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July 17th - Letter to our Family and Friends

Jul 15, 2008 - 7 comments

Let me start by saying that I have Fibromyalgia.  I'm an active,  well educated, hard working 30 year old female. I work 50+ hours a week and I workout at the gym a few times a week. My husband and I have a great life together. I have taken a very limited amount of medication over my 12 years of struggling in pain.

This is probably not what you pictured when you heard that I have Fibromyalgia. We are stereo typed into a group of whining women (and some men), who are pill seekers, who need to toughen up and deal with life. A few days ago there was an article on about Fibro. There was a blog in which people were saying things like "get over it", "Fibro isn't real", "Get off your butts and do something and you'll feel better", "You just want drugs" etc etc. Reading these comments really lit a fire under me. I've also recently seen posts on this forum from people who are struggling with how to make their loved ones understand. So I decided to write this in my journal in hopes that I will help someone. Even if it's just one person!

I know it's hard to understand how people diagnosed with Fibromyalgia feel. We are in some kind of pain all the time and it seems a bit ridiculous. You're probably thinking, how can a person have soo many different issues going on at the same time, right? Some may still think that Fibro is a junk diagnosis because of the lack of understanding. It's easy to believe that Fibro isn't real since most tests that we endure come back normal. Before you jump to an uninformed conclusion, please keep in mind that MANY Fibro patients have other "real" disorders that are linked to Fibro. I personally have Endometriosis, Interstitial Cystitis, Migraine Headaches,Supraventricular tachycardia (fast heart rate and weird beats) and Irritable Bowel all of which are legitimately medically diagnosed.  I've had a few surgeries due to the endometriosis and reoccurring cysts, I've had 18 weeks of catheterized treatments for my bladder disease, and multiple test and monitors on my heart. They all prove that what I feel is real. The pain is very real!

Fibromyalgia was the first diagnosis I received at the age of 18,  it has been about 12 years now. Like I said earlier,  I have since been diagnosed with Endometriosis, Interstitial Cystitis, and IBS by other doctors who were NOT aware that I had been diagnosed with Fibromyalgia. I was embarrassed to tell them that I had Fibro because 12 years ago the awareness was much lower and I had some doctors tell me that Fibro wasn't real. So I continued to see specialist after specialist for the other related medical problems and treated each of my problems separately.

Most recently, I had chest pains so severe that I visited my doctors office 3 times in 2 weeks. After enduring a few tests on my heart the doctor told me that I had Costochondritis. I had never heard of this before. When I began researching I learned that it is an inflammatory condition affecting the chest wall. Once I read the word inflammation I knew that my doctor's diagnosis was correct. This flare of inflammation was probably due to having Fibromyalgia. It only makes sense, how can I continue to have soo many unrelated issues?  The current research shows that all of these conditions (and many others) are common in Fibro patients. So I've had to except that Fibro is real, although it's still not completely understood, it's a real chronic pain condition.

So I ask for you to imagine a world where you are in pain day after day. Sometimes there's no words to describe the feelings. We find ourselves trying to explain it and we can come up with 50 things that it may feel similar to, but at the end of the day nothing really describes it. So we are just trying to make it through the day, we still have work, kids, and a home to tend to. Then we may develop a new symptom, so off to the doctor we go. The doctor wants to run  a few tests. We get our hopes up that it may be something that can be cured and we can return to normal.  Once the results are in we may be told that everything is normal. So we're left emotionally hurt, we wanted soo bad for this test to bring an answer. Now we may sit in the car and cry outside the doctor's office, but we have to come home and get on with our lives. We carry all of this pain, anxiety, disappointment inside. All we want is for our loved ones to say they care, that they are sorry for our pain, that they wish they could help. We know that there's nothing you can do to magically heal us, but we long to feel accepted and supported.  We need your validation and to hear you say you believe our pain. We need a shoulder to cry on sometimes, not because we are weak, but because we are worn out from the heavy load we endure day after day. If we fly off the handle about something small and insignificant, it's not really because you left your shoes in the floor, it's because at that moment we have hit our ropes end. I know that when I don't feel supported by my husband I carry around some hostility and when I blow my lid he's left thinking that I've over reacted to a situation. When the truth is I'm not reacting to that specific situation at all. I'm reacting to the fact that I'm miserable that day and I want him to care. There have been times when he's said that I'm crazy. I know he gets just as frustrated as me. I understand how hard it is for him to have to endure my ups and downs. He's really a great person and he loves me very much. But in spite of it all there is still a major disconnect when it comes to my medical conditions.

