Getting Diagnosed if you have Chronic Fatigue Syndrome and Fibromyalgia



Print Friendly
Chronic Fatigue Syndrome and Fibromyalgia
Tawra having a, "How quickly before I die"…I mean a bad CFS day…

 

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.

[coupons]

 

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

[coupons]

 

Comments

  1. says

    Morning Stiffness this is what helped me with that problem.
    as soon as possible in the morning have a hot shower. I know this adds to the bills but do a few stretching exercises while in the shower. ex. scrub your feet by bending down to them instead of bringing them up to you. Let the hot water hit your lower back if that is a sore spot.
    When I do this I take about 7 min. shower instead of my usual 3 min. one and it makes life easier during the day.

    Temperature Sensitivity I was always way to hot. It was a joke that mom only turned up the heat when the cats asked for parka’s. But it did have a bearing of truth. When I am sick I will go into the bedroom close the door and put a towel at the bottom open the window and lay down on the bed. I feel better in the cold with a breeze. My husband is the opposite. He needs to sweat out his illness.
    As you can probably tell this creates a few problems in sleeping arrangements. I solved part of it by buying white flanelette sheets and white cotton ones. I use a flanelette sheet on either the top or the bottom and cotton for the opposite. He gets flanelette pillow cases and I get cotton ones. In the winter I use comforters and when I go to bed I fold or roll them to the middle so I don’t have to use them.
    We joke that it makes the bed look the pioneer times when if men and women had to share a bed they put the bolster down the middle. But hey it works.

    Hair Loss never had the problem I inherited my hair from my grandmother who at 92 was still having a hair dresser come once a month to thin her hair out. Love that woman. But apparently flax seed oil helps when you do have the problem.

    Shopping I hate shopping. the only shopping I enjoy is grocery shopping when I get to a place with a large store with lots of things in it.
    My advice is to not plan a day to get all the shopping done.
    Don’t plan to shop for school clothes for all the kids the same day and then get groceries, go to the hardware store for those 3 things your husband asked you to pick up.
    take one child at a time to buy clothes, maybe take them for a pop to sit and relax half way through. it makes them special and leaves you with a bit of energy.
    If a friend asks you to go to the mall to window shop don’t automatically say no because you know you won’t be able to walk all that time and not hurt. Say yes but tell her that you might have to take a break and when you do just say that she can keep going but you will meet her in a bit at the food court where you can sit have a drink and read a book while you wait. You get to socialize, see some different scenery and just get out of the house while dressed nicer than you would at home.

    Now here is a trick I learned a few years ago. If you have to use public transit and getting a seat is almost impossible. Take a cane with you. My husband bought me a collapsible cane it goes to about 8″ folded up and fits into a purse or shopping bag. Use it on the bus and you will be almost guaranteed a seat. If you don’t look sick and disabled you don’t get treated that way and in some ways that is good. But on days you feel like falling over and crying a bit of notice is helpful so use what you have to.
    One thing that always bothered me was “how are you doing today?” well most days I felt like death warmed over and was barely functioning but who wants to tell everyone that. so my common answer was “better than the weather” if it was a horrible day or “not as good as the weather” if it was a beautiful day. Nobody really wants to know anyway it is just a form of greeting.
    Don’t stop looking for other causes for your aches and pains. It may just be you don’t have fibro. after 20 years of fibro I find out I never had it.
    go figure.

  2. Odessa says

    Hello, I’m so glad you wrote this article as I have CFS, Fibro, Hypersomnia, Narcolpsy, Restless leg, Depression and I think that’s it. I’m only 37 and the single mom of 5. I lost my job 2 years ago, and things have gone down hill since. I feel that no one really believes that I’m ill and that I’m just making it up. I feel bad when I do not have the energy to play with my children or take them places to do something fun. I’m on my way to bed now but just wanted to say thank you for sharing your story.

    • says

      Odessa try to hang in there. All of us being sick with CFS etc. is a nightmare but I really think the hardest on us was our friends, family, doctors and people in general not understanding or believing we were sick even worse not even wanting to understand or learn about it.

