FROM SYMPTOMS TO SOLUTIONS   

How I initially found the cause of FMS symptoms and developed treatment that reverses them.

Some dates are approximate.

April, 2000

My chronic bad back became unmanageable. Back was not painful, just wouldn't bend.

Saw Internal Med Doctor (I/M). 

X-Ray, then MRI didn’t show anything.

I/M referred me to a Pain and Motion Specialist (P/M).

Waited for appointment.

Saw P/M 

P/M did an assessment exam on the inital visit - I was strong, coordinated, and functioning correctly except for my lower back. ALL in good shape except for back.

P/M sent me for another MRI of lower back.

MRI of lower back showed bulged disks - otherwise ok.

P/M prescribed Physical Therapy for 6 weeks, twice a week.

Prescribed Vioxx. 

I told him more than once that I did not want to take meds, as I was not in pain.

He said it would be best with P.T. 

Started P.T.

Went great at first. 

Exercise well tolerated.  I was enthusiastic.

Took the Vioxx – it made me very sick.  We think my stomach was bleeding.

P/M prescribed Celebrex. 

I told him again repeatedly that I did not want to take meds, as I was not in pain. 

He said would be best for P.T.

He offered other pain medication, too, but I insisted that I didn't have a problem with pain, just function.

During 3-time-per-week physical therapy, problems hit suddenly and full-blown over the four-day period I was taking Celebrex.

First day of Celebrex. 

Physical Therapy went great, but later started to feel pretty sore all over. 

Thought it was just from P.T.

Second day of Celebrex. 

Started to feel sick.  Thought might have overdone it at P.T.

Continued P.T.   Was able to do less and less each time instead of more.  

I told the Physical Therapists about having trouble walking and that my right leg had no feeling from the upper thigh down.  They thought that due to major surgery on that knee years earlier, it was just worn out and acting up.  They said not to worry.

During P.T.  I could not rest put any weight on my open palms, but had to make a fist to bear weight.

On next office visit to P/M I told him it did not seem like "everything was ok" at all.

At next P.T. told Therapist I could not feel my right leg from the mid-thigh on down.

Therapist said may be just overworked it on an old knee surgery. 

It became difficult to do exercises on hands and knees.   My hands felt like they would break at the wrists. 

Had to do exercises by putting weight on balled fists instead.   

Third day of Celebrex. 

Something was definitely wrong. 

Hurt all over and started to have coordination problems.

Started to think it was because of the Celebrex.

Fourth day of Celebrex.

In bad pain all over.

Called P/M's office  (was on the weekend);  his associate said to stop taking the Celebrex.

I discontinued the Celebrex immediately - after taking it for 4 days total.

Saw the P/M again.   It was very difficult to get around to get to the appointment.

The P/M sent me for an upper-spine MRI.  I was 47, and my spine it did show stenosis (narrowing of vertebrae around the spinal column) and bulged discs. 

I told the P/M about all the additional  symptoms I was now having - urinary and fecal incontinance, disturbed intestinal tract, numbness and intense pain in my hands and feet.

Sudden attacks of circulation loss in my hands made them cold and blue.   I don't think I mentioned the tenderness in all delicate body tissue, sore tongue, irritated skin around my fingernails and toenails, and feet that now hated wearing shoes.

They said carpal tunnel in my right hand was the problem.  That made no sense to us.  I do a lot of fence-building, yard work, etc, and had no hand problems before this all happened.  My pain, cold, numbness and loss of coordination were in both hands, arms, legs and feet, on both sides of the body, all at once.

The P/M prescribed a wrist support brace.  I did not go get it.

We called Searle Labs about the Celebrex.  They sent a questionnaire to the doctor for him to fill out and return.

Saw P/M . 

By this point I was having trouble walking and my hands were losing a lot of coordination.

P/M thought it might be a toxic reaction to Celebrex.

I phoned Searle Labs, the maker of the drug at that time and gave them all the info over the phone.

Their phone rep said they had no other reports of problems like this. They sent an Adverse Reaction Questionnaire to P/M Specialist.  

Searle responded and said they didn't know what it was. 

Later they again said they had no other reports of any problems like this.  

Before doctor visits I made sure to get plenty of sleep so I could understand and remember what they said.  As a result, I had few symptoms on day of the office visits.