I could go on for days describing the many obstacles that Fibro has placed before me. I want to be clear in saying that yes we can hurt all over every single day. And yes, we may hurt in our arms today and your foot tonight. We may breakdown in moments that are overwhelming and we are NOT crazy! I will be glad to share details with anyone who needs help validating their situation to a loved one. Some times I think they just need to hear it from someone else.

I hope that someone can find comfort, strength and understanding from this. Good Luck to everyone in your journey!

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by idesofmarch, Jul 17, 2008
That spoke my thoughts perfectly.  Awesome, very awesome!  You explained it very well and I know that who ever reads this will finish with some new knowledge.  I pray that many uncaring spouses, family and friends will agree to read this so they can find compassion for Fibromyalgia patients.  I personally have 90% of the long list of symptoms and illness of FMS and I forget what it is like to be without pain-it has been over 25 years that I've had chronic back pain and issues and then FMS was diagnosed 12-2000 even though I know I had it earlier than that. I have had atleast 4 doctors cause my to cry and feel like a hypocondriac.  I've been belittled and ignored by medical people. The loss of myself, of the things I used to be able to do, hobbies, work, sex, housework, drive more, think, comprehend, sleep etc etc is gone for maybe the rest of my life.  Is that living? Not really.  I have prayed many times that my God would take me home now. I won't take my own life because I do have people here that would be hurt and devastated by that. More people in this forum should write a letter to their family, friends and coworkers. It does ease some tension to put it in writing or audio.  Thank-you for sharing your personal journal with us. Sharon

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by kitty51, Jul 17, 2008
I cried when i read your journal,you are exactly right! i have endometroisis and cysts too as well as IBS arthritis and all the things tha t go with fibro and tinnitus that makes me feel that my head will explode,and people wonder why we get so angry and frustrated.Then to go to bed at night and and not get a peaceful nights sleep.The racing heart beat ect ect it just goes on and on.Get  your family to read your journal and some of our comments too,as i have said before FMS people should live on an island together at least we all understand it.You wrote it very well,i couldnt have done it better than you.

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by Oldroser, Jul 17, 2008
I've had fibro for many years, my old (now retired) internist was great about diagnosing it and trying to help, although the SSRI's prescribed to help me sleep made me fat! I also have had migraines for even longer and am low thyroid. I had horrible periods with huge clots of blood gushing out. D&C showed abnormal cells so the fifth, or was it sixth gynocologist I went to saw it and said "why haven't you had a hysterectomy by now?" Because the other doctors, including the one who gave the D&C (thank goodness I always get copies of my test results) REFUSED! The results of the hysterctomy was endometriosis, fibroids and cell activty said to be pre-cancerous. Afterwards I read that menstrual bleeding like that is often a symptom of low thyroid, gyn never tested me for that. (Other doctors did over the years but turns out they used the wrong test! Always insist on a TSH test.)

Anyhow things are SO much better now I am on Lyrica for the pain. I can get a good night's sleep!!!! Didn't gain weight on it like the SSRI's but my internist says some do. I call it a miracle pill. My older cousin also has fibro and migraines. She takes Oxycontin in a patch, Celebrex, Lunesta, Lyrica, and Topamax. We both go in for shots when lower back pain, for example, is really bad. That is my worst trigger point. Do research Lyrica and ask your doctor about it, it is approved for fibro now, originally for shingles pain I think. Such a huge help for the pain, my neuro and rheumatologist were both wanting me to go to a pain doctor, which turned out to insist I should go to a 3 week clinic from 7:30 am til 5 with only a few minutes between classes and no, I couldn't lay down, I should not need to lay down and rest. Jerks! You know we must "do but not overdo." With the added layer of fatigue from brain lesion I need to rest frequently!!!! Anyhow, once on Lyrica there was no need of any pain doctor or clinic.

