Finding Out It's Not All In Your Head- Fibro & CFS

 As far back as I can remember, 90% of the time I always felt like something was wrong with me. I was tired most of the time, and even when I wasn't tired within a few minutes of beginning something, my body would feel like a dead weight.
I was an adventurous child, growing up next to my grandparents and a few close relatives, and living a bit of a farm girl life. I loved working along side most all of the grownups, but I remember feeling like such a burden sometimes because though with good intentions, I just didn't last long. I craved learning. If something was broken, I would take it apart and try to fix it (usually succeeding) and put it back together.
 I was one of 7 children in my family and my mom had it pretty rough for a long time. And living out in the country, with a good 30 min bus ride, we didn't become involved in many school activities. We did however have a lot of fun with all that country to investigate. Imagination was a good thing to have. Sometimes I often wondered if I was "imagining" that somehting was wrong with me.
At the age of 13, myself and the rest of my siblings came down with a horrible flu bug. Imagine my pregnant mother having to haul the 6 of us at the time to the Dr.
It was just a flu for everyone else, something involving many crop foods at that time, but for me it was the beginning of something else.
Just recently I found out that I not only had FAP type polyps, but Juvenile Polyps too. My intestines were full of them. I had been bleeding for some time and just didn't realize it.
They had been there for some time the Dr. said, and we were lucky to find them. He also said it was a good explaination for my feeling lethargic all of the time.

" In Juvenile Polyposis, polyps can be found in the large intestine, the small intestine and the stomach. Usually the colorectal polyps are the ones causing symptoms, such as bleeding, diarrhea, abdominal cramps and anemia." http://www.clevelandclinic.org/registries/inherited/jp.htm

Although my anemia was not life threatening, it was tiring all the same.
Along with being tired all of the time, I suffered severe headaches. I remember feeling so helpless and hopeless at one time, that I took about 20 tylenol (no joke) and put a note under my pillow in case I didn't wake up. I really felt as though I was dying and no body had the time to listen to me. I think my mother was just so overwhelmed at the time, that I just didn't want to bother her either.
I began having trouble concentrating in school, a few times actually dozing off in a class or two. And I hated it because I truly loved school at the time.
The rest of my aches and pains were thought to just be side effects of the bowel problems at the time.
A lot of my joint pain was shoved off by Dr.'s as "growing pains". When you are a child, and especially one taught to always respect your elders, you believe and go along with their explainations. Little did I know, I would even do that with my own children eventually.

 As I got older I guess I just learned to live with it all. I had a total colectomy when I was 17 (1981) and had only a few infection problems after that. My energy didn't get much better, only worse, along with all the aches and pains, and in 1984 I attempted suiced. I just couldn't deal with it all. From that point on, being a survivor, I decided to educate myself as best as I could. In those days though, there wasn't much to research.
Today it is much different. It has only been through recent support groups that I have learned what damage I have done over the years simply because I was not educated on what my real problems were.
Depression in persons with fibromyalgia and chronic fatigue syndrome is only one of the symptoms. I have always considered myself a fighter. But there were times I just couldn't do it alone. Being on the right kinds of medication would have helped me so much.
Of course, I had just always believed that I was depressed from having to go through so much as a child and not being educated on what I was going to go through with having an ileostomey at the age of 17. Trying to adjust back into school, relationships, no one told me how hard it was going to be.
Exercise for a person with FMS/CFIDS must start out slow and easy, only progressing with tolerance without damaging your body. My weight would go up and down, and I was always trying to prove that I was as normal as the next person, mostly because the doctors back when I had my surgery had told my parents to have me put on social security disability at the age of 17 because I would never lead a productive life as planned.
What kind of crap was that? I had plans, big plans. I was going into the Army and getting scholarships to go to college.   Part of my down fall was when I interviewed for the army and was told that there was no way I would make it out in the field, rolling and crawling around on my stomach with a ostomy bag. What did they know? So I spent most of my life till now trying to prove that I could do anything anyone else could. Especially to have children some day.
Without knowing I had the illness' that I did, I really did a number on my body. I over exercised to the point of damaging joints, ligament, and muscles, not to mention my pride.
Children and adults with FMS/CFIDS should be closely monitered by a physician and a specialist in this field.
There are many things to consider when treating for FMS/CFIDS rather than just depression, fatigue and so forth. All of this makes a big difference in recovery or management.

"Treatment must be carefully tailored to meet the needs of each patient. Sleep disorders, pain, gastrointestinal difficulties, allergies, dizziness, light-headedness, blood pressure irregularity and depression are some of the symptoms which physicians commonly attempt to relieve with prescription and over-the-counter medications. Persons with CFIDS may have unusual responses to medications, so extremely low dosages should be tried first and gradually increased as appropriate."

"Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and light exercise (such as walking) also are frequently recommended. These changes will likely impact a young person's educational and social experiences, and their long-term impact must be considered. Supportive therapy, such as counseling, can also help a young person with CFIDS identify and develop effective coping strategies"
http://www.cfids.org/youth/youth.asp#How_does_CFIDS_develop_in_children

 

For children and teens with this debiliting disease, there are many support groups to be found on the internet.
http://www.pediatricnetwork.org/youthvoices/index.htm
http://home.bluecrab.org/~health/sickids.html - one for parents also.
Dominie's website has been a God-send for me lately.
http://www.revolutionhealth.com/blogs/dominie/doms-fmscfids-newsl-2578
As a user of yahoo, I simply went to groups and connected to as many support groups as I could. I don't alway write in, but I do read and listen. They offer many educational web sites, newsletters, etc.
It is of utmost importance that you find the help that fits your needs.
As an adult, just recently (and finally) diagnosed with fibromyalgia, I have finally found some of the answers I have unknowingly and knowingly been searching for for years. I have even found the correct way to approach my primary care physician about the problem I have suffered from for years. I'm trying not to bombard him with it all at once though. He has been great with me over the past 4 years, after my having contracted MRSA and nearly dying from a cortisone shot in one of my knee's. Thank God for me that the shot for each knee was done at seperate times, or I would have been gone before they figured it all out.
With my immune system having that shock in 2005, my symptoms and problems have worsened, and I am finally getting some of the help I need.
All physicians are different. Some may pass you off as a hypochondriac, so you search until you find one who WILL LISTEN. Believe me, there are doctors who listen.

Although specialist have not been able to pinpoint the EXACT causes of these diseases, they have found that most cases have begun after someone has just endured a chronic bacterial or viral infection.
These kinds of infections cause nervous systems (sympathetic & parasympathetic) to become compromised and damaged.Your body's immune system is thrown into a state of chaos, causing a musculoskeletal imbalance throughout your body.
Your nerve ganglia become irritated and sensitive to the slightest of touch. There are several "trigger points" on the body used to test for FMS. Usually, but not always, CFIDS is associated with FMS.
Even after these viral/bacterial infections have been contained, your body still thinks it has to fight them, consuming energy resources and destroying otherwise healthy cells and thereby contributing to the overall feeling of exhaustion.
Lymphocytes in your body cannot find what they are looking for, so they begin to attack the wrong cells in your body.
Many times FMS/CFIDS and Lyme disease have been misdiagnosed for one another, making a correct diagnosis even harder.
Two types of physician/specialists trained to correctly diagnose either would be an Endocrinologist or a Rheumatologist.
For women, a hormonal imbalance may make your symptoms worse, also causing a misdiagnosis.
I know for me, trying to replenish or make up for my energy loss has caused me more problems. I cannot get right out of bed in the mornings, not without nearly an entire pot of coffee and my pain meds. And generally near mid afternoon, I am putting on another pot. Causing my body many more problems, actually reversing some of the good my medications have done.

 I cannot find an answer to whether or not my daughters have inherited these diseases, but I do know that hey suffer from many of the same symptoms that I did as a child. My youngest daughter has been suffering from debilitatin migraines and on medication for them since the age of 5. And both of my daughters have had to be seen by a specialist at the local childrens hospital for what was thought to be "growing pains". When my first daughter was almost crawling, I noticed a "click" in one of her hips and had been concerned, but the pediatrician asked me if I had indian heritage (which we do somewhere) and explained it as something she would grow out of. And she did, but now almost 18 years old, she suffers from painful hip problems. It is also causing her some problems with her pregnancy.
With my having had FAP and Juvenile Polyposis, we are all now seeing a genetic specialist, in hopes of locating or disproving those specific genes in my children. Once I have a correct diagnosis for chronic fatigue, I have found that the specific gene for that can also be isolated and eventually located or not in my girls.
Parents, don't assume that your child is just lazy, or that they are faking symptoms to get out of school or chores. Please see a good doctor and rule certain things out before trying to take it into your own hands.
I am sure that I would have lived a better life, especially mostly pain free, if there had been someone there to search for answers for me.
It has even been found that mono can mimick or cause FMS/CFIDS in children or teens.
Listen to their complaints with an open heart and mind.
Women and men both should rule this out also. When you become plagued with these debilitating symptoms, depression usually soon follows. Because you're lost and unable to reverse symptoms that require may require special medications and treatment, you may blame yourself for something you have no control of.
Do not let your Dr. tell you that you are simply stressed, when practical approaches do not work.
Locate and ask for a second opinion with someone who specializes in these and other diseases like this.

5/13/2010

    So, this past week I saw my primary care physician, who had ordered some blood work last appt. What is so strange about it all, is that some of the folks and I on my FGN page were just discussing the fact that they have a vitamin D deficiency. 3 days later I go to my Doc and find out that I do too. It was part of the blood work she had done.

Normal ranges of Vit. D in the body should range from 32.0-100.0  ng/mL
Mine was at 20.4 ng/mL.  Not the lowest she has ever seen, but she was concerned especially since I was diagnosed with osteoporosis at the age of 32, and have a body full of osteoarthritis.

A friend of mine here had a recent reading of 18. That worries me for her. So I did some research last night to try to tie it all in to the FGN we all have. (fibrillary glomerulonephritis)
I was very amazed to find out that the same aches and pains we suffer with fibromyalgia, are also symptoms and effects from having a vitamin D deficiency. WHICH CAN BE TREATED.

Most of the time it is labeled as "Rickets".

Osteoporosis, heart disease, hypertension, autoimmune diseases, certain cancers, depression, chronic fatigue, and chronic pain comprises potential manifestations of the syndrome. That is not to say these illnesses are caused by vitamin D deficiency, nor that repletion of the vitamin D system will cure these illnesses. At this point, all that can be said is that these illnesses are associated with vitamin D deficiency.

The symptoms that I read about last night were: bone pain, muscle and joint pain.
And we all have a lot of that.

So ???????????????

More later.