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Fibromyalgia Sucks
by Connie - Started writing in October 1996 finished in March 1997
October 2001 - updated completely

August 2006 update (updated October 2007):

I react to sucralose (the sweetener in Splenda and also in many other food items). I had panic attacks. I think it is because my inner-ear doesn't work properly. The reaction also caused my blood pressure to shoot up to 180/120. I felt like poop, very horrible. The panic attacks changed my life. I realize now how many people have anxiety attacks and panic attacks and how it ruins their lives. The doctors immediately told me that I needed psychotherapy for the attacks. Funny that none of them asked if I was eating or drinking anything new, or even considered that it may be a physical event and not a mental event. I am a firm believer in psychotherapy, and have a therapist who I love, who I have seen on and off for many years. BUT... if the problem is physical, no amount of psychotherapy is going to solve it.

The attacks happened while I was on a very high bridge, on a smaller bridge, in an elevator, on a very dark highway (some kind of weird visual effect happened). It would start with an intense tingling in my hands which would spread up my arms into the back of my neck and my head. My mind would fill with short bursts of panicky thoughts, such as, "how do I make this stop" "I don't think I can handle this" "I don't know what to do" "I want to run down this bridge" "what if I can't control the car" "what if I can't press the brakes" "what if I take my hand off of the steering wheel!" Very horrible. Very frightening. Towards the time that the attacks were getting worse and more often, they would cause me to start crying (sobbing) uncontrollably. The crying would just start... not because of fear or sadness, purely a physical thing. It was very weird.

I had vertigo one time, about 12 years ago, and I can describe this as a "vertigo of the mind" which will make sense to anyone who has experienced it.

I quit using sucralose and I read every single label of everything I eat, and so far so good! No more panic attacks!

As of October 24, 2007 - I have had no more panic/anxiety attacks. I still read every label. For many months after the attacks stopped, I still continued to have "apprehension" that I may have an attack, like when I got in an elevator or started up a bridge, but now even those feelings are gone.

Hopefully the ads below are for products and services related to Fibromyalgia and Anemia. Google chooses the ads.

July 2002 update: BIG NEWS!!! It turns out that I have been anemic for a long time (although standard blood tests only recently showed it) Now I am taking Iron (27mg every other night) and am feeling like A NEW PERSON!!!! Life is good again!!!! I can think, I can move, I still have some muscle burning, but I see major light at the end of the tunnel!!!! (Note: The iron is now in addition to a bunch of other nutrients I've been taking for some time.) IRON was a CURE for my "RESTLESS LEG SYNDROME!!!"

IMPORTANT OBSERVATION... the ONLY blood count that was sometimes not normal was the MCV (which all of the doctors I saw at that time totally blew off). All of the others which would normally point to anemia were "perfectly normal."

I am totally distrusting the reference ranges that are being used today. I personally know for a fact that some reference ranges of labs are done by bringing in a cross section of people and taking their blood and then averaging the results to get the range. I used to think that the reference ranges came from "healthy people," but noooo.... just a bunch of people. I think they throw out the results of people who are very different from the previous ranges, which helps a little, but you can see that over time, the ranges are no longer useful. I realize that I have had the symptoms of anemia for years and years and years, and the blood tests never showed it.

Of course, I asked almost all of the many, many doctors I have seen about the low MCV, and they all said that it was nothing and that I shouldn't worry about it. I stopped seeing doctors for about 6 years, and got a lot better, and then found an very nice and interested Internist last June, who diagnosed the anemia and suggested the iron. In the reading I have now done about anemia, having small blood cells or not enough blood cells can cause muscle pain, because the muscles are starved for oxygen.

It seems that anemia can cause quite a few of the symptoms I have experienced. It sure would have been nice if over the last 11 years, any one of the doctors I had seen had been interested in this. Since I am now 43, I have lost a big chunk of my life. I am super angry about this. I've read that anemia can also cause "smooth tongue" and chronically dry or chapped lips. Of course... I have had both of those problems.

September 27, 2001 note:

Big News - I've been taking Meclizine since August 15th (motion sickness medicine, which is an antihistamine), and I am having GREAT success! This is one of the medicines that was recommended in Dr. Levinson's book. It took me a couple of tries before I found a physician who was willing to take it seriously that I may have an inner-ear problem, but I finally did. Meclizine is an over-the-counter drug, but it only comes in 25mg, which is too much. My doc prescribed a lower dose (which is only available by prescription), because I told him that I had tried 25mg and it was making me VERY sleepy.

These are the improvements I've experienced.

~ I can carry freshly filled ice trays again without spilling the water (haven't been able to do that in 11 years)
~ I hardly drop my keys anymore (only once in over 30 days, as opposed to 3-4 times per week)
~ When I did drop them I realized that they were falling out of my hands, instead of just seeing the keys fall as it is happening
~ I can carry multiple things in my hands better, without dropping at least one of them
~ There is now no pressure in my head after walking up a flight of stairs
~ I can move my head fast from side to side without getting lightheaded

The items below were new symptoms I just started getting coincidentally since I got that "Over 40 year old vision loss" which just started in the last few months.

