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.

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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…

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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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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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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.

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
Index to this It’s better to be slow going than to be not going at all text design	Whenever Clock	Index to this It’s better to be slow going than to be not going at all text design
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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According to information on AllAboutArthritis.com, Arthritis is one of the most pervasive diseases in the United States and is the leading cause of disability

According to the Centers for Disease Control and Prevention one out of every three Americans (an estimated 70 million people) is affected by one of the more than 100 types of arthritis. According to the Arthritis Foundation, there are over 100 types of arthritis and rheumatic diseases including osteoarthritis, rheumatoid arthritis, and fibromyalgia. Arthritis.com lists osteoarthritis and rheumatoid arthritis as the two of the most common forms.

Arthritis Foundation

A voluntary health agency covering all arthritis and related conditions.

AllAboutArthritis.com

The All About Arthritis website is sponsored by DePuy Orthopaedics, a Johnson & Johnson company, to provide arthritis information to patients, their families, and their caregivers. Arthritis and the other related rheumatic conditions are chronic and disabling, and affect an estimated 43 million Americans. By providing information about these arthritic conditions, their treatments, and strategies for coping with arthritis, All About Arthritis strives to help arthritis patients improve their quality of life.

Arthritis.com

An arthritis information Web site sponsored by Pfiser.

The Arthritis Society

A Canadian Arthritis resource.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

U.S. government National Institute of Health arthritis and skin diseases resource.

The Steelwheels Project

Now That’s Love!

Thanks to a loving husband — with imagination, mechanical skills, and an ability to fabricate steel, one disabled wife isn’t housebound. When an (unnamed) autoimmune illness disabled a Canadian woman with severe arthritis and other problems, her husband built them an RV complete with elevator and wheelchair storage. Now the couple travels in style. Their custom RV has been featured on Discovery’s Travel Chanel program RV Crazy!

Arthritis T Shirts and Arthritis Awareness Gift Ideas

Arthritis Symptoms, Information, and Resources is a post from: Chronic Illness.org

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Fibromyalgia is a chronic disorder characterized by:

• musculoskeletal pain
• fatigue
• weakness
• tenderness in localized areas of the neck, spine, shoulders, and hips sometimes referred to as tender points or pressure points
• muscle spasms
• sleep disturbances
• irritable bowel syndrome
• and other body disturbances.

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

For more information on Fibromyalgia, read: What is Fibromyalgia (FM, FMS)?

For additional Fibromyalgia Information and Resources, see:

Chiari Syndrome and/or Cervical Spinal Stenosis

Information on surgery that corrects a problem that causes some forms of Fibromyalgia

Fibromyalgia Personal Stories

Fibromyalgia and Rheumatoid Arthritis Study

Addressing the Realities of Fibromyalgia Pain

Fibromyalgia Newsletters

Fibromyalgia Support Groups

Is There a Foot-Fibromyalgia Connection?

Hormones and Chronic Fatigue Syndrome / Fibromyalgia

Or visit these resources:

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FMS-Help.com

Dominie Soo Bush’s personal site on which she gives details about how she copes with her Fibromyalgia and CFIDS.

Fibromyalgia Network Online

The Web site for the publisher of the (print) Fibromyalgia Network Newsletter, this site is also a resource for educational materials on Fibromyalgia and Chronic Fatigue Syndrome.

Fibromyalgia Research

The National Institute of Arthritis and Musculoskeletal and Skin Diseases maintains this site of information on current Fibromyalgia research.

Questions and Answers About Fibromyalgia

Another National Institute of Arthritis and Musculoskeletal and Skin Diseases page.

WebMD – Fibromyalgia Health Center

I Hurt All Over

A “Psychology Today” article by Mirinda J. Kossoff about fibromyalgia. The article covers the estimated number of people in the United States who suffer from the disease, the nature and symptoms of the disease, and the research being conducted to understand the disease.

