Discussions By Condition: I cannot get a diagnosis.

Been struggling with this off and on since 1989 ... CFS? Fibromyalgia?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Tamara999
  • February 27, 2008
  • 08:13 AM

In February 1989 I had a flu that never went away. I had flu-like symptoms, a constant (killer) headache, sore throat, stomach ache, tightness in my chest, post nasal drip and the kind of mental spaciness you get when you have a fever -- but never had a fever. I was diagnosed with Epstein Barr virus (later called Chronic Fatigue Syndrome) and was put on disability for 3 years -- though my insurance company did fight it saying I was "only" depressed. All I could do was lie in bed. It was a horrible life. I went back to work in 1992 but would only survive by coming home and going straight to bed on week nights and then sleeping entire weekends away. The disease went into submission some time in the late '90's though I never understood why.

Fast forward to 2004. The disease reared its ugly head again. Same symptoms: really bad headache -- like a band tight around my forehead, temples, and the back of my head, mental spaciness like I was getting a fever but no temperature, horribly nauseated and sore stomach (could not stand to have any clothes touching it), tight chest, aching muscles. I would cry in the elevator on the way up to work. I would go down to my car and sleep for a couple hours as my lunch break. At the end of the day I would go straight home, eat dinner and go right to bed. This time I was diagnosed as having Fibromyalgia and soon I was written out of that job on disability.

Now I am unemployed, trying to get back to work -- needing to get back to work -- and YOU GUESSED IT just a week and a half ago my mysterious illness has crept back up (at the worst possible time). I am also noticing that while I am overtaken by my flu-like symptoms, the nausea and the headache during the day (I sleep until around 4 or 5 pm), I am able to get up around 5pm and feed myself and take care of things I need to tend to in the evening. My pain seems to lessen a bit at night, however, I am extremely hot and sweaty no matter what the weather is like; no matter how cold.

I went to my doctor Monday and she wants to do a number of blood tests. We are holding out to see what my past tests have revealed and -- well, until I am employed and have insurance. Which is a catch 22 since right now I am too ill to interview (unless I could schedule some interviews at 7 or 8pm!).

Does anyone have any idea what is going on with me? Does this sound like EBV or Chronic Fatigue or Fibromyalgia because I have tried those treatment options and they never seemed to fit. Nor did I fit their symptom list enough to feel comfortable with the diagnosis.

Anything would be a great help. I am completely lost and feeling desperate. Thank you so much!

Tamara

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8 Replies:

