Before becoming disabled due to chronic pain, Jodi Cornelius was a bango-pickin’, backpackin’, tech editing, hard working dynamo. Read how her life has changed.

My Life As A Chronic Pain Sufferer

by Jodi Cornelius

Imagine, waking up one morning and discovering that your life has been slowly changing – and not for the better. Imagine what started out as an innocuous minor pain turned into a pain that keeps you from performing your everyday life without taking pain meds and muscle relaxers, anti-depressants and anti-anxiety medications. Doctors shuffle you from one specialist to another because the neurologists say it’s orthopedic in nature yet the orthopedists say it’s neurological in nature. Here is my story…

In 1995 I was involved in a rear-end collision. I was stopped for a flagman on a mild curve waiting to be allowed to go. Suddenly, from around the corner comes an 82 year old man who never saw the BIG orange diamond shaped signs signaling that there was road construction ahead and also a flagman and to slow down. He rear-ended me doing 50 mph and never touched his brakes. My car stopped his car and kept him from slamming me into the flagman. I had my left arm out of the open window because the weather was really beautiful and was kind of slid down into my seat just relaxing while waiting. I happened to glance into the rearview mirror just in time to see the car coming. I don’t remember much after that. I had my youngest son in the car – he was 12 – and he said that I sucked in a big breath, yelled hold on, and flung my arm in front of him to hold him in place. Fortunately we were both wearing seatbelts.

Because he didn’t see what was happening, he made out really well. No injuries that we knew of (although later down the road we found out that our internal organs aren’t quite where they are supposed to be due to the heavy impact and the scar tissue that has “moved” them around a bit) and since we were so close to my sister-in-law’s house, he ran down to get her to call the police.

As I sat in the car, I saw the older man sitting in his car with his airbag deployed and making no effort to get out of his vehicle and away from the chemicals from the airbag. As I tried to get out of the car, I realized that the door jamb of the car had slammed into my left elbow (he had apparently tried to avoid the car instead of slamming on his brakes or else it just happened to be the position he was in when he hit me and he collided with the left back half of the car), my left knee had been slammed into the dash, the seatbelt had ripped into my left shoulder (which was fine because that kept me from being flung through the windshield) and the driver’s seat had been shoved into the my left hip. But at that time, I didn’t feel much of anything – I just wanted to get out of the car and see if I could get that older man out before he got sick from the airbag fumes.

Shortly after that, the police and an ambulance showed up. They went over to see the older man and see how he was doing and when they came to see me, I slowly started sliding down the side of my car. They got me on the ground and asked me where it hurt. I kind of kidded with them and said “Everywhere, of course” and then proceeded to tell them where I thought my injuries were. They put me in a neck collar and took me to the hospital – my car, at that time, was not drivable because the bumper had been shoved forward so far that it was keeping the tire from turning.

I was diagnosed at the hospital as having a badly bruised elbow, knee, and hip, with mild to moderate whiplash. It took me about a year to recover from the accident but after that I was mostly fine. No real major problems although I continued having knee surgeries on my left knee every 3 years or so needing to clean it out and started having some major reflux problems that caused GERD and it was later discovered I now have Barrett’s Esophagus which is a pre-cancerous condition. It is unknown as to whether the accident had much to do with it. It is possible since my insides got a touch “rearranged” which was discovered when I had to have a Nissan Fundaplication done due to the fact my GERD could not get under control with medication and new spots of Barrett’s continued to show up.

Then, in 2005, I woke up one Monday morning to get ready for work only to find out that I couldn’t get comfortable unless I placed my left arm over my head and rested it on top of my head. I was a cylindrical press operator at the time and there was no way I could do my job, or any job, in that condition. So I went to my chiropractor and he ended up making it worse. I called a different chiropractor and she sent me in for x-rays which showed that I had degenerative disc disease in my neck and proceeded to do therapy. When that didn’t work, she ordered an MRI done to my neck and discovered that I had herniated discs with mild impingement at C3/C4 and C4/C5 and herniated disc with significant impingement at C5/C6 and C6/C7. After some physical therapy, it was determined that the PT wasn’t doing what was needed so surgery was scheduled. My neck was fused with bone from my hip and a titanium plate at C5/C6 and C6/C7.

I finally had the surgery and once I recovered from it, I was ecstatic with the results! No more pain in the neck — outside of my husband and occasionally my kids and grandkids; no movement issues other than an inability to look fully to the left, which was totally acceptable to me. I was very happy.

About 5 to possibly 8 months later, I started developing a problem in my left wrist. It would get a sharp pain in it which would cause me to drop stuff. I wasn’t concerned because it wasn’t happening that often so I just contributed it to the fact that it was part of my job. Then I started getting muscle spasms in my forearm muscle that would cause my arm to draw up similar to that which happens to stroke victims. I would also get triceps spasms which would lock my arm in a straight position that I would be unable to bend. Both types of spasms were severe enough that I would have to have someone else straighten or bend the arm to break the spasm. This developed into difficulty raising my arm above my head. It also caused weakness in my left arm and a sharp pain behind my left shoulder blade that felt like someone was stabbing me with a red-hot poker.

I went to my surgeon to tell him about my problems and all he told me was the fact that his surgery was perfect, which I agreed with, and there was nothing he could do. This went on for about 2 years before I finally said “enough.” By that time I was in so much pain I was crying from it every day (and I have a very high pain tolerance). The general practitioner prescribed me Tramadol, and Hydrocodone and neither of them did anything for me so all this time I was dealing with a major amount of pain without any relief. It was during this time that we discovered that I have a high resistance to medications so meds that would sedate an elephant would have no affect on me whatsoever.

