FIBROMYALGIA:

A PERSONAL JOURNEY of PAIN, STRESS and CHRONIC FATIGUE SYNDROME

The term fibromyalgia was first thought to be psychological because there was not much research being done on the many symptoms that patients were experiencing. Some Dr.’s even thought that the pain was being caused by depression and treated their patients only with antidepressants that did not take away the pain. Thankfully, it is now recognized by the Medical field as a true medical disorder.

Symptoms of fibromyalgia begin with an increased sensitivity to pain with the symptoms coming and going with stress, humidity, activity, weather changes and many other factors depending on the patient. Fibromyalgia may mock other diseases such as lupus, multiple sclerosis and other diseases so that you may have to undergo many tests to find the true source of pain and chronic fatigue. It is a condition that causes pain in the muscles, joints, ligaments and tendons. A lot of the pain occurs in areas called “pressure points” or “tender points.” The most common points are the inside of the knees, the hip joints, the elbows, the shoulders and the neck. I have found Lyrica to be a miracle drug that takes most of my pain away. I still am tired and fatigued but it beats being in extreme pain all of the time.

I also experience restless leg syndrome which feels as if my legs are being pulled and move all through the night which causes major discomfort during the night causing lack of sleep. Muscle spasms occur in the muscles of my arms, calves of my legs and especially in my feet. Sometimes if I bend over I get spasms in my back causing much pain. I have found that taking 10 mg. of Diazepam three times per day help keep the spasms away.

Many people experience some degree of constant pain while the pain can become worse with the above conditions that I mentioned. Mostly I have a deep ache in my legs and feet. They may also experience a burning pain at times and either pain can put me in bed at any time for days. The pain may move to any part of your body and cause severe spasms, aching and a feeling of extreme illness.

Many people with fibromyalgia experience chronic fatigue and want to sleep most of the day. Sometimes during the night it is very hard to go to sleep which may add to your fatigue. Personally, I am tired most of the day and I would lie down if I did not have a family to care for. Most people with fibromyalgia do have sleep disorders and can never seem to get enough sleep which causes drowsiness, restlessness, and fatigue. It would make you feel better to take a nap during the day to make you feel more relaxed.

I also have peripheral artery disease (PAD), which is a decreased flow of blood returning up my feet and legs to my body, which causes pain. Due to this I have had two angioplasties to open the left renal artery to my left kidney three years apart. Occasionally, I am still bothered by this with pain in my legs from walking too much or for too long of a time. You may have feelings of numbness or tingling in parts of your body or perhaps a feeling of poor blood flow in some areas. Some people are very sensitive to odors, loud noises, bright lights and even medications. It is very difficult for me to find any relief from the pain because I am allergic to any form of Codeine. Tempomandibular joint pain (TMJ) in the jaw is also a common symptom because fibromyalgia affects the joints, ligaments and muscles anywhere in the body including headaches.

We found out that I have Hypothyroidism, which is causing my voice to change and become very weak. I now take 1.5 mg. of Synthroid daily. My voice has remained very weak and scratchy no matter what I do.

Some Doctors say that Hypothyroidism, infection, viral or bacterial infection, an automobile accident or the development of another disorder such as rheumatoid arthritis, or lupus may be a triggering factor to the fibromyalgia syndrome. They may not cause FMS but they may awaken an underlying physiological abnormality that’s present in the form of a genetic predisposition. Some people also have urinary complaints including a strong urge to urinate all of the time and have pain in the bladder area. I ended up having two surgeries on my bladder and had to use a catheter after first urinating to completely empty my bladder for three years. I have also had a colonoscopy where they removed several pre- cancerous polyps, which has to be repeated every year. So, you see how much havoc fibromyalgia can do to your entire body, inside and out.

Perhaps not every illness is due to fibromyalgia but the majority of what I have gone through has been diagnosed as fibromyalgia. The new name for it now is called FIBRO. It is much easier to say and women that have it know what you are talking about. It is hard to believe that a disorder such as Fibro can cause so much pain when not many people are aware of it. Other people have heartburn or gastrointestinal problems that include difficulty swallowing, gas, cramping, abdominal pain and alternating diarrhea and constipation. I take two Prevacid in the morning and two at night to keep the acid reflux from causing a lot of discomfort and pain as many others have too also. Before we found out that I had acid reflux disease, I had problems swallowing and could only eat small pieces of ice without choking. Dr. Brown also found that I have pre-cancerous polyps in my stomach so when I have the yearly Colonoscopy she looks into my stomach also and removes the pre-cancerous polyps.

We also found out that I had H-Pylori disease in my stomach, which caused terrible stomach pain that sent me to the hospital for five days with great pain. Next they had to dilate my esophagus twice so that I could swallow food and breathe properly and removed polyps from my stomach.