I've read Cymbalta is now ok'd for fibro. I tried it some time back and it did nothing for me, your mileage might vary. Wellbutrin and ibuprofen didn't work very well either. At first the ibuprofen and amytriyptline were all I had (close to 30 yrs ago.)

Avatar universal
by kitty_female, Jul 18, 2008
I've been married for 10+ years; with so many downs in the process (but never considered divorce as an option, until now).  Since last year our 2 kids and I are having multiple symptoms.  My husband thinks everything is in my mind. After so many discussions, he agreed to come to my neuro's appt. I felt so hurt when he asked him if my symptoms could be due to depression and suggested the neuro to give me depression pills; I refused.  Instead I got neurotin to control the symptoms (which improve a lot).  We did not talked to each other for weeks, I was so hurt and mad. I almost gave up.  I can surely be faking it, like he said to grab his attention, or because "I'm depressed" and I created all those symptoms in my mind and my body is reacting.  But one thing I can not do; it is: make my two kids have spasms or put in their heads symptoms. I don't tell them how I feel or what are my symptoms, (they are too little for that) and even when they complained, I disregard them with simple explanations - even though I have the same symptoms.  Lately, I admit it, I feel so tired and depressed. So many test done on myself with negative results. My Lymphos were high at one time, I was hoping this will give a clue for the symptoms, but at the end of last month,  I went to the infectious disease doctor, many test were done and re run. He did not find anything wrong or chronic and even the Lymphos were back to normal. Our condition or disease may be different from MS or fybro, but we all need that validation from our family and friends, their love and understanding. I do not know if our condition will get better or worse and if I will find an answer, but I want to feel that I did what it was possible to find it.  Once I read that there is a reason for everything.  I already found two:  I had slowed down and I'm more understanding.

(My daughter was already reading a book, and asked me to re-read it together.  My first thought was I do not feel like it, but I agreed.  We were in the first chapter and the material did not look appropriate for her- domestic violence and suicidal thoughts - but she had alreagy read up to chapter 11 by herself.  -I was thankful that I agreed - so we can have a talk later about chapter one.  We're in chapter 4 and so far the book is good.  The book is "Dream a Little Dream"

There is hope. Do not let it go.


Avatar universal
by PlateletGal, Jul 19, 2008

Thank you, melo ! What an outstanding post. I can definitely relate, although I have CFS.

I had written my story this morning, but there was an "application error" and it didn't post (arrgg) (it was a long post). I'll try again, but this time C & P it before I hit the send button !

In my case, I had a severe case of mono when I was only 18 years old. After I had the mono, I was always sick and in the Urgent Care nearly every month. I had URI's, sinus infections, bronchitis, strep throat... you name it. None of the physicians there knew what to do with me or had any answers as to why I was so ill. The only one who seemed to take my concerns seriously and especially after reviewing my medical records, suggested that I get an HIV test. Of course I knew I didn't have HIV, but I got the test anyway. I was working in a hospital with blood, so why not ? Of course the test was negative. So after then, I saw numerous physicians and was bounced around like crazy. Nobody had any answers for me and despite how ill I was, I continued to work. I would go to work with flu-like symptoms every single day and then after work, I would fall asleep for hours. My family didn't know what to do. After years of hearing my about my symptoms, they decided to constantly remind me that my lab tests were normal. (arrgg). Needless to say, I looked healthy and was working... so they didn't take me seriously. That is very painful and I hope that nobody has to ever go through such a thing.

So although physicians didn't have a diagnosis, for many years I would continue on and on. A couple of times I would need to get the FMLA (thank you Clinton), so that I wouldn't lose my job because I had an extra absence or two. I didn't have many vacation days because my illness zapped those up for sick leave time. I often sought help from alternative medicine practitioners and found that they were understanding, compassionate and helped me with my symptoms !