~ The "blind spot" I had while driving had gotten huge - it is back to normal
~ I couldn't maneuver in parking lots because I couldn't tell where the cars were and if they were moving or not - this is back to normal now
~ I felt like the cars on the road were always not stopping fast enough and that they were going to hit me, especially from the side streets
~ I had lost my perspective on how close to stop behind the car in front while at a signal light. I kept getting tooooooo close before stopping
~ Sunglasses gave me a headache - I can wear them now, but I have a weird surreal visual sensation when I do
~ I was getting horrible, excruciating migraine headaches when I do my web design work and "scroll" the screen and I would have to lay down and go to sleep. The laying down and going to sleep were unstoppable. I have only gotten a couple of light headaches which I was able to take headache pills for and get rid of, and still be able to function.


Click on any item and it will take you to that place in the story.

The problem (Fibromyalgia, of course!)
The bigger problem (The Freakin' Doctors!)
My theories (past and present)
My history - so you'll know me better
The Dreaded SYMPTOMS!
Keratosis Pilaris (Keritosis Pilaris) - details
Shingles and Red Face - details
Heel Pains - details
Stomach Pains/Gall Bladder Surgery - a long story
The scaly bump on the back of my head - details
Memory Loss - Couldn't think of my words
Weird chills - details
Tai Chi / Tight Muscles
Numbness in my heel - details
Restless Leg Syndrome - details
Muscle Burning - details
Blood Pressure - details

More Symptoms
My husband and I open a sandwich shop
The Allergy Doctor - long story
My Mom - gets fibromyalgia
The Endocrinologist
IMPORTANT NOTE about stopping antidepressants
Dehydroepiandrosterone - DHEA
A GENERAL NOTE regarding family, friends and coworkers
My Husband - gets a brain tumor
How am I feeling?
TREATMENT - my own recipe
June 2001 note
IMPORTANT NOTE: about Levinson & Inner Ear
Incidental note: about retention cyst



I have prepared this information in order to share my experiences with others who may be in the same situation I was in, and am in, with my health.

Over the past 11 years, strange health problems emerged that have frightened and depressed me. I have experienced terrible burning pain in my muscles. I experienced the loss of my memory and severe degeneration of my cognitive abilities.

At times, all hope was gone in my mind of ever having a normal life again. Luckily, a very good friend Donelle heard about a treatment called DHEA on a TV news show and told me about it. (DHEA is Dehydroepiandrosterone - a substance described as occurring naturally in the body, that is required for hormone production - and is currently being sold as a food supplement) I then heard about colloidal minerals and started using those. I've also added a lot of other stuff and my life and health are now 1000% better, and that is why I am able to put this information down on paper. (see treatment)

I still have some health problems, but those are not so devastating and I feel confident that I'm on my way to a complete recovery.

The problem

Fibromyalgia Syndrome (FMS) - an illness that produces many odd symptoms. It doesn't kill you, but eventually you feel like killing yourself. Hopelessness and humiliation drive you to that point. Hopelessness because there supposedly is no "cure", and humiliation because the doctors look at you like you're a nut. I was constantly told, "It's stress or depression." I couldn't help them understand that when this degree of misery, comes on OVERNIGHT practically, that something else must be wrong.

My primary and most miserable symptoms were muscle pain and burning and extreme memory loss and brain fog. (I list all of the different symptoms I experienced in a later section) You don't really get "diagnosed" with FMS, you just get the diagnosis because you have certain painful symptoms and all of the blood test results are essentially within normal range.

The bigger problem

From my experience, about 95% of doctors feel it is hypochondria - all in your head. I've only had one doctor (of many) tell me anything like, "we'll try to figure out what's wrong and make you better", and he ended up running hundreds and hundreds of dollars worth of tests on me in his own testing facilities, and I ended up getting mad and disgusted with his tactics and his office staff and stopped seeing him.

The endocrinologist that I had seen most often several years ago, tried more than anyone else, and seemed to give me more consideration.

(2001 update) Now I have an internist who does not dismiss me, and it is fantastic, and now I am actually getting better!!!!

Unfortunately, until the mainstream physicians start taking this seriously, many people will continue to suffer. The doctor must want to help the patient. I've found that if there isn't a textbook symptom with a textbook treatment, then you're out of luck. If you're dealing with an unknown illness, then you are viewed with suspicion and disinterest.

I was sitting in a doctor's office one day with tears rolling down my face, to which he took a step back and said, "I don't know what to do to help you, and this memory problem you keep talking about is not in any of the literature I've read about Fibromyalgia". (Note: It had been mentioned in almost all of the literature from the Fibromyalgia newsletters that I'd read. I had told him this on an earlier occasion. He never asked to see it, or made any inquiries on his own.)

My theories (past & present)

DAMN it.

Self-proclaimed "well-intentioned" people are hurting others with these kinds of rationales.

