May I introduce myself?

Discussion in 'Fibromyalgia Main Forum' started by CelticLadee, Dec 9, 2002.

  1. CelticLadee

    CelticLadee New Member

    Hello ladies and gents...
    I feel very privileged to be here and find all of you after many frusterating weeks of searching online to find out "what the heck is wrong with me?" Here is a bit of my story: Spring 2001 I came down with Shingles - the beginning of my problems. Shingles rash went away but left me with fatigue, right temporal headache that radiated into my right nose sinus area and right front tooth. I might add I think I was running a low grade fever from then on but didn't start registering it until August 2002. To make a long story short...after checking with a dentist, an endodontist, an optician, a chiropractor and a M.D. I ruled out many possibilities. June 2002 came with no answers and I was running at 1/2 speed for a year with almost daily headaches, queasy tummy, etc. July 2002 I landed in the hospital with an abnormal EKG, chest pain, & high BP readings. After the usual bloodwork, MRI of heart, electrocardiogram of heart, stress test and all the fear and frusteration of the entire process I ended up with a loose end diagnosis of possibly acute pericarditis. (although nothing showed up on the electrocardiogram) 3 days later I was sent home and told to take 800 mgs of Advil 3 times a day for 5 days. I didn't get well after 5 days so they told me to take it for 10 days. I didn't get well after 10 days so they told me to take it another 5 days. Needless to say my liver didn't like it much and my ALT became elevated. I had scans of all my digestive organs and a MRI of my brain and plenty of blood work done to find things like hepatitis, lupus, etc. None of them showed anything wrong with me. In all these days I was experiencing fatigue, burning, tingling & numbness, aches and stabs of pains in my chest, arms, legs, shoulders and hands. The headaches and fever came almost daily and the fatigue never left. In fact it became impossible for me to stand and chat with neighbors as I would get so light headed I thought I was going to pass out if I didn't go home and lay down. I developed food & alcohol intolerances that were new to me. I lost 20 lbs. in 4 months. I could no longer sleep solid at night and the extreme thirst kept me up drinking and using the bathroom 2-3 times at night. My cognitive skills are at times embarrassing and cause my work to be inferior if I am not very careful. My head feels swollen & face is flushed at times. Out of desperation for help I recently visited a naturopath. After the ASI test and the Detoxification Profile he determined my adrenal glands are depressed (put me on DHEA)and I have high antibodies (put me on anti-viral supplements) and that my liver is malfunctioning a little. (taking epsom salt bath every other day for this) He feels at this point that it is the Shingles virus run amok causing the problem and so I'm taking a multitude of supplements to get my immune system beefed up. I have been blessed all my life with very good health and this is quite a shocking experience for me not to mention very educational. The naturopath I am seeing will not call this condition of mine CFIDS as he feels it isn't accurate or useful. I am wondering based on this summary of what went wrong with me and what my symptoms are what do you suppose I should call it? I appreciate any response and thank you in advance. Again I feel so glad to have found you as no one I know has experienced anything close to this and after reading several messages here I feel you may know something to help me here. Thank you very much. Peace, love & joy be yours. CelticLadee
  2. CelticLadee

    CelticLadee New Member

    Hello ladies and gents...
    I feel very privileged to be here and find all of you after many frusterating weeks of searching online to find out "what the heck is wrong with me?" Here is a bit of my story: Spring 2001 I came down with Shingles - the beginning of my problems. Shingles rash went away but left me with fatigue, right temporal headache that radiated into my right nose sinus area and right front tooth. I might add I think I was running a low grade fever from then on but didn't start registering it until August 2002. To make a long story short...after checking with a dentist, an endodontist, an optician, a chiropractor and a M.D. I ruled out many possibilities. June 2002 came with no answers and I was running at 1/2 speed for a year with almost daily headaches, queasy tummy, etc. July 2002 I landed in the hospital with an abnormal EKG, chest pain, & high BP readings. After the usual bloodwork, MRI of heart, electrocardiogram of heart, stress test and all the fear and frusteration of the entire process I ended up with a loose end diagnosis of possibly acute pericarditis. (although nothing showed up on the electrocardiogram) 3 days later I was sent home and told to take 800 mgs of Advil 3 times a day for 5 days. I didn't get well after 5 days so they told me to take it for 10 days. I didn't get well after 10 days so they told me to take it another 5 days. Needless to say my liver didn't like it much and my ALT became elevated. I had scans of all my digestive organs and a MRI of my brain and plenty of blood work done to find things like hepatitis, lupus, etc. None of them showed anything wrong with me. In all these days I was experiencing fatigue, burning, tingling & numbness, aches and stabs of pains in my chest, arms, legs, shoulders and hands. The headaches and fever came almost daily and the fatigue never left. In fact it became impossible for me to stand and chat with neighbors as I would get so light headed I thought I was going to pass out if I didn't go home and lay down. I developed food & alcohol intolerances that were new to me. I lost 20 lbs. in 4 months. I could no longer sleep solid at night and the extreme thirst kept me up drinking and using the bathroom 2-3 times at night. My cognitive skills are at times embarrassing and cause my work to be inferior if I am not very careful. My head feels swollen & face is flushed at times. Out of desperation for help I recently visited a naturopath. After the ASI test and the Detoxification Profile he determined my adrenal glands are depressed (put me on DHEA)and I have high antibodies (put me on anti-viral supplements) and that my liver is malfunctioning a little. (taking epsom salt bath every other day for this) He feels at this point that it is the Shingles virus run amok causing the problem and so I'm taking a multitude of supplements to get my immune system beefed up. I have been blessed all my life with very good health and this is quite a shocking experience for me not to mention very educational. The naturopath I am seeing will not call this condition of mine CFIDS as he feels it isn't accurate or useful. I am wondering based on this summary of what went wrong with me and what my symptoms are what do you suppose I should call it? I appreciate any response and thank you in advance. Again I feel so glad to have found you as no one I know has experienced anything close to this and after reading several messages here I feel you may know something to help me here. Thank you very much. Peace, love & joy be yours. CelticLadee
  3. Shirl

