Reaching Out's Survivor's & Caregiver's Stories

My Fibro/CFS Story

In 1986, when I was ten years old, I was diagnosed with Foibrositis and hypoglycemia. This came after two winters of felling stiff all over, not being able to sleep deeply anymore (mainly due to pain caused by the cold) and severe pain in the top of my back, shoulders, and neck; also, feeling faint and blacking out when I was hungry throughout the last two years. I finally told someone when these things carried on into the summer and I couldn’t play with my friends as much as I wanted to.

During the following 5 years, I was lucky to have the support of my friends and family who helped me follow a strict pacing and light exercise routine until I could run again! Although staying in at school break times in the winter and wearing a cardigan on windy summer days was not my idea of fun! Due to my lack of knowledge about this illness, I believed that I could control the symptoms and live a normal life, or so I thought....

When I was 19 years old the symptoms came back with a vengeance. I decided that I would look up Fibrositis and see how I could help myself. This came with the surprise that the illness didn’t seem to exist anymore! Little did I know the name had been changed to Fibromyalgia (I found out about 8 years later). Not knowing what to do I became very stressed because I felt I wasn’t “me” anymore. I was then diagnosed with depression.

So, I just carried on living as I had when I was ten. Pacing, light exercise, as well as early nights wrapping up warm, with a duvet, five blankets, a sleeping bag and two hot water bottles on my bed! It seemed to work until the night I was awake all night with severe pain all through my body just from being cold; that is something I will never forget.

Trying to increase my exercise gradually and pacing myself barely worked this time. I couldn’t exercise as much as I had when I was a child and could never seem to get rid of the stiffness an pain. The brain fog set in. I couldn’t think straight, would lose track of time and even what I was saying. I had to leave college because I had to keep taking days off and couldn’t cope with the workload.

About a year after this, I managed to pace myself a bit better and started a job which I kept for one and a half years. During this time, I injured the bottom of my back; I couldn’t exercise and found that the symptoms that never went away just got worse and new ones were added. I now had pain in the bottom of my back and problems with my knees when sitting. If I didn’t move them around when ti went to stand up they were so stiff and painful that I could barely move them let alone stand.

I changed jobs to one that allowed me to sit and move around more. For the first six months this helped and I was almost back to my old self. Then I started to have what Ithought was an almost constant cold. I put it down to lack of sleep. But, a few months later I had to start taking days off work due to an almost constant fatigue. As I thought fibrositis didn’t exist anymore, I thought I was just coming down with a bad flu but it never turned up! I eventually lost my job due to taking too much time off sick.

This led to my symptoms getting better again! Although this time it took two years to get well enough to work. About six months before this I did have a very bad case of the flu with a week in bed and the next two weeks being virtually housebound. I now believe this is when my ME/CFS started. I managed to recover from the flu after about three months of mainly staying in bed or resting in a chair while trying to read booksand having to rest after reading a few lines!

Then I noticed that when I tried to go out I felt exhausted before I even got to my front door. But, I struggled on, putting it down to the fibrositis I had as a child (though I never got exhausted walking to my front door before), or just being unfit. After many years of literally walking everywhere, I had no choice but to start getting the bus.

I rested a lot and things seemed to improve. That is when I got a job. This time I was on my feet a lot but being used to this in the past, employment, I thought nothing of it. That was, until my legs started to swell up. A pattern started to develop; within half an hour of getting to work, I was so swollen that my trousers that had been loose had become very tight. This would disappear after half an hour of sitting down when I got home. I would also need to take extra breaks to rest a lot because I felt exhausted just from standing still.

After three months, thinking that being on my feet was the cause of the exhaustion, I changed this job to one where I would be sitting down all the time. Also, I started to get dizzy spells while standing and had to sit down a lot again. Then, I seemed to have another bout of the flu but with no cold symptoms; this utterly confused me. Once again, I was laid off.

I then started to struggle walking up stairs; I would be out of breath and exhausted when I reached the top. Next, I started to barely sleep at night and was sleeping more during the day. I also started to struggle to get dressed, normally not being able to start this until four o’clock p.m. most days. I began to feel depressed, thinking people thought I was lazy. I began to believe this, but, I knew I couldn’t do the things I wanted to do.

I tried to do as much exercise as I used to, but really struggled with it. I would often get exhausted just from doing sit ups! I put this down to lack of sleep and generally being unfit. While on a “good” day I tried to jog and earned myself knee injuries in both legs.

I then allowed myself to get complete rest for a few weeks and felt better. Because of this, I could go out more. I then had knee pain for the next year which only resting would help. Both these things were totally opposite of what I had experienced before.

I got another job where I could sit down a lot. Again I felt better at first, then the swelling and exhaustion came back. The pain in my knees got a lot worse. As things became more of a struggle, I began to feel depressed again. I eventually resigned from my job since I was missing weeks at a time due to what I thought was just depression.