(Thanks for indulging me in my venting! - those are all things that are said about FMS. Fortunately, there are a few "maverick" physicians and alternative health-care providers out there who believe that it is caused by something else other than the mind of the patient.)

I think it's a virus, and I think that it came from the Asian Tiger mosquitoes. (My theory may be all fluff and no substance, but it's all I have)

I think that it's the Dengue virus, and this is how it effects Americans. I think that our immune systems are good, but we are extremely deficient in certain nutrients, like minerals. I believe that it attacks our liver and glands. I've heard that the Dengue virus is spread by the Asian Tiger mosquitoes, and in Asia, will usually cause a two week, terrible period of fever, weakness and terrible muscle and joint pain. The nickname for the Dengue virus is "break bone fever" because of the terrible muscle and joint pain. I've heard that Fibromyalgia researchers have found fragments of a retrovirus in FMS sufferers, but I don't know if Dengue is a retrovirus.

(2001 update) I have added a second piece to my theory, which is the "inner-ear" theory, and am taking medicine for it and having GREAT results!!!!

My history - so you'll know me better

(My memory works well now on some things and just O.K. on others, so please forgive me if I am inconsistent) I am 42 years old and I have been married for fifteen years. My husband is from India. He is a sweet and wonderful person, and we've had a non-stop, interesting marriage. I was the Manager of Pharmacy Computer Services at a local hospital for 8 1/2 years, but left there in October 1998 to pursue Web Site Design and have also stumbled into songwriting.

My mother and father are alive, as are my maternal grandparents and stepmother of my father. I have one sister (19 months younger than me) and as my parents are divorced, my sister and I have acquired eight stepbrothers and stepsisters. My sister has three sons. I and my most of my family are very close. I am a calm person, others refer to me as laid back. I am also optimistic and in a good and happy mood most of the time. I don't drink or smoke, although I have in the past. I stopped regularly drinking alcohol at age 20 and stopped smoking at age 26.

The Dreaded Symptoms! (Starting in 1986)
Note: Not all at the same time

Heel pain and pain in the arches of my feet
Stomach pains (presumably from gall- stones)
Muscle burning (only when muscles were in use)
Red face
Unexplained weight gain
Frequent and heavy menstrual cycles
Extreme sweatiness
Night sweats
Inability to fall asleep
Sleep very deeply, yet wake up exhausted
Raise in body temperature
Raise in blood pressure (from 105/70 to 130/90)
Weird chills
Extreme memory loss

Extreme confusion
Brain fog
Ringing in the ears
Dropping things
Heart arrhythmia's
Rapid pulse
Pain in lymph nodes/glands
Skin tags
Moles growing fat
Red moles developing - (look like small spots of broken blood vessels)
Recurring kidney pain
Pain in my side in the area of my liver
Numbness in heels and toes
Shooting pains in my legs, knees and "butt"
Tooth pain
Recurring vaginal yeast infections
Athletes foot
Scaly bump on the back of my head
Wart-like bump on my toe
Itching on my arms, scalp and legs
Weird colored stools (bright yellow and orange)
Extreme sensitivity to cigarette smoke, perfume and chemicals
Chest tightness - one time I walked up three flights of stairs and when I got to the top, my left arm and shoulder area got very tight, and I couldn't hardly breathe and I got weak and started sweating profusely. It scared me. Of course my legs were also in excruciating pain from the muscle burning.
Irritable Bowel Syndrome - a major miserable part of my life - Sometime in my adolescence I developed I.B.S. After I eat, up to about 20 to 30 minutes later, I get a sick, queasy feeling in my intestines. I go to the bathroom, and have (No - I'm not just being GROSS) diarrhea. I sometimes get weak, and sweaty. I can end up in the bathroom from 2-6 times a day when it's bad. I had this before long before the FMS symptoms started, but I thought I'd mention it.

(2001 update) My IBS is still there, but much better if I avoid milk products, and take my minerals.

More symptoms listed later

Keratosis Pilaris (Keritosis Pilaris)

Sometime in my childhood/adolescence I developed these little reddish colored bumps (like tiny little pimples) on the backs of my arms (at the top). The bumps also developed on the top part of my thighs.

The bumps just stayed in the same places, until after I met my husband in 1986, and then they spread all over. They are now all the way down my arms, and down to my knees on my legs, and all over my stomach. They are not on my back or my face. I think that these are hormonal, and the reason that they spread is related to Fibromyalgia. (Since starting DHEA, these are getting much better.)

(2001 update) BIG NEWS! Co-Q10 greatly improves Keratosis Pilaris. Mine are almost completely gone!!!!

Shingles and Red Face

I met and married my husband in 1986. I had shingles for the wedding.