This, of course, led to a difficult time trying different pain medications due to the fact I live in a small town and there were no pain management clinics close-by to make sure that I wasn’t just a “drug seeking” addict so all I could get prescribed was Hydrocodone which was useless because it was like taking candy. I got to the point to where I said “forget it” when any new doctor would say “I can prescribe you Hydrocodone.” So for about 2 years I went through agonizing pain without any pain medication. Suicide began looking like a viable escape. If it hadn’t been for a supporting family, I wouldn’t be here writing this today.

I finally went to a neurologist in a larger city (I had refrained from doing this because riding in a car hurts me really bad and having to travel for 1.5 hrs to 2.5 hours one way is not a good thing for me) but I was to the point that I was ready to do whatever I had to do to get some help. So I went to a neurologist that my sister-in-law had gone to. Now, as I’m sure some of you reading this realize that once you’ve had surgery in your neck or spine, other specialists tend to refuse to treat you because they have to deal with whatever the surgeon did or didn’t do. But since my husband had taken his sister to one of her appointments he mentioned my situation to the surgeon and asked if he would look at me – if nothing else, just look at me and see if there’s something he can recommend. So I went to the appointment and he told me it wasn’t neurological, it was orthopedic. Here we go again. He sent me to a local (for me) orthopedist that I hadn’t been to before and that doctor gave me a shot in my shoulder and scheduled me for an MRI. He got the results and told me that I had a minor rubbed spot in my rotator cuff and that since I hadn’t gotten any good results from the cortisone shot then he couldn’t do anything for me. Naturally, I cried. I was so depressed and so upset that no one seemed to be able to help and no one seemed to even care.

I called the hospital where I had the MRI done and asked for a copy of the MRI and the doctor’s report that went along with it and discovered, myself, that not only did I have a “minor” rub spot in my rotator cuff but I actually had, according to the report,”…a partial-thickness tear of the surpaspinatus tendon just before it’s attachment to the greater tuberosity. A frank complete thickness tear is not identified. There is a signal void in the supraspinatus tendon, which conceivably could represent calcification, which would be better seen with a plain film of the left shoulder. There is considerable DJD of the right AC joint with significant osteophyte extending inferiorly from the joint, which depresses the musculotendinous junction on the surpaspinatus tendon indicating a high likelihood of impingement syndrome caused by this osteophyte. The bicep tendon appears intact.”

In English, that means that I had a tear in my rotator cuff, not a minor rub spot, as the doctor said, I also have significant DJD (Degenerative Joint Disease) that the doctor didn’t even mention PLUS bone spurs rubbing on my bicep tendon.

So, in tears again, I got another appointment with my “new” neurologist and brought my MRI report for him to look at, hoping that it would be something that would tell him “Oh, yeah, okay now that we see this, I see what we need to do.” Instead, what he told me was the same thing he told me before – I need an orthopedic surgeon and I burst into tears in front of the doctor when he said that. I told him the local doctors were either bad or just not caring and I had no idea what to do or where to go and he recommended the orthopedic surgeon who did his wife’s knee. I said, fine, I am at the end of my rope and the office called and they scheduled me within a few days. The neurologist sent a personal letter to the orthopedic surgeon explaining all that had happened and the orthopedic surgeon looked at the MRI that I had and pretty much said the same thing. He couldn’t do anything but give me cortisone shots and see what that would do for me. But then he did one of the best things I’ve ever had done for me during this whole time. He sent me to a pain management clinic that actually believed what the ortho doc told them. He told them I have a high tolerance to medications and that they may need to do a lot of trying out various medications in order to find the right combo without making me look like a drug addict. We’ve worked around quite a bit with different medications and we’re slowly getting closer and closer to getting the right combo – and this has been going on for over a year. But the pain levels weren’t going down that well with the meds that were being issued. The doctor gave me a couple of lidocaine shots in the bad areas in my neck and shoulder and while they helped a little bit, they still didn’t do the job. I was still unable to move my left arm outside of my waist area. To raise it caused intense pain regardless of the meds.

So the pain management doctor told me, if I didn’t have surgery done on my shoulder then we would be unable to go further. My orthopedic surgeon didn’t want to do it because he knew that it wouldn’t work and fix my problems. After the comment from the pain management doc, I made an appointment with the ortho doc and told him I realized that the surgery wasn’t going to “cure” my problems but with what the pain management doc said, it needed to be done in order to rule out shoulder problems.

The ortho doc told me “you do realize that your problems are not going to go away, right?” And I told him yes, I understand but whatever help it gives me has to be better with what I have going on now.

So he did the surgery, and once again, it’s a surgery I wish I had done way back when. It’s a surgery that, once the doctor got in there, he realized that had my shoulder surgery been considered the first time I had started having problems and had the original doctor moved away from my “perfect neck surgery”, I wouldn’t have had the problems I had. Had he gotten in there and done exploratory when I was mentioning my problems, he would have discovered a small bone spur that could have been removed, a small tear or rubbed spot in my rotator cuff that could have been repaired or eased, and a little bit of arthritis that could have just been given cortisone shots on a regular basis and ¾ of my problems would have never developed. But because the proper attention was not paid to my complaints, when the surgeon got into my shoulder to fix the minor tear and remove the bone spur, he found a surprise waiting for him. My “up to 2 hr” surgery lasted 4 hours. When he got in there, there wasn’t one minor rub/tear in the rotator cuff, there were 2 significant tears. Not only was there 1 bone spur, there were 3. Not only did I not have a slight rub on the bicep tendon, the bicep tendon was so worn they had to remove 4 inches off the tendon and reattach the tendon to the top of the humerus instead of back where it belonged. They removed 1 inch off my collar bone due to arthritis and generally just cleaned everything up.

