Getting Diagnosed with Chronic Fatigue Syndrome and Fibromyalgia

Here are many of the symptoms of Chronic Fatigue Syndrome and Fibromyalgia, along with information about how to get diagnosed if you have one or both of them.

You can read Part 1 in my About Chronic Fatigue Syndrome and Fibromyalgia here.

Getting Diagnosed

Note: As of 2009 there weren’t any tests that they had to diagnose Chronic Fatigue Syndrome, but in late 2009 they think they have found a virus that causes it. It is now being debated in the medical community. For the purposes of this article we will assume that they haven’t found the cause yet. 

To get diagnosed: basically they test you for everything from Lupus to MS to thyroid problems and everything comes back negative. Then they tell you you have Chronic Fatigue Syndrome. There is a list of Chronic Fatigue Symptoms on the CDC site and you can look at them and see if they sound like you. Print it out and then take it to your doctor. If you doctor doesn’t work with you, if you can change doctors, do it until you find one that will work with you.

I KNOW that is much easier said than done. Mom and I have spent over 20 years finding a doctor that would listen. Ours do now but I think doctors in general just don’t listen and plain don’t know what to do for it.  You really have to be firm and even a dork sometimes to get them to listen to you. Keep insisting on trying something new. You shouldn’t have to be agonizing pain 24/7. You can get at least a little relief with some drugs. Although it is usually only things ibuprofen for the pain etc.

 

 

Sites for information on Chronic Fatigue Syndrome and Fibromyalgia:

Centers for Disease Control
Fibromyalgia Symptoms
Immune Support.com  – This site does sell supplements and vitamins. A portion of their proceeds go to Chronic Fatigue Syndrome research. They do have many good articles on Chronic Fatigue Syndrome and Fibromyalgia .

I personally believe Chronic Fatigue Syndrome and Fibromyalgia  are 2 different illness. Why? I have Chronic Fatigue Syndrome and Fibromyalgia  but my mom and brother only have Chronic Fatigue Syndrome. They don’t have any of the Fibromyalgia  muscle pain. I also think it’s two different things because when I am pregnant I can hardly move my Fibromyalgia  is so bad. (from not using your muscles, which helps with the pain some.) But my Chronic Fatigue Syndrome (which is made worse with exercise) was much better because I was on bed-rest ( for high blood pressure) resting all the time. I don’t have swollen lymph nodes or a sore throat etc.

I really can tell a difference which of them is worse from one day to the next.

Here are some notes of things that I have the worst time with and what has helped.

 

Fibromyalgia Symptoms

Tender Points – When these areas are pressed, they hurt VERY badly. (For me it makes me sick to my stomach) It hurts to even have my husband give me a hug. The main places are the base of the head, shoulders, back on the shoulder blades, the insides of your arms by your elbows, the backs of your knees, lower back on each side right above your buns. The pain is so severe it puts you into tears sometimes. This is a good chart to show the Fibromyalgia tender points or trigger points areas.

Muscle Weakness– You feel like your going to drop something. If you hold something like a heavy purse “the wrong way” for an extended period it can feel like you have damaged that muscle.

Mental Confusion – You feel like you have Alzheimer’s or are “losing your mind”. (This is the thing I hate the worst!)

Trouble Sleeping and Fatigue – This symptom can be mild in some patients and incapacitating in others.

Flu-Like Symptoms

General Malaise – Malaise is a generalized feeling of discomfort, illness, or lack of well-being that can be associated with a disease state. It can be accompanied by a sensation of exhaustion or inadequate energy to accomplish usual activities.

Increased Thirst

Irritable Bowel Syndrome – Alternating constipation, diarrhea, frequent abdominal pain, bloating and abdominal gas.

Morning Stiffness

Chronic Fatigue Syndrome Symptoms

Have severe chronic fatigue of six months or longer duration with other known medical conditions are excluded by clinical diagnosis, and concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours.

Fatigue – This symptom can be mild in some patients and incapacitating in others. Even after you have slept a good nights sleep you wake up tired.

Mental Confusion

Flu-Like Symptoms

Frequent Urination

General Malaise – Malaise is a generalized feeling of discomfort, illness, or lack of well-being that can be associated with a disease state. It can be accompanied by a sensation of exhaustion or inadequate energy to accomplish usual activities.

Hair Loss

Increased Thirst

Irritable Bowel Syndrome – Alternating constipation, diarrhea, frequent abdominal pain, bloating and abdominal gas.

Low Grade Fever

Morning Stiffness

Night Sweats

Shortness of Breath

Sore Throat

Temperature Sensitivity – Feeling hot or cold no matter what the temperature is. Extreme hot or cold weather can worsen symptoms. Also sensitivity to cold, damp or humid conditions.

Tender and Swollen Lymph Nodes – In the neck or armpit.

Headaches

Things that trigger Chronic Fatigue Syndrome and make me sick:

Noise – dogs continually barking, continually having someone talk to me, trying to listen to the radio while someone is talking to me, fans running, baby crying, loud music, computer fan, a/c heat fan running, trains etc.

Social activity – including church functions, going to friends house etc.

Talking – on the phone or in person.

Shopping

Heat and humidity

Adrenaline Rush – such as being scared or laughing

Exercise – anything that causes me to exert myself.

Lack of Sleep

Stress – emotional, financial, physical

Standing for long periods

Holding my arms up for long periods, like painting a ceiling.

There are times when I literally can’t lift my head off the couch. Usually it’s on a day when I have done too much and made myself sick. If you ever hear me talk about laying down on the floor and not having the strength to get up, that’s what I’m talking about.

You can read part 3 on How we cope with Chronic Fatigue Syndrome and Fibromyalgia here.

Tawra