That year I started taking birth control pills. I had taken them for several years when I was a teenager and in my early twenties, but had not used them for a few years. I was also having very bad sinus headaches. I have found that cigarette smoke gives me very bad sinus headaches, and at the time I was smoking, but I didn't know that I was sensitive to the smoke. I went to an ENT doctor, who said that I should quit smoking and prescribed "SINUBID" pills to take every day. I took them for months. One day everyone started noticing that my face was turning red. It looked really flushed. The redness did not go away. I thought that it must be the pills I was taking so I stopped the BC pills and the SINUBID. But, my face never has become normal again.

Heel Pains

After an automobile accident in July of 1990, my heels started hurting. My grandmother had been having heel pains, so I thought "wow, I am having sympathy heel pains for my grandmother - boy, am I codependent". Thinking that the pain was really in my head and not in my heels, I figured that it wouldn't last long, and I didn't really question it. The heel pains did not go away, but the stomach pains started which definitely took my attention and minimized any heel pain problem.

Stomach Pains (Gall Bladder - Stones)

I got bad stomach pains. The pains would be in the upper part of my stomach and would hurt straight through to my back. It felt like someone had taken my stomach out, threw it on the street, beat it with a baseball bat and put it back in me.

The pain would last for approximately 20 minutes and then go away. It would happen during the day sometimes, but mostly it would wake me up in the early hours of the morning. Usually at 5:45am, almost like clockwork for awhile. I believed that the pains must have been caused by stress, since I was in a new job (but I loved the job, and did not FEEL stressed out) and that my stomach was in some type of spasm. I tried to do every type of relaxation technique I had heard of, to ease the pain, but I was unsuccessful.

The pains were originally coming only once per month or so, but then they started coming more often, and then weekly and then several times per week. I was getting pretty scared by this, because I could not stop it. In my mind I suspected that since I couldn't get it to go away with relaxation techniques, that it must be an ulcer. I started inquiring about ulcer treatments and found out that the newest treatment was antibiotics and pepto-bismol. I knew that I would need a prescription for the antibiotics, so I decided to go ahead and see a doctor, but I ended up in the ER before I could do that.

The pains were coming more and more often, and lasting longer than 20 minutes. One morning I woke up at about 3am, because of the pain, and by 7:30am, it had not gone away and my whole body started shaking. I called my husband at work and told him that I needed to go to the hospital. He rushed home and brought me to the ER. The pain was so intense and unrelenting, I couldn't do anything by stay curled up in a ball and rock.

They gave me a pain shot, which made me able to "uncurl". They did an ultrasound and said that I had 4 gallstones, but that they thought the location of the pain was more suggestive of an ulcer. They gave me zantac and bentyl and strongly suggested that I make an appointment with a doctor.

They gave me the name of a doctor, who I went to see, who said that my liver counts were high. I don't remember what came out of that meeting as to a plan of action, except that he didn't treat at the hospital where I worked, which was a problem.

That week I developed 103 degree fever that wouldn't go away for three days even though I took a lot of tylenol. I also didn't eat or drink. I wasn't nauseated, I just wasn't hungry or thirsty. It was quite strange. My mother and grandmother came over to nurse me (I think they came every day), and by the third day, they insisted that I go to a doctor. They said that if I passed out, they wouldn't be able to carry me to the car (I am too chubby).

I called my boss at the pharmacy and asked for a recommendation for a gastroenterologist who practiced at the hospital where I worked, and he gave me a name. I called and we went. When I tried to walk to the car, I realized that I was extremely weak and almost didn't make it. While lying in bed I didn't realize that I was so weak.

At his office, he said that I was jaundiced and dehydrated and needed to check into the hospital right away. I didn't want to, I wanted to go home first and get my things. My real intention though, was to go home and not go back. Since I knew I was dehydrated, I thought that I would go home and drink lots of fluids. I figured that the fluid would make the jaundice go away. I thought that I must be jaundiced because I was dehydrated. The doctor insisted that I should check in "now", and my mother and grandmother also insisted, so I agreed. I was afraid. Especially since the doctor had a very cold personality. He did not comfort me in any way, he only scared me more. I sat in a wheelchair and they rolled me across the street to the hospital.

The initial diagnosis was to "rule out hepatitis". After a bunch of blood tests and a CT scan, they said that my pain and sickness was due to the gallstones and that I needed to have surgery to have the gallbladder removed. They said that there was a possibility that a stone had become lodged in the duct from the liver, and that meant that I had to have the old style traditional surgery, instead of the new laperascopic method, which would have healed quickly and with much less pain. I told the doctor that I'd like to find out about using the medicine that would dissolve gallstones, but he said that he didn't want to talk about it because I couldn't use it. He didn't give me any information about the medicine or even continue the conversation.

I found out that the "traditional" surgery meant an 8 inch incision and a tube stuck out of my side for a day or two. They gave me Demerol for the pain, which was EXTREMELY ineffective.

My recovery at home was very painful, as I was afraid to take any pain medication because it may have given me stomach pains. I made the terrible mistake of going back to work in only two weeks because the computers had crashed and were giving everyone fits. I should have stayed out four to six weeks.