I saw the P/M again. 

P/M said if had been toxic reaction, the meds would have cleared my system by now.          

He and his P.A. did another assessment. I was a total mess by then and continuing to deteriorate.

P/M asked if I wanted pain meds. NO. NO. NO.  I wanted answers.

Saw P/M again.

P/M sent me for blood tests and MRI of lower back. 

Blood tests finally came back. 

All ok. A and A and Seds a little high.

MRI of lower back showed Stenosis of Spine (narrowing inside spinal canal)

not unusual at my age.

At this point, I think the pain specialist thought it was in my head. Fortunately I knew better and my husband knew better.

Saw P/M

By now I was a total disaster.  Hubby was in busy season at work, so I had to drive myself to the appointment.  It was almost impossible. 

Instead of having a simple stiff back, I now had to lean on the receptionists desk just to stand, and hold my right hand with my left to sign my own name.   

Sleep problems were becoming more pronounced.  

Any sound or light during the night disturbed me.  In bed, supposedly asleep, I was dreaming and looking at the ceiling at the same time, for hours on end.  My mind raced - sometimes in all directions at once. Daily events or just parts of a song would replay rapidly in my head – often for hours.

Unable to concentrate most of the time. 

My left hand turned back onto wrist most of the time.

Feet hurt terribly.

Had now lost coordination and strength in both hands and arms, both feet and both legs.

Pain in arms and hands so bad I packed them in ice much of the time.

I was sleeping most of the time, but not really getting sleep.

With no answers, we began to wonder if I was dying.

MAY, 2000

Saw P/M

     

Sent me for CT scan - nothing weird showed up.

P/M's associate did EMG on hands and arms. 

P/M associate said I had Carpal Tunnel in right hand was all.  

Told her that I had no previous problem with hand and that Carpal Tunnel in one hand could not be making my legs and other arm bad.

But the P/M agreed with his associate - you could tell they thought it was in my head.

He prescribed a wrist brace.  I knew that it was foolish – so I did not go get it. That was very unusual for me to not take a physician’s advice.

Saw P/M

I told him the "wait and see" program was not working for me.  We wanted some answers.

After several weeks, the P/M doctor said to see a neurologist.

We made an appointment. 

Neuro saw me promptly.  I think it was because he didn’t have a lot of other patients.

He did  the same basic balance, coordination, general vision exam the pain/motion doc did.

Neuro read chart from P/M.  You could tell he thought the problem was in my head. 

Again, getting extra sleep the night before the appointments helped me think, and also masked most symptoms during office visits. 

Neurologist said I could have Lupus, MS, etc. 

Sent me for repeat of same blood tests as P/M had, plus some new ones. 

Blood tests took forever and came back with parts completely missing. 

Neuro saw that the hospital blood lab boss was a guy he knew and asked if I minded having more blood tests.  I should have realized then that this guy was not going to find any answers for me.  But, I did not want incomplete test results said I'd do anything necessary to find out what was wrong with me .

Blood tests took a long time to come back and revealed nothing new.

Saw Neuro again. 

Neuro just did the same exam as on the previous visit.   He did not remember what was discussed on previous visit and repeated himself. 

Said come back and he would do EMG.  That's what he had said the last  time.

Saw Neuro.  

He did EMGs and got the same results as the P/M Specialist's associate did.  Carpal Tunnel in right hand. 

From one visit to the next he couldn't even remember, or tell from his notes, what he had already done on the previous visit. This was the worst physician I have ever met.  

I have a tremendous respect for physicians, but this man could not find his own back side if he was naked and used both hands.  I don't know how he gets back and forth to work every day.

We eventually dumped him.

By then I was not able to concentrate much.

Unable to do housework, or lift anything. 

Working only about half a day, every other day. 

Husband and I continued to wonder if I was going to just keep getting worse and die.

"Fibromyalgia" - I hear the word for the first time ever.

One of my vendor friends heard me talking about my health problems and lack of diagnosis. He said - "Maybe it's Fibromyalgia."

I asked what that was and he said "problems like you are having".

JUNE, 2000

My husband, Dale, and I decided to take matters into our own hands.

We ordered a big stack of books by mail from the Orlando Public Library on every illness we had heard mentioned and any with similar symptoms or nerve related.  The staff was very helpful.