From then my memory goes blurry. I do not remember much of the next year apart from that I was in bed a lot for the first six months. I went to my doctor and expalined that I couldn’t get out of bed although I wanted to. After not even asking me why I couldn’t get out of bed I was diagnosed as having clinical depression and was signed out of work. I left with the words, “Why don’t you just try to get out of bed?” ringing in my ears.

After that, I did ‘try’ to get out of bed which normally took me three hours and then all I could do was sit on the sofa. I could barely move due to extreme stiffness and excruciating pain, much like I had experienced on that cold night many years ago. I could barely walk, eat, talk or wash. Even going to the toilet was a complete struggle. I could manage nothing more than this. I would stare into space for hours from sheer exhaustion of having to force myself to sit up. I knew this wasn’t depression but didn’t believe it was fibrositis either.

The only time I went out was to get a sick note from my doctor once a month for the next six months. It took three weeks each time just to ‘recover’ from doing this. At the end of six months I told him I could barely get up from the sofa and was getting to sleep between four and five in the morning. He then diagnosed me with insomnia saying that this was a result of my depression.

Knowing my doctor was wrong, I decided to sort it out myself. I stopped forcing myself to get out of bed and just ‘listened to my body’ like I had many years ago after the first bout of flu. It took nearly three months but I was able to sit up in bed after an hour (Though an hour later I had to lie down again!) Very gradually I could sit up for longer periods though I was still bedridden.

Eventually, on some days, I was able to leave the room without falling over with dizziness and could sit n the sofa without as much pain, though I was still like a zombie when I did this. It would take me abotu six hours but when I could get out o fbed, I managed to wash my face ans even brush my teeth! Some days I would also manage to go into the kitchen to eat the lunch my partner made me. I then started to realize I needed to go to my doctor to find out what was really wrong with me.

When I did, I told him how I was mainly bedridden and when I did sit on the sofa I was in pain and like a zombie. I was surprised when he said I had :Chronic Fatigue Syndrome”. That didn’t sound too bad to me; just chronic fatigue, I thought. I already knew I had that but what else did I have? I asked, “Does that mean I have severe insomnia?” He agreed, then said nothing more. I left the room in a state of high confusion.

The next six months led me to feeling a little better. I was still mainly housebound and had to rest for hours every day. Around this time, I found out that Fibrositis was called Fibromyalgia. I managed to start going out to use the internet at my local library about twice a month. I looked into Fibromyalgia and decided that what I had now must be a chronic version of what I had before, although a lot of the symptoms I had were not listed for this illness.

Six months later, I came across Chronic Fatigue Syndrome, and though I had been diagnosed with this, I didn’t want to believe this is what I had. It didn’t match up to what I had been told by my doctor. He gave me the impression it wasn’t THAT bad. After researching for another six months I began to accept the truth. Though I hated the idea of never being as active as I once was. The future with this illness seemed bleak.

Just after this, I went on holiday and caught the flu. When we got back, I was bedridden for a few months, then almost continually housebound. Then, we got broken into and I became agoraphobic because the “boy” that broke in knew what I looked like and where I lived. My memory really fails me here. I vaguely remember sitting on the sofa again with the stiffness and excruciating pain. I must have been like a zombie for much of this time aside from the anxiety.

It took a very long time, but about a year ago I decided there is no way that I am going to give in to this illness so I started to fight back. I looked into CFS again at the library, got books on it. Through overdoing it (I do not recommend this to anyone), I got my life back on track. I joined a great email support group via Reaching Out. This was really the turning point. I began to accept that although Imight never be as active as I used to be I am still a person who counts.

I have recently (July 2006) taken up pacing and am back to being almost completely housebound again due to overdoing it. This time my whole day isn’t spent like a zombie! I rest hourly (well, I try to remember) and I now can do more menial tasks. I no longer struggle to hold a toothbrush and can have a shower completely by myself once a week. I cannot walk much due to the pain and get exhausted just reading a paragraph. These are small sacrifices when I pace myself!

I am no longer upset that I have lost the ability to dance for now. I have rediscovered my love of writing. I do one book review per month for the Reaching Out newsletter and send copies of these to my local support group newsletter. This is something I believed I could never do. I am also able to have pen pals again which has really helped in making me feel validated. I believe pacing myself and using disability aids are the things that enable me to do this.

Once I accepted that I am ill life began to take on some meaning. Pacing has helped me see that I can control how this illness affects me to a small extent. So, I look forward to my life getting even better once I learn to pace myself properly; also, to being the person I have always wanted to be (though not physically). Through having CFS, I have learned that I need to stop putting others first ALL the time and to put myself first for a change. Though I may never fully recover, I know I can give myself a better quality of life and a sense of achievement if I learn to pace myself as I did many years ago at the age of ten.

