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lovingpet -> RE: Fibromyalgia and treatment options? (7/31/2009 7:22:42 AM)
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I am so sorry you have come to have this diagnosis. Fibro is poorly understood and so far difficult to treat. It rarely resolves and there is no known cure remotely in sight. Many experts aren't even sure if it is classified correctly as a rheumatological disorder. I would say it isn't.
First things first. I know you are basking in the victory of FINALLY knowing what is wrong and having a name for it. I can relate with this since it has only been 18 months after about 18 years of this running in the background of my life. Please DO NOT stop looking for any and every other explanation. Remember, this new label is one that is incurable, chronic, and scoffed at by some in the medical community. If you can do better for yourself, please do. Some answers can be simplistic and help enormously. Others, maybe you just really don't want to know, but if they are not handled, it is undermining every single treatment you are trying for your fibro. You want these treatments to be as effective and without side effects as possible. Give yourself every possible advantage for it to happen.
Second, the news will finally settle in and you are left to deal with the fact that this thing in your life is not going away completely. On days where things are under control, this is not too big a feat to digest, but on those bad days it is a mental challenge not to become depressed and hopeless just based on the circumstances alone. This is rather life altering news. How you do everything in your life may have to change and some much beloved things may slowly slip away from you. Therapy is a good thing to consider as you adjust to all these changes and how they are affecting you. A lot of areas have fibro support groups that are helpful as well. Journal, share, post your own experiences that might help others. It is going to be an individual journey to come to terms with everything wrapped up in that one word. Feel free to draw upon all the help and support you can.
Third, do not compare yourself to or allow yourself to be compared to anyone else with fibro. This applies to a lot of conditions, but the truth is if you've seen one person with fibro, you've only seen one person with fibro. It expresses very differently in different people and treatments and levels of success and management vary widely. You DO NOT have to respond to a treatment the way "everyone else" does. Your body is unique. You may be one of the lucky few for whom management comes easy. You may not be. Remember that your journey is a personal one and be sure your doctors view it that way too. One size fits all medicine is useless with a fibro patient.
Fourth, I will echo the diet and exercise advice. I will also expand upon it a little. Depending on your particular expression of fibro, you may or may not be able to eat some of the things that are normally considered "good" for you, but as much as you are able keep it fresh, whole, and even organic/free range if you can. Keep as much nutrients in your food as possible by not overcooking fruits and vegetables (remember, fresh). Prepare meats in as healthy way as possible (grilling, roasting, etc). Steer clear of processed crap, fatty foods or sweets. Learn ALL the different things that could be on a food label that aggravate any or ALL your fibro symptoms. This is an ongoing process as so many chemicals, etc have been put into foods that new disturbing information is coming out all the time. Avoid those things even more simply by keeping clear of those kinds of foods when you can. Bad fibro days are the worst days to go the easy way and use such foods. You will likely feel worse because of consuming it. Exericise is great. What kind is more difficult to manage. This is one of those cases of "if it feels good do it", but also if it doesn't feel wonderful, you might have to suck it up anyway. If it cripples you for days or whatever, it is okay to give yourself permission to not do that activity anymore. It isn't doing you any good. Think of those days you are out of commission and not doing ANYTHING. Better to step it down a notch instead. In a similar vein, if you have been advised to lose weight, have the mindset that you will do so as you are ABLE. I found I could not drop my caloric intake below a certain level or I was so exaughsted I could barely muster the energy to breathe. I have watched as one activity after another has become out of reach. I lose what I can and let them bitch. If they want better results, they are going to have to manage my fibro better. Weight loss isn't only upon you to acheive. You have a medical condition. Doctors have to do their part too and don't let them pawn their responsibility off on you and place stress and guilt upon you. That stress and guilt will only make matters worse.
Fifth, learn as many different ways of managing pain as you can. Some of these things might be simple, like ice or a hot bath. Others may involve learning various meditation techinques or appropriate massage you can do for yourself or that others can do for you at home. Those are just examples. Pain medicines only go so far some days, so prepare yourself in advance with other things you can try.
Sixth, learn to listen to your body. It is so tempting to push hard on the "good" days. Resist this as much as possible. You will learn how your body feels when it is reaching it's limit. Also, you will learn some cues that you might be getting ready to enter a bad day. Anticipating this somewhat can help you have strategies in place for when you can't take care of your whole world.
Seventh, I will echo again to relax. What is happening to your body is happening and, though you are doing all you can to help yourself, a bad day is a bad day. I hear fibro folks say frequently, and have even caught myself, that they are having a bad day because they didn't "behave" the day before. That's bull! You have a life to live. Don't feel guilty about doing so. It sure beats laying around in bed every single day being defeated and passive. You have bad days because you have an illness, plain and simple. Everyone feels a little more tired and achy when they've had a big day prior, so what's the difference? Your symptoms are worse because you did x,y, or z? Did they have to be done or did you get some much needed joy out of doing them? Then, so what! You have to ride the ebb and flow of it to some extent. The pain, exaughstion, etc are unavoidable. You can't "behave" well enough to eliminate bad days. You may not even have much say over how many bad days you have. Live the best you can. That's all anyone gets to ask of you.
Eighth, do not rule out alternative therapies. There has been a lot of success in these other forms of treatment for fibro patients. Physical therapy, massage, accupuncture, herbal remedies and more have great promise. You get to use EVERYTHING at your disposal to help yourself be as well as you can be. If you can afford it, do it. If you can't, save up and try it at least once. Then decide what you might have to do if it proves to help substantially. Be careful of drug interactions both among your regular prescriptions and any herbs, etc that you add to your treatment plan.
Hope this helps sweetie! If you want more specific help or just to talk, my inbox is open! gentle ((hugs))
lovingpet
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