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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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.

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

t-shirt and gift idea designs.

Index to this It’s better to be slow going than to be not going at all crutches design	Index for this It’s better to be slow going than to be not going at all turtle design	Index to this It’s better to be slow going than to be not going at all forearm crutches design
Index to this It’s better to be slow going than to be not going at all wheelchair design	Index to this It’s better to be slow going than to be not going at all cane design	Index to this It’s better to be slow going than to be not going at all walker design
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Have Hope T-Shirt and Gift Idea Designs	Nap Realities T-Shirt and Gift Idea Designs	Coping T-Shirt and Gift Idea Designs

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

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Index to Chronic Fatigue Syndrome, CFIDS, Myalgic Encephalomyelitis Sucks t shirt and gift idea design

Whether you refer to it as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.), the name alone cannot convey the devastation brought about by having to cope with this condition. The “fatigue” in the name refers to much more than just being tired. Those who suffer from this condition experience a fatiguing condition similar to how one feels when you have the flu. Only with the flu, you eventually get better. Imagine dealing with those muscle aches, the weakness, headaches, and other symptoms on a daily basis and you know how someone with CFS feels on a good day.

For more information, see: What is Chronic Fatigue Syndrome?

Or refer to this information:

Chronic Fatigue Syndrome Personal Stories

United States Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups

Canadian Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME)  Support Groups

International Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups

More Information on Chronic Fatigue Syndrome Support Groups

Chronic Fatigue Syndrome Newsletters

Chronic Fatigue Syndrome Treatment

Chronic Fatigue Syndrome and the Placebo Effect

Dr. Gow Identifies Possible “Gene Signature” for ME/CFS/CFIDS

Exercise While Sitting Down (with pictures of the bounce back exercise chair)

CFS Gets Some of the Respect It Deserves!

CFS Book Available as a Free Download

Getting Congress Involved in CFS Advocacy

Charles W. Lapp, MD Provides a Response to the “Exercise May Help Those with CFS” Study

Chiari Syndrome and/or Cervical Spinal Stenosis

Information on surgery that purported to correct a problem that causes some forms of CFS

Casey’s Fund: The Casey Fero ME/CFS Tissue and Blood Bank

Hormones and Chronic Fatigue Syndrome / Fibromyalgia

Quotes on “How Did Your Chronic Fatigue Syndrome Start?”

Study Shows CFS Patients’ Brains May Be Shrinking

More articles available in the Articles Index

Or visit these Chronic Fatigue Syndrome resources:

The Chronic Fatigue Syndrome: Qualification for Disability Benefits

An article by Donald Schopflocher, Ph.D. (Psychology), M.E. / C.F.S. Society of Edmonton

When ‘feeling tired’ signals something more

An excellent Parade article by Dr. Isadore Rosenfeld that validates Chronic Fatigue Syndrome (CFS) as a serious medical condition, and discusses the number of people who suffer with this chronic disease.

Grassroots Action Center Listserv

The e-mail alert service, formerly known as C-ACT, now has a name that better reflects the purpose of this advocacy group: the Grassroots Action Center Listserv (GAC listserv) for CFS / CFIDS-related issues.

Center for Disease Control (CDC) Chronic Fatigue Syndrome Information

Chronic Fatigue Syndrome information at the United States government Center for Disease Control (CDC) Web site.

Chronic Fatigue Syndrome is not all in the mind

A 21 July 2005 New Scientist article regarding differences in gene expression have been found in the immune cells of people with chronic fatigue syndrome (cfs), a discovery that could lead to a blood test for the disorder and perhaps even to drugs for treating it.

Chronic Fatigue vs. Chronic Fatigue Syndrome

A National Institutes of Health (NIH) article about the differences between the extreme and persistent fatigue of Chronic Fatigue Syndrome versus that of a diagnosis of Chronic Fatigue.

The CFIDS Association of America Web site

The CFIDS Association of America, the leading CFIDS advocacy group in the United States, works with the CDC in providing CFIDS education for health care providers, publishes a magazine, and maintains a grassroots advocacy listserv. Chronic Fatigue and Immune Dysfunction Syndrome; Chronic Fatigue Syndrome (CFS); Myalgic Encephalomyelitis (M.E., ME)

The CFS Report

Working from the philosophy that the 1994 CDC revised case definition for CFS is unsound and far too complex because by including too many emerging fatiguing illnesses under an expansive “fatigue syndrome” label, “it has been very ineffective in producing consistent research,” The CFIDS Report offers an assortment of links for advocacy issues, CFS articles, and more.