MS, Lupus, Myasthenia Gravis, and Fibromyalgia were among those we received.

We sat on the floor in our TV room and started reading through them in the evenings. 

There was no match for my symptoms until we got to "The Fibromyalgia Handbook"  by Dr. Harris McIllwain of Tampa, FL.

I had every symptom in the book, but the book didn’t list every symptom I had. There was a match with test results, too.

It said that it includes breathing and sleeping problems.

The book described Brain Fog, explaining my months of sometimes driving around aimlessly. 

Taking a 30 minute nap at 10:00 am and 3:00 pm every day made it possible to work almost all day, but I was still not alert. 

Because the book also noted the intestinal problems, I started to cut out most fried things; my insides felt much better.

My breathing had become continually more shallow since the Celebrex incident.  In bed, I choked up and was unable to sleep.  Dale said maybe these were things we could work on.

From serious burning in my esophagus, we knew I had an acid problem.   I started chewing the largest size of Tums tablets, around the clock, for the calcium carbonate.   It helped reduce the over acidity.

The book said Rheumatologists try to treat it, but that there was really no good treatment.

We made an appointment with a Rheumatologist, but it was 2 weeks away.

I called the Neuro's office and gave them a couple of days' notice to get my medical records together.  They said they would be ready the same day, but I still gave them time.

With that two days' notice, they still had to dig around forever for my records even though it's a tiny office. 

On the way there, I had stopped by Borders Books and bought a copy of the library book we had found, The Fibromyalgia Handbook. ( I don't own a copy myself.)

I was just going to leave it at his office for him.  He came out of the back, so I handed it to him and said as sincerely and respectfully as I could, "I brought you a treat.  It's pretty good and I thought you might like to have a copy."

What I was thinking, though, was that at least maybe the next 40- something female that comes into that office with Fibromyalgia won't go through what I did.

While we waited for the Rheum appointment, my husband suggested we try to solve or help my sleep problem. He thought that maybe street noise, neighbor dogs barking, etc. were keeping me awake. He bought some foam ear plugs to block out all sound at night.  Genius!  They really helped me get to sleep and stay asleep.

It had been months, maybe years, since I had dreamed normally.  The book said that problems with neurotransmitters can cause this.  I knew from school that lack of certain elements can cause neurotransmitters to not rebuild and refresh your brain during sleep.  Taking a regular multivitamin in the morning and at bedtime helped a little and I began to dream again.

My work and home life continued to deteriorate, though.  I missed work, and desperation was setting in. 

I was always a really positive, Polly Anna type, but was becoming gloomy, withdrawn, and exhausted.

Searle Labs was called again; they still said they had no other reports of these symptoms or any problems caused by Celebrex.

One night when the pain was so bad I was crying in my sleep, I got up desperate to try to find some relief. The ice packs on my arms weren't helping.   I thought maybe our # 1 boy had left sports rub or something similar in the medicine cabinet. 

(Notice - Don't use what I did - there is something better and safer.)

The only thing I found was Campho-Phenique gel that we keep around for cold sores and bug bites.  No one in their right mind would intentionally do this, but I rubbed it on my arms and legs. 

I still can’t explain what made me do that, but in the morning, the pain in my hands and arms was gone and some real coordination had returned to my hands for the first time in months.

Over the next weeks, as pain built up in my body, (every few days) I used the gel.  It worked every time. 

The P/M doctor, the neurologist, the rheumatologist, nor the pharmacists gave any credence to this.   It is only camphor, phenol and mineral oil. 

I have since read that using phenol over a large part of the body can be fatal.  Apparently the amount I used was not enough to produce that outcome.

It didn't anesthetize the affected area, it just seemed to chase out the problems.  It was especially helpful when rubbed on my shoulders, always before bedtime and left on overnight.  I do not use this for pain since we found the complete treatment. 

Once we knew the name of what I had, we started scouring the Internet. This was about August of 2000.  There was a lot of chaos and confusion on-line about Fibromyalgia.  There were lots of support groups of people telling how horrible it was and that their lives, work, and marriages were destroyed by it.  

Lots of jerks on the Internet taking advantage of sufferers by selling unnecessary supplements and hokey products.  I was so glad to have an intelligent and supportive husband.