Disabling Realities of Fibromyalgia

In Fibromyalgia Syndrome (FMS) — a brochure from the Fibromyalgia Network, it says: “Overall, studies have shown that FMS can be equally as disabling as rheumatoid arthritis.” Information is available on the FM Network about the actual research that backs up that statement. You can learn how to get an informational packet about Fibromyalgia on the Fibromyalgia Network Web site or by calling 1-800-853-2929.

aboutFIBRO

Fibromyalgia (and Chronic Fatigue Syndrome) information site hosted by Kent Holtorf, MD.

Fibromyalgia Directory

Fibromyalgia Directory provides links to a number of online organizations, support groups and informational sites for Fibro patients.

The Fibromyalgia and Fatigue Center

This 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.

Fibromyalgia: Resources for Families

This site bills itself as one to help you “understand fibromyalgia in the context of family life.”

The American Fibromyalgia Syndrome Association

A non-profit fibromyalgia syndrome association, located in Arizona.

The pain from fibromyalgia is real, researchers say

An article about how University of Michigan doctors say widespread evidence verifies validity of condition, and say patients need to be taken seriously.

Fibromyalgia Information is a post from: Chronic Illness.org

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Diabetes is the name of a 3 metabolic diseases in which a person has high blood sugar –  either because the body does not produce enough insulin or because the diabetic’s body does not respond to the insulin that is produced. This results in high blood sugar, which produces the classic diabetes symptoms of polyuria (frequent urination), polydipsia (increased thirst), and polyphagia (increased hunger).

Advice for anyone coping with diabetes is that:

• Diabetes is a very complicated disease — emotionally and physically.
• No one likes to test their blood, but it’s better than the consequences — of feeling lousy, poor control, or not picking up on blood sugar levels too high or too low to remedy.
• The factor most people don’t consider is that when sugar levels are regulated during a hospital stay, the “patient” is on a schedule of regular meals and snacks; that schedule must be maintained to avoid hypo- or hyperglycemic episodes.
• Not maintaining sugar levels can affect one’s moods immensely. While a healthy person gets grouchy because of a missed meal, you must multiply that reactive feeling by more than 100 to appreciate how a diabetic reacts to altering his or her eating schedule.
• It’s hard to convince people that if they take care of themselves, even though it’s a pain, they’ll feel better; they’ve usually felt bad for so long that they forget what good feels like.
• 6 small meals a day are usually better than 3 larger ones.
• Too many people equate insulin with a cure. Insulin plus work is a way to make coping with the condition easier, but it still takes work.
• Dealing with the psychological aspects (of diabetes) is a huge undertaking.

The diabetes patient sometimes may feel he has lost all control, and that his only control is to not control. But once someone recognizes that while it is difficult to live with a chronic condition, that it isn’t impossible, he can then appreciate that the efforts necessary to cope with his condition are well worth it. I like to tell people to get in the habit of doing as much maintenance on their bodies as they do with their cars. If someone drives a vehicle for a year without changing the oil, it’s going to lock up on them and ruin the engine. Doing simple maintenance — even though it’s a pain and costs a bit — is better than losing the car. And you can’t buy a new body. If a person with diabetes eats right and checks his blood sugar levels, then his engine will run better, too.

The Three Main Types of Diabetes

1. Type 1 diabetes that results from the body’s failure to produce insulin; the Type 1 diabetes patients is usually required to inject insulin. Type 1 diabetes is also referred to as insulin-dependent diabetes mellitus (IDDM) and juvenile diabetes.
2. Type 2 diabetes which results from insulin resistance, a condition in which the diabetic’s cells fail to use insulin properly; the condition is sometimes combined with an absolute insulin deficiency. This condition was once referred to as non-insulin-dependent diabetes mellitus (NIDDM) and adult-onset diabetes.
3. Gestational diabetes occurs when a pregnant woman, who ha never had diabetes before, has a high blood glucose level during pregnancy.

This page is possible thanks to the help and assistance of an RN, BSN diabetes nurse educator with diabetes who does not wish to be named; she is well-qualified to be our expert.