CFIDS, M.E., AND Chronic Fatigue Syndrome Information Site

The CFIDS/M.E. Information Page is maintained by Mary Schweitzer, and includes links to resources and her personal essays about her experiences with the disease.

CFS/ME Information from CFS-NEWS

A general Chronic Fatigue Syndrome and Myalgic Encephalomyelitis resource site maintained by Roger Burns, the publisher of CFS-NEWS.

About CFIDS (Chronic fatigue and immune dysfunction syndrome)

Information on CFIDS (Chronic fatigue and immune dysfunction syndrome , also known as chronic fatigue syndrome, CFS, myalgic encephalomyelitis, ME and by many other names) provided by The CFIDS Association of America, Inc.

Chronic Neuroimmune Diseases

Melissa Kaplan maintains this site on Chronic Fatigue Syndrome, Lyme Disease, chemical sensitivity, pain, and other links and information.

A quote from Melissa’s previous site:

A growing number of researchers now believe that CFIDS is in fact non-paralytic polio. If you grew up during the polio epidemics, or ever received a polio vaccine, then you probably will want to check out the section below on Stealth Virus/Polio…

Due to the dysfunction of the neuroendocrine system, the body reacts to “mere” thinking just as it does to physical exertion … exercise in a healthy person causes increased blood oxygen levels in the brain and increased metabolism; these increases last for about six hours. When the CFIDS patient does it, however, they are already starting off with a lower-than-normal oxygen level in the brain, and exercise, instead of increasing it, actually makes it go lower. The body reacts to even mild exercise, like a short walk, as if it has run a marathon on top of working an 80-hour week: extreme pain, fatigue, cognitive dysfunction … and it lasts for 36-48 hours….

Chronic Fatigue Syndrome Hub

A site that provides general information about Chronic Fatigue Syndrome, including possible causes and treatments.

American Academy of Family Physicians – Chronic Fatigue Syndrome

The American Academy of Family Physicians page on Chronic Fatigue Syndrome Evaluation and Treatment.

American Journal of Medicine 1998 Supplement on CFS

Information on and links to the full text of the American Journal of Medicine September 1998 supplement on Chronic Fatigue Syndrome.

The Physical Basis of CFS

An article by Anthony L. Komaroff, MD of Harvard Medical School stating that although there is no known test or cause for Chronic Fatigue Syndrome (CFS), it is a mistake a mistake to assume that the illness is not real. The article cites evidence about the condition.

Dizziness, Imbalance, and Hearing Disorders

Dizziness and balance problems are often problems experienced by those with Chronic Fatigue Syndrome and Fibromyalgia. This page maintained by Northwestern University Medical School Professor and Chicago Dizziness and Balance’s Timothy C. Hain, MD has links to common causes for dizziness and balance problems, plus information on hearing disorders.

From Skepticism to Science: CFS May Be Getting Some Respect

An article by the author (Dorothy Wall) of the book Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome about how, after 20 years, chronic fatigue syndrome may finally be getting some respect and cutting-edge science.

Chronic Fatigue Syndrome is More Than Just Being Tired

An article detailing what the symptoms and problems with which those who suffer from Chronic Fatigue Syndrome must cope.

Chronic Fatigue Syndrome

A well-documented article by Dr. Peter Grant, written for Clinical/MedAu.

Chronic Fatigue Syndrome and its Connection to ADD/ADHD

An article written by Michael J. Goldberg, MD, whose wife suffers from Chronic Fatigue Syndrome.

Canadian CFS Diagnostic Code

Because of the efforts of The Myalgic Encephalomyelitis Association of Ontario, Dr. Alison Bested, and others, Chronic Fatigue Syndrome (CFS) now has an official diagnostic code (OHIP Diagnostic Code 795) by the Ontario Medical Association as a Neurological Illness. According to information on the The National ME/FM Action Network, the association had hoped to get “Myalgic Encephalomyelitis (ME)” included in the diagnostic code definition, but they’re celebrating the success all the same.