The scaly bump on the back of my head

In the year before the gall bladder episode, I had developed a scaly bump on the back of my head, at the base of my skull. It was itchy and it got thick and wouldn't go away. I tried all of the specialty shampoos. After the hospital stay, the bump had gone away. It has still come back only a little bit.

Memory Loss - Couldn't think of my words

Within a couple of months after the surgery, while I was at work, I kept having situations where I couldn't think of my words while I was talking to people. As an example, if I wanted to talk about the pen I was holding, I couldn't think of the word pen.

I thought it must have been some kind of delayed reaction to having undergone anesthesia It only happened once every few weeks for awhile, then became more frequent. Then it turned into real memory loss - I would say that I was going to do something and then, before I had even turned around to go do it, I would completely forget. It soon became a "brain fog".

I described it this way: It is as though the top of my skull was removed, and someone had laid a cheese cloth or something on top of my brain, and it made it really hard for the electrical impulses to get from one side to the other. I was getting so that I couldn't understand things when people explained them to me. I was cognitively impaired, very badly. This frightened me, as I work with computers, and technology is ever-changing. There is always something new that I must learn and put to use. I felt as though I was losing my mental power, that I was going to be retarded and brain damaged.

Weird chills

I had weird chills - my body would start to get a chill and then stop midway, (like when you have to sneeze and you almost do, but then stop) this happened dozens and dozens of times over a period of three to six months. During that time I noticed that my temperature increased. My normal temperature when I was healthy was always 97.2. It was very consistent. Then it turned into 98.8 for months and then 98.6.

( October 2, 2001 update) My temperature today was 98.8 hmmmm. Still too high.

Tai Chi / Tight Muscles

The muscles of my legs and arms started getting very tight. I thought it was because since I had surgery, I must have stopped using some of my muscles as much. They always felt like they needed to be stretched. I did not want to do any really rigorous exercise, but I did want to move and stretch my muscles and get healthier.

My husband and I had heard of "Tai Chi" (oriental exercise), and decided to try it. We found a teacher at the nearby YMCA and started taking two lessons a week. We really loved it. It was challenging, and did the trick to give me an opportunity to stretch my muscles.

The only problem was that it hurt my heels, but I still continued. Then it started burning in my ankles. The exercises are done very slowly, and you have to stand in one spot for a long time. I couldn't figure out why the burning did not eventually go away. In my past experience with exercise (I had even done Jazzercise for about six months when I was in my early twenties), your muscles will burn in the beginning, but after a few weeks they stop hurting and become stronger. This muscle burning got worse and worse, as did the heel pain.

One of the guys in the class suggested that I had heel spurs and suggested that I see a doctor to get x-rayed. I made an appointment with an orthopedic doctor at the hospital where I work. He did x-rays and said that my bones were fine. Every place he touched on the bottom of my feet during the examination was extremely tender and painful. He said that the tendon in my arch was inflamed because my Achilles tendon had gotten too tight, and it needed to be loosened.

He said that I should do some stretching by standing with my toes on a phone book and then putting my heels to the ground. I did this a bunch of times at home, but it was extremely painful and just kept getting more painful each time. I finally stopped and made another appointment with him. He then said that he didn't know what the problem was, and that he could give me steroid shots in my heels. I said no. I had heard that the shots were extremely painful. I never did go back. I couldn't understand why the Achilles tendon was tight, when I had been doing so much stretching in my Tai Chi class for months.

Numbness in my heel

One day I discovered that the bottom of my left heel had a spot about the size of a quarter that was completely numb. I found this out because I was walking barefoot on the carpeting in my bedroom, which I always do, and I got a weird sensation on my heel, and thought that I had stepped on a piece of paper or scotch tape, and it had stuck to my skin. When I reached down to remove it, I found nothing there. Then I felt the numb spot. It was really quite numb. It stayed like that off and on for months.

Restless Leg Syndrome

I was also getting a really weird sensation that I called "that weird energy in my legs". Sometimes, when I was laying in bed, I would get the weird energy and have to move my legs. Usually I would get up and walk around, but it would take awhile to go away. I found that if I laid on my side with a pillow between my knees, that it would ease the feeling enough for me to fall asleep. This would also happen while riding in the car. Sometimes I'd have to stop and get out and walk around. IRON GOT RID OF (CURED) THIS MISERABLE HORRIBLE TEDIOUS SYMPTOM!!!

Muscle Burning

My muscles burned more and more. The muscle burning only happened with the use of my muscles. They did not burn while I was laying down, or not using them. But, whenever I walked, or used my arms, or climbed a ladder, or stooped, it was extremely painful. Especially when I had to stand for any length of time in one spot. I'd have to shift my weight from leg to leg constantly. This would make me exhausted.

Blood Pressure

My blood pressure was 105/70 my whole adult life. Now it is 130/90.