	My Fibro/CFS Story In 1986, when I was ten years old, I was diagnosed with Foibrositis and hypoglycemia. This came after two winters of felling stiff all over, not being able to sleep deeply anymore (mainly due to pain caused by the cold) and severe pain in the top of my back, shoulders, and neck; also, feeling faint and blacking out when I was hungry throughout the last two years. I finally told someone when these things carried on into the summer and I couldn’t play with my friends as much as I wanted to. During the following 5 years, I was lucky to have the support of my friends and family who helped me follow a strict pacing and light exercise routine until I could run again! Although staying in at school break times in the winter and wearing a cardigan on windy summer days was not my idea of fun! Due to my lack of knowledge about this illness, I believed that I could control the symptoms and live a normal life, or so I thought.... When I was 19 years old the symptoms came back with a vengeance. I decided that I would look up Fibrositis and see how I could help myself. This came with the surprise that the illness didn’t seem to exist anymore! Little did I know the name had been changed to Fibromyalgia (I found out about 8 years later). Not knowing what to do I became very stressed because I felt I wasn’t “me” anymore. I was then diagnosed with depression. So, I just carried on living as I had when I was ten. Pacing, light exercise, as well as early nights wrapping up warm, with a duvet, five blankets, a sleeping bag and two hot water bottles on my bed! It seemed to work until the night I was awake all night with severe pain all through my body just from being cold; that is something I will never forget. Trying to increase my exercise gradually and pacing myself barely worked this time. I couldn’t exercise as much as I had when I was a child and could never seem to get rid of the stiffness an pain. The brain fog set in. I couldn’t think straight, would lose track of time and even what I was saying. I had to leave college because I had to keep taking days off and couldn’t cope with the workload. About a year after this, I managed to pace myself a bit better and started a job which I kept for one and a half years. During this time, I injured the bottom of my back; I couldn’t exercise and found that the symptoms that never went away just got worse and new ones were added. I now had pain in the bottom of my back and problems with my knees when sitting. If I didn’t move them around when ti went to stand up they were so stiff and painful that I could barely move them let alone stand. I changed jobs to one that allowed me to sit and move around more. For the first six months this helped and I was almost back to my old self. Then I started to have what Ithought was an almost constant cold. I put it down to lack of sleep. But, a few months later I had to start taking days off work due to an almost constant fatigue. As I thought fibrositis didn’t exist anymore, I thought I was just coming down with a bad flu but it never turned up! I eventually lost my job due to taking too much time off sick. This led to my symptoms getting better again! Although this time it took two years to get well enough to work. About six months before this I did have a very bad case of the flu with a week in bed and the next two weeks being virtually housebound. I now believe this is when my ME/CFS started. I managed to recover from the flu after about three months of mainly staying in bed or resting in a chair while trying to read booksand having to rest after reading a few lines! Then I noticed that when I tried to go out I felt exhausted before I even got to my front door. But, I struggled on, putting it down to the fibrositis I had as a child (though I never got exhausted walking to my front door before), or just being unfit. After many years of literally walking everywhere, I had no choice but to start getting the bus. I rested a lot and things seemed to improve. That is when I got a job. This time I was on my feet a lot but being used to this in the past, employment, I thought nothing of it. That was, until my legs started to swell up. A pattern started to develop; within half an hour of getting to work, I was so swollen that my trousers that had been loose had become very tight. This would disappear after half an hour of sitting down when I got home. I would also need to take extra breaks to rest a lot because I felt exhausted just from standing still. After three months, thinking that being on my feet was the cause of the exhaustion, I changed this job to one where I would be sitting down all the time. Also, I started to get dizzy spells while standing and had to sit down a lot again. Then, I seemed to have another bout of the flu but with no cold symptoms; this utterly confused me. Once again, I was laid off. I then started to struggle walking up stairs; I would be out of breath and exhausted when I reached the top. Next, I started to barely sleep at night and was sleeping more during the day. I also started to struggle to get dressed, normally not being able to start this until four o’clock p.m. most days. I began to feel depressed, thinking people thought I was lazy. I began to believe this, but, I knew I couldn’t do the things I wanted to do. I tried to do as much exercise as I used to, but really struggled with it. I would often get exhausted just from doing sit ups! I put this down to lack of sleep and generally being unfit. While on a “good” day I tried to jog and earned myself knee injuries in both legs. I then allowed myself to get complete rest for a few weeks and felt better. Because of this, I could go out more. I then had knee pain for the next year which only resting would help. Both these things were totally opposite of what I had experienced before. I got another job where I could sit down a lot. Again I felt better at first, then the swelling and exhaustion came back. The pain in my knees got a lot worse. As things became more of a struggle, I began to feel depressed again. I eventually resigned from my job since I was missing weeks