Once I recovered from THAT surgery (let me tell you – if you have to have rotator cuff surgery and people tell you it hurts like crazy – believe them! But I would do it again in a heartbeat.) I can now raise my arm over my head which I had been unable to do for over 2 plus years. I can open cupboard doors over my head, I can adjust the showerhead. To me, these are short of a miracle – just ask someone who suffers with arthritis and has been given something that allows them to finally take the lid off their medication with a minimal, if any, amount of pain. It’s wonderful! Now, I can’t do much with it other than that. I can hold stuff so long as my arm stays by my side. I cannot take a cup or bowl out of the cupboard without fear of dropping them. If I grab a bottle to drink out of or a cup to drink out of, I have to switch to my right hand because I’m liable to either drop the item, or spill it because the spasms can strike making my hand shake.

The weakness I have mentioned is all throughout the left side of my body. I still have the red-hot poker in my left scapula that no one can explain. No one has explained the weakness that I have. No one can explain the nerve pain I get in my shoulder. No one can explain the severe neck pain that shoots up through my head and out my eye with no warning. I can’t get an explanation as to what is going on with my left hip – one says it’s arthritis, another says it’s my sacroiliac joint. But neither doctor nor therapist has helped it. My left knee needs replaced but I’m too young, although I’m sincerely hoping that since I’m now 49 that this will change. I will wake up screaming in the night with the inside of my left knee burning so bad I can’t straighten it out. I have to hook my right foot behind my left ankle and straighten it out that way. Because of this, I must use a cane when out in public because I lose my balance fairly often and that’s the only thing, outside of my husband, that keeps me from falling. However the only good thing on my left side is my left ankle, which I probably shouldn’t mention because it’ll jinx it.

Every morning, I take my pain med, my muscle relaxer, my anti-depression med, my anti-anxiety med, my acid reflux med, my cholesterol med, and my mood stabilizer in the hopes that I don’t go off the deep end. Some days, you just wish something would happen and you just wouldn’t wake up the next time you go to sleep. Other days, they aren’t too bad – they’re actually quite good, relatively speaking. But most days are the days that chronic pain sufferers tend to deal with — it’s not a “good” good day, but it’s not a “bad” bad day – like the chart in the hospital – we usually run between 4-7 on our “normal” days.

A lot of times I get asked “How do you deal with this every day?” from people who know me. I just tell them God blessed me by making me highly tolerant to pain. I mean, if He’s going to make someone “highly tolerant to pain” seems to me it’s better to give it to someone who’s needing it than someone who’s always healthy, right?

But those of us chronic (or ongoing as I’ve heard a lot of people mention) pain sufferers who have no external signs (in my case, I just have a cane and I limp – there’s no visible injury or anything like that and nothing visible to show all the rest of the stuff that is wrong) that anything is wrong with us, we get slapped with a “you’re just trying to get sympathy.” Or another good one is “you’re just a hypochondriac looking for attention.” Those are the ones that make you want to knock their heads off their shoulders and send them on their way. Now you may think that sounds brutal, but when you suffer 24/7, 7 days a week, 52 weeks out of the year with NO breaks from pain, to have someone look at you and say “There’s nothing wrong with you. Why don’t you just get a job and stop sucking money out of us taxpayers!” — well, that cuts pretty danged deep. Because for me, personally, I busted my hump for my last employer and had been with them going on 9 years and had planned on making it my retirement job when all this crap happened. I loved my job. I still love my job. If I could be healed right now, I’d immediately go back to my job and see if I could go back to work there. I’ve paid my dues into the Medicare and disability programs. I didn’t just decide one day, enough working – I want “free” money. No, I struggled to work until the doctor flat out told me I had to stop or end up possibly paralyzed. What choice would YOU make?

So for those of you reading this (should this not end up on the cutting floor) who happens to be fortunate enough to not be dealing with chronic pain and who happens to see someone park in a handicap parking space who appears to be healthy, think about it before you condemn them. Maybe they aren’t as healthy as they look. Think about it the next time you go to the doctor’s office and you see someone with a Medicare or Medicaid card who doesn’t look like there’s much wrong with them. It may not be a real noticeable thing but it’s still there, regardless.

And know that for all of us who are suffering on a day-to-day basis with a legitimate chronic pain problem, none of us want to be in this situation.

Pain not only hurts, it’s depressing to the point of suicide and it takes away all the things you used to do before all this happened. (I played the banjo and loved to backpack neither of which I can do any more.) You tend to be stuck in the house by yourself because friends don’t know what to say to you so they stay away.

But know also, there are a lot of us, myself included, who try to find humor in our lives, making fun of things that happen to us. I never go into a doctor’s office without kidding with the nurses and the doctor and trying to stay upbeat because I refuse to allow my life to be ruled by pain. I still go out and do things that I know I’m going to pay for the next day or even that evening and will probably pay for for days after. And while I don’t do it often (I’m not a masochist!), I do enjoy my time when I do decide to get out of the house and go on a trip even when I know it is going to cause me pain. My pain is not going to rule my life, I am going to rule my life and deal with the pain as it comes.

Index for this One Good Thing about Pain comic strip poster and gift idea index

My Life As A Chronic Pain Sufferer by Jodi Cornelius is a post from: Chronic Illness.org

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Janelle Meraz Hooper is an award-winning independent author with five books published in the novel, romance, and short story genres. She is from Oklahoma but now lives in Washington State. Her website is: www.JanelleMerazHooper.com. You can also read her short stories, essays, and other writings at The Blue Rose Bouquet. She loves to hear from her readers and can be reached at: JanelleMHooper@comcast.net.

Chronic-Illness.org invites you to read about Janelle Meraz Hooper’s systemic lupus and arthritis experience:

Sickly

by Janelle Meraz Hooper

Every time one of my relatives commented to my mother that I looked sickly, she’d chase me on the sunny patio to get some sun. The more sun I got, the sicker I got. I had systemic lupus.