One summer I went without being able to breathe out much air and coughed continuously without the Drs. knowing what to do about it. They said that it was not asthma and went into my lungs to see if there were any spots. All they found were scars from having bronchitis before and gave me inhalers to help me breathe more comfortably while I slept on three pillows. It is strange but after that summer left I now no longer have trouble breathing. We had horses and one Doctor thought that mucking the stalls caused me not to be able to breathe so that chore was left up to my husband who takes great care of me.

So you can see that fibromyalgia can affect any part of your body and you may never know exactly what you have. It may take you many Doctors to properly diagnose your problem because there are many diseases that are comparable to fibromyalgia. You may find other symptoms such as painful menstrual periods, muscle twitching, chest pain, irritable bladder, morning stiffness, memory impairment, dizziness, nervousness, skin sensitivities such as your skin burns to touch it. That usually happens on my legs which is quite unbearable. You can have frequent changes in eye prescriptions along with the feeling of burning or itching eyes and aching in your arms and legs along with muscle spasms, headaches and skin rashes.

Doctors that have studied fibromyalgia say that it affects up to 5% of the population including children. This disorder could be hereditary so you may find that you have family members with similar symptoms. Discuss your symptoms with someone, write them down and visit your local Dr. to see if they will run tests and try to diagnose what is wrong.

There are other disorders or diseases that fibromyalgia mocks in some respects so it does take a bit of investigating to realize exactly what your problem is. Be patient with your Dr. and understand that this is a disorder that is hard to diagnose. The best Doctor to see if you feel you have this is a Rheumatologist.

Our best way of looking at fibromyalgia is to know that it is not life threatening. The symptoms are very uncomfortable and very painful plus it causes extreme fatigue every day. It is chronic and will not go away. I hope one day they will find a medication that will help us to combat all of the reactions that we have to the many discomforts that we go through. As of now, there is no cure but there are medications such as muscle relaxers, pain relievers, rest and gentle stretching exercises that can relieve some of the distress. I would also recommend taking Coral Calcium. I have just begun taking it and within a week I think that I feel better.

The best way of relieving some of the discomfort is to stretch and do low impact aerobic exercises that will not cause tension to the body.

Swimming, water exercises even in the bathtub will help to relax your aching muscles. Personally, I have a regimen of exercises that I do for about twenty minutes in the bathtub of very warm water to stretch my legs, strengthen my arms and flatten my stomach. I have had much success in reshaping my body in just the last two months since I began a format of regular low impact exercises in a bathtub full of water.

You could exercise in the water much better if you have access to a swimming pool where you can do water aerobics daily.

Exercising in the water is much easier on your body because the weight of the water makes less resistance on you and will help you move more freely without pain. Also, if you begin walking to stretch your muscles, start at a slow pace for a short distance and then up the pace and the distance as you feel more comfortable. If you begin cramping or having pain sit down, and breathe through it. It is best to carry a cell phone with you so that you can call someone to pick you up if you get into trouble and feel that you can’t make it back home.

The symptoms of fibromyalgia are made worse by stress and poor sleep. Sadly, you may find it hard to get any sleep because it goes along with this disorder with some people. Talk to your Dr. and they will give you something to help you sleep. The more sleep you lose the worse you will feel. You may find that taking a nap may help. Try going to bed at the same time every night without a television. Avoid alcohol, food and caffeine, which causes poor sleep at least three hours before bedtime. Most people don’t know that when you have fibromyalgia that the sleep you lose cannot be made up and it causes more stress on your body and brain. Sometimes you may feel as if you cannot think properly or say what you mean and they call that ‘brain fatigue’ from the lack of sleep.

Many people try to do as much as possible on their ‘good’ days which lead them to have several bad days in a row. Try to keep your level of activity the same every day to stay relaxed and avoid stressful situations. Do not overdo it when you feel good. I find it very hard not to do everything that I can’t do when I am feeling so much pain. My husband constantly reminds me to take it easy so that I might have another good day the next day. Remind yourself when you have lots of energy to take it easy and not to stress your body or your mind with complications that you can do nothing about.

You may become depressed because of your constant pain and fatigue and the frustrations that you feel with this condition. Some people turn to antidepressants but I have not found them to help my pain so I pass on them.

Studies are showing alterations in neurotransmitters regulation pertaining to the immune system function, sleep physiology, and hormonal control may show that serotonin, norepinihrine and substance P has been found to be elevated three fold in the spinal fluid of fibromyalgia patients. Two other hormones that have been shown to be abnormal are cortisol and the growth hormone. There may very likely be a dysregulation in the way the brain operates. It is also being evaluated to determine if the autonomic nervous system is not working properly. As fibromyalgia is studied there will be medications that will be prescribed for fibromyalgia or chronic fatigue syndrome that may have a favorable impact on the transmitters in our brain and body as well.