at a time due to what I thought was just depression. From then my memory goes blurry. I do not remember much of the next year apart from that I was in bed a lot for the first six months. I went to my doctor and expalined that I couldn’t get out of bed although I wanted to. After not even asking me why I couldn’t get out of bed I was diagnosed as having clinical depression and was signed out of work. I left with the words, “Why don’t you just try to get out of bed?” ringing in my ears. After that, I did ‘try’ to get out of bed which normally took me three hours and then all I could do was sit on the sofa. I could barely move due to extreme stiffness and excruciating pain, much like I had experienced on that cold night many years ago. I could barely walk, eat, talk or wash. Even going to the toilet was a complete struggle. I could manage nothing more than this. I would stare into space for hours from sheer exhaustion of having to force myself to sit up. I knew this wasn’t depression but didn’t believe it was fibrositis either. The only time I went out was to get a sick note from my doctor once a month for the next six months. It took three weeks each time just to ‘recover’ from doing this. At the end of six months I told him I could barely get up from the sofa and was getting to sleep between four and five in the morning. He then diagnosed me with insomnia saying that this was a result of my depression. Knowing my doctor was wrong, I decided to sort it out myself. I stopped forcing myself to get out of bed and just ‘listened to my body’ like I had many years ago after the first bout of flu. It took nearly three months but I was able to sit up in bed after an hour (Though an hour later I had to lie down again!) Very gradually I could sit up for longer periods though I was still bedridden. Eventually, on some days, I was able to leave the room without falling over with dizziness and could sit n the sofa without as much pain, though I was still like a zombie when I did this. It would take me abotu six hours but when I could get out o fbed, I managed to wash my face ans even brush my teeth! Some days I would also manage to go into the kitchen to eat the lunch my partner made me. I then started to realize I needed to go to my doctor to find out what was really wrong with me. When I did, I told him how I was mainly bedridden and when I did sit on the sofa I was in pain and like a zombie. I was surprised when he said I had :Chronic Fatigue Syndrome”. That didn’t sound too bad to me; just chronic fatigue, I thought. I already knew I had that but what else did I have? I asked, “Does that mean I have severe insomnia?” He agreed, then said nothing more. I left the room in a state of high confusion. The next six months led me to feeling a little better. I was still mainly housebound and had to rest for hours every day. Around this time, I found out that Fibrositis was called Fibromyalgia. I managed to start going out to use the internet at my local library about twice a month. I looked into Fibromyalgia and decided that what I had now must be a chronic version of what I had before, although a lot of the symptoms I had were not listed for this illness. Six months later, I came across Chronic Fatigue Syndrome, and though I had been diagnosed with this, I didn’t want to believe this is what I had. It didn’t match up to what I had been told by my doctor. He gave me the impression it wasn’t THAT bad. After researching for another six months I began to accept the truth. Though I hated the idea of never being as active as I once was. The future with this illness seemed bleak. Just after this, I went on holiday and caught the flu. When we got back, I was bedridden for a few months, then almost continually housebound. Then, we got broken into and I became agoraphobic because the “boy” that broke in knew what I looked like and where I lived. My memory really fails me here. I vaguely remember sitting on the sofa again with the stiffness and excruciating pain. I must have been like a zombie for much of this time aside from the anxiety. It took a very long time, but about a year ago I decided there is no way that I am going to give in to this illness so I started to fight back. I looked into CFS again at the library, got books on it. Through overdoing it (I do not recommend this to anyone), I got my life back on track. I joined a great email support group via Reaching Out. This was really the turning point. I began to accept that although Imight never be as active as I used to be I am still a person who counts. I have recently (July 2006) taken up pacing and am back to being almost completely housebound again due to overdoing it. This time my whole day isn’t spent like a zombie! I rest hourly (well, I try to remember) and I now can do more menial tasks. I no longer struggle to hold a toothbrush and can have a shower completely by myself once a week. I cannot walk much due to the pain and get exhausted just reading a paragraph. These are small sacrifices when I pace myself! I am no longer upset that I have lost the ability to dance for now. I have rediscovered my love of writing. I do one book review per month for the Reaching Out newsletter and send copies of these to my local support group newsletter. This is something I believed I could never do. I am also able to have pen pals again which has really helped in making me feel validated. I believe pacing myself and using disability aids are the things that enable me to do this. Once I accepted that I am ill life began to take on some meaning. Pacing has helped me see that I can control how this illness affects me to a small extent. So, I look forward to my life getting even better once I learn to pace myself properly; also, to being the person I have always wanted to be (though not physically). Through having CFS, I have learned that I need to stop putting others first ALL the time and to put myself first for a change. Though I may never fully recover, I know I can give myself a better quality of life and a sense of achievement if I learn to pace myself as I did many years ago at the age of ten.
Tracy