  • Thanks, Blaze. I'm checking out all those links. I appreciate all this info!!!
    Tamara999 4 Replies
    • February 29, 2008
    • 07:23 AM
    • 0
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  • Hi Tamara99,I am sorry you are having these symptoms. I am not sure what they might be from. I had the profound fatigue as well as headaches, but no fever. I was also diagnosed with CFS at one point. I know how horrible the fatigue is. It can be very humiliating when you want, and are expected, to get things done but feel completely sapped of all strength.I ended up having something called Hashimoto's Encephalopathy, but I don't know if this would apply to you at all. HE is a rare complication of autoimmune thyroiditis. It took me 8 years (and 8 neurologists, and thousands of dollars in co-pays) to get diagnosed, and i only found out about the thyroiditis after the encephalopathy was diagnosed, as my thyroid hormone levels were always okay. Many people with HE have normal thyroid hormone levels. It is diagnosed by checking thyroid antibodies (to thyroperoxidase and thyroglobulin), which will be elevated. After they found my antibodies, they did an ultrasound of my thyroid gland, and sure enough, it was full of tiny nodules from the autoimmune destruction. I was floored, because they had been reassuring me that my gland was healthy for years! Not so.I have also recently discovered that i have a small hole in my heart between the atria- a patent foramen ovale. These have been associated with migraines. They shunt deoxygentated blood from the right side of the heart to the left side of the heart, so your body and brain get slightly deoxygentated blood. So, it's possible they contribute to some of the fatigue. They can also be asymptomatic. Exertion tends to open the hole up and looking back this probably explains some of the headaches I would get on extertion, but I'm not sure...It could also be the HE, and I do think most of them are from the HE since they got better after steroids, the treatment for HE.Another possibility to look into is celiac disease, especially since you seem to have a lot of stomach symptoms.There are a lot of other things it could be too, including CFS, Lupus, etc. We don't know what causes CFS yet, but I strongly suspect it has something to do with the immune system negatively impacting the central nervous system. I know the HE fatigue was pretty profound, and that is immune-modulated. The "on and off" nature of your illness suggest something immune or autoimmune mediated.I hope you start getting some kind of answers soon. I know how humiliating the fatigue is, especially when you might look okay on the outside and so people expect that you can do more than you can. Chronic headaches are no fun, either.Best Wishes.
    Anonymous 42789 Replies
    • February 29, 2008
    • 00:34 PM
    • 0
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  • Yes, it sounds like fibromyalgia. Have you tried Lyrica?
    Anonymous 42789 Replies Flag this Response
  • You will want to read this also...http://www.quackwatch.com/01QuackeryRelatedTopics/ploys.htmlBe leery of these shills vigorously pushing LYME DISEASE with hundreds of postings who would love to have you come and spend your money on their quack cures. :rolleyes: Lyme disease though it can be a real disease can be used as a fad disease for some shills to make a ton of money. Blaze acts like a shill, and posts all these LYME POSTS all over this board. :rolleyes: I think you'd be better off looking into other causes for your illnesses. The thyroid I'd look into first . Also look into depression, though with the amount of symptoms you are having it would be considered normal to be depressed right now. It is rare but you have abdominal pain and psych symtoms so it needs to be ruled out, but also look into acute intermittant porphyria http://www.porphyriafoundation.com/about_por/index.html. The fact you went awhile without symtoms I find interesting as that is what can happen with some of the porphyria diseases. And also look into Intestinal Overgrowth http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm if you have been on a lot of anti biotics. And diabetes/pre-diabetes http://www.diabetes.org/about-diabetes.jsp. Thyroid diseases also need to be looked into. Try to eat a nutritious diet, stay well-hydrated and get enough electrolytes; get plenty of rest and sufficient excercise. Get enough vitamins and minerals. Try digestive enzymes for the tummy upsets too; especially if you take acid blockers or proton pump inhibitors. Some herbals like enteric coated peppermint oil caps can help tummy pains and spasms but talk to the dr first as some herbals can be powerful and dangerous even depending on the medicines you already take and the way you body handles them. tdwi Thanks, Blaze. I'm checking out all those links. I appreciate all this info!!!
    TaylorDeelwithit 382 Replies Flag this Response
  • Thanks, Elke -- I have printed out a bunch of information that I will take to my doctor tomorrow.Thanks, Netta -- My doctor has some samples she is going to give me tomorrow.Thanks TDWI -- I am checking out your sites also. Elke's illness has a lot to do with the thyroid -- and something that can go undetected! I am now armed with a lot of helpful info. And I REALLY APPRECIATE IT!!:o
    Tamara999 4 Replies Flag this Response
  • And, TDWI, thanks for the words of common sense at the bottom of your post. Those are definitely words to live by and actions I must incorporate into my daily living if it is to be daily healthy living. Will do! :p
    Tamara999 4 Replies Flag this Response