Nobody in my family even knew what lupus was in those days. From about twelve-years of age until the present I’ve had systemic lupus and other auto-immune conditions.

It crept up on me slowly like tree roots in a water line, doing it’s damage mostly unseen. Even when the damage to my body was visible, for years no one identified the problem. I was just weak. Thin. Lethargic. Sickly.

I can remember my dance director when I was in high school taking me aside and explaining she’d have to take me out of the main dance routines because I wasn’t developing enough muscle tissue to sustain the rigorous choreography.  She knew I loved dancing so she gave me my own position on the stage. I became the clown dancer, dancing through and around the other dancers, bringing laughs from the audience.

Dance became very tiring for me so I moved on to my next love, theatre. That was okay for a while, except that arthritis hit my voice and I became unable to project.

Undaunted, I moved onto radio and television. They had microphones. My voice was no longer a problem.

We moved away from where the radio and television station was, so I returned briefly — off and on — to theatre. By then, my voice was better. The arthritis had moved on to other places in my body.

Then I became more crippled, unable to move across a stage with confidence. I took up stained glass. By then, arthritis had weakened my hands. I abandoned stained glass and went to art school to study watercolor. By now, I was over forty and arthritis was in my knees and feet. In art school, we sat up on high stools to reach our art tables. I got kicked out of art school because they were worried about my being so physically unstable.

By then, I was so disabled that the doctors asked me to take some tests to look for clues for things I could do to support myself. I must have taken every test they had, physical and mental. The result: I was most suited to write or work for the state department at an embassy. An embassy? In my hometown of Puyallup? We barely had a Chinese restaurant.

A few days after I got the test results, I got a phone call offering me a job as a staff writer at a local magazine.

From there, I moved onto writing novels.

I call this my last frontier. If I ever become unable to write, there are few other things I’m capable of doing and I’m interested in none of them.

But I guess I could pick something else if I had to.

I could go into politics, I guess.

Or become a bag lady.

Or move to New Orleans and sell violets on a street corner.

I kind of like that last idea. I could set up my cart outside a bar with lots of music…

###

Reminder: You can find links to Janelle Meraz Hooper’s books and other writings at www.JanelleMerazHooper.com and The Blue Rose Bouquet.

My systemic lupus and arthritis story: Sickly by Janelle Meraz Hooper is a post from: Chronic Illness.org

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Index to the Fibromyalgia is a Pain T-Shirt and Gift Idea design

Chronic-Illness.org invites you to read Julie Wendell’s Fibromyalgia story:

Living with Fibromyalgia

by Julie Wendell

“Mommy, open this, please?” my 3-year-old son asked as he handed me a cereal bar early one morning.

I tried to tear off the top of the wrapper, but my fingers would not move or grasp the wrapper!

Terrified, I tried opening it again, but to no avail.  I had lost all strength in both of my hands!   As calmly as I could, I asked my 7-year-old son to open the cereal bar for his brother.  But inside, I was panicking because the weakness in my hands persisted for about an hour.

What was happening to me?

Little did I know that the morning of February 10th, 2008 marked the beginning of a myriad of severely painful symptoms.  My life was about to drastically change.

Over the course of the next few weeks, I started to experience alarming new symptoms. In addition to the weakness in my hands, I noticed that the joints in my hands were very swollen and stiff. I even took pictures of my hands from all angles to make sure that their odd shape was not just my imagination. I would often feel sharp zinging pains in my extremities, especially in my hands, wrists, knees, and ankles. My muscles and joints ached like I had the flu. There were times when I would be convinced I had a temperature of at least 101, just to find out it was completely normal every time I checked.

My level of fatigue went from being a “full time single working mother” to feeling like a “full time single working mother who also ran 100 miles a day.” I was physically exhausted from dealing with so much pain every day.

To make matters worse, I started noticing that when I woke up each morning, I would not feel refreshed, even after a full straight 6-8 hours of sleep.  Instead, it felt like I only slept for one hour each night.  So not only was I physically exhausted, I was emotionally drained as well.  The overall level of exhaustion was indescribable, the worst I have ever experienced in my life!  But I was hoping that whatever was plaguing me would just stop on its own.

One afternoon in April 2008, after I got off work and picked up my kids, I couldn’t get home fast enough.  My body was overwhelmed with pain like I never felt before.  As soon as we walked through the door, I immediately headed for the couch, where I spent the next four days. I had to call my mom to help me take care of the kids.  In addition to my existing symptoms, I also suffered from oppressive chest pain, muscles/joints that felt bruised, extreme coldness in my arms and face, and TMJ-like jaw pain.   I also had the sensation that my aching spine and pelvis were going to slide out of my body.

I cried often, because I had no idea how to cope with these bizarre symptoms.

I tried heating packs, ice packs, Tylenol/Advil, but nothing even remotely helped me.

My temperature was still normal at 98.6.

My mom, who is a nurse, thought maybe I had a virus, but most of the symptoms did not even resemble any virus I had ever had in the past, plus I was not running a fever.  Even after the four worst days of feeling severely “sick,” most of my symptoms never fully disappeared.

At this point, I was at my wits’ end, so I finally decided to get some help.  So even though I was terrified of the possible outcomes, I made an appointment to see my primary care physician.

After reviewing my list of symptoms and seeing the pictures of my hands, he thought it was very likely that I had rheumatoid arthritis. He immediately referred me to a rheumatologist, who wanted to test me for not only rheumatoid arthritis, but also lupus, mononucleosis, and multiple sclerosis.

He ordered some x-rays of my hands and a lot of bloodwork.   He also prescribed a week’s worth of steroids to see if that would help.