	Hi Everyone! All my life I have been lower on energy than 'most' people...I remember as a child having the doctor repeatedly checking my thyroid for problems because of low energy. My sleep was always difficult. Later in life, after I had my children (18 years ago), the body pain and symptoms became more apparent. I just marked it up to having small kids, full of stress and a difficult marriage (actually, I was so naive that I just thought life was tough all the time). After getting a very difficult divorce in 1998, the symptoms became steadily worse. I was trying to work doing physical labor jobs, single mother and a very high stress, and anxiety level. Slowly my body parts started to fall apart. The tendonitis and carpel tunnel were the first things that a doctor could actually diagnose (yes I was starting; the doctor dance of going to everyone and being told there was nothing wrong....) I eventually started a house cleaning Biz, and had a few people working for me. I loved being my own boss and the interaction with clients. I have a college degree but with children and loving being outdoors, I never put the degree to full use. Except I learned how to think and use my brain!!! I had the business for 5 years and was in UNBEARABLE pain all the time. The stubborn bull in me kept pushing and pushing believing that I did not have any other choice but to keep working since I was a single women (I had a live in boyfriend for almost 9 years, but financially and emotionally I was taking care of him mostly, even though I was the one in pain)....I just ended that relationship, but that is another story!!!!) Finally my body just gave out! The Fibromyalgia literally took me down to my knees and I did not have any choice but to stop all work. I knew it was time to start the Social Security disability process. This meant going on State assistance....Yes that can be humiliating, but the program is there for a reason, and I got over feeling guilty. I am very frugal and 'good' with money, with a low mortgage, so I was able to do this. Plus having health insurance from the State was a true blessing!!! It took 2 years with a good Social security disability advocate/lawyer, and I amazingly won my case last August 2005. If you are going to file for disability you MUST have someone do it for you....They charge a fee after you win (if you win), from your back pay. Since I have 'stopped' working, I have had a full time job making myself better. I go to appointments constantly and do a great deal of alternative therapies... Sliding scales with practitioners has helped (you just have to ask)! I started a cut flower business a couple of years ago just to play in the earth for healing the soul. I grow flowers, and place bouquets in jars in front of the house. There is a locked box for people to put their money into as an honor system. I only have flowers out there on days that I have the energy and UMPH. HAPPY DOG FLOWER FARM is its name. I also Dog sit on occasion for the love and extra money. Emotionally I am doing much better, and that helps me deal with the anxiety and body pain better. Hugs to all and thanks for reading my manuscript!!! Katy
Katy