In the late '90's, I googled my symptoms and the "CFIDS Association of America" website popped up. Well I checked out the symptoms of CFIDS and cried for a couple of minutes. I knew right then that I had CFIDS and it all made sense to me. I had a diagnosis and I felt so relieved !!! And then I continued reading on.... I read that there wasn't a treatment for CFIDS, no test to diagnose the condition and many physicians didn't believe the illness was even real ! Talk about a SLAP in the face ! Here I was thankful to have some answers and then after reading that, I felt like I couldn't talk to my physician about CFIDS. Just as Melo pointed out.... I was afraid of the response I would get. What is WRONG with this country where people are so judgmental & angry ?? Why are people so suspicious these days ?

Well for those angry, suspicious people..... there is a lab test now that can not only diagnose fibromyalgia, but also CFS. It hasn't been approved by the FDA yet, but is expected to soon. One of the labs performing this test is

My hope for people who have chronic illnesses is that our friends & family members will THINK about what they are doing and then realize they need to be more supportive of their loved one(s). It seems like if people have an acute illness... everyone is there. However, if you have a CHRONIC illness.... people seem to be uncomfortable. Especially if you look healthy.  I rarely mention my illness or symptoms to people and yet have lost "friends" because I can't go out with them as often as I would like to.

I am currently on a protocol that is set out to cure my condition. I thank God every single day for those people who support me and my quest to recover from this devastating illness. The protocol I'm on makes me feel worse... it is difficult and there are some restrictions. There are no magic pills when it comes to HEALING... it takes time and effort and SUPPORT.

There is hope as kitty said.... do not let it go.

Avatar universal
by lacy1191, Apr 20, 2009
My health issues started at the early age of 23....I am now 43.  After many years of hopping from doctor to doctor, test after test, huge medical bills, pain, depression ( & who wouldn't be !!!) , months in bed,  & trying every and all medications , I discovered the source of the problems thru my own research.

I insisted my physician test me for an intracellular mycoplasma infection. It came back positive!  Finally a test that showed something !!!!    On top of that, I have a very low thyriod,which I learned can be tested yourself by taking your temperature first thing in the morning - - a reading  of 97.4  or lower indicates  a low thyriod. Make sure your doctor is testing your T3's & T4's. Even if they are within "normal' range, often treating the symptoms is recommended.  I recommend Armour Thyroid vs. synthriod.  

I also have tachycardia attacks, allergies, headaches, muscle fatigue, muscle aches & often horrible fatigue & chronic yeast.  However, after treating the mycoplasma infection with antibiotics, treating the yeast , and my immune system with lots of vitamins for years, I have felt MUCH better. I can even say, I got my life back.  I remember the day I woke up and the nerve pain in my legs was gone!  I can now plan to do something without the fear that I will dissapoint.  All the mental stuff that goes along with the fibro takes years to shed after the pain and fatigue fade....

My suggestions to living your life with fibromyalgia or CFS is to educate yourself on what treatments are available besides "pills". They tend to give you a snowball effect.   I found wonderful tools such as the book "From Fatigue to Fantastic" by Jacob Teitelbaum & a doctor who treats fibromyalgia as an immune problem vs. a crazy person / pain problem. It took many months and phone calls to doctors over 5 states to find her & I travel to Atlanta to see her-which is 2 1/2 hours away.  
There is a Fibromyalgia Center in Atlanta now, also.

I heave learned to  take care of myself spiritually, physically and mentally.  You will have AWFUL days like so many of you have described, but you can have good days when you take charge of your own care. Educate yourself and continue to share your battles along with your triumphs.   We are a strong, courageous bunch who just happen to have a very difficult illness.  
God Bless!

Avatar universal
by cherrie63, Jun 02, 2014
Lacy, please tell us who is the doctor in Atlanta that you drove 2 1/2 hrs to see ??

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