My daily life started becoming a real chore for me.  Everything and anything I usually did without a problem was now unbearable or overwhelming.  The mornings and evenings were the worst times of day for my pain, fatigue, and weakness.  I tried to stay strong, especially for my children, but there were days where I felt like giving up on everything.

I tried talking to a few friends and family members about how I was feeling, but they would just say that I was complaining too much and/or accuse me of being a hypochondriac. I had never felt so alone in my life.

The results of the blood tests and x-rays came back the following week and were completely normal.  Also, the steroids ended up not helping me at all.  Based on these findings, the rheumotologist suggested that I may have fibromyalgia.  He prescribed an NSAID called mobic to help with my muscle/joint pain and an anti-convulsant/anti-neuropathy medication called gabapentin to help with my nerve pain.

The doctor said that diagnosing fibromyalgia was very tricky because there are no actual diagnostic tools. Instead, the diagnosis is made after everything else has been ruled out.  He also wanted to wait and see how the next few months went with the new medications before confirming the suspected diagnosis.

During the following months, both of the medications had made a difference to where my daily activities became more tolerable.  I still felt very fatigued, but my quality of sleep seemed to be more restorative (due to the gabapentin).  My muscle and joint pain were definitely persistent but they were on more manageable levels (due to the mobic).

When I went back to the doctor in August 2008, he reviewed all of my test results and evaluated me again, then officially diagnosed me with fibromyalgia, a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints (definition by MedicineNet.com).

The treatment for fibromyalgia includes pain medication and exercise.  The doctor advised me to continue with the medications I was currently taking and to try doing light exercise when possible.  He also warned me that my medication combination was not always going to be perfect.  He said it may take a few tries with various medications before reaching optimal pain management, and what works for me now may not work for me in a few years.

I was completely devastated, knowing that I was going to live with unrelenting complicated pain and severe fatigue for the rest of my life.

Sometimes, in addition to medication and exercise, doctors recommend a gluten-free diet to help alleviate fibromyalgia symptoms.  Coincidentally, I had already been on a gluten-free diet for 4 years already, due to having an auto-immune digestive disorder called Celiac Disease.  Unfortunately, being on this diet did not stop me from having fibromyalgia nor had it eased its symptoms.  My doctor said that I’m one of the unlucky fibromyalgia patients who was not positively affected by a gluten free diet.  Sometimes I like to think that being gluten free has stopped my fibromyalgia symptoms from becoming uncontrollable.

A diagnosis of fibromyalgia carries a negative stigma in society because the symptoms are very vague and are not so clear-cut as other diseases/conditions.  I have actually heard people say that there is no such thing as fibromyalgia, or that the symptoms are fake and they are all in the person’s head.

It is also widely believed that people who have fibromyalgia just want attention and/or medication.  There are many doctors do not recognize fibromyalgia as an actual medical condition.  Therefore, people who do have fibromyalgia usually have to see numerous doctors before receiving a diagnosis.  Luckily for me, reaching a diagnosis for my symptoms only took 6 months and involved seeing only 2 doctors.  Some people suffer for years before finding an answer.

Since my diagnosis, additional symptoms have added themselves onto the original list, such as hypersensitivity to stimuli.  For example, if there is too much light or sound, I start feeling very overwhelmed and need to remove myself from the situation.

There are times where I cannot be touched, when even my clothes feel like too much overload on my skin and receiving a hug actually HURTS.

I also started becoming sensitive to the weather patterns, especially low pressure systems.  I jokingly call myself the “human barometer” because I seem to predict rain better than the weatherman!  During periods of damp or cold weather, my muscles and joints heavily protest, and in turn, the pain increases substantially.

I found that I have a low tolerance for any kind of exercise, it makes me feel worse rather than making me feel energetic and refreshed.

I have also developed difficulty with my short term memory and concentration (ie-”fibro-fog”), which has affected all aspects of my life, especially work.

Today, it remains difficult for me to deal with the pain and fatigue that I experience every day with fibromyalgia.  My doctor has changed my pain reliever from mobic to tramadol, which is a bit stronger, so my pain is at a tolerable level most of the time.  But I definitely have my share of bad days.

On a positive note, I have learned a few things from my experience with fibromyalgia.

I’ve learned not push myself to do more than I can handle, but I’m still learning that it’s okay to ask for help.

I have also learned to prioritize what is actually important and to just take things one day at a time.

Having fibromyalgia has made me realize it is so important not to take anything for granted.

After my diagnosis, my rheumatologist had pointed out to me that fibromyalgia is not a deadly or destructive disease, which is very fortunate.  However, living with chronic pain and fatigue is still a difficult challenge, no matter what the cause.

Yes, fibromyalgia is REAL.

My Fibromyalgia Story: Living with Fibromyalgia by Julie Wendell is a post from: Chronic Illness.org

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View the design for the shirt Pammy is wearing and other slow going designs on this page.

Redefining Slow: A Chronic Illness Realities Comic Strip is a post from: Chronic Illness.org

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It’s better to be slow going than to be not going at all!

t-shirt and gift idea designs.

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Slow Going T-Shirt and Gift Idea Designs is a post from: Chronic Illness.org

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(Revised) There are lots of diet plans to choose from. Each has its own claims to fame — or at least its promise of a more healthful eating lifestyle. Part of the problems with those diagnosed with syndromes and conditions like Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) is that not everybody experiences exactly the same symptoms. For example, some with Fibromyalgia have Irritable Bowel Syndrome (IBS); others do not. Therefore, the same as not every treatment plan works for everyone diagnosed with CFS or FM, there isn’t a “one size fits all” eating regimen either. Many find they must match their diet with their (for lack of a better word) form of their disease, syndrome, or condition.