Related Articles:

Cooking for Diabetics

Index of diabetes awareness t shirts & Other gifts

The Everything Diabetes Cookbook Sample Recipes Index

Diabetes is a post from: Chronic Illness.org

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Index for Who cares if it’s the placebo effect if it works? t-shirts and gift ideas design

For many who cope with Chronic Fatigue Syndrome (CFIDS, CFS), Fibromyalgia, Environmental Illness or Multiple Chemical Sensitivities (MCS), and other chronic conditions and illnesses, finding the proper treatment protocol isn’t easy. This is especially true for those whose allergies and sensitivities make it difficult to tolerate some medications. Oftentimes, supplements, vitamins, and alternative treatments can help.

What follows is an archive of articles and herbs and holistic medicine sites:

To E or Not to E….

People take 400 I.U. of Vitamin E to help ease hot flashes and other menopause symptoms, maintain respiratory health, and prevent heart disease, colds, cancer, and Alzheimer’s disease. Those with Chronic Fatigue Syndrome and Fibromyalgia often take Vitamin E because it is thought to boost immune function and ease muscle pain. That wisdom is now being called into question … within reason.

GARLIC

Read this special excerpt From: 10 Natural Remedies That Can Save Your Life by James F. Balch

CAM & More on chronic-illness.org

Information on professional associations for alternative medicine and CAM physician referral information, Acupuncture Associations, Bodywork & Somatic Therapies, American Herbalists Guild, Homeopathy information, and more.

Caring Medical Center

The Caring Medical Center & Rehabilitation Services Natural Medicine Clinic specializes in the treatment of chronic pain.

Feingold Association

The Feingold® Association of the United States is a nonprofit organization whose mission is to helping children and adults apply proven dietary techniques for better behavior, learning and health.

Gems4Friends

Loretta Elaine’s Gems for Friends site includes links to affirmations, Aromatherapy & Essential Oils, Herbal Remedies, Flower Essences, and other information.

Healthy.Net

Find a natural health practitioner resource

Holistic Fibromyalgia and 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

How Crystals Work

An article by Michael McKnight with a link to another on the healing properties of gems.

NaturalHealthLine

NaturalHealthLine is Peter Barry Chowka’s site for Alternative Medicine and Complementary Alternative Medicine (CAM) news & information.

Restoring Thymic Function for Immune Support and Life Extension

An article about how studies involving CFIDS patients has shown that the supplement the “Thymic Protein A” oral delivery system isn’t subject to the degradation of the thymic protein in the stomach. Thymic Protein A improve the function of the thymus gland, which produces the thymic hormones necessary for the body to fight off diseases.

Traditional Medicine and Alternative
Medicine Join Forces

In August 2005, doctors at Penn will be working with Tai Sophia Institute, an alternative medicine school in Maryland, on a program to teach medical students about acupuncture, herbal therapies, meditation, and other alternative medicine techniques.

SOURCE:
Alternative goes mainstream

Dr. Andrew Weil

Site for Dr. Andrew Weil, the author of 8 Weeks to Optimum Health and other books

Supplements and Vitamins

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eVitamins

Health Products At 20 – 70% Off!

House of Nutrition

House of Nutrition has more than 45,000 discount Prices for name brand vitamins and supplements at exceptional discounts — with 600-800 products added eah month. Their supplements are from companies such as Solgar, Naturade, Twinlab, Country Life, Enzymatic, Jarrow, Nature’s Way plus many more. House of Nutrition also carries the largest selection of Nutrition Bars on the Internet!

Kalyx.com: Herbs, Foods, Supplements, Bath & Body

This site has quality bulk herbs, foods, supplements, bath, and aromatherapy products.

NaturalWellbeing

Herbal remedies, holistic health supplies, and all natural products. Also carries pet products. Free same day shipping. Products carry a 90-day money back guarantee.

Water Purifiers

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Tyent USA – The #1 Water Ionizer.

H2Go Portable Water Ionizer from TyentUSA – Only $64.95! Buy Now!

Herbs and Holistic Medicine is a post from: Chronic Illness.org

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Meditation and Pain Management Techniques Can Provide Pain Relief

Meditation, in its simplest form, is simply a way of calming your inner mind and bringing it into balance with your body. This balance can let your body ease its way into providing you with relief from the pain associated with Chronic Fatigue Syndrome, Fibromyalgia, arthritis, and other disabling conditions.

