Fibromyalgia sucks
Today, May 12, is Fibromyalgia Awareness Day. I had heard of fibromyalgia over the years, but I never knew what it was, that is, until a friend of mine was diagnosed with it. I've known Michelle for probably more than 15 years now, and it forced her into medical retirement and Social Security Disability (SSDI) before she turned 40. She had completed her BA and was working on a CPA and MBA, now that probably will never happen.
Fibromyalgia is classed as a rheumatoid disease, same class as arthritis, and it is rather difficult to diagnose because the symptoms are highly variable. The main symptoms seem to be interference with sleep, basically it's almost impossible for you to get a good night's sleep, sometimes even with sleeping pills, and hyper-sensitive pain clusters. There is no blood test for it, there is no solid diagnostic test that says “you have fibro!”. The basic test is for a rheumatologist to poke your body in 18 points, and if 11 or more are painful, you probably have fibromyalgia.
And we're not talking pushing as hard as you can: just a light touch at some of these points can cause excruciating pain in the patient.
We're talking about sometimes doubling over with pain.
One of the joys of having fibromyalgia is that, if you're on SSDI, you become a medical guinea pig. If her rheumatologist hears of a new drug that might be effective for people with fibro, and he prescribes it, she has to take it. Violent mood swings, suicidal depression, all sorts of lovely potential problems. And she has to try the drug. Because if there's the slightest chance that it can improve things to the point that she can go back to work and get off of SSDI, they have to try it. She's had some pretty horrible complications because of this, but she soldiers through.
In a way, patients with fibromyalgia react to drugs a lot like patients with AIDS: ten patients taking the same drug will have ten different reactions to it. So it's a total roulette with the doctors having to go step by step through a pharmacopeia list to try and help the patient, and usually it doesn't help.
The thing that does help Michelle? Alternative medicine. About the only thing that Michelle's found to provide actual help and relief is acupuncture and naturopathy/homeopathy, and that's not covered by SSDI.
My condition, CVID, sucks. But my treatment works and keeps me reasonably healthy and I can sleep. Michelle cannot. We'll talk on the phone and I'll ask her how she's doing, and frequently the answer is “don't ask.” Or “there's a storm moving in”, and I know the changes in air pressure cause her great discomfort.
Naturally, there is no cure for fibromyalgia because they really don't know what's going on. There's no one drug or class of drugs that successfully treats it for all patients, there is no operation that can make it better. There's not even consensus amongst doctors as to what it is. So the people affected by it, 2-4% of the population with a female to male incidence ration of 9:1, are screwed. They're ping pong balls bouncing back and forth between doctors hoping for a diagnosis and successful treatment, and it's a total crap shoot finding good doctors and good treatments.
Since Michelle told me that she has fibromyalgia, I've learned that several other friends and acquaintances have it to varying degrees of difficulty. It's amazing how many people 2-4% of the population can be, not to mention the chances of you knowing someone with it.
Michelle forwarded an email to me from a fairly well known blogger with this condition, part of it really stands out:
“ME (fibro) is an “invisible illness”. When you do actually feel well enough to go out for a little bit, and people see you, they might say that you look well. But they don’t know that that might be the only thing you can cope with that whole day, or that whole week. They don’t see how ill you look when you’re stuck in bed the rest of the time, feeling awful and exhausted. Maybe only your very closest family see you like that - to them, it’s not invisible. It’s a similar story for people who have fibromyalgia, dysautonomia, Lupus, and so on.
And because there isn’t a recognised test for diagnosing ME - yet -, it means that doctors don’t find anything wrong, so it can be invisible to them too. Of course, if they looked for the right things, they would see all the severe biological abnormalities when people have ME!
But instead, with ME, you often have to wait ages to get a proper diagnosis, you get told by doctors that it’s all in your mind, or you’re not really ill, you get given inappropriate treatments which can make you worse, you’re denied benefits, your work or school try and force you back because they don’t try to understand, even a lot of your family and friends tell you to “snap out of it”, or that you’re not trying hard enough to get well. Perhaps they choose to deny it, because they find it too difficult. Believe me, if we could “just get over it”, we really would!
As if having ME isn’t bad enough, then feeling like you’re on trial all the time, having to justify to people who haven’t been where you are, that you really are so ill, when all you wish is that you weren’t, is just adding a massive insult to injury.
So if you know someone who’s got ME, and you really want to help them, what can you do? From my personal experience, and what friends with ME have said to me, I think there are basically just two things that are most important.