Dianna	Hi, I’m Dianna Johnson, 53 years old, married with no children, but a 6 foot 9 inch tall hubby, Brian and live in Northern Michigan. I was working for the State of Michigan government and after working for about 4 years, I noticed I was hurting all over my joints and body and was taking up to 8 - 200 mg Motrin a day to try to block out the pain. As you can imagine, my stomach was so trashed from the large dosage of Motrin, but couldn’t function without it. I finally went to my family Doctor and told him how badly my hands, fingers, knees, feet and hips hurt. He had the labs drawn and the initial results came back. Dianna, you have either Rheumatoid Arthritis or Lupus! I was beside myself with the answer due to having lost a friend at University of Michigan to Lupus. The secondary labs were drawn and sent to CA and we waited for the results. It was Rheumatoid Arthritis. I went to a Rheumatologist for 3 yr and he only gave me celebrex and tried me on Plaquenil. Sadly I had a reaction and woke up 30 days to the date I started the drug, screaming and itching and had hives all over my body the size of silver dollars! I quit the Plaquenil and also quite going to the Rheumatologist because he wasn’t willing to work with me to find some meds to help me with the pain. In 1998, I found the top researcher and Rheumatologist for Michigan only 10 minutes from my workplace. I have been going to Dr. Fiechtner for the past 8 yr now and with giving myself Enbrel injections twice a week and numerous other oral meds, such as Skelaxin for muscle spasms, Ultram for pain, and Bextra. I was finally in remission for Rheumatoid Arthritis and my Rheumy was so happy. Well I told my Rheumy that I was still hurting a lot and my arms felt like someone had punched me with their knuckles and I had knots in my shoulders and I hurt all the time. I was not able to sleep and get rested and was having more trouble with my 90 minute 100 mile round trip drive a day and even more trouble concentrating at my job. Accuracy was critical with the job and so this was getting very serious. At that time my Rheumy started pressing spots on my body and I wanted to sucker punch him and was howling with pain. This was in 2000, and my Rheumy looked at me with a sad expression and said Dianna your RA is in remission but sadly you also have Fibro and the spots I touched are the pressure points that hurt when you have Fibro. I just wanted to cry! We went thru a series of meds all of which I was deathly allergic to, Topamax, Zonegram and Lexapro too. I now have a slight tremor in my left hand from the Lexapro and I only took one pill before bed for 3 days and now I will have the tremor from nerve damage and drug allergies! Finally, 2 years ago my Rheumy said let’s try this very old and reliable antidepressant Trazadone and see if it will help you with the Fibro pain and give you some rest. The very first nite I took the med I woke up because I had NO PAIN! Yehaw! Now I take meds for my stomach to coat it from the strong meds. I jab myself twice a week with Enbrel injections to keep my RA in remission and really load up at nite so that I can sleep with little or no pain! During this long, 10 year journey, as others have mentioned, I was being hassled at work for missing time. I was treated like a kindergartener at age 46! I was threatened that I would be fired or disciplined for missing too much time. I had the Union to protect me, but each time I had to file a grievance against my bosses, when the Union Steward left, I was called back into the bosses offices and reamed out again and was not allowed to leave their office and was not allowed to call my steward back either! I had only a few months to go till I had my retirement locked in for life. The management was trying to push me so that they could fire me before I would be able to draw my retirement. I was depressed, sick to my stomach in the morning and throwing up in my waste basket and was loosing my energy. By the time I would get home at night my husband Brian would have to meet me at the door and help me walk up the steps! I got so desperate that I even went in for psychological counseling. My personnel file was so thick it was unbelievable. I was told I was “miss-using and abusing my sick and annual leave”, it was weird that I had earned these days and that I was using them for their intended purpose. I was getting worse and my Rheumatologist was very concerned, didn’t know at the time but they were all worried I’d stroke out with the stress and the pain and the meds. Finally, on November 8, 2002, I waited till all my co workers and bosses had left Friday night for the long Veteran’s Day weekend and finished packing up my few things and purged my e mails, shredded many of my personal documents and left the building for the last time. I had only told 2 friends the last day of work that I was leaving for good. I was able to go to Texas the week after I left work and stayed for the winter with my husband in Bandera, TX, the Cowboy Capital of the world! Wow it was warm, dry and the view of the cowboys in town on horses doing banking and all was just unbelievable! I was in heaven. With the stress taken off my shoulders, I was able to rest and get medication to help with the RA and the Fibro. I then filed for SSD and spent the next 3 ½ years working on being approved. I finally hired an attorney and then contacted my US House of Representative and he was able to help me get my SSD after the long 3 ½ years of mega paperwork and hours spent on the phone, in doctors’ offices and in hospitals with so many labs and I was also a guinea pig for RA and for Fibromyalgia drug studies! I would not be here today if it weren’t for my belief in God, my fear of God, because as others have mentioned there were dark times of severe pain when I thought death would be a blessed relief! God brought many people to cross my path to get me through the long dark times. My husband has been so supportive and my college buddy, Safety Brian was also there for me and talked me through my pain. I also have 3 miniature dashunds, Heidi, Dudley James and Axel Rose. I have a 16 year old miniature Siamese cat named Cokie that has been with me through thick and thin as well! One day about a year or two ago I had a friend tell me about this awesome website support group that wasn’t too big and had such great people to help support me with my pain, depression and Fibro. The next thing I knew I had a family of people that believed I was sick, were traveling the same road I was on, and were so loving and caring. I looked forward each day to hear what was happening next! These beautiful sisters were Sparrow, Kar, Cuz, Tammy and others too! I had finally found a new home where I could be me and would be understood. I have severed ties with most of my family about 12 years ago due to the disbelief of my family that I am really sick. I don’t know what the future holds for me, but I do know that all my Outties will be a part of it. These lovely generous and caring ladies also created a home for my Enbrel friends that had been a part of a big drug company sponsored website and support group. When the drug company, Amgen, got all they wanted from us after over 2 years, they cut us loose and we had no where to go. So here we are with the Enbrel Gang group of Outties! I now do as much as I can from my home and computer. I don’t have the energy very often as others have said to socialize much and each trip to the Doctors, my Chiropractor and my Massage Therapist put me in bed or on the couch for a few days due to fatigue! I have become an advocate for legislation to help with more Medicare and medical procedures for all of us. I write letters, fax them, make phone calls and do all kinds of things with my computer to help with Fibro, RA, Cancer and Judeo-Christian values and acceptable TV programming! I never knew how much I could do via computer to help us in the world! I have learned to shop online, pay bills and do my banking online and make friends online! Thank God for my Computer and thank God for my Outtie friends! I love you all!