    Shirl New Member

    Hi, welcome to the board. I have Fibromyalgia, and never had shingles, so I am just welcoming you, and will let those who have CFS or had shingles answer you.

    It is so sad when someone is so healthy and then one thing happens to you, and leaves you so ill, with not much help around anywhere!

    You have come to the right place, we do have some very knowledgeable people here, and a whole lot of first hand experience too.

    Again, welcome to the board, and I sure hope you find some answers soon.

    Shalom,Shirl
  4. lisjhn

    lisjhn New Member

    Yup, you sound like one of us. Welcome to the new pain and frustration life has brought you.

    This board certainly helps though, it's very informative.

    Just wondering what anti-viral supplements your naturopath put on you? I'm interested in trying them if I haven't already.

    Again, welcome...
    ~LISA

    P.S. By the way, it may have been a blessing that you're naturopath wouldn't give you the official diagnosis of CFIDS. Because as you well know, this isn't just a syndrome!
  5. karen2002

    karen2002 New Member

    A very familiar story.
    There are many here, who were in excellent health, and then suddenly had the rug pulled from beneath them. This is a wonderful place to happen upon, I know, I was at wit's end, searching for answers and help, when I arrived.
    The only thing a diagnosis does for one, is give a sense of validity to all the symptoms we experience. We all know they are very real, and life-changing, some of the medical profession just haven't figured that out yet. Then there are those, physicians too, I suppose that reason, no diagnosis, no mis-management. There is the possibility also, that these diagnosis are handed out to easily, and makes for less investigating/work on the physicians part.
    I don't know--I do so wish we had the answers to this. Wouldn't it be wonderful to have a simple test, with a affirmative or negative result? Here, there is hope, and wonderful treatment suggestions, not to mention the overwhelming support of those who care.
    Welcome Aboard! Karen
  6. pam_d

    pam_d New Member

    Glad to meet you! I've never had shingles (tho I have had another odd herpes virus--herpes keratitis, in my eye) but there's a lot of your story I can relate to. I have FM, and have recently been dx by a new rheumy with CFS & sjogrens, however I'm not sure I'm in agreement him about the CFS. I don't have the extreme degree of fatigue you describe, but the tingling & burning pain, low grade fever, thirst & dry mouth, liver enzymes elevated (with an ultrasound of abdomen showing no problems, bloodwork shows no hepatitis)--these I can sure relate to. I hope you find some positive effects from your work with the naturopath; I am seeing an allergist these days who uses both natural & conventional medicine, testing for food allergies, toxins, yeast, etc. so I'm hoping some of this detective work yields something that will help me understand this better, if nothing else. I, too, like so many of us, have been thru the mill of MRIs, spinal taps, nerve studies, etc. to eliminate all other things. Sometimes, this is just a dx of exclusion. By the way, my FM came on virtually overnight like gangbusters, with extreme tingling from the waist down, muscle twitching. I had no gradual onset; one day, it arrived! Didn't even have pain, initially, so I resisted the FM dx for a long, long time. Now, it has settled into familiar patterns of aching & burning pain, and the original twitching & tingling still, but less so than in the beginning. Plus that "swollen" feeling---for you, your head; for me, my hands. Feel horribly inflamed (& almost pulsing) but aren't truly inflamed. This sure is a weird, quirky malady, isn't it? Whether you have FM of CFS or anything like it, it is the toughest thing to describe to anyone who isn't a fellow sufferer! So, I'm so glad you are here---we all understand your pain & frustration with this. Hope you find out more & have success with your naturopath. And welcome!!