Updated Canadian Case Definition for M.E./Chronic Fatigue Syndrome

The Myalgic Encephalomyelitis (M.E.) Society of America’s report on the 2003 Canadian update to the case definition for Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS).

Listening to CFIDS

Sue Boettcher edits this excellent (and well-designed) online magazine-style site which includes essays and writings by PWC (People With CFIDS) and a message board.

Peter C. Rowe, MD Revised Guidelines for CFS and POTS

Revised guidelines for CFS and POTS from Peter C. Rowe, MD, Professor of Pediatrics, Johns Hopkins.

Timothy C. Hain, MD on Orthostatic Intolerance in CFS, POTS

An article by Timothy C. Hain, MD, Northwestern University Medical School, Chicago in which he states that something as simple as elevating the bed 4-6″ can increase a POTS patient’s blood volume, and can be helpful after only a few days. Treatment options, medical tests, and association with Chronic Fatigue Syndrome (especially in juvenile patients) discussed.

eMedicine Health: Chronic Fatigue Syndrome Overview

eMedicine Consumer Health Web site’s overview of Chronic Fatigue Syndrome (CFS).

What is the “fatigue” like in “Chronic Fatigue Syndrome”?

An essay by Mary Schweitzer detailing the differing levels of “fatigue” as she’s experienced them.

Youth and Pediatrics/CFS

A general youth and pediatrics Chronic Fatigue Syndrome resource site maintained by Roger Burns, the publisher of CFS-NEWS.

Other pages of interest:

Exercise While Sitting Down (with the help of the
Bounce Back Chair)

Because the bounce back exercise chair increases the flow of lymphatic fluids throughout the body by as much as 10 times their normal rate, it helps the body remove toxins, strengthens the immune system, increases muscular strength, and improves blood circulation. Also sometimes referred to as the Bounce Back Fitness Chair, Bounce Back Exercise Chair, and Bounce-Back Chair.

NZine

New Zealand online magazine site billed as: People Making Changes — Self Help For Sufferers From M.E. (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome)

Chronic Illness Realities Comic Strip

Chronic Fatigue Syndrome Resources is a post from: Chronic Illness.org

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(Revised)

Many who cope with Chronic Fatigue Syndrome, Fibromyalgia, and other chronic illnesses must also deal with sleep disturbances. Getting enough rest is essential to good health and well-being, so many must rely on sleep medications.

Treating Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: “A Prescription For Sleep”

An article on drugs have shown promise in assisting sleep for patients with CFS/CFIDS/ME.

Mayo Clinic “Chronic Fatigue Syndrome: Treatment and Drugs” page

This article cites that “[t]here’s no specific chronic fatigue syndrome treatment,” but does include a discussion of some of the treatments. (They cite that “[r]esearch has proved that gradually increasing exercise can improve the symptoms of chronic fatigue syndrome,” but fail to mention that for those with exercise-intolerant Chronic Fatigue Syndrome, the opposite has been proven to be the case: For those with exercise-intolerant Chronic Fatigue Syndrome, exercise exacerbates the symptoms. For more information, refer to Dr. David S. Bell.) The page does cite some sleep assistance protocols and experimental therapies.

CDC – Toolkit: Sleep – Chronic Fatigue Syndrome (CFS)

This Centers for Disease Control and Prevention (CDC) page concentrates more on “good sleeping habits,” or what they refer to as “sleep hygiene,” than on sleep medications. (Keep in mind that historically [hysterically?] the CDC has chosen to consider CFS a psychosomatic condition rather than a physical illness. According to this page, that’s reflected in the NIH annual per-patient research funding: AIDS/$2700; Asthma/$300; CFS/$4.)

Lifestyle changes and the right medications can help ease fatigue and restless sleep from fibromyalgia.

A WebMD article. (Note that while many patients with Fibromyalgia also have Chronic Fatigue Syndrome, there is a difference between “chronic fatigue” and “Chronic Fatigue Syndrome.”)

Medication Use by Persons with Chronic Fatigue Syndrome: Results of a Randomized Telephone Survey in Wichita, Kansas

Results of a 2003 survey.

