctor several times over the next several months. I had every kind of blood test run and everything was normal. Finally, after almost two years, a sleep study helped us figure out what was going on. The neurologist diagnosed me with FM.

I am not the same person at all. I had to quit playing softball, which I really miss. I can't play with my son outside like I always planned on. I couldn't wait to teach him how to play baseball, basketball, how to fish. I couldn't wait to take him to the park to play on the playground. I do what I can, but I don't last very long, which usually gets him upset.

I am not the best wife. I have no energy to cook dinner every night. I wake up grumpy, because I don't sleep much.
I don't take care of my husband the way a wife should, if you know what I mean. But, luckily, I have a wonderful husband who tries to understand.

But, I just try and do the best I can, and that's all I can do. I have learned to rest when I'm really tired. That it's o.k. if the house isn't always clean.

I don't always like the person I've become, but I am learning to live with myself. I can't change it, or turn back the clock, so all I can do is pick myself up and fight the good fight.

Thank you all so much for your support. It really helps to talk about this.

 

snowdonia92

New Member
Prickles,

I sure am sorry to hear of all you have had to endure. You have suffered more than most people do in a life time.

Good for you to try to keep truckin' whenever possible, you are obviously a tough person and very strong willed.

Thank you for sharing your story.
 

snowdonia92

New Member
Thank you for sharing your story. I know you have and do suffer. :-( Keep telling your story so people know what a LOSS these diseases cause and because your story is important.
 

snowdonia92

New Member
Thank you for the information on the anti-viral and the diet. I will follow through on these two things with my new holistic doctor.
 

snowdonia92

New Member
Erik,

You have GOT to be kidding me! What is wrong with people that are saying this to you?

You are sick, I believe you. WHY would you give up your life for THIS?!!

I really hope that things get better for you very soon. Please share your frustrations any time.
 

TeaBisqit

Member
Erik, I'm experiencing the same thing with family right now. They flat out told me I am faking the illness, it doesn't exist, and there are people in the world with worse diseases and I should shut up. So I know exactly what you're talking about.

My story:

1990-91, I was in college. Top of my class, Dean's List, Straight A's. I was working out at a gym two and half hours a day and coming home to do some more. I was a workoutaholic. Loved it. I was dating, I had a best friend, I had college friends. I had a real life. I graduated with an Associate in Secretarial Science and a degree in Office Technology. Two months later, while I was going on job interviews and dating, I caught the illness from one of the guys I was dating. End of my life. Within a week, all the symptoms were on me, particularly brain fog, insomnia, short term memory loss, fatigue like I hadn't slept in a million years. Swollen glands, swollen spleen, enlarged liver, encephalitis that landed me in the hospital on IV antibiotics. I ended up two years bedridden, two years after that with about fifteen minutes of energy a day. And then it went housebound for years and years. And that's where I'm still at now.

I had a real life once. And I was happy with that life, and it was taken away from me by this disease. And I have not been able to find a way to beat it in all these years.

I used to be fearless, strong, independent, and the kind of person you wanted around you in a crisis. I was reliable.

Now, I'm afraid of my own shadow, I am unfortunately stuck dependent on relatives, and I can't be reliable because I never know how I'm gonna be.

 

snowdonia92

New Member
I am sorry to hear that your family is being so super dispasionate about your illness that YOU are suffering from. What in the hell is wrong with our society that it's OK to totally dismiss suffering just because you don't understand it. Remember though that until the 1950s multiple sclerosis was considered to be a "psychiatric" disease.

I believe that you WILL be who you once were again, only better, truly.
 

Heald

New Member
Wow, I can relate to everyone. I was OK until I slipped on ice in 2000. Haven't been the same since. As a result of the fall, I have bulging disks. I notice I was tired all the time. I would always fall asleep in the car. I would tell my husband I just didn't feel well. Felt like flu some days, migrane, just out of it. Doctors kept saying I was depressed or it was all in my mind.

One day I was talking to a cousin and she was sharing her illness with me and told me the name of it. She shared how she couldn't work many days. I looked fibro up on the internet. As I started reading the symtoms, I just cried and cried because finally, I could put a name to what I thought I had.