(2001 update) 120/80

More Symptoms

I had painful lymph nodes under my left arm
I had painful lumps under my jaws
I lost the ability to remember time frames. I couldn't remember if something happened a week ago or a month ago.
More stomach pains, but not as bad as the ones before the surgery
Gum infections
Leg cramps and locking of my toes when I would stretch my legs
I couldn't fall asleep for hours each night
I would wake up extremely exhausted, but after an hour or two my energy level would be fine
I never felt tired, ever. I never felt like I needed to sleep. I would have to force myself to fall asleep.
I would break out in sweats, really sweating a lot, during the day and at night. Sometimes when I would wake up, my hair would be very wet.
I developed "skin tags" all over my neck. I had already had one since I was a teen, but now I have about fifteen.
Some of my moles started growing fatter
I developed skin tags on my eye lids. I had never had any before.


My husband ran the shop and I continued working at the pharmacy. It was very difficult to do the things necessary to open a small business with all of these strange symptoms going on. It made things 50 times harder. We worked about 90 hours a week, seven days a week. We decided to only open for six days, but there is a lot of shopping and other stuff to do on the off day. Our business failed, although we were able to last for 2 1/2 years. We lost everything and are only starting to recover now, over 5 years later.

The Allergy Doctor

One day I was telling the symptoms to a good friend named Lenny that I hadn't seen for a long time, when he said... "I've heard these symptoms before".

He said that he had listened to an audio tape about how to improve your memory, and the guy on the tape had described similar symptoms. He said that it was from Candida Albicans yeast, and the tape guy recommended a book about yeast.

I bought and read the book, and was amazed to see that it contained an almost exact description of what I had been going through. The book said that when we take antibiotics it kills the good bacteria in our intestines, which allows the yeast (which is always present) to take over and infiltrate other parts of our bodies.

The book said that a lot of doctors don't believe the yeast theory, and gave an address to write to, to get a list of doctors in the area that do believe it. I sent off for the list. I went to the doctor that was the closest. He was listed in the yellow pages as an allergy doctor.

When I walked into his office, there was a sign that said "please don't come in if you are wearing perfume". The sign explained that the people that were coming in were sensitive to that. It made sense, and I liked it. The office was very nice. When I went in to see the doctor, he spent a lot of time with me and asked a lot of questions. I said that I had come to him because of the yeast book, and that I wanted to get a yeast test. He told me that he knew what was probably wrong. He said that my glands were out of sync and that my body was out of whack because of the glands. I can't remember any better than that how he explained it, but it sounded like it made total sense. I still believe it, even though I don't like him. He told me that he needed to take some tests.

He sent me to a room where they made me stand on a small platform facing some cloth covered walls that (I think) had pictures of the horizon, with water and a sky. They hooked me up to a halter around my upper body that was hooked to a rod above me. (This was to stop me from falling.) Then they tilted the platform forwards and backwards, and tilted the walls. I figured that they were checking my balance. I was able to stand the whole time.

When that test was over, they brought me to another room. In this place they had a small room with what looked like a dentist chair, but without any equipment around it. They hooked up some electrode things on my head near my eyes. Then they closed the door and it was pitch black. Then they made the chair spin around slowly and then stop periodically. When it was stopped, some tiny red lights would light up and move across the wall. This test lasted 45 minutes. It was strange. I went in to see him again after the tests and he said that the results said that he was finding problems and I had an inner ear problem and that he needed to do more tests. I scheduled another day to come. It had taken hours in his office that day already.

The next time I went was for a "brain wave test" and a glucose tolerance test (with a twist). Each time they would stick me for blood, I had to then go in to another room and have the electrodes hooked up to my head for a few moments to take a reading. The test took about 5 hours. While I was waiting, I was in a special waiting room for people getting tests. Most of them were getting an allergy test where they were getting stuck 25 times in each arm with different allergens.

They would go out and come back in with little bloody spots all over their arms and complaining that it hurt. One of the other patients said that the nurse was probably going to come and get me. I told her no, that the doctor hadn't mentioned anything about an allergy test, and that I wasn't here for an allergy problem. I'm glad she warned me, because the nurse did come in and get me. When we went into her room, she said that she was going to give me the allergy test. I told her that I wasn't supposed to get one. I was there only for the glucose test and a brain wave test. She got irritated and said "yes you are supposed to have this test". I got irritated and said that I wanted to see the doctor. When I went in to his office, he was aggravated. I told him that I was angry because he hadn't even discussed the allergy test with me. He said that he thought it was necessary. I told him no. My grandfather had almost died from that same test. I asked him for the results of my yeast test. He said that they hadn't taken a yeast test.

Then I got really mad. I had already spent over $1200 in tests and I hadn't even gotten the original test that I had asked for. I didn't stay for the brain test. (It was going to cost a lot too) During the glucose test I felt fine, but in the last hour I started shaking and getting very weak and lightheaded.