Sleep Medications for Chronic Fatigue Syndrome and Fibromyalgia 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.

Diabetes and Diabetic Diets:

CookingWithPam.com Diabetic Cooking Section

Chronic-Illness.org Diabetes Section

The Everything Writing Well Cookbook recipe index

Special Diet Web Sites:

Enabled Cooking

Coping Skills: Special Diets is a post from: Chronic Illness.org

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When confronted with a Chronic Fatigue Syndrome, CFIDS, or Myalgic Encephalomyelitis (M.E.) diagnosis, it helps to keep abreast of the latest treatments and information. This is especially important because your family and friends may be having difficulty understanding the changes in you — especially when you don’t understand those changes yourself.

These sites have Chronic Fatigue Syndrome support newsletters:

CFIDS.org

CFIDS.org newsletter archives

The Lyndonville News

Bi-monthly newsletter from Dr. David S. Bell.

The Lyndonville News Archives

The Doctor’s Guide to Chronic Fatigue Syndrome:
Understanding, Treating, and Living With CFIDS

by David S. Bell, M.D.

Chronic Fatigue Syndrome Newsletters is a post from: Chronic Illness.org

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(Revised)

Chronic Fatigue Syndrome, which is sometimes also referred to as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E. or ME), is an illness characterized by prolonged, devastating fatigue. Chronic Fatigue Syndrome is often also characterized by overlapping allergies, sensitivities, and symptoms from other conditions. The same factors that can make diagnosis difficult also affect how these symptoms are treated. These resources provide information about the tests and treatment protocols available for Chronic Fatigue Syndrome:

Chronic Fatigue Syndrome and the Placebo Effect

Prozac – A Problem Drug or a Scapegoat?

New Study Shows Promise that “Skin Tests” May Be Able to Provide a Definitive Diagnosis for Chronic Fatigue Syndrome

The Grand Challenge for Research

Learn how despite hundreds of millions being spent on AIDS research and more than $100 million on MS research, despite that in 2004 only $3.9 million for Chronic Fatigue Syndrome research, the NIH is imposing further CFS research funding cuts which has put researchers in a difficult position….

CDC Chronic Fatigue Treatment Information

Data from the U.S. government Center for Disease Control about non-pharmacologic therapy (physical activity, education,…) and pharmacologic therapy (prescription medication, experimental drugs and treatment,…) and dietary supplements and herbal preparations.

The Marshall Protocol for Treating Chronic Fatigue Syndrome

In this interview, Trevor Marshall, Ph.D. explains why he believes his (controversial) protocol developed to relieve the symptoms of Sarcoidosis patients also works for those with Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Lyme Disease, and other illnesses and conditions.

Additional reading on the Marshall Protocol:
The Marshall Protocol, STAY AWAY FROM THIS ONE
Marshall Protocol Study Site

Steroid Medication No Help to CFS Patients Who Get that Faint Feeling

A January 2001 National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH) press release on a study to determine whether steroid medication would provide relief for Chronic Fatigue Syndrome patients who experience light-headedness when standing for long periods of time.

Treatment at the Cheney Clinic

A reprint of an article that first appeared in the July/August 1998 issue of “The CFIDS Chronicle” (Vol. 11 No. 4) that details how Chronic Fatigue Syndrome expert Dr. Paul Cheney, M.D., Ph.D. treats his patients, including exercise recommendations such as the Bounce Back chair.

Dr. Paul Cheney on the Clinical Management of Chronic Fatigue Syndrome

Audio Tape Transcriptions of Paul Cheney, M.D. on the Clinical Management of Chronic Fatigue Syndrome, from a workshop held in February of 1999.

Dr. Paul Cheney Treatment Information Radio Interview

C-Cure.org page of a radio interview with Chronic Fatigue Syndrome expert Dr. Paul Cheney about his experience and treatment information associated.

Dr. Paul R. Cheney’s Basic Protocol: 2003 Supplement/Health Aid

A page showing Chronic Fatigue Syndrome expert Dr. Paul Cheney’s 2003 basic protocol for treatment and supplement/health aid recommendations.

Dr. Cheney’s Basic Treatment Plan 2002

Information on Chronic Fatigue Syndrome expert Dr. Paul Cheney’s 2002 Basic Treatment Plan. Includes recommendations for rebound exercise, such as that possible with the Bounce Back Chair; prescription drug and supplements recommendations; and basic diet suggestions.