    Hugs,
    Pam
  7. CelticLadee

    CelticLadee New Member

    Hello Shirl, lisjhn, karen 2002 & pam d. Thank you for a very warm welcome. It is so nice to talk with you all about these things and I feel very good to have met you. Your words are an encouragement to me and I know I will be learning much at this message board.
    Lisjhn wanted to know the supplements I am taking that are anti-viral. I am taking 2 capsules 3 times a day of L-Lysine 500 mg., Hyper-Ex (St. John's Wort) 300 mg., Elderberry (berry) 920 mg./ flower 230 mg. & IAG (Arabinogalactans = Larch tree) 2 tsp. 3 times a day. I have never taken so many pills,etc. in my entire life. It is beyond belief! My husband was teasing the naturopath wondering about me having any room for food in my stomach. It is quite interesting that when I began taking all the listed supplements plus the other supplements the burning and pricking sensations intensified and keep wandering around striking various areas of my body. The original site of the Shingles on my right side on my back is burning, pricking and itching but no rash. It is all so very strange isn't it? I never dreamed I would have the Shingles virus bothering me almost 2 years later. Everyone tells me I look great and they can't believe how sick I am. I tell them it is all on the inside where they cannot see it and thanks for the compliment that I am looking well. They don't mean to be so stupid about it I am sure. By the way - which anti-virals have you found effective and have you used any of the ones I mentioned? Well, I suppose I don't need to have a name for what ails me but it makes it rather awkward when explaining to others. "Shingles-gone-amok" has a nice ring to it don't you think? haha CelticLadee
    [This Message was Edited on 12/09/2002]
  8. LiteraryPumpkin

    LiteraryPumpkin New Member

    I have many of your symptoms. I used to call my affliction the Martian Virus. Now, I sometimes call it CCD, "Chronic Crap Disorder." Officially, I have FMS, CFS, IBS and OCD. What I do not have is IBM and the FBI .. too bad.

    Keep the faith my friend. You have a chronic illness. Keep demanding answers from your doctors, you probably won't get many, but you might (who knows). As far as what you tell friends, family and your boss (if you have one). Just pick something and make it sound damned good (or rather bad). Of course, you may not possess my gift for hyperbole. Nobody's perfect, just do the best you can.

    Here's the deal (in my opinion): if the doctor won't give me a coherent explanation for the awful crap that besets me, then I will. I can read.

    I read a paper by a prominent Fibromyalgia researcher who speculated that FM is muscle disorder whereby the muscle system fails to expel toxins properly, thus poisoning the body. So, I tell friends that I have a muscle disease that is chronic and, at this time, incurable. Sounds a whole lot better than, "I'm sick and the doctors don't have a clue as to what it might be." Such a declaration is inevitably construed as, "I'm a psychosomatic dork who isn't sick at all. Please kick me ... hard!"

    I have read some really encouraging things about the progress of the research on FMS and other chronic disorders and I am truly optomistic. You can smile now, it won't hurt, might do you good.

    As for me: I ain't dead yet, I just look like it (just kidding).

    Keep your chin up (as long as it doesn't hurt your neck).

    Love and best wishes,

    Russell
  9. 1Writer

    1Writer New Member

    I have CFS, never had shingles, but have recurring low-grade fever, joint and muscle pain, IBS, Tinnitus, TMJ, scoliosis, Thyroid Disease, going thru menopause (YUK!), my list could go on a bit more, but I won't do that to you today. I just came on board here about a month ago, myself and have learned alot and one of the first things you need is to find a doctor to dx you properly...get a doc that believes you and will listen...I am lucky, mine does. I currently take Klonopin for anxiety and sleep, Arthrotec for my joints, Pravachol for high cholesterol (oops, forgot to mention that problem), low dose aspirin for blood clots, Femhrt for HRT, and Zantac with every meal because the medicine makes my stomach hurt. I have extremely dry mouth, so I drink a ton of water, I take a 2 hour nap every day and sleep only about 5 or 6 hours at night...I sleep with a CD of rain sounds to calm me...it really helps cool my body down...I seem to heat up when I lie down. I also learned that cool showers help with dry skin problems...hot water will irritate your skin. I don't know if any of this info helps, but I hope it does and if it doesn't, someone here will...there is a wealth of info on this site and wonderful knowledgable people to help out. Welcome aboard!
    1Writer
  10. CelticLadee

    CelticLadee New Member

    LiteraryPumpkin - You had me laughing so hard I almost fell off my chair. Much gratitude for the entertaining message. I love to laugh so I appreciate your gift and alas have not the talent to return the favor. You certainly have a good point about calling what ails you something very serious sounding to impress the skeptics and stop any wrong impressions. This sickness is stressful enough all by itself without becoming the "kick me" bag.
    1 writer I am amazed what you need to take for your CFS, etc. You must have a very strong stomach regardless of your need to take a soothing medicine for it as well. I have never taken medicines (except a few antibiotics when I was growing up) and am hoping whatever I have going on will not require me to start. I hope you both will have a good night of rest tonight. It was very good of you both to welcome me and I thank you. Good night now. CelticLadee