  • In February 1989 I had a flu that never went away. I had flu-like symptoms, a constant (killer) headache, sore throat, stomach ache, tightness in my chest, post nasal drip and the kind of mental spaciness you get when you have a fever -- but never had a fever. I was diagnosed with Epstein Barr virus (later called Chronic Fatigue Syndrome) and was put on disability for 3 years -- though my insurance company did fight it saying I was "only" depressed. All I could do was lie in bed. It was a horrible life. I went back to work in 1992 but would only survive by coming home and going straight to bed on week nights and then sleeping entire weekends away. The disease went into submission some time in the late '90's though I never understood why. Fast forward to 2004. The disease reared its ugly head again. Same symptoms: really bad headache -- like a band tight around my forehead, temples, and the back of my head, mental spaciness like I was getting a fever but no temperature, horribly nauseated and sore stomach (could not stand to have any clothes touching it), tight chest, aching muscles. I would cry in the elevator on the way up to work. I would go down to my car and sleep for a couple hours as my lunch break. At the end of the day I would go straight home, eat dinner and go right to bed. This time I was diagnosed as having Fibromyalgia and soon I was written out of that job on disability. Now I am unemployed, trying to get back to work -- needing to get back to work -- and YOU GUESSED IT just a week and a half ago my mysterious illness has crept back up (at the worst possible time). I am also noticing that while I am overtaken by my flu-like symptoms, the nausea and the headache during the day (I sleep until around 4 or 5 pm), I am able to get up around 5pm and feed myself and take care of things I need to tend to in the evening. My pain seems to lessen a bit at night, however, I am extremely hot and sweaty no matter what the weather is like; no matter how cold. I went to my doctor Monday and she wants to do a number of blood tests. We are holding out to see what my past tests have revealed and -- well, until I am employed and have insurance. Which is a catch 22 since right now I am too ill to interview (unless I could schedule some interviews at 7 or 8pm!). Does anyone have any idea what is going on with me? Does this sound like EBV or Chronic Fatigue or Fibromyalgia because I have tried those treatment options and they never seemed to fit. Nor did I fit their symptom list enough to feel comfortable with the diagnosis. Anything would be a great help. I am completely lost and feeling desperate. Thank you so much! Tamara Sorry to hear that you are suffering from a horrid illness. I myself have CFS so will try to help answer your questions about it. The disease went into submission some time in the late '90's though I never understood why." CFS does that (but then there are other diseases out there which do that too). My own CFS went into remission for many years before coming back. I am able to get up around 5pm and feed myself and take care of things I need to tend to in the evening. It has been found that many women with CFS.. have low morning cortisol levels.. cause of this, they can be worst in the mornings but pick up later in the day (I used to not be able to do much till about 2.00 pm and recently did have my cortisol tested and it's very low). So that symptom may be a sign to ask doctor to check your morning cortisol levels. This time I was diagnosed as having Fibromyalgia and soon I was written out of that job on disability. A fourth of people with Fibro..also have CFS (or end up with it). More people thou with a CFS diagnoses have fibro. These two illnesses very often go together. Does this sound like EBV or Chronic Fatigue or Fibromyalgia because I have tried those treatment options and they never seemed to fit. Ones with CFS often have reactivating viruses.. sometimes EBV is involved. How was your EBV diagnosed? did they do a blood test looking for it? Im curious to why you believe CFS doesnt fit??? please explain? From what i can see it does fit. post nasal drip CFS studies where i live have been done on CFS and nasal staph. Many CFSers have staph in their noses and some kinds of staphs are toxic to our bodies (and those with CFS are more sensitive to things) and are often involved where we have post nasals drip. Get your doctor to do a nasal swab... treating the staph if there.. can sometimes improve things a little.
    taniaaust1 2267 Replies Flag this Response
  • Sorry to hear that you are suffering from a horrid illness. I myself have CFS so will try to help answer your questions about it. CFS does that (but then there are other diseases out there which do that too). My own CFS went into remission for many years before coming back. It has been found that many women with CFS.. have low morning cortisol levels.. cause of this, they can be worst in the mornings but pick up later in the day (I used to not be able to do much till about 2.00 pm and recently did have my cortisol tested and it's very low). So that symptom may be a sign to ask doctor to check your morning cortisol levels. A fourth of people with Fibro..also have CFS (or end up with it). More people thou with a CFS diagnoses have fibro. These two illnesses very often go together. Ones with CFS often have reactivating viruses.. sometimes EBV is involved. How was your EBV diagnosed? did they do a blood test looking for it?Yes, in February 1989 I was diagnosed with EBV by a series of blood tests. Im curious to why you believe CFS doesnt fit??? please explain? From what i can see it does fit. I guess I am still in denial about it. I come from a very strong "mind over matter" family and even now as I suffer a huge flare-up I am having trouble reconciling that I have something going on with me health-wise. Denial, denial, denial ... :eek: CFS studies where i live have been done on CFS and nasal staph. Many CFSers have staph in their noses and some kinds of staphs are toxic to our bodies (and those with CFS are more sensitive to things) and are often involved where we have post nasals drip. Get your doctor to do a nasal swab... treating the staph if there.. can sometimes improve things a little. I will have my doctor check this out tomorrow as well. Thank you.
    Tamara999 4 Replies Flag this Response
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