When I left I could hardly walk because I felt so weak. I went to work the next day, but I didn't get normal again for three days. I think that the glucose test was too hard on me. It really screwed up my brain. I almost couldn't think at all at times during those three days. I never went back to that doctor, and had a huge tug of war with his office staff to get my medical records. I had to call the AMA to find out my rights for my medical records, which of course I had total rights to them. The AMA faxed me the rule, and I faxed it to the doctors office. Then they gave me a copy of my records. I gave the records to my current doctor, but he said that he doesn't know how to interpret them. The thing that really bothered me though, is that the things that he had told me had made a great deal of sense.

My Mom gets Fibromyalgia at the same time as me

My mother had been experiencing strange symptoms also, and a lot of pain, but her pain was in different places than mine. She hurt in her hips and in her shoulders. She started to be very weak and her muscles went away. She just had soft and loose skin where her muscles used to be. She went to a doctor who told her she had Fibromyalgia. We started researching it, and learned a lot about it. During that time, we started noticing that my symptoms were on the list also. Hmmmm. What a coincidence... she had major surgery prior to getting Fibro too. She had colon cancer surgery.

The Endocrinologist

I was now in my worse stage of this illness, and was in a lot of pain almost all of the time and was feeling really hopeless. Just holding up my fork while I was eating burned my arm muscle.

I didn't want to live anymore. I couldn't believe that this was going on. I was tired of always smiling and pretending that everything was fine, when I was in pain so much. I couldn't believe that I had some kind of weird physical thing that no one knew how to treat, except the notorious allergy doctor. Since he had mentioned glands, I decided to give it one more try. I went to an endocrinologist at the hospital where I work. He diagnosed me as having Fibromyalgia.

This doctor prescribed Pamelor, which is an antidepressant. Researchers had discovered that the tri-cyclic antidepressants would help restore a more normal sleep pattern if given in low doses. (It seems that sleep that doesn't occur in the proper stages can cause muscle pain.) I had already read about it, and was willing to try. It took about 18 days to get past the side effect of dry mouth, but the pain was diminished a noticeable amount. It made my hands tremble slightly, but since it helped, I was happy to keep taking it.

I still had all of the other symptoms, and now my blood pressure had gone up to a steady 130/90. I don't know if it was the Pamelor that did that or just another part of Fibromyalgia. My pressure is still about that same reading.

(2001 update) Blood pressure is down to 120/80 or less

The Pamelor gave me a very rapid heart beat, like 110 or 120. My beat is normally fast anyway. Between 88 and 94. I took Pamelor for about 8 months, and then one day my heart starting having some fluttering feelings. I went to the doctor and he said that my pulse was too high and prescribed a cardiac ultrasound to see if I had mitral valve prolapse (my mother has it), and gave me a prescription for a drug to stop the rapid pulse and arrhythmia's. The ultra sound said that I had a slight flattening of the mitral valve, but no mitral valve prolapse.

I started taking the other medicine, but then decided to stop because I didn't like having to take one medicine to counteract another medicine. I also didn't like what my heart was doing and I blamed the Pamelor. So I stopped taking both medicines.

IMPORTANT NOTE: never stop taking an antidepressant suddenly, because it can make you EXTREMELY depressed for about 3 weeks. Then you get back to normal. So... don't jump off of the bridge for at least 3 1/2 weeks. (You may think I am joking, but it gets very bad)

Dehydroepiandrosterone - DHEA

After I stopped taking Pamelor, it took about 2-6 months for the muscle burning to get really bad again. I was lost. I didn't know how to go on in the nightmare anymore. Then most luckily, my good friend heard about DHEA, and here I am, feeling so much better, and able to think again. Within hours of taking the first capsule, I felt a tremendous difference.

I went to see my doctor (endocrinologist) to make sure that it was OK to take DHEA, and he said yes, but warned me that there is little known about it, and that I might grow masculine facial hair and muscles, as it would boost the testosterone in my body. I told him I was willing to give it try. So far it has been 5+ years and I'm not masculine yet (that I know of!).

(2001 update) When I recently went to my internist for some blood work, it showed that I was anemic, which seems to be from having really heavy periods. Over all of these years, my period got heavier and heavier and lasted longer and longer. I stopped taking DHEA finally, and my period is now MUCH more normal. I guess that at one time my body really needed DHEA, cause it helped so fantastically, but then eventually I had too much in me. I'll have to peruse that idea with my internist or my GYN. Since stopping the DHEA, I have not experienced any recurrence of the bad memory loss... yet.

A GENERAL NOTE regarding family, friends and coworkers

The physical aspects of this illness are devastating to the quality of your life, but... because there are no external symptoms, your family and friends will not have any way to comprehend how you are feeling.

You say that you are in pain, yet you look fine. (I have found that I am a master at smiling and pretending to feel fine. It seems that you have to pretend, because relentless pain is VERY damaging to your psyche.)

Some will think that you are nuts, some will think that you just want attention. Fortunately, some will take you seriously. They won't be able to understand why you are sick, yet look good, but at least they won't question your mental health.

During the onset of these symptoms, I never really spoke about the BAD pain to anyone except my closest friends and relatives, but I did talk about some pain and the other symptoms with my regular buddies at work very often. I and we would try to figure out "what it could be". Since we worked in a hospital, it was an interesting challenge to try to figure it out.

