My Thoughts







FMS is a difficult thing to describe, I don't think anyone can truly understand it unless they experience it. The chronic pain and the way it changes your life is not something that is easily explained. FMS affects everyone differently, some people are able to go about their normal lives and others are in wheel chairs. Fibromyalgia is inherited. There is FMS on both sides of my family & many of our "symptoms" are different and our abilities & pain levels vary. Fibromyalgia is not consistent. It is constantly changing. For example ~ one day you may have severe pain in 6 areas of your body, the next day you may feel the severe pain in three different areas as well as three of the areas from yesterday. Sound confusing?? It is! Besides having sharp, shooting or stabbing pains in particular areas you are also sore & hurt all over. There are many other "symptoms" that go along with this.

The biggest question I get asked is how do you cure it. Unfortunately there is no cure. There are options to try to make things better, more bearable and on occasion the FMS will go into remission, but from what I understand that doesn't happen often. One of the big things is figuring out what medications work for you and at what dosage. Something you will read everywhere is "stress makes FMS worse". But how do you stay away from stress?? You can't, so the next best thing is to find things that relax you, so when you are stressed you have some things you can do to help combat the increased pains you will experience. There are many alternative therapies that people use to help with FMS. There is no one thing that works for everyone, it is a matter of finding what helps you.





Getting diagnosed is one of the big stressors! I was one of the lucky ones & was diagnosed in a little over three months. For others it took years & years to be diagnosed. There is no test for FMS, it is a matter or ruling out all other problems and checking for tender spots (specific areas on the body that hurt when pressed). For many years people were told "it's all in your head" because the Dr's couldn't find out what was wrong. I was told that less than 10 years ago some people were put into mental institutions because the Dr's couldn't find what was wrong & they just assumed "it was all in their head". That's scary! Believe me, when you have this you KNOW it's not in your head! Sometimes people with FMS will develop depression but this is a result of the fibromyalgia -- not the cause of it. FMS completely changes your life and that can be very difficult to adjust to. The guilt over not being able to do the things you used to do is enough to push you over the edge. Many people get angry with themselves and this is hard to overcome. The bottom line is that there is nothing they could have done to prevent it. They did NOT cause the FMS by things they may or may not have done. FMS is difficult for others to understand because "you look ok". With FMS the pain is all on the inside ~~ others can't see it. And as the person starts to learn to cope with the constant pain they will start showing less & less signs of it (ex: grimacing, biting their lip, furrowed brows). Many times people don't even know there is anything wrong with those who have FMS because there is no outward signs.

Many people are told by "well-meaning friends/doctors" just get out & exercise. Yes, exercise is very important but it is not a cure, nor is lack of exercise a cause. And it is very possible that they may only be able to do a few light stretches, or to walk one block at a time. The exercise routines they used to do are not longer an option for them. Even athletes who start having problems with FMS have to start at the bottom. It is very frustrating. Exercising causes major pain so it is very important to start slowly. Another problem with FMS is the delayed reaction. Sometimes pains from "over-doing it" don't hit until 24 to 48 hours later. So it is very easy to over-do. You may think you are doing ok, but then the next day it will hit you & knock you flat. Despite the pain it is important to find a routine because it will help you cope. If you start slow you will eventually build up to where you can do more & more.

Fibro-fog is another aspect that can really throw a person off. Fibro-fog basically means that you are not thinking clearly. This ranges from doing "stupid" things (like putting the salt & pepper in the refrigerator and putting the milk in the cupboard or forgetting words you have used since kindergarten) to very severe fibro-fog where you can't function (write checks, drive a car, cook dinner, follow a conversation, etc). Many times when people are experiencing fibro-fog they don't even realize it! It can be so severe that people may think you are getting dementia. Fibro-fog can happen in short bouts here & there or it can happen for days or weeks on end.

If you hear of a new "cure" for FMS, or a new treatment that is supposed to help. Tell the person who has the fibromyalgia but please don't expect them to give you a report back on if they are doing it or not, what the doctor said, or how it works. Well-meaning friends, who are truly trying to help their FMS friend, will often give the person advice on what to do. Advice & information is good (and wanted!) but people don't realize that ALL of the FMS persons friends are doing the same thing. And it is VERY overwhelming! Sometimes it makes them feel like if they don't try "your" suggestion that they are a bad friend & that the person who told them about it will think that they don't trust them or that they aren't trying to get better. You can't try everything -- at least not all at once! And sometimes you can't remember or don't have time to tell the Dr all the things that you heard that are supposed to help. Because remember there may easily be 15-20 different people giving them advice! Think of it this way -- say you are looking for a new Hamburger casserole recipe & collect all your friends recipes. Can you try making all those recipes at once? No. You have to try one thing at a time.

Sometimes people who have FMS need to talk about it, and other times they need a break & don't want to talk about it. Ask them what they want. Many times because family & friends are concerned for their loved one they want to know what's going on, and this is very understandable & the FMS person appreciates this, but it can be depressing at times for the FMS person - they keep repeating the same things over & over & over. And unfortunately there is no way to quickly explain. And if you ask them how they are doing and they say "good" it does not mean they are miraculously cured! I have gotten to the point when people ask me how I'm doing I reply with "I'm doin'" and I laugh or smile. Before this if I said "good" people would say "really?" and think I'm all better. Let's face it when people ask you how you are doing you really don't want to say, "I feel terrible, I hurt all over, and I'm having bad pains here & here & here". You don't want to say it, and people don't usually really want to hear it. It is important to talk to FMS people about it, it shows that you care & you love them enough to ask, but follow the person's cues on if they want to talk about it right then or would they rather change the subject & talk about more upbeat/positive things. I am not saying this due to all personal experience. Almost every book I have read, and many of the FMS people I have talked to have problems with this. I am one of the lucky ones who has very understanding, supportive friends & family.

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