Most fibromyalgia patients say that they ache all over and feel as if their muscles have been overworked. They may even feel their muscles twitch, burn or go into a frantic painful spasm. Most people describe the pain as deep muscular aching, throbbing, burning, shooting and stabbing pain. Personally, I have found that eating red meat causes me more pain and also goes right through me within an hour or less. More women are diagnosed with fibromyalgia; however there are men that are diagnosed with it also. Perhaps the men are not diagnosed so readily because they refuse to visit the Dr. unless they feel it is absolutely necessary.

Last but not least I want to help you explain this disorder to your family so that they do not consider you a hypochondriac as so many families do. Remind them of the last time that they had the flu and ached in every muscle of their body and felt as if they were devoid of any energy at all. Let them know that fibromyalgia has no boundaries. It can even cause you to forget things that you were going to do or say because of the brain waves. They may even notice that you kick your feet all night which is called restless leg syndrome. Ask them to be patient with you on your bad days, which sometimes can last up to three weeks (which has happened to me) and enjoy your good days with you. Be sure that you do not over do it on your good days or you will experience a setback for a day or two or more. Until this disorder is studied and understood have a family member go to the Dr. with you. Let them hear what the Dr. prescribes and have him or her to explain it to your family. Thank God that I have a wonderful husband that understands my ups and downs and allows me to sleep when I need to or to stay in bed until the pain goes away. I also have a wonderful team of Doctors in Dayton, Ohio that help me to get through the bad times. My gratitude goes to my family Dr. Barbara Bennett, in Huber Heights, Ohio (937-233-4252). She sent me to my wonderful Internal Specialist in Beavercreek, Ohio who is Dr. Ingrid Brown (937-429-0607). They are the most caring, loving and attentive Doctors that I have ever had to help me through this crisis that I will have to endure for the rest of my life. Most people that have fibromyalgia look as normal or healthy as anyone else and it is hard to tell that they are sick unless you happen to be around them when they are feeling pain or are having problems walking. Most of us look just as healthy as everyone else but are wracked with pain most of the time.

There are many sites on the Internet that you can follow up on Fibromyalgia and Chronic Fatigue Syndrome that may give you more detailed information and direct you in other directions.

Thank you for your interest, and if you would like to e-mail me about fibromyalgia or chronic fatigue syndrome you may contact me at: tlesley@sbcglobal.net and I would be happy to talk to you. I hope that I have helped someone with fibromyalgia or chronic fatigue syndrome understand it a little better and know that they are not alone. Your pain is not in your head so do not dismiss it.

There are medications that can relax you and relieve some of your pain if you find a Doctor that understands what you have. Call around and ask the Doctors’ receptionist if their Dr. works with people with either disorder. I leave you with prayers of relief, rest and love.

May God bless you on your journey and may your experience help others to understand exactly what these disorders are. There are many people that have never heard of either one of them and there are many people suffering with it.

If you want to share your thoughts you may also post them on my guest page so others may read what you have to say. Once you finish writing in the guest page you will see a block with letters and numbers that you must copy to be posted. There is a very good site about fibromyalgia, which is called Fibromyalgia Network. You may find it at: www.fmnetnews.com for symptoms, treatments and research. It is a very helpful site for those who believe they may have fibromyalgia or are experiencing illnesses that their Doctors cannot diagnose.

I wanted to share with my readers that may have the same symptoms as I do to take notes and visit your Dr. with a list of all your complaints. Some of my illnesses such PAD may not be related to fibromyalgia. When you are sick or feeling bad, meditate, pray and try not to become stressed out or overdo any activity including walking for too long while shopping. Rest and a warm bath may be the most soothing way to get through the day. May God bless you and give you a good outlook on life even if some of our days are painful or just a bad day. Life is beautiful, and the sun comes shining through eventually for everyone in one way or another. Miracles, blessings and love find their way to those who ask for guidance, healing or inspiration. I would like to request prayer for myself and others that are in the same predicament as I.

I would like to offer you some wonderful information about a New Miracle drug that is advertised on TV Commercials. It is called LYRICA. I have taken it for a year or longer and I no longer have a lot of pain and I sleep just fine. I still get sleepy during the day sometimes. I take 10 mgs of Valium in the morning and 10 mgs at night for the spasms.

Talk to your Doctor about Lyrica and become almost pain free. There is no weight gain or side affects that I have experienced. It has made me feel much better. My thoughts and Prayers are with you.

Written by: Tamara Lesley

Recommended site for more information The Arthritis and Glucosamine Information Center or Email Tim Mertes at: tim@glucosamine-arthritis.org

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Last Updated Sept 2012

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