Additional information on Hypnosis and Hypnotherapy, Mind and Body Medicine, Supplements and Vitamins, and Water Purifiers:

Hypnosis and Hypnotherapy

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Wendi Friesen CHT Clinical Hypnotherapist

Wendi Friesen’s hypnosis CD and downloads programs include:

#1 Hypnosis program for weight loss

Addiction Freedom

Appetite Zapper

Body Mastery – A Hypnosis Healing Program for a Healthy, stronger and more youthful body and mind

Eat This! – Stop sugar cravings and night time hunger

End Back Pain – No more suffering

Release depression in 14 Days – My Life 6 CD set

Think Yourself Thin

Skin Deep – Heal your skin with visualization and cell reprogramming

Stop Smoking

Wake Up Happy – Be alert and energized

Zen of Thin

Coupon Special: Almost $600 worth of Free Wendi.com DVD’s and CD’s when you spend $75 – use coupon BANZAI

hypnosense

Hypnosense is UK hypnotherapist Terence Watt’s Web site. He provides suggestions on how to heal your body and your spirit, how to stop smoking, and how to ease anxiety, phobia, and fears.

hypnotherapyforhealth

hypnotherapyforhealth is Seth-Deborah Roth’s site. She has special advanced hypnosis training in Medical Hypnosis, Pain Control, Hypno-Anesthesiology, Cancer Hypnosis, Emergency Hypnosis, Hypno-Birthing®, Habit Control, Advanced Reiki, Lux-Mani Energy Work, and Pediatric Hypnosis. She also offers a Medical Hypnosis Certification course, and provides Skype or phone therapy sessions. Seth-Deborah Roth also writes the Hypnotic Health blog.

Mind and Body Medicine

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SelfhelpMagazine

Site for magazine founded by San Diego psychologist Marlene M. Maheu, Ph.D.

Holistic Health Solutions for Your Chronic Illness or Chronic Pain

Article includes 5 Easy Steps to Improved Health. Page includes a link to a free eBooklet on Eating for Better Health.

Ask the Dream Doctor

Charles McPhee’s interactive Web site to listen to the “Dream Doctor” radio show online, to submit dreams for interpretation, and to have questions on sleep disorders answered on the message boards.

Hemi-Sync®

Information on audio selections designed to help the user achieve the desired brainwave activity … for optimal mental, physical, and emotional states … relaxation, and concentration.

Benson-Henry Institute for Mind Body Medicine

The Benson-Henry Institute for Mind Body Medicine is a scientific and educational organization committed to the study of mind/body interactions, including the relaxation response. Their Web site has online access to information from world leader in the research and clinical practice of mind/body medicine.

Mind Publications

A non-commercial self-help site whose intention is to assist you with personal or family and relationship problems, and also help you cope with chronic illness or pain.

Anatomy of the Spirit:
The Seven Stages of Power and Healing

Author Carolyn Myss blends “diverse religious and spiritual beliefs into a succinct discussion of health and human anatomy.”

THE FEINGOLD ASSOCIATION

Site espousing the practice of the Dietary Connection to Better Behavior, especially for ADHD — Ben F. Feingold, a pediatrician and allergist who was a pioneer in the field of allergy and immunology.

SerenityHealth

SerenityHealth has hundreds of Stress-Free and Relaxation Products.

Supplements and Vitamins

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House of Nutrition

House of Nutrition has more than 45,000 discount Prices for name brand vitamins and supplements at exceptional discounts — with 600-800 products added eah month. Their supplements are from companies such as Solgar, Naturade, Twinlab, Country Life, Enzymatic, Jarrow, Nature’s Way plus many more. House of Nutrition also carries the largest selection of Nutrition Bars on the Internet!

Kalyx.com: Herbs, Foods, Supplements, Bath & Body

This site has quality bulk herbs, foods, supplements, bath, and aromatherapy products.

NaturalWellbeing

Herbal remedies, holistic health supplies, and all natural products. Also carries pet products. Free same day shipping. Products carry a 90-day money back guarantee.

Water Purifiers

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Tyent USA – The #1 Water Ionizer.

H2Go Portable Water Ionizer from TyentUSA – Only $64.95! Buy Now!

Mind and Body is a post from: Chronic Illness.org

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