Love letter to normals by Claudia Marek

This letter was found on the www.fibromyalgiatreatment.com site.  It is written my Claudia Marek who is a co-author with Dr. St. Amand.   I think it is as close as you can get to explaining what life is like with fibromyalgia.  Sometimes we think our family and friends should automatically know what we are going through daily.  We can't assume any longer.  

LOVE LETTER TO NORMALS

by Claudia Marek

Here is my letter written to explain to family and friends what it's like to have fibromyalgia. It won't work miracles: it's hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn't help over half the people who tried them.  No matter how happy the people in the pictures look, there's still no miracle drug available.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying. 

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake.  I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational.  I know I am, but I can't help it when it's happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

THIS LETTER IS REPRODUCED FROM MY BOOK: FIBROMYALGIA: THE FIRST YEAR. IT'S AVAILABLE FROM BOOKSTORES AND HERE ON THE WEBSITE WHERE ALL SALES BENEFIT THE TREATMENT CENTER.
www.fibromyalgiatreatment.com Claudia Marek

Whoo Hoo

I just returned from my Dr. visit in Marina Del Rey and all I can say is Whoo Hoo!  My sister, Vicki, went with me to be my second ear and also to record the visit.  After Dr. St. Amand mapped me, that is to see if the phosphate is moving from my body, he pulled out the map from my last visit.  Oh my gosh, what a difference.  My left thigh, by the way that is a key place in your body to find fibro, had eight lumps in it my last visit.  This time it had only two.  This does not mean I am pain free, it means the phosphate is moving out of my body. which eventually will give me some relief.   I had been really concerned that I might be blocking because a truck hadn't hit me like I was expecting.  Apparently, the truck had foam bumpers and I didn't feel awful like I was expecting.  I did tell the doctor that I wouldn't know if a truck hit me because of the everyday constant pain.  He left my dose at 600 mg twice a day.  I know they raise the dose for a lot of people.  In visiting with him I told him I remember a three day pain respite many years ago.  I remember calling my daughter, Dana, and telling her I didn't know what what going on because I had no pain, no where.  Dr. St. Amand commented how said it was that three days without pain was a memorable event.  He encouraged me and said that I should begin to have some good days here and there and that will increase as I continue to dump the stuff.  He is not young, yet he runs between 15 and 18 miles every weekend. 

As we left the office on my visit, I yelled whoo hoo!  There, on the couch, was a young man of about 20 years old and his Mom.  This was his first visit to Dr. St. Amand.  You should have seen the pain and fear in their faces.  He has had every test possible to find out why he is in pain all the time.  When he heard my whoo hoo, he started asking some questions.  Vicki, my sister,  told him that I was progressing and he was at the right place. She told him how fortunate he was to find the doctor and be only 20 years old because I, her sister, had been dealing with this for over fifty years.  She opened her Droid telephone and showed him my blog.  He wrote it down and seemed so uplifted by our excitement of our visit.  As we left, we were both on a high.  Vicki, shed some tender tears as her gratitude rose up for our experience with this boy and his Mom.  I will include him, his Mom and all of you out there who are suffering this debilitating pain.  I am also going to include Dr. St. Amand and his staff so they will continue to have good health and be able to keep helping me like me.  

Please feel free to ask me questions or make comments.  I will do my best to answer you.

Second Appointment Coming Up

I am a little apprehensive about this visit to Dr. St. Amand.  I don't really know if I have had any clearing yet.  I have had a couple of events that I thought "THIS IS IT!"  After reading his book three times, I was expecting pain that might have been unbearable.  When I was last there, he told me that because the osteoarthritis is so painful, that it is sometimes hard to the fibro.  I am inclined to agree with that.  I have had quite a bit of pain in my upper and lower jaw and in my ears.  My ears have been hard as a rock for years.  A doctor once told me "If your ears are that hard, just imagine what must be going on inside."  Nice, huh?  I have often wondered why my ears are so hard.  When I get a haircut from a new stylist, it is always fun to see her wince as she tries to move my ears.  The pain I have had since being on guai is arthritis type pain in my ears and down the sides of my neck.    I have also had quite a bit of pain in my left hip and my left thigh.  I think that is a good thing.  I am taking a big suitcase with me so I can bring home sal free products from the pharmacy.  I haven't used lotion or deodorant for two weeks and I am about to blow away from dryness.  I am excited about my life and my future.  I am determined to participate fully and enjoy myself.  The pain will have to step aside!

