Portions of this letter are taken from a letter entitled "A Love Letter to Normals" by Claudia Marek. From a book she wrote. I found it online along with this statement: 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!
I felt the origonal tone of her letter was that of something written possibly to a spouse or significant other, so I worked on generalizing mine to a broader audience of friends and family. The key concepts and descriptions touched my heart and resonated so completely with me that I felt I might have found a tool to help others understand even a tiny bit what was going on inside of this body of mine. As Claudia Marek said please feel free to use my letter as a template for your own or as it is. Reposted here 11.14.09.
Dear Family and Friends,
If you are receiving this it means I feel you are an important part of my life and I want you to understand what is happening to me. This was suggested by my therapist and also others who suffer with Fibromyalgia. Ever since I had the children my health has been going downhill. I had a partial hysterectomy to deal with my Endometriosis which I have had since my late teens, after Brynna was born. I have been to specialists to deal with my Migraines which I have had since my mid teens. And then in January of this year abdominal pain sent me back into the ER. They started to do a battery of tests to diagnose what the heck was going on in my body. Things started out simple with checking for appendicitis or kidney stones, and when that wasn't the problem it got scary for a while. They scared the hell out of us, my husband was beginning to think he may loose me when doctors started talking about Cancer, and thankfully that wasn't it. Then they decided an MRI of my brain was necessary, thinking a possible brain tumor could be the culprit. Again, thank God the scan came back clean. I was then sent to see an Internist, she looked at the tests already run, my medical history and ran a few more tests. She then sent me to a Rheumatologist because she felt I had a condition called Fibromyalgia. At first I was thinking it was some weird tropical disease, because I had never heard of it, she got quite a laugh at that one. The Rheumatologist ran his own battery of tests then came back and agreed with the internists diagnosis.
In the end it turns out that for me all of it was interconnected. There have been corralations found between those who have certain diseases and Fibromyalgia, however just because you have one doesn't mean you will have the other. For instance I as my doctor put it have the unforunate luck of the draw to have Migraines, IBS, Endometriosis and Fibromyalgia. How did the doctor put it a serious mix of badness..... Some people with Fibro just have Fibro. Some have Fibro and Migraines, others Fibro and IBS.....etc. See the pattern. You can have any mix of these things going on. So basically the doctor said I am like a juggler trying to keep a bunch of balls in the air (everything under control), and that's why it has felt like once I get one thing under control something else spins out of control, it is because I probably dropped a different ball. My body is simply overwhelmed, not a good state for Fibromyalgia.
I never knew it but I am not the first person to deal with this in my family. I hadn't talked to my Aunt on my Dad's side in 10 years or maybe I might have know what Fibromyalgia was before it hit me. All I knew growing up was that my Aunt was very sick all the time. I talked to her for the first time two weeks ago and when I informed her that I had been diagnosed with Fibromyalgia, she said she was sorry and then informed that that's what she had too. I was shocked and scared. I had seen what this woman's life was like and the thought that mine would be that bad left me shaking. Thankfully my husband and therapist reminded me that she was diagnosed 20 years ago when they didn't even have a name for it. Medicine has come a long way and will continue to develop new treatments. Plus my Aunt has promised to stay in contact with me and guide me through some of this illness. She can tell me what treatments made things much worse for her and save me from some of that.
So here is what Fibromyalgia is or what it feels like, at least the best I can put it into words............
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 though they might have wished they could on really awful days. I know that there are days I wish it. I can't control how often I feel good or how often I feel terrible. This is all very new to me and I am learning as I go, please be patient with me. I am more than willing to share what I learn from my doctors and therapists. 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 some of the symptoms I don't want you to think I'm making it up. My symptoms are not on the outside like a lot of illnesses, I don't "look" sick, but even though it's invisible to the outside world it is still very real inside my body.
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. I am being sent to a Pain Management Specialist in Seattle, who will hopefully find the right regiment. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.
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 because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, 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. 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.
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 them for pain. Sometimes I just hurt all over.
Besides pain we have muscle stiffness which is worse in the morning. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull 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. Or these things happen also when my muscles start to "twitch" for no reason what so ever.
Because I feel bad most of the time I am always pushing myself, and sometimes I 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 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 there.
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 which I have no idea where I put, 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.
I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. 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 to say it. I know that sometimes this means I will have to go outside, or out to the car,or home to sit alone and that's really all right. 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. Sometimes I just can't seem to fall asleep no matter what I do. I'm sure that's confusing to be around.
All these symptoms and the chemicals in my brain can leave 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.
I have other symptoms like irritable bowel and pelvic pain that will take their toll on my appetite as well as other factors of my life. I go through days of being okay with knowing that I have this and days that I want to scream at the world that it's not fair. A lot of days I find myself asking God, Why me? I feel trapped inside a body that is broken and it feels like a prison most days. Our family has hired a nanny to care for our two toddlers because I simply can't do it, and that breaks my heart. Every time I am down in my room and I hear their laughter and I know my pain keeps me from enjoying my family, my heart aches. I detest being away from them so much and I worry constantly what effects it will have on them. I hate that they see me in constant pain and sick all of the time. I want to throw myself on the ground like my two year old would and throw a major fit about how unfair this is to all of us, but that would hurt me too much. The price is to high. There are things I know I will not be able to do now and that makes me sad. For example, I will probably never take my kids on rides at a theme park because the price to my body will be too high.
There are things in this life that I will do despite this horrible illness, no matter how creative I have to get to make them happen! I will make compromises to succeed in as many dreams as possible. All I ask of you is to be be understanding, forgiving, and believe in me. To be as healthy as possible I need to surround myself with positive people who understand and want to help me, not make things worse. I only have a small amount of energy at my disposal. Think of it like a bank account. I will only make withdrawals on my account of energy for those who are willing to help me make deposits into that account. If I need to cancel to things at the last moment or change plans or whatever, know this I am sorry. If you are frustrated just think how I feel trapped in this prison of a body.
I love and respect all of you enough to send this letter to you. If you have received this it means you are an important part of my life. This is my way of letting you know what has been going on and why I have been off the radar so much. I am sure many of you knew of my diagnosis, and for those who did not this was the best way I found to explain it. My therapist suggests writing things out because that is how I can get my emotions out most effectively, or at least that seems to work best for me. Plus it allowed me to really gather my thoughts together. It has been really hard for me to explain Fibromyalgia, and this is the best I can come up with.
Love Always,
~Mindy
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