Sarah	I was a very active and athletic child and teen, participating in competitive gymnastics, cheerleading, track, and I was on a dance company. I always got good grades, had a job since age 15, and loved to hike and rock climb. When I was 14, though, I started feeling fatigued and began having difficulty completing my daily 5-hour workouts that were part of my gymnastics training. After falling ill (most likely with Esptein-Barr, but I was not tested for it at the time), I was forced to quit gymnastics. I remained in my other sports and activities until the end of high school, but even climbing a flight of stairs was getting to be a challenge. I started “graying out” in college when I would stand up, temporarily losing my vision and becoming dizzy. These symptoms only got worse, and new ones appeared. By the time I was 27, I was becoming too tired to make it to work every day, and I lost my job at age 28. I was told by every doctor I went to that it was probably just depression or anxiety, yet depression and anxiety medication only made my symptoms worse. I had normal sleep studies, normal blood work, and seemingly normal vitals. Fortunately, my diagnosis came 3 months after I had to stop working. After 14 years of chronic fatigue and other progressive debilitating symptoms, I was finally diagnosed this past January with POTS, or Postural Orthostatic Tachycardia Syndrome, at Vanderbilt University Medical Center. I actually first learned about the condition on Mystery Diagnosis, a program on the Discovery Health Channel that tells stories of people who went undiagnosed or misdiagnosed for extended periods of time before finally being correctly diagnosed with a rare condition. Since the show aired almost two years ago, there has been a spike in diagnoses for POTS and related conditions, one specifically called NCS, or Neurocardiogenic Syncope. I was originally diagnosed with NCS, but there are differences in opinion among those in the medical community who are familiar with this group of disorders, often called Dysautonomia or Autonomic Nervous System Disorders, as to whether someone can have both POTS and NCS or if they are always separate. NCS is a disorder in which the part of the nervous system that controls the blood pressure does not function correctly. Most NCS patients have low BP to begin with, but for some reason when the patient stands, the brain detects a rise in BP and tells the veins to relax, causing a significant drop in BP, so the brain does not get enough blood and oxygen, which often leads to syncope (fainting). Some faint 20 times a day, some once a year. Patients also can experience pre-syncope, meaning that their brain is getting enough blood ad oxygen for the person to remain conscious, but not enough to function properly, so they experience a wide range of symptoms that can include dizziness, tunnel vision or temporary loss of vision, pressure in the head, headaches, nausea, flushing, trembling, cognitive difficulty, muscle weakness, and many others. Everyone’s symptoms are different which makes it difficult to diagnose. With POTS, the heart kicks in to make up for or prevent the drop in BP, pounding and racing to get the blood up to the brain. When I am lying down, my average heart rate is around 70 bpm, but when I stand up, my heart rate can reach 170+ bpm, just standing in place for a minute or two. The heart is constantly working as though the person were running a marathon whenever they are upright, so patients with POTS often experience chronic fatigue. POTS patients can still experience syncope and pre-syncope, because sometimes the heart can’t quite make up for the low blood pressure, so the symptoms are very similar to NCS, the main difference being the rapid heart rate. The autonomic nervous system also controls the respiratory system, the digestive system, and the body’s temperature among other systems. Some with dysautonomia, including myself, experience shortness of breath and shallow breathing, digestive issues (like IBS), lower than normal body temperature, sensitivity to cold and heat, excessive or absence of sweat, and widespread joint, muscle and bone pain. There are different types of these disorders, and different causes as well, many of which are still unknown. Some begin to experience symptoms following a major trauma, such as a serious illness, surgery, injury, or pregnancy. Some only experience symptoms for a short period of time, and some have symptoms for the rest of their lives. Many get symptoms around puberty and grow out of it by the time they are in their mid-twenties. Mine happens to be secondary to EDS, or Ehlers-Danlos Syndrome, a connective tissue disorder in which the collagen in my tendons, skin, and veins is weak, causing my veins to not be able to constrict properly on their own, in turn causing the drop in blood pressure when I stand up. There is no cure for these disorders, but many of the symptoms can be treated with medication, diet, and lifestyle modifications. Exercise is important to keep the heart from becoming deconditioned, and strong leg and core muscles can assist in keeping the blood pumping evenly throughout the body. Many (including me) also have low blood volume, so becoming dehydrated is especially dangerous for us. Making sure to drink enough fluids AND taking in enough electrolytes (sodium, potassium, calcium, etc.) is key. There are also medications to increase BP, lower heart rate, regulate (to an extent) nervous system activity, increase energy, and increase blood volume. But, as you know, everyone reacts differently to medication, so there is a lot of trial and error to find the right combination of medication that both benefits the patient and can be tolerated. I share this with you because I have read a lot of information recently about POTS/NCS patients having Fibro and CFS (I was diagnosed with CFS at the same time as POTS, and participated in a study looking at the connection between the two), and I have a feeling that these conditions are actually quite common. The problem is that there are no doctors in the Phoenix area (that I know of) who have any experience with these conditions, so it is tough to get a diagnosis out here. I know of 3 others in the state of Arizona who have POTS or NCS. But in states like Minnesota, Tennessee, and Ohio, where there are POTS/NCS experts, there are hundreds of patients who have been diagnosed. I am sort of on a mission to spread the word (when I have time and energy to do so) to others who might have it and to the medical community so that people who are suffering from this can be properly diagnosed and treated. If you think you or someone you know might have this, some great resources you can access are DINET.org and NDRF.org.