Problem last post

I don't know what happened on that last post.  Maybe it is the drugs.  Ya think?  Anyway, I couldn't get all the words to stay together as you can see.  I tried everything.  I didn't want to delete the post because it took me so long to get it done.  My daughter, Dana, called and said the last paragraph was also missing  So...here it is.

One thing I should note is I have had a little extra energy since being on the guai. I still only have about four good hours each day but I am able to get quite a bit done in those hours. I am grateful for that! I am grateful for
answered prayers. I am grateful for my very supporting family. They are all as excited about the possibility of my 
improvement as I am. Thank you family!

I must confess

I'm sorry that it has taken me so long to write on my blog.  I have kept wondering why it is so difficult to write on this blog.  I have tried for so many years to ignore the pain and accompanying suffering.  I have really never shared my illness in any depth to anyone, on a very personal basis, other than my husband Larry.  My children have a pretty good idea but they don't live with it like Larry does.  A couple of my closest friends found out I was going to California to see Dr. St. Amand.  They asked my husband what was going on.  They had no idea that I was in pain 24/7.  Hopefully that is good because I have never wanted to hang this on my friends nor my family.

Also, another reason I haven't posted on my blog is I felt I needed to tell anyone that read this what Dr. St. Amand's treatment is.  It is so simple but yet complicated.  So.....I have decided that if someone wants to know all the details, they can go to his website or buy his book.  As for me, right now, I am mostly concerned with my progress in healing.

When on Dr. St. Amand's treatment, guaifenesin, it is expected that within a time, the fibro pain will worsen up to 6 to 8 times worse than normal.  That pain is a sign that your body is dumping extra phosphate out of your cells.  I have been on the treatment 18 days.  The osteoarthritis pain in my hands aand feet has been much worse.. Other than a couple of fairly nasty days I haven't had any extreme pain. Today, while putting things away, I got hit with a pain in my hip that ran down into my thigh that almost put me down. I, at first, got a little panic but then the light came on. I might be cycling out the phosphates today. Whoo Hoo! I can take it! I can take it!

I emailed Dr St. Amand's nurse this week with a list of my personal products to see why I wasn't having extra pain. I found out I was blocking for 11 days by using Cetaphil lotion which has a plant oil in it. (Most plant products in personal products will block the guaifenesin) She told me not to worry that I wasn't feeling extra pain. When I see Dr. St. Amand on February 26, his mapping of me will tell the real truth. He will be able to tell if my body is clearing out by the amount and feel of the fibro lumps. I can't wait!

One thing I should note is I have had a little extra energy since being on the guai. I still only have about four good hours each day but I am able to get quite a bit done in those hours. I am grateful for that! I am grateful for answered prayers. I am grateful for my very supporting family. They are all as excited about the possibility of my improvement as I am. Thank you family!

Quote from Dr. St. Amand's site

If you have fibromyalgia you are ill.
You are NOT crazy. 
"You may have been told that whatever you have is untreatable or that your symptoms are all in your head. People think you're a hypochondriac and doctors may not want to handle your case. Or you may have been overmedicated by well-intentioned health care providers who wanted desperately to help you. You may be having trouble getting refills for medications that make your life tolerable. You may be in danger of losing your job and your relationships. You may have fallen victim to those who are making billions of dollars a year off those desperately searching for something, anything, that will help..."

Arrival

How will you know that you've arrived if you don't know where you are headed?