On the Internet message boards we noticed that many people in support groups had bad days. What was odd was that they were having them at the same time, even though they were in different parts of the country and on different message boards.  Flares, they called them.

We could not understand this.  It wasn't holiday time, during an election - the war had not yet started, etc.  Nothing that could have been causing their common experience.

Then, we realized that extra light from the full moon was coming in around my bedroom curtains. Maybe that was it.  What if just a little light was enough to bother us?  We bought a little cloth eye mask to block out all light while I sleep.  It worked great.  I was able to get to sleep quicker, get to deep restorativesleep,and stay there longer.

At this point we realized that "people with Fibromyalgia must perceive, light and sound as being much more important than they actually are."

Our 30th wedding anniversary was on July, 3.  We didn't do anything.  I was too sick.

The Internet

The internet search told of a doctor in California treating Fibromyalgia with Guaifenesin and had references to Guaifenisen and Dr. Paul St. Amand’s web site. 

I had just started to look at his web site and saw that it said Guai helps some people. Before reading any more, I told Dale, "That's what my blue pills are!” and we ran to get the bottle.

Somehow I got it in my head that my prescription was the same thing as just plain Guaifenisen.

I always kept prescription  Entex LA on hand, due to chronic bronchitis and breathing problems.  A simple knee surgery in 1981 had gone bad, causing blood clots in both lungs, double pneumonia, and brain damage during about 30 days of hospitalization.)

There was a renewal left on the empty bottle I had, so we had it filled within the hour.

Guaifenisen

I took 400 mg in am and again in pm - about half the dose that the Guai Doc pages said to start with, then more, to get greater results. It felt like jello had been clogging up my body, and that the medication dissolved it. 

Started to feel so much better, couldn't believe it.  I was probably about 65% of my old self again within an hour.

We raised the dosage to the amounts they said were most common, even  though it was much more than I had ever taken at once.

We couldn't believe no one was bragging on this treatment method - it was working wonders!

Well - there was reason they weren't bragging - they weren't getting this result.  I hadn’t taken what they were taking - and the difference was very important.     

Guaifenisen is an expectorant.   We later realized that the extra ingredient, a decongestant, is critical to really treating Fibromyalgia.

It was very fortunate that I made the mistake with Entex LA, or we would  might never have learned that both an expectorant and a decongestant are needed.

We had been told that the only thing that could be done for extremely severe Fibromyalgia is Oxydocone and sleep tablets.

Dale said, "Well, honey, I don't guess we'll sit still for that, will we."   He never gave up on me, and that kept me going, too. 

Saw the Rheumatologist.  He's from India.

I told him everything that had been going on with the meds, from the Celebrex to the Guaifenesin. I think he thought I was from Mars.

Rhuem said maybe I did have some symptoms of Fibromyalgia.

Told me to sit facing the East and visualize a golden light flowing all over my body. (I'm not kidding - he had me do this for a week!)  It was pleasant, but has nothing to do with FMS.

He prescribed Paxil to take at night - saying many with Fibromyalgia need this, but didn’t say why.  He said it might take some getting used to.

Again, getting extra sleep the afternoon, night and morning before my appointment masked most of the symptoms I was having.

I added the Paxil to what I was already doing.  I had to try 3 different times to take it; it just made me feel awful, but I kept after it and have had no problems with it since then.

Saw the Rheumatologist for my follow-up  visit. 

Told him the Paxil was working great. 

Paxil stopped the obsessive / compulsive behavior and depression I had been having the past few months.  

I was able to focus and make decisions and the negative-mindedness went away.

I told the Rheum about how the Entex LA had worked miracles. He did not see why.  You could tell we were not on the same wave-length about all of this. 

At my next vist to the Rheumatologist, he said to keep taking the Paxil and that I didn't need to come back unless I had other problems.

Taking so much Entex LA ran the prescription out very quickly.  I asked the Rheumatologist if he would call in a refill.  He said, no, let your Internal Med Doctor do that.

Everyone from the Pharmacist to the mailman was excited with how well I was doing, as they had all watched me sink all the way down and then rise back up.

