My Letter

When I was first diagnosed with fibromyalgia I was quite overwhelmed, and trying to explain fibro to my close friends and family was also overwhelming. I found some "letters" online that others had written for the family and friends and I adapted and wrote my own. Below I have pasted what I wrote.

It is not brief, as we all know fibromyalgia is not a simple thing. But I chose to send it to only those who I thought would truly understand and help support me when I need it. I am really solidifying my own support group as this too helps me win against fibro. I think having the written letter also helps others to be able to refer back to it as needed. Please feel free to copy and adapt for your needs. I know it can be overwhelming and hard to share what all is going on with you, with others. I hope this letter is able to speak for you as it has for me.

I keep it in my library, and when I meet new friends who I feel close enough to and trustworthy I let them read it to understand.

As you probably know, I have been diagnosed with fibromyalgia (second opinion confirmed).

The good news is that I cannot die from it. The bad news is that it is a chronic condition, meaning I will battle with it for the rest of my life.

This is life-changing, and I have recognized the importance of having a strong support group around me. You are part of my closest family and friends, and I would like to help you understand what I am dealing with, and how you can help with understanding me. I know that together we can get through this :) It will require major changes on my part to control my life, but just minor adjustments for you to help me, mostly it is as simple as understanding what I am dealing with.

If and when you have the time please read on.


1. There is no known cure for fibromyalgia. The doctors don't know yet what causes it, so for now the only way to tackle it is to deal with the long list of symptoms and learn to treat those. As new research uncovers more information about the underlying causes of FM, we'll have more answers.

2. FM is not the newest fad disease. In fact, it isn't a disease at all, it is a syndrome with a specific set of signs and symptoms which, unfortunately for the patient, take place together. (In addition to my joint pains I also have rashes, mouth and gum pains, muscle aches and so many other things that come and go daily.) Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

It also isn't new, in the 1800's a surgeon described and started studying fibromyalgia. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Doctors have made long strides in migraines over the past 20 years that I have suffered from those, so i am hopeful that the next 20 years they can make similar big strides in helping with FM.

4. Please understand that I still need you in my life and I can still live a full life! I just have to learn to understand my limitations, and this is not your burden. Please keep me me in the loop for fun activities and I will decide if it is something I can do. As I make plans with you, I can make sure to not overdo things so I can attend, but if I do have a bout where I have to back out please understand and please do not leave me out of future activities. Having you in my close support group is a key to helping me and continuing our close relationship.


1. My pain - My pain is not caused by inflammation. Taking arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my feet, hands, elbows and/or knees. It is not well understood, but it is real, and a daily reality. There is no rest from pain. Something always hurts, and this wears me down. Sometimes the pain can be so bad that I imagine lying on a bed of nails would feel better that the pain I am suffering with. Managing my pain is a constant challenge, but there are some things aside from trying medications that make can make me feel better, that YOU can help me with! - laughter, pleasant thoughts, happy memories, good times.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability. Fatigue is the number one complaint of people with FM. According to the latest statistics 100% of people with FM have chronic pain and 98% have chronic fatigue. I feel like I have to lie down when I am already lying down. There isn't enough energy in my body to go around. I have to choose daily activities carefully and put limitations on what I can do so as to not "overdo" it and pay for it later/tomorrow with worse pain and fatigue. Simple things like going to the grocery store, making dinner, doing dishes can be exhausting for me, but it is up to me to decide what activities I can do each day.

3. My forgetfulness - Those of us who suffer from it call it "fibrofog." I may not remember what I promised to do for you, even though you told me just seconds ago. I do not have a selective memory. On some days, I just don't have any short-term memory at all. You can laugh at "fibrofog" but it isn't always funny. Many people have to go on disability and leave their careers they love because their cognitive skills are so undependable. It is very hard to explain to people why you can no longer perform a job when the only physical activity you do is sit and type on a computer, and when you look just fine and not sick. Quite often I may have problems finding the right words for a simple sentence. Please bear with me during these times and understand what I am dealing with.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I often lose my balance and get dizzy for no explained reason. I have also lost strength in my hands and fingers and may drop things often and not be able to do things I used to be able to.

5. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FM. Severe, unrelenting pain can cause depression and seem hopeless. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. I appreciate you helping me during these times to get me out of the house for a simple get together, movie, lunch or dinner or just hanging out with good friends and family.

6. My insomnia - I have been dealing with this for quite some time and it is a big challenge for people with FM. It is hard for me to fall asleep, and when I do it is hard for me to wake up. Even getting 8 or 9 hours of sleep may not be helpful as studies have found that people with FM do not get enough restorative sleep, and this does affect my fatigue and my weak muscles. Hopefully in the coming years doctors will learn more about the sleep connection to FM.

7. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

8. My weight - The weight I have gained from FM is not by choice, and doctors do not know why or how to fix it. I am learning to fine tune my diet and nutrition even more, as well as learning what exercise I can do without making my symptoms worse. I am hoping these changes will help me with my weight.

9. My exercise - While it may seem contradictory (it does to me!) exercise can help me stretch and strengthen my muscles, and is a key to managing my symptoms, but I cannot overdo it. Something as simple as a daily 10 minute walk can help. I think the Wii is going to be a GREAT simple tool for me to do simple exercises, and to track my weight and abilities. I'll get more controllers - please come over and play the Wii with me!

10. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months (hoping!!) In fact, the good days, and knowing that my friends and family are always there for me, are what keep me going! It is often hard to keep a positive attitude, but I am trying!

11. My uniqueness
- FM affects everyone differently. The most frustrating things about fibromyalgia are the flare-ups and constantly changing symptoms that make it impossible to make plans and predict how well I will function. The scary, maddening and infuriating thing is not knowing what to expect, how to manage, or how to trust my own body. I have to learn now to ask for help, which is very hard for me to do. Please help me with this.

I hope that this helps you understand me. If you have any questions or want to know even more please feel free to ask me. I am researching this as I have the energies and am learning more everyday, and doctors too are learning more everyday trying to better understand and treat this strange affliction.

I know that having you in my strong support group is a key to helping me deal with this, and I am glad you have read this far to understand me and how you can help. I am glad we are family and friends, and I still want to be in your life and there for you as well! As I said, it will require major changes on my part to control my life, but just minor adjustments for you to help me, mostly it is as simple as understanding what I am dealing with.