Explaining Fibromyalgia to Friends and Family

When I was first diagnosed with Fibromyalgia I immediately told my family members that lived close by. They took the news in stride (a few members of our extended family had FMS and CFS). Unfortunately my parents lived far away and it could have been months before I would be able to see them and tell them about the change that was going on in my life. At the time I was only nineteen, I had just gotten married and left home, I needed my parents to know that I was sick.

I was in too much pain for the long phone conversation that would be required for all the facts and the questions. I worked for days on this email, typing it up sowly in the mornings when my pain wasn’t too bad. It’s been altered so that it can be more universally useful. Feel free to use it as a guide or to lift as much of it as you need. Telling your loved ones you’ve been diagnosed with an incurable medical condition is hard, and you have so much more to deal with right now.

Dear Family,

As you know I’ve been having a lot of pain recently and none of the doctors I’ve seen have been able to give me a real explanation. There’s a lot of advice but no help. A few weeks ago my most recent doctor sent me to get some tests done. I’m sorry this is coming in an email but my migraines and pain just can’t handle the phone right now.

The doctor listened while I told her about my pain and the pain killers I’ve been takings, about physiotherapy not working and having to quit my jobs. When I told her everything she did a diagnostic pressure test and sent me for an MRI, blood tests and CT scans. The tests ruled out anything else that could be causing the pain. Are you sitting down?

I have Fibromyalgia.

Fibromyalgia is an illness that is not very well known (I don't know how much you guys know about it). Some medical practitioners don't even consider it a real illness yet. Most people think it's caused by a glitch in the nervous system. Basically when I feel pain that pain message is sent to the brain and as soon as it gets there it is magnified. The pain is more intense and lasts a lot longer than in a regular person.

It feels like every nerve-ending is constantly sending me pain messages. My skin feels like it’s always bruised and the simplest things can trigger migraines. I’ve been told that all of this should get at least a little better over time [Aside to the reader: this is true. The first 1-2 years are usually the worst].

Fibromyalgia often occurs alongside Irritable Bowel Syndrome (I know it‘s gross, bare with me), short-term memory loss, difficulty concentrating, fatigue, insomnia and headaches. So many things are starting to make sense.

Basically the more I read about it the more it explains every problem I've had. Unfortunately, there is no sure way to test for or treat Fibromyalgia . It is a combination of symptoms and it's manifestation and treatment is different for everyone.

For some people it comes and goes, for some people it disappears during pregnancy (here's hoping) for some people exercise can help ease the pain. Right now, I can't exercise as the pain is too bad.

It turns out the best things I can do are try to keep my stress levels down (as stress makes the pain and fatigue worse) continue to eat well and do my very best to sleep regularly. Other than that we'll take it as it comes.

The thing you need to understand is that it is something that I will have for the rest of my life. There is no cure for it. Like I said, there are treatments. We’ll just have to see how well they work for me and how much of my life I can get back.

I do, however, feel very lucky that I live in this day and age. Fibromyalgia and Chronic Fatigue Syndrome are very similar and I know that [name deleted] had to go through thirty years of people telling her she was lazy and that this was all in her head. The fact that I found a doctor who was able to diagnose me after only fifteen months and is eager to pursue treatment is pretty amazing.

For months I’ve been going around feeling like I was crazy and wondering if I was the only person who was experiencing this pain. How it could hurt so much but nobody could see it? Why will doctor after doctor not believe treat me? I finally feel like I might not be going crazy.

It’s helpful to have a name for the pain and to be done with the doctors who kept telling me that I needed to lose weight, cheer up, stop drinking coffee or exercise a little more. I have also been able to reach out to an online community of thousands of people who have survived the first (and apparently worst) years and some of them have even been able to work again and lead really fulfilling lives. It’s hard to see a future like that right now, my pain is so bad, but I’ll be starting a medication soon. Here’s hoping it will give me some relief.

[Signed]

I hope that you have been fortunate, as I was, to find a doctor who is listening to you and is eager to treat you. I know all of our paths to Fibromyalgia have been different, as have all of our experiences with this disease. Here’s hoping that, at the very least, I have made the part where you have to stand in front of people who still see the healthy daughter/sister/niece/wife/mother/friend/brother/son/husband/father etc. they knew and tell them how much being you has changed, and how hard it is now. Remember that to them everything looks the same. Try to be patient, your diagnosis may be hard for them to accept. In fact they may not accept it at all but a concise, medical explanation is the most you can do. Here’s hoping for understanding families.

Odds are outside your family, and perhaps even within it, most people will not want a detailed explanation of your fibromyalgia. Illness makes people uncomfortable, and a detailed description of your suffering may result in feelings of guilt, frustration and even resentment. Here are a few simple answers for when you are in a situation where you have to explain your FMS.

• What is it?

It is a neurological disease wherein the parts of my brain that deal with pain and sleep don’t work properly.

• Where does it hurt?

Everywhere. It’s my nerves themselves that are constantly misfiring pain signals so, though the pain doesn’t really mean anything, I do feel it constantly.

• What’s causing the pain?

When a healthy person experiences pain it is the body’s way of telling you there is something wrong. My pain no longer works that way, my nerves and brain are constantly sending and receiving pain signals.

• How did you get it?

It is a hereditary condition that can be triggered my mental or physical stressors.

• How do they cure it?

There is no cure.

• So what can you do about it?

There are a variety of treatment options but no treatment that works for everyone. I’ll have to use trial and error to find one that works for me.

• Can’t you just take pain killers?

The pain is in my nervous system not my muscles or ligaments so narcotic pain killers are not very effective.

• Can’t you just power through?

Physical and mental stress makes the pain worse. If I pushed my body or pain tolerance the pain will only get worse and worse.

I hope this helps, good luck and keep on rolling.