There was this guy, who said to me "you know, everyone is tired of hearing you talk about this, and they wish you would stop". He also said, "you have to understand that this is psychosomatic". He said this in front of someone I really respected. I was completely humiliated. I'll never forget how that felt.

With Fibromyalgia, you live in a terrible paradox - YOU FEEL HORRIBLE, BUT LOOK FINE.

My advice is, make sure your closest family and friends are given plenty to read about this illness, so they'll have a better understanding and will be more sensitive to what you are going through.

The family, friends and coworkers who have been sensitive to me through this, are incredibly precious to me. I'll never be able to adequately let them know how much it has meant to me. And very importantly... figure out who the jerks are in the remainder of your social contacts, and don't mention anything to them. If they want to give you their opinion... RUN AWAY!

And... when you see a doctor, if he/she doesn't take you seriously... RUN AWAY!! It is too painful to put yourself and your health into someone's hands, and have them blow you off. It's better to call it a loss and move onto someone else.

My Husband

My husband had almost all of the same symptoms, but his didn't start until 1994. He also had developed hundreds of tiny red moles all over the upper part of his body. He lost a lot of his body hair, and his muscles were extremely weak, but are strong now.

A doctor suggested that he had something called "polymyalgia rheumatica", and recommend using prednisone to treat it. My husband was hesitant to try prednisone and we couldn't find any other doctor who was really interested in finding out what was wrong.

Well... it turns out he had a friggin BRAIN TUMOR!!! A pituitary tumor of the brain, which was only diagnosed after he started GOING BLIND in the sides of both of his eyes. This story of course will have to be written another time, because I am worn out from the darn fibro story! He's had surgery, is taking medicine, and is doing GREAT now.

How am I feeling?

I am feeling much, much better now, but am not back to my old self yet, but I feel close.

Treatment - my own recipe (updated 6/2003)

Listed below is what I am using. I've been doing this off since 1996. I have learned to totally trust my body and let it tell me what to take. Essentially, I stand in front of my nutrients and pick the ones the seem right at the time. Please make sure that you research each item yourself if you are going to try any of them:

DHEA - 25mg each morning within an hour or so of awakening (this is stopped right now cause it made my menstrual flow too heavy which made my anemia worse, but I am going to try to find a way to add it back in.)
Fergon brand Iron Supplements - 27mg (I try to take this every night before bed, but it can cause stomach upset, so sometimes I change to every other night before bed. If I do get a stomach attack from the iron, I wait about a week before taking it again. The attack is where I just get bad pains in my stomach and then feel weak. I've had so many other horrible symptoms, this iron reaction is no big deal, cause the iron helps so much!)
Meclizine - 6.25mg per day
Sudafed - 60mg per day (this gives me a rapid heart rate, but it helps so much with the inner-ear problem, I just put up with it. I would love to find a sudafed deritive that did not cause the rapid heart rate.)
Futurebiotics Colloidal Trace Minerals (Electroprocessed - with 14 minerals in the bottle) 2 tsp per day (this one is the most expensive) - incidental note: this one made me stop biting my fingernails.
Vitamin B-12 - 1000mcg every day - sublingual
B-complex 100 every now and then
Vitamin E 400units every now and then
Beta Carotene - 10,000 units every now and then
Emer-Gen'C (Vitamin C drink with minerals and vitamins) 1-4 packets every day
Non-flushing Niacin 500mg every now and then
Co-Q10 - 150mg per day when I can afford it. It is toooooo expensive. The only brand I found so far that works for me is Sundown, which I get at Wal-Mart.
Cal-Max - every now and then
Folic Acid - 800mcg every other day (unless I get too much dry mouth, and then I stop for awhile.)

When I do get headaches, I use either Tylenol Extra Strength, or Excedrin Migraine formula. The Excedrin Migraine formula usually works very well, but is loaded with caffeine.
If my IBS diahrrea gets too bad, I take some Pepto-Bismol.


Read Phobia Free by Harold N. Levinson, MD. The book is not about Fibro, but he talks about "inner-ear" problems and the symptoms are exactly like what we get in our brains with fibro (not phobias, but memory loss and cognitive problems, etc.)

Incidental note: As per two MRI's I had, I have a large retention cyst in my left sinus. I believe that this causes me a slew of different head-related symptoms, but all of the docs totally blow it off. I have read on the internet, that if you have an infected "retention cyst" in your sinus, that is can cause about 7 different symptoms, all of which I have and have had off and on for years.
The END!

A Houma, Louisiana resident named Pam Fitzgerald wrote a book: "How I Conquered Fibromyalgia And Turned My Horror-Moans Into Hormones" She had made the link between fibro and hormones, and has found out through MUCH trial and error, how to use "bio-identical" hormone cream to REALLY help her Fibro symptoms. She used to have a website, but it seems to be down now. You can find her book on Amazon.com.