Cerebral & Systemic Hemodynamics Changes During Upright Tilt in CFS

Abstract and link to full text of a Journal of Neuroimaging article on “Cerebral and Systemic Hemodynamics Changes During Upright Tilt in CFS.” During the “tilt table test,” patients with chronic fatigue syndrome (CFS) have higher rates of neurally mediated hypotension (NMH) and postural tachycardia syndrome (POTS) than healthy controls.

Paul Cheney, M.D.’s Oxygen Treatment for Chronic Fatigue Syndrome

An explanation of Chronic Fatigue Syndrome expert Dr. Paul Cheney’s method of prescribing oxygen for patients with alkaline venus blood.

Dr. Paul Cheney Discusses the Benefits of Klonopin

An interview with Chronic Fatigue Syndrome expert Dr. Paul Cheney about what he believes are the benefits of treatment with Klonopin and the supplement magnesium because of their neuroprotective qualities.

An Interview With Paul Cheney M.D., Ph.D.

A transcript of the February 28th, 1999 CFS Radio Program Host Roger G. Mazlen, M.D. interview with Dr. Paul Cheney.

Chronic Fatigue Syndrome Clinical Trials

A search index of Chronic Fatigue Syndrome (and other) Clinical Trials.

Compare the Medical Conditions of Gulf War Veterans to CFS, Other….

Information on a completed Department of Veterans Affairs clinical trial comparing the medical conditions of Gulf War veterans to non-deployed veterans. Comparisons were made between Gulf War Syndrome (GWS) and Chronic Fatigue Syndrome, Fibromyalgia, other conditions, and general health status.

Orthostatic Intolerance in Adolescent Chronic Fatigue Syndrome

The abstract of a New York Medical College study on “Orthostatic Intolerance in Adolescent Chronic Fatigue Syndrome” with links to the full text of the article and to other articles that cite this study.

CFS and the Exercise Conundrum

Lucinda Bateman, MD
A (pdf) article about how one CFS patient was able to restore her muscular strength. Citing the exercise intolerance associated with CFS, the article states:

One thing patients and medical providers agree on is that CFS is characterized by post exertional malaise, a term that often understates a “payback” that varies from escalation of widespread pain, to exhaustion requiring a recovery day in bed, to serious relapse of the entire CFS symptom complex:the
cognitive dysfunction, flu-like achiness, fatigue, low grade fevers, lymph node tenderness and disturbed sleep patterns of weeks or months duration. Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda).

Holistic Chronic Fatigue Syndrome Center

The Fibromyalgia and Fatigue Center is the Web site for the Fibromyalgia & Fatigue Centers (FFC) founded by Chronic Fatigue Syndrome and Fibromyalgia patient Dr. Kent Holtorf. These centers use a holistic approach to treatment for these conditions.

Chronic Fatigue Tests, Treatments, and Research is a post from: Chronic Illness.org

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In addition, this is some of the revised information online about Chiari syndrome and/or cervical spinal stenosis:

Chiari Malformation

From the National Institutes of Health: National Institute of Neurological Disorders and Stroke, general information about research, treatment, and prognosis.

Chiari Malformation

The Columbia University Medical Center Chiari malformation pediatric neurosurgery site.

Chiari Malformation in CFIDS/FM on Co-Cure

The May 1999 article from the CFIDS Chronicle on a possible connection between Chiari and CFS/FM. (Note: This article has a large number of  the links to the other sites mentioned in Lisa Lorden’s 2000 article about this condition; however, most of those links no longer work.)

CONTROVERSY: Spinal Surgery for Fibromyalgia Patients

A National Fibromyalgia Research Association report on  the January 25, 2003 the North Carolina Medical Board’s decision to indefinitely suspend Dr. Michael Rosner’s medical license. (According to information on this page, Dr. Rosner is a neurosurgeon who had been exploited by the media as doing surgeries to “cure” fibromyalgia and CFIDS, when in fact he has never performed a surgery as a treatment for FM/CFIDS.)

Chiari syndrome and/or cervical spinal stenosis is a post from: Chronic Illness.org

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