Details on the Specific Carbohydrate Diet™
by Bernie Standish

The Specific Carbohydrate Diet™ (SCD™) is a grain-free, lactose-free, and sucrose-free diet that was originally designed for Celiac Disease. Today the SCD is also used for Irritable Bowel Syndrome, Candida, Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Cystic Fibrosis, and Chronic Diarrhea. The SCD™ is proving helpful to many with Chronic Fatigue Syndrome and Fibromyalgia as well. [Read more....]

The Anti-Inflammation Diet

Citing Jack Challem, author of The Inflammation Syndrome, this article by Catherine Guthrie explains the dietary steps to stamp out inflammation leading to high c-reactive protein (CRP) levels associated with the elevated risk of heart disease, arthyritis, fibromyalgia, and other disorders.

May the (Organic) Source Be With You

Most experts agree that organic and all natural foods free of chemical additives and preservatives are the healthiest food choices.

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Special Diet Web Sites:

Enabled Cooking

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Excerpt from:

10 Natural Remedies That Can Save Your Life
by James F. Balch (Doubleday, April 1999)

GARLIC :

No one is neutral about garlic, just as no one is neutral about skunks. Some people love the look of a skunk’s soft, furry body, its quizzical face, its seemingly gentle demeanor. Others bluntly say that a skunk stinks, and they want nothing to do with it.

And then there’s garlic. Some cuisines seem to start with garlic, the other ingredients, like tomatoes, herbs, and shellfish, serving as mere afterthoughts. There are gourmets, bon vivants, and, if truth be told, gluttons who all speak of garlic the way wine connoisseurs speak of their favorite vintage and cheese lovers talk of the subtle distinctions in flavor of one variety over another.

The garlic haters, on the other hand, say it smells terrible. They can’t stand the way it comes out on the breath, the way the odor seems to ooze through the pores of the eater. They even joke that garlic is an excellent method of birth control; if one lover eats garlic, the other will maintain a distance of at least ten feet. For some people, garlic is even mildly toxic, upsetting their stomachs.

Garlic and alcohol are substances that are not metabolized. They are absorbed through the stomach lining, which is why they leave the telltale odor. And it’s why some people are sick to the stomach after ingesting them.

Fortunately, there is an aged garlic product that is detoxified and thus deodorized. Just as deodorized skunks make great house pets, so the more sociable garlic, with slightly altered chemistry and sold under the name Kyolic, can be used by people who can’t eat ordinary garlic. In fact, a number of studies indicate that Kyolic may be more effective than raw garlic when it comes to boosting the body’s immune system.

Why is garlic, in its original form or as the extract of the aged vegetable, good for you? Garlic contains germanium and selenium, which are sulfur-containing antioxidants that boost the immune system. In the study mentioned, conducted by Dr. Tariq Abdullah, Kyolic killed 20 percent more of the tumor cells in laboratory cultures than did raw garlic. And raw garlic is by itself one of the most potent boosters of your natural killer cells.

Kyolic has also been found more beneficial for hypoglycemics–people with low blood sugar levels–than raw garlic. The latter lowers the blood sugar level, unfortunately, but Kyolic stabilizes it. The aging process that creates Kyolic produces a supplement whose benefits I find stronger than those of raw garlic.

As enthusiastic as I am about barley grass, if someone were to ask me which single supplement he or she should use, I would recommend Kyolic garlic. It is among the oldest and most versatile of the documented natural remedies. When Hippocrates, the father of diagnostic medicine, was busy noting which treatments worked for the Greek people he treated, he listed garlic. A total of twenty-two ancient Egyptian remedies were found to use garlic, as noted in the Ebers Papyrus dating from the sixteenth century B.C.E. Garlic was a tool against the plague when it struck Marseilles in the 1770s. Albert Schweitzer found that, when he ran out of pharmaceutical supplies in his African mission, garlic successfully stopped dysentery. Louis Pasteur discovered that garlic had antibacterial properties. The Vikings would not go on long sea voyages without garlic. And, of course, as we know from fiction, garlic is an excellent defense against vampires.

Garlic’s value for your heart is well known. First, it contains properties for fighting “bad” cholesterol. We know now that high-density lipoprotein (HDL) cholesterol is not dangerous, but low-density lipoprotein (LDL) certainly is, because it can be oxidized by dangerous free radicals. Oxidized LDL is an enemy of the white blood cells, which become enlarged as “foam cells,” and ultimately are deposited on the arterial walls in the form of plaque. The lumen, the open space of the artery, becomes more and more narrow until it is completely clogged.

HDL works in a more positive fashion. It is thicker than LDL and acts a little like an older sibling assigned to keep the younger one out of trouble. HDL, in a way, takes the LDL by the scruff of the neck and escorts it to the liver, where it is broken down and removed from the body. LDL behaves itself only if it has not been oxidized. And it is the antioxidant quality of garlic that so diminishes the free radical damage to the cholesterol that LDL doesn’t need its sibling HDL to hang around. It can be safely removed by itself. The result is that the garlic reduces the start and the progression of arteriosclerosis.

Heart patients, therefore, are especially blessed by garlic, but it is important to check with your doctor before adding garlic to your regimen, because there are pharmaceuticals that match its chemical properties. This is especially the case with popular blood thinners. In fact, Germany licenses garlic supplements as drugs for the treatment of arteriosclerosis.

In the 1920s, the world was introduced to one of the most valuable yet dangerous drugs ever created. This was aspirin, and 25 percent of all people will, at some point, have a serious, perhaps life-threatening reaction to it. Even more important, some children may develop Reye’s syndrome from aspirin because their body chemistry is not sufficiently stable. Yet despite the risks, most emergency medical physicians and heart experts say that at the first sign of heart attack, you should take an aspirin and then call 911, because aspirin thins the blood, and this can delay or prevent a heart attack.