Firstly, believe them. Acknowledge and accept that the illness is real - because it is. You don’t seriously think that someone with ME would choose a life like that, do you? There’s only so much daytime TV you can bear to watch! Seriously, remember what they were like before they were ill. People with ME are usually the most conscientious and highly motivated people I’ve ever met. We honestly, desperately want to do stuff. It’s not like when your back is turned, we stop “pretending to be ill” and just get on with fun things and enjoy an easy life! No, it’s the complete opposite. When you see us, we are mustering all our energy to be as normal and energetic and look as healthy as we possibly can - and as soon as you’re gone, we collapse, feeling far worse than you could imagine! It’s so easy to really hurt someone who has ME by making little comments or acting in a way that shows that you don’t believe they’re really ill, or that you think they’re exaggerating how bad they feel. Believe them.
And being that ill is lonely. So, the second thing is: be there for them, when you can. Remember, your friend with ME is still the same person they were before the ME. While they are ill, they might sometimes be a shadow of themselves, and maybe can’t do anything much for any useful length of time, and are probably even more sensitive to everything than they normally are. But they’re still them! So you should still be you, and treat them just the same as you always did! Keep in touch, send them a message, it can really brighten up their week! Don’t be upset if they don’t reply, they might be too tired, or they might even have forgotten. Hopefully, they’ll let you know if they like hearing from you or seeing you. Don’t expect them to sit and chat to you for hours - it’s better to see them for just 10 minutes every week, than a whole day only twice a year.
Try to be there for them if they need to talk. But understand that sometimes they don’t want to, or can’t. And try to include them in things, but consider that they might not be able to do very much, or for very long. So don’t feel upset if you’re trying to involve them, but they say they can’t join in this time. Chances are, they’d still like you to ask them again next time.
Don’t get me wrong, no one I’ve met with ME wants pity - or a fuss, or attention. And sympathy actually gets boring after a while. But they want, just sometimes, to be accepted - reassured that they’re still valued no matter what; to be accommodated - just occasionally having things arranged to let them join in as if they’re still part of the real world; and to be supported - however small that support might seem, but for it to be reliable, and carry on with it, so they won’t feel you’re giving up on them.
The best friends to me when I was really ill, are the ones who made even just a little effort to understand. And who treated me - not as an “ill person” - but, when they could, they tried to treat me as normally as possible - making the sometimes pretty big allowances to help me to be “myself”, within the terrible limits ME put on me. And they did that without making a big issue out of it, and quite often without even mentioning it at all. To all my friends, I thank you.”
There have been times I've spoken with Michelle where her day was “I got up, took a shower, and that was all I had energy for.” I've taken her on errands many times when I've been in Phoenix because she just couldn't do them by herself. She has a handicapped tag for her car, and there are definitely times that she needs it.
So like I said, fibromyalgia sucks. Michelle turns 42 this year.
http://www.fms-help.com
http://en.wikipedia.org/wiki/Fibromyalgia
Fibromyalgia is classed as a rheumatoid disease, same class as arthritis, and it is rather difficult to diagnose because the symptoms are highly variable. The main symptoms seem to be interference with sleep, basically it's almost impossible for you to get a good night's sleep, sometimes even with sleeping pills, and hyper-sensitive pain clusters. There is no blood test for it, there is no solid diagnostic test that says “you have fibro!”. The basic test is for a rheumatologist to poke your body in 18 points, and if 11 or more are painful, you probably have fibromyalgia.
And we're not talking pushing as hard as you can: just a light touch at some of these points can cause excruciating pain in the patient.
We're talking about sometimes doubling over with pain.
One of the joys of having fibromyalgia is that, if you're on SSDI, you become a medical guinea pig. If her rheumatologist hears of a new drug that might be effective for people with fibro, and he prescribes it, she has to take it. Violent mood swings, suicidal depression, all sorts of lovely potential problems. And she has to try the drug. Because if there's the slightest chance that it can improve things to the point that she can go back to work and get off of SSDI, they have to try it. She's had some pretty horrible complications because of this, but she soldiers through.
In a way, patients with fibromyalgia react to drugs a lot like patients with AIDS: ten patients taking the same drug will have ten different reactions to it. So it's a total roulette with the doctors having to go step by step through a pharmacopeia list to try and help the patient, and usually it doesn't help.
The thing that does help Michelle? Alternative medicine. About the only thing that Michelle's found to provide actual help and relief is acupuncture and naturopathy/homeopathy, and that's not covered by SSDI.
My condition, CVID, sucks. But my treatment works and keeps me reasonably healthy and I can sleep. Michelle cannot. We'll talk on the phone and I'll ask her how she's doing, and frequently the answer is “don't ask.” Or “there's a storm moving in”, and I know the changes in air pressure cause her great discomfort.
Naturally, there is no cure for fibromyalgia because they really don't know what's going on. There's no one drug or class of drugs that successfully treats it for all patients, there is no operation that can make it better. There's not even consensus amongst doctors as to what it is. So the people affected by it, 2-4% of the population with a female to male incidence ration of 9:1, are screwed. They're ping pong balls bouncing back and forth between doctors hoping for a diagnosis and successful treatment, and it's a total crap shoot finding good doctors and good treatments.