I went to see my pain doctor and asked him to test me and I had all 18 trigger points. Then the workers comp battle begain. After 3-4 years of fighting that I just wasn't depressed, they settled on lower back and fibro. I was deemed to be 25% disabled and settled for medical and the option to reopen my case. IWIF pays for all of my medical related to my back and fibro. To God Be the Glory!

I am still experiencing new things with fibro. Sometimes it's too much to handle. I'm trying to educate my husband. Although he is supportive, he really doesn't understand how you can feel pain everyday.

I came across the site last week and was so thankful to be able to talk with people that understands and to find out how many of us are out there.

Please let me know more about the elimination diet.

Thankful to you all!

Heald
 

hubcap_halo

New Member
Everyone,

These stories are so familiar. I can feel them in my chest.

Erik & Seabisqit--and everyone--I've had so many doctors, friends and family hint or insist outright that I'm just depressed. It's amazing. I've been in a terrible relapse for nine months, if I work part time for just a couple of days I get a flare of my sinus infection or just fevers. Even my most understanding friends hint I'm just depressed.

And EVERYONE has what they think is the answer. "You just need to do more yoga. You just need to get your mind off it. You just need to go back to work..." and on and on.

MY STORY
It was 1995. I was living in Seattle. Working as a grip and as a bartender. I made zines, played music, studied acting, and went out all the time. I'd lived in Prague. I'd finished an English degree. Then on December 8, 1995
I got a bad cold which lasted a month, and turned into a sinus infection and mono and never went away.

In highschool and college I got all A's, but I still partied a lot and had fun. I felt like I could do anything. Obviously I pushed myself too hard, but I never dreamed it would be an illness that had no cure.

People think I'm the biggest recluse, but mostly it's the illness. And I HATE making a plan that I have to break.



 

bigmama2

New Member
this is the only post that has made me cry. i relate to many of the stories here. For me, i am better off when i dont think of who i used to be. it is too painful.

sorry to be such a bummer, but it is my 2 cents on this subject.

hugs to all,
bigmama2
 

hermitlady

Member
I remember back to my late teen years and often feeling bone tired. I've always needed 8-10 hrs of sleep. I also know now that I always had a problem w depression, even as a child. I just didn't know it, I was always easy to cry and got upset over the smallest things. I also had zero self-esteem (still do).

I went to college and had fun and was quite active, altho I was never an exerciser cuz I could never seem to get past the exhaustion phase. I married in '85 and had my daughter in '92, then my son in '95. I remember from about 1982 and on I would often feel as if I had the flu, achey and tired without a fever.

In '96 we found out our daughter was devel delayed, mildly autistic and had psychiatric/behavioral problems. I was and still am under a tremendous amount of stress....major depression kicked in about then. It's all just kept getting worse over the last 12 yrs or so.

I was never a high energy person and always had a hint of depression lingering over me....maybe it all just progressed due to the stress and took over my life. I did have mono when I was 14, in bed for a month. Maybe that hid out in my body somewhere and has something to do w the FM/CFS?

I too worry about my kids having such a "dud" for a mother. I am so envious of others who seem to just have boundless energy and are enjoying their life. Most of the time I feel like I am being tortured:(
 

Bunchy

Member
I had just finished my first year at University having had a great time and was so hopeful and excited about the future.

I had dreams about an interesting career, children, travelling worldwide - the world was my oyster.

Then illness struck - bye bye life....:-(

Love Bunchy xxx
 

Didoe

New Member
about life, people, ideas

Now it's a daily choice to remain alive and functioning
All I write are journal entries and lists...lists of tasks, lists of things to do, lists of things i need, lists that
document i'm still alive, if only to write lists. Worry constantly about my economic future, and my children's future considering the path the U.S. government is taking us all down.
If I'm not home worrying in one room, I'm out seeing doctors.
I have absolutely no interest in returning to work for the nasty self important monsters I work for. I pray everday that God has mercy on me to help me obtain LTD and part-time work that is gentler and productive in my waning work years.
 
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