      I always say the day I made up my mind to accept the fact I was sick and to stop worrying about what others thought about me (I was lazy – did they forget I worked 60-70 hrs a week when my husband left and supported my kids with no help from them or anyone?- or they’d say I was depressed – I worked at a counseling center and was training to do counseling, had been tested time and again by places like the CDC and found not only not to be depressed but amazingly well emotionally stable, my kids too. Tawra always jokes and says she has papers to prove she is normal.) anyway that day was a turning point for me.

      I hadn’t realize how much physical and emotional energy I had been spending begging, pleading and trying to explain to people so they would understand. When I stopped that and decided here I am and I know my heart and so does God. I can’t help being sick any more then someone who gets a cold or cancer can help it. Even people who obsess with living a healthy life style will at some point have a time of illness. I actually started doing slightly better from that point on. Oh no miracle cure but I went from being bed ridden all the time to only half of the time and was able to start studying myself and what made me sick. Then I tried to stop doing those things even if it make a few people who didn’t understand upset or angry at me.

      For example I had been badgered by my parents to come out every month to see them. I not only didn’t have the money but I could hardly drive to the store let alone 500 miles. They couldn’t understand why. I would explain over and over until I was exhausted. I then learned to say I can’t come right now and leave it at that. They used the guilt thing but I learned not to let it bother me. They still try to guilt me in to coming more often but I just nicely say I can’t and go about my business.

      It’s hard I know, but the best thing you can do is to allow yourself to be sick and just do the best you can for the moment. Now on the other hand of course that doesn’t mean just give up and don’t bother to try. There is a fine line there between the two and I think we each in our hearts if we are honest with ourselves knows the difference. Once again hang in there and most of all veg out when you can.

  3. Jackie says

    My question is..how do you know you have depression? Does it have to be an official diagnosis? Does a doctor have to note it in a chart somewhere for you to really be able to say you have it? Or do they just have to have prescribed medication for it?

    • says

      Jackie once again I am not an official doctor I can only tell you what I know. First there are many different degrees and types of depression. Also some depressions are caused by sever chemical imbalance of some sort in your body others are caused from emotional things which happen in our lives (like a death, divorce etc) which then in turn can cause us to have a chemical imbalance but not always.

      You don’t always have to take medication especially in the milder cases. Now if you are wanting to get disability for depression yes the doctor needs to diagnosis you and you have to usually go to more then one doctor and doctors who specialize in that area too.

      Years ago before they knew too much about CFS they did have one test they did and they said people who are depressed have this one thing in their blood where the people who have CFS don’t have it so that was one way they could tell the difference.

      Depression has many different symptoms. To many for me to write about here but you could google it and that would give you more info. Most of the time it is hard for the person themselves to tell they have depression especially if it is sever or maybe I should say they know something is wrong but part of the depression is they don’t care or have the will do do anything about it.

      That is one other thing which is different because people with CFS still struggle and try to find help and want help badly. Now like I said I am no doctor and different cases differ. These are just general rules so if you think you have a problem you need to get help.

      One thing too. Don’t be afraid to see a psychiatrist or counselor. They are no different then any other doctor. We are made up of 3 parts the emotions, body, and soul or spirit. In the same way we will go to a doctor to have our body fixed or a pastor or priest to have our spirits fixed we should go to have our emotions fixed. You may have to try a couple of different ones though. In the same way we like certain doctors or pastors better then others and feel more comfortable with them you may have to try a couple of different psychiatrists to find one you are comfortable with. Don’t just give up if you don’t like the first one and if you don’t come away feeling encouraged or slightly better you need to go to someone else.

      The sad thing is there is really so much help out there but most don’t seek it and often it is an physical problem or imbalanced which can be easily fixed.