Garlic is natural aspirin, not because it contains salicylic acid, which was first identified in willow bark tea as a substance to ease headaches and reduce joint inflammation, but because it can help to prevent red blood cells from clumping together. Other qualities of garlic, so different from aspirin that they present no risk, dissolve clots and lengthen clotting time. This natural thinning of the blood helps every aspect of blood flow within your body. It is the safest source of prevention of heart attacks and strokes. Keeping that aspirin bottle tucked in with emergency medical supplies is still a good idea, but the regular consumption of Kyolic will almost certainly preclude the need for more drastic measures.

We know that garlic provides a benefit for the cardiovascular system. Perhaps you or someone you know has a little difficulty in walking. It doesn’t seem serious, but maybe it’s reached the point where you just don’t want to walk any more than you have to. You find that your legs feel weak, or you have a certain amount of leg pain. And when you stop walking to pause for a rest or sit down, the discomfort goes away.

That discomfort is caused by poor blood circulation in your legs. The technical term for the problem is intermittent claudication. Since it is known that garlic improves circulation to the body’s peripheries, studies were conducted with patients experiencing this problem. The regular use of garlic lengthened the distance they could walk without weakness or discomfort. And as a side benefit, their cholesterol levels were lowered, and their blood pressure dropped to a healthy level.

This is what happens when garlic becomes part of the diet and supplement program of those with heart problems. In these cases, we know that individuals who, by all rights of family history, should be experiencing problems with their hearts are not having problems. They are doing better than their ancestors. In longer-term studies, they have outlived everyone simply by adding garlic in one form or another.

Are these individuals genetically unique? Possibly, but it is doubtful. Instead, it is safe to assume that the garlic made the difference. Yet this is not scientific methodology. It is just common sense, which, when it comes to the use of garlic to counter genetics, makes for good medicine.

Where scientific methods can be applied, as with antibacterial factors, garlic has been repeatedly proven safe and effective. Probably every woman and most men have heard of “yeast infection” (a.k.a. yeast syndrome or chronic candidiasis), a term defined mostly through symptoms. Blood tests or stool cultures can reveal the infection. But usually it is determined through a careful, complete physical history that reveals such problems as depression, irritability, vaginal yeast infections, frequent bladder infections, chronic fatigue, lack of energy, reduced sex drive, inability to concentrate, and other distresses. Any one of these is a concern; several in combination generally indicate the presence of chronic candidiasis.

Because yeast infections, along with fungus problems and viral infections, are not usually life-threatening, double-blind studies have been carried out on garlic as a treatment. The findings from these studies have repeatedly shown the value of garlic, in some cases used alone, and in others administered in combination with other natural therapeutics.

Note: Be certain not to self-medicate with garlic in response to the problems mentioned above. With candidiasis, for example, there may be several other concerns. You must eliminate from your diet alcohol, high-sugar foods, and other substances with a high-yeast or mold content. Your digestion must be improved. Detoxification of the liver must be pursued and the immune system strengthened. Then you must coordinate your efforts with your doctor’s for continued treatment, because yeast infections can lie dormant and suddenly return if you fail to continue your care after the immediate flare-up.

Garlic is also excellent in the handling of body fat. This does not mean that you can eat garlic instead of getting exercise. You might be able to scare a vampire, but sloth, indolence, and overindulgence have no fear of garlic. Garlic, however, is acknowledged as one of the most effective means of reducing fat in conjunction with a healthy diet and exercise program.

This is not to say that you can eat all you want, using garlic as a magic pill. What you eat and how much you eat determine one source of fat, perhaps the most controllable source of fat in your body. The younger you are, the easier it is to burn the fat you take in through diet. As you get older, the ability to burn fat decreases. You may be as active at forty as you were at twenty, but you will find that a diet that left you with a flat stomach and slim hips in your youth is now forcing you to go to a larger size of clothing. This is natural and not unhealthy, but excess fat is never a good situation.

Note: Recent reports of long-term studies on body weight and health show that excess weight alone is not the danger it was once believed to be. The more excess fat you carry, the greater the stress on your body, but repeated dieting causes even greater stress. An important factor is your volume of exercise. An overweight person whose weight is stable, who is physically active, and who eats a healthy diet, including the appropriate supplements, will be far better off than the “hard body” whose diet and exercise habits are wrong. To be fat is not necessarily to be unhealthy. It is simply the most visible sign of a potentially dangerous condition that may manifest itself if you do not respect all the other factors that insure good health.

The fat we scold for clinging to our bodies as we age comes from two sources. One fat stays there because our bodies fail to break it down and eliminate it. The other fat is made by our bodies, a process known as endogenous lipogenesis. Both may be products of our lifestyle as much as our age and eating habits.

For example, do you drink? I don’t mean to excess. I mean a beer after work or some wine with dinner. Nothing to worry about. Nothing excessive.

What you probably don’t realize is that the alcohol you consume interferes with the breakdown of dietary fats and stimulates endogenous lipogenesis. In other words, alcohol triggers the body’s fat-producing mechanism and inhibits the body’s ability to break down and eliminate fat.

Taking garlic is not an excuse to drink. I don’t want to see you spending your happy hour sipping margaritas and downing quantities of Kyolic. However, garlic does slow or stop our body’s production of fat by breaking down the lipids and enhancing the elimination of various by-products. Garlic also moves lipids from tissue to the bloodstream for eventual removal. Garlic can dramatically reduce the bad consequences of a multitude of dietary “sins.” It truly is a good thing.