	Hello, my name is Linda. This is where you can come to read OUR STORIES. In reading our stories, you might see yourself and be able to relate. Our stories are very personal, and some of us have hidden our identities because a lot of our family, friends and co-workers do not understand or acknowledge our and your invisible illness. This is a place of sharing so please e-mail me with any questions, concerns, or comments. We would also like it if you would like to share your story with us, because this site belongs to you and together our voices will be not be denied.

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	I remember feeling some pain as far back as I can remember. Mostly in the mornings and late at night. I always thought it was joint pain and that is still what it feels like although I now know it is more muscle related. I have always been an "A" type personality and was a go-getter. I actually worked 4 different jobs while going to school ½ day my last semester of High School. Instead of continuing my education, I went straight into the workforce and worked my way up at a small non-profit association, where I had the opportunity to go back to school at their expense. I went to school ¾ time, worked full time and worked a Saturday job. I almost made it through school, but took a break to change careers when I ventured out into sales. I loved sales, loved setting my own hours and doing my own thing. I continued to work a second job and still spent time with my family (by this time my son was about 6 years old). It worked great with his school and my husband's 4 day work week (he worked 10 hour days). The only problem was this sales job was not like your normal sales job. I sold preneed insurance for several funeral homes. I was consistently their number one sales person in the region and really did enjoy helping people make these decisions. A few things happened that changed my entire life. I don’t know how they all fit together or which ones have relevance, but here is what happened… --I fell at work. Slipped on some water that had dripped from a plant. Not a serious fall, but my hip gave me some problems. I didn't pursue this at work in anyway. --The funeral home I was ‘housed’ in was sold and they moved to another location. The new faculty did not have an office for me. They decided my office would be in a corner of the ‘break’ room. Didn’t sound too bad. What they didn’t tell me is that it was also the body room. I had been exposed to formaldehyde in small amounts at the other location, but not like this. Even though it was not a full-service funeral home (meaning that they did not embalm there) the bodies smelled strongly of formaldehyde and to this day I get very ill if I smell it. The kicker of this situation was two-fold: #1 I found out the company was not doing everything legally and began to look into it (they were not sending all the required forms to the purchasers and this was very serious because it fell under the insurance laws and would directly come back on me) #2 I arrived a few days later to a horrible site. ‘They’ had brought over a body on Friday that not embalmed because it was to be a cremation and the family wanted to view the body before this was done. Evidently, they ran out of time and the body was left at this facility instead of transported back to the facility that does the cremation. I won’t go into detail but just let me say…I will never in my life forget the site and smell when I walked in that morning. I left and went to the Insurance department and filed a claim and then went to the unemployment office. During this time, my health was getting bad. I was suffering from aches and pains and felt like I was always on the verge of getting the flu. I was struggling to get up each morning and was exhausted by noon. I begin my doctor journey, which I will expand more on in a few moments. Just to sum up my career, I bounced back, or so I thought! I started working for a small (but very lucrative) brokerage firm. The original owners sold the business in 1999 and I began working for them in 1996. It was pure hell working for them and to this day I wonder why I stayed. The money was unbelievable, the hours were horrible and the abuse was disgusting. We were called names on a daily basis, screamed at, cursed at and I even witnessed a few incidences of physical abuse. I stuck it out and fell prey to their ‘dangling carrots’ in the form of large bonuses, always telling myself that I would leave after the next bonus. (They were as high as 10k per quarter) We were bought out and the stress level went down, but my health was very damaged. I never thought I would be worrying about my health at such a young age. The major problems began when I was about 28. My symptoms are: Aches and pains of all kinds Vision disturbances (both double and blurry) Red, sore hands Extreme jaw/face pain Chills Upper back and neck pain Migraines Night sweats Leg cramps Extreme fatigue Rashes on neck Numbness and tingling in arms and legs Depression (secondary) Chest pain Brain fog (includes loss of concentration, memory problems and general confusion over everyday things) Chemical sensitivity Sensitivity to smells/lights/sounds Numbness of chest, head, and face My diagnosis’… Chronic Fatigue Fibromyalgia Numerous fibroids and cysts Ulcerative Colitis (possible Crohns) Sleep Apnea TMJ Possible MS Arthritis (degenerative) Pernicious Anemia (Monthly B-12 shots) The support of my family, friends and the wonderful people at Reaching-Out are getting me through this very difficult time.
Carrie (Cuz)