Since Michelle told me that she has fibromyalgia, I've learned that several other friends and acquaintances have it to varying degrees of difficulty. It's amazing how many people 2-4% of the population can be, not to mention the chances of you knowing someone with it.
Michelle forwarded an email to me from a fairly well known blogger with this condition, part of it really stands out:
“ME (fibro) is an “invisible illness”. When you do actually feel well enough to go out for a little bit, and people see you, they might say that you look well. But they don’t know that that might be the only thing you can cope with that whole day, or that whole week. They don’t see how ill you look when you’re stuck in bed the rest of the time, feeling awful and exhausted. Maybe only your very closest family see you like that - to them, it’s not invisible. It’s a similar story for people who have fibromyalgia, dysautonomia, Lupus, and so on.
And because there isn’t a recognised test for diagnosing ME - yet -, it means that doctors don’t find anything wrong, so it can be invisible to them too. Of course, if they looked for the right things, they would see all the severe biological abnormalities when people have ME!
But instead, with ME, you often have to wait ages to get a proper diagnosis, you get told by doctors that it’s all in your mind, or you’re not really ill, you get given inappropriate treatments which can make you worse, you’re denied benefits, your work or school try and force you back because they don’t try to understand, even a lot of your family and friends tell you to “snap out of it”, or that you’re not trying hard enough to get well. Perhaps they choose to deny it, because they find it too difficult. Believe me, if we could “just get over it”, we really would!
As if having ME isn’t bad enough, then feeling like you’re on trial all the time, having to justify to people who haven’t been where you are, that you really are so ill, when all you wish is that you weren’t, is just adding a massive insult to injury.
So if you know someone who’s got ME, and you really want to help them, what can you do? From my personal experience, and what friends with ME have said to me, I think there are basically just two things that are most important.
Firstly, believe them. Acknowledge and accept that the illness is real - because it is. You don’t seriously think that someone with ME would choose a life like that, do you? There’s only so much daytime TV you can bear to watch! Seriously, remember what they were like before they were ill. People with ME are usually the most conscientious and highly motivated people I’ve ever met. We honestly, desperately want to do stuff. It’s not like when your back is turned, we stop “pretending to be ill” and just get on with fun things and enjoy an easy life! No, it’s the complete opposite. When you see us, we are mustering all our energy to be as normal and energetic and look as healthy as we possibly can - and as soon as you’re gone, we collapse, feeling far worse than you could imagine! It’s so easy to really hurt someone who has ME by making little comments or acting in a way that shows that you don’t believe they’re really ill, or that you think they’re exaggerating how bad they feel. Believe them.
And being that ill is lonely. So, the second thing is: be there for them, when you can. Remember, your friend with ME is still the same person they were before the ME. While they are ill, they might sometimes be a shadow of themselves, and maybe can’t do anything much for any useful length of time, and are probably even more sensitive to everything than they normally are. But they’re still them! So you should still be you, and treat them just the same as you always did! Keep in touch, send them a message, it can really brighten up their week! Don’t be upset if they don’t reply, they might be too tired, or they might even have forgotten. Hopefully, they’ll let you know if they like hearing from you or seeing you. Don’t expect them to sit and chat to you for hours - it’s better to see them for just 10 minutes every week, than a whole day only twice a year.
Try to be there for them if they need to talk. But understand that sometimes they don’t want to, or can’t. And try to include them in things, but consider that they might not be able to do very much, or for very long. So don’t feel upset if you’re trying to involve them, but they say they can’t join in this time. Chances are, they’d still like you to ask them again next time.
Don’t get me wrong, no one I’ve met with ME wants pity - or a fuss, or attention. And sympathy actually gets boring after a while. But they want, just sometimes, to be accepted - reassured that they’re still valued no matter what; to be accommodated - just occasionally having things arranged to let them join in as if they’re still part of the real world; and to be supported - however small that support might seem, but for it to be reliable, and carry on with it, so they won’t feel you’re giving up on them.
The best friends to me when I was really ill, are the ones who made even just a little effort to understand. And who treated me - not as an “ill person” - but, when they could, they tried to treat me as normally as possible - making the sometimes pretty big allowances to help me to be “myself”, within the terrible limits ME put on me. And they did that without making a big issue out of it, and quite often without even mentioning it at all. To all my friends, I thank you.”
There have been times I've spoken with Michelle where her day was “I got up, took a shower, and that was all I had energy for.” I've taken her on errands many times when I've been in Phoenix because she just couldn't do them by herself. She has a handicapped tag for her car, and there are definitely times that she needs it.
So like I said, fibromyalgia sucks. Michelle turns 42 this year.
http://www.fms-help.com
http://en.wikipedia.org/wiki/Fibromyalgia