Internal Med Doctor

I called my Internal Medicine doctor's office for prescription renewal.  That was no problem.  I've taken it for years. Did not go in because did not feel I needed to and my I/M doctor had recently lost his mom.  It was unexpected and he's such a great guy.  We sent a short sympathy card.

Pharmacy

I went to get the renewal of Entex LA.  The pharmacist had an odd look on his face. 

Their entire staff had been so helpful to us during all the months of illness,  and so happy for us when we found treatment.  Now they looked like they were choking.

The pharmacist had to tell me that I could no longer get Entex LA. 

It had been recalled by the FDA.  About a month after we had found it worked for Fibromyalgia. 

After 20 + years.

I was so shocked I couldn't say anything. 

He said it was because it contained a decongestant that was now banned. 

I said I thought Entex LA was just Guaifenisen.  He said no, it's a combination.  600 mg of Guaifenisen + 75 mg of the decongestant.  (It was quite a while before a workable replacement version of Entex LA became available.) 

I thanked him, left the pharmacy, and left a message on my husband's voice mail. 

Dale called back and I told him what had happened. Then I just cried and cried and cried. 

In 30 years of marriage, I've only cried a few times.  Even though it was right in the middle of his busy season, Dale said he would come home as early as he could.

I had taken the last of the pills in the bottle I had at home, the pills that had given me back my life.

This is where the real struggle began.  To a search for enough meds to keep me going and eventually to a substitute med that would do the same thing.   At one point my uncle had recruited an organization of HAM radio operators who called all over Mexico to try to find something for me. 

The search is a story all in itself, so I won’t tell it here. 

With all the problems I had been having, and with one specialist sending me on to next, I had not been to see my Internal Medicine doctor during all this. He is our Primary Care Physician and a wonderful physician.  His mom had passed away unexpectedly during that time, so we had not been in to his office. 

When I did go to see him and told him all that had happened, I found that he does treat patients who have Fibromyalgia.  Help was there all along, but in my pain and brain-fog, I had just not realized it.

From that point on, we have relied on him for advice and care.  As I make Discoveries about the causes, action and treatment, I pass them along to Dr. Tom.

I was already having complete success reversing my FMS with the treatment Dale and I had come up with.  Dr. Tom didn't know of any other treatment that would do all that, so he agreed that I should continue with it.

He was very supportive and patient though the many prescription modifications I requested while fine-tuning the meds, diet and lifestyle to continually try to improve my situation.  Eventually, I was able to develop the entire working treatment method. 

Since October, 2000, I have been getting relief from all symptoms as long as I stay on correct treatment.

The complete arsenal – a combination of  Decongestant, Expectorant  (Guaifenisen), Paxil, eye mask & ear plugs, neutral pH water, and not eating and acidy foods, is what does it. 

I get sufficient deep, restorative sleep whenever I like. I can work and play almost without restriction as long as I can keep my chemistry balanced. 

Because Celebrex hit me like a meteor, my body lost almost all ability to control its own pH.  For that reason, it's trickier for me to stay just right on treatment than for most who are using this method.

Being awake, full of energy, happy, productive, and telling jokes again feels great.  There is no pain, and the coordination and strength returned to my hands and feet, arms and legs, making me feel normal again.

I am able to lift almost anything I want without dropping it.  My body is very flexible. My back does not hurt and it works great. I perspire appropriately and can grow good, strong fingernails now for the first time in 20+ years. 

Chemical imbalances in my body have been restored. My female system started working for the first time in 25 years and since December, 2000, it has been just like a clock every 28 days.  We are very happily married, and 49 years of age is no time to have a surprise pregnancy, so in April of 2001, I had a tubal ligation for contraception.  Dale said he would go, but I talked it over with my Gynecologist and preferred this.

It is obvious that I am not cured or in remission, or I would not have to use any treatment, but with these specific medications and lifestyle changes, I am beating the symptoms of Extremely Severe Fibromyalgia.

There are other decongestants available now that work, so for now we are just trying to reach as many people as we can, as quickly as we can, with the treatment info that can give them back their lives.

Anne Hillebrand

Orlando, FL

www.FibroFix.com

                          "Whenever I have found out anything remarkable,

                I have thought it my duty to put down my discovery on paper,

                      so that all ingenius people might be informed thereof."                                        

                                             Antonie van Leeuwenhoek