  4. Renee says

    Oh wow! It’s like you are telling my story! In 8th grade I got sick with some mystery illness (they diagnosed it as mono b/c that’s all they could come up with even though the test was negative. I officially got mono the next year). It forever changed my life. I was out of school for 2 full weeks but never fully recovered. I went from straight A’s to struggling to make B’s and C’s. I was falling asleep in class, but laying awake all night. It was miserable. I hurt all over, I was tired, but I also felt like I was crazy. I was a teenager – I should have been having a blast and living life to the fullest! By my senior year in HS I was struggling more and more. By the end of the year I had been to countless specialists, many not finding much of anything… others diagnosing some things here and there. By the end of my first semester in college I was diagnosed with asthma, IBS, gastritis, colitis, GERD, hiatal hernia, auto immune thyroid something-or-other (sometimes high, sometimes low), hypoglycemia, CFS, Fibromyalgia, spina bifida, possible endometriosis, depression, ADD (the lady had never met someone with such a late onset of it), etc. It was crazy! In some ways I was relieved to know I wasn’t crazy, but then again I still didn’t want to talk about it b/c even though I had a diagnosis I still felt like I was trying to throw myself a pity party or something.

    I am now 28 years old and a SAHM of 4 children 5 and under. For some reason I still forget my Fibro and CFS diagnosis and feel like such a wuss when I just can’t do what I feel like I should be able to do. My body went crazy on me again a few years ago and they retested me for all the usual stuff (thyroid, rheumatoid, lupus, etc.) and even went so far as a scan for MS b/c I had all the classic symptoms. Some days I struggle, some days I feel like I can finally function. My 3rd child was diagnosed with severe food allergies while I was still nursing her and I felt amazing on my limited diet. Once I started adding things back in (found out I was preg. with #4 1 week after her diagnosis and just couldn’t eat enough calories to nurse one baby and grow another) I found gluten was a HUGE trigger for me. It’s crazy. I kept trying to convince myself that it wasn’t true b/c I love my breads and pastries but after 3 or 4 rounds of trying to start back eating it I surrendered to my crazy body and have been GF since. My baby has major issues with dairy so that is also out for me at this time. I need to look around on your site some more and see if you have more tips and suggestions for day to day living.

    Thanks so much for sharing your story! I am always afraid to tell people about my medical history, even new doctors, b/c it sounds so pitiful and ridiculous. It’s comforting to know I’m not alone, although I wouldn’t wish it on anyone!!

    • says

      We relate to everything you mentioned Renee. Just this week my DIL said they could probably never move because trying to explain every thing about my son’s condition (he has CFS too) to a new doctor would almost be impossible because he has such weird symptoms.Be sure to wander around on the web site because even if an article doesn’t have CFS or FM in the title we still mention it quite often like in our cleaning articles and how to do things when you are sick or have no energy. How not to be so hard on yourself and try to have a Martha Stewart house when you are sick and with little children because in your shoes even Martha couldn’t probably do much more then what you are.

      The main thing to learn is to find out what makes you worst and then as much as possible don’t do that thing. For example noise and even just talking to someone one on one for an hour or so really makes me sick so I have to limit that as much as possible. It is isolating but I have learned if I am going to a grandchild’s concert then the next day to have nothing planned because I will be sick. That is so much harder to do when you have little ones I know. For me changing my diet made no difference but it did seem to help Tawra so do what works for you.

      Most of all remember 2 things – you aren’t crazy and you really are sick so allow yourself to be sick. Being sick is not a sin. God never said to repent of cancer or any other illness because He understands there will be sickness in this world and often not because of anything we have done. One thing the doctors at the CDC told me was that there was one trait that stood out among people with CFS was they seemed to work harder at trying to get well more then many other illnesses. It flattens most people just to have a cold or flu but yet people with CFS and FM keep functioning when they have an illness that is 100 times worse and usually with out the support and understanding of family members and friends.

      Hang in there and holler if you have any questions. Trust there is some merit to the saying misery loves company or if nothing else it helps you to realize you really aren’t as crazy as what others can sometimes make you feel like.

Leave a Reply

Your email address will not be published. Required fields are marked *


5 + two =

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>