Perhaps one of the most promising findings of research on the use of garlic has come in the field of cancer. The Memorial Sloan-Kettering Cancer Center in New York has found that garlic inhibits the growth of cancer cells in the laboratory. And in a study of colon cancer conducted at the M. D. Anderson Hospital in Houston, Dr. Michael Wargovich determined that diallyl sulfide, a major component of garlic, reduced the growth of colon cancer in mice. A related experiment showed that diallyl sulfide may prevent cancer of the esophagus and help in preventing prostate cancer in some individuals.

The experiments have been thorough and the results encouraging. Garlic is gradually proving to be an effective treatment for cancer as well as a preventive, and is now being tried, in conjunction with other treatments, on immune-system disorders like AIDS. Laboratory results are consistently positive, and trials on humans show similar findings, though they are not yet far enough along for garlic to be stipulated as a treatment. However, as I said at the start of this chapter, if I had to take just one supplement for my health, it would be Kyolic garlic.
Copyright© 1999 by James F. Balch

From:
10 Natural Remedies That Can Save Your Life
by James F. Balch

Garlic: One of 10 Natural Remedies That Can Save Your Life is a post from: Chronic Illness.org

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Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gloria Gottschall

The Specific Carbohydrate Diet™ (SCD™) is a grain-free, lactose-free, and sucrose-free diet that was originally designed for Celiac Disease. Today the SCD is also used for Irritable Bowel Syndrome, Candida, Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Cystic Fibrosis, and Chronic Diarrhea. The SCD™ is proving helpful to many with Chronic Fatigue Syndrome and Fibromyalgia as well. The SCD was designed by Dr. Sidney Haas for his young Celiac patients. Years later his son, Dr. Merrill Haas also joined him in his research and together in 1951 they published a book called Management of Celiac Disease. Elaine Gottschall popularized the SCD after her daughter successfully used the diet in the late 1950s to recover from Ulcerative Colitis.

After receiving her Bachelor of Arts in biology and later a Masters of Science, Ms. Gottschall further studied and improved upon the Specific Carbohydrate Diet. She spent four years investigating the effects of various sugars on the digestive tract working mainly on the cellular level.

It is believed that intestinal microbes (bacteria and yeast) contribute to intestinal problems. These microbes need carbohydrates for their energy. The SCD uses carbohydrates known as monosaccharides (single sugars) that are easily digested in the first part of the small intestine, where they are well absorbed and therefore don’t remain in the digestive tract where they can feed the microbes.

The more popular elimination diets, particularly the Candida diets, believe that the ingestion of yeasts and fungi also contribute to the overgrowth of yeast and bacteria in the intestinal tract. However, the SCD concentrates on the elimination of the disaccharides (double sugars) and polysaccharides (starches). The disaccharides include lactose, sucrose, maltose, and isomaltose. The more complex carbohydrates do not completely breakdown in the small intestine and therefore arrive undigested in the further sections of the small intestine and the colon. There they are able to feed the bacteria and yeast. This can lead to malabsorption of nutrients because of injury to the surface of the intestine.

The suggested diet is an all natural diet, including meats, fish, canned fish packed in water or oil, poultry, some cheeses, dry-curd cottage cheese, home-made yogurt, eggs, nuts, fats, butter and oils, whole fruits, some juices, and non-starchy vegetables. Honey is also permitted as it is a single sugar. Yogurt must be home-made and left to sit for 24 hours to ensure it is lactose free. (Store bought yogurt has anywhere from 4.5 to 7 grams of lactose per cup.)

A partial list of foods to avoid are all grains, including rice, cereal and pasta; table sugar; molasses; corn syrup; maple syrup; milk and milk products except those listed above; processed meats; smoked meats; canned meats; canned vegetables; white potatoes; sweet potatoes; yams; corn; parsnips; and margarine.

After following this diet, most people will notice some improvement in as little as three to four weeks. By six months some people are able to decrease or stop taking their meds, and after approximately six months to two years most people can start adding back the forbidden foods one at a time without a return of their symptoms. (Instructions on which foods can be added back to the diet are given beside each food on Elaine Gottschall’s Legal / Illegal Foods Lists.)

Information on Elaine Gottschall’s Specific Carbohydrate Diet™ book, Breaking the Vicious Cycle: Intestinal Health Through Diet

How to Make Homemade Yogurt (as recommended for the Specific Carbohydrate Diet™)

Index of Web Sites Featuring the Specific Carbohydrate Diet™

Breaking the Vicious Cycle Web Site

SCD Web Library with SCD Recipes

Revision Copyright © 2010 Blue Rose Bouquet Group, LLC
All Rights Reserved

Details on the Specific Carbohydrate Diet™ is a post from: Chronic Illness.org

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Pastel “Have Hope” Index

These Have Hope designs for T Shirts and Other Motivational Gifts give encouragement to anyone facing a challenge or diversity.

For most designs, you can choose from a t-shirt, coffee mug. set of postcards, set of greeting cards or note cards, apron, coaster, framed tile, sweatshirt, and other gift gear.

featuring this slogan

T-shirts & Gift Gear Index

featuring this graphic

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For most designs, you can choose from a t-shirt, coffee mug. set of postcards, set of greeting cards or note cards, apron, coaster, framed tile, sweatshirt, and other gift gear.

View Disabling Chronic Condition Serenity Prayer (Clouds) Gift Gear Index Graphic on the back of these Disabling Chronic Condition Serenity Prayer (Clouds) gift items	View Blue Chronic Illness Serenity Prayer Gift Gear Index Whenever Clock
View Pink Chronic Illness Serenity Prayer Gift Gear Index	View the Chronic Illness Serenity Prayer (multi) index to gift ideas that feature this Chronic Illness Serenity Prayer To see the full beauty of the letters in this design, CLICK HERE to see a full-sized sample image

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