Knowing that there is some sort of a problem going on in your body and your mind over time eventually takes its toll on you. You return back to the doctor's office only to be given a new prescription for who knows what because nobody, not even your own doctor is listening to you. Does this sound familiar to any of you out there? This is the purpose of me writing this is to let you know...YOU ARE NOT ALONE!
All the years of knowing that ‘something’ was wrong with me was futile. I was first of all a sickly toddler with poison through my system but too young to be operated on. I was having fainting spells from about 3 years of age onward. None of these things seemed to concern anyone but me. The chronic headaches and chronic stress and anxiety that I was suffering with at the age of 12 or 13 still was not of any concern to the doctors. I was given medication by the doctor and that was that. No examinations or tests. Perhaps they thought I would outgrow it, but it only became worse as the time went on and the doctors gave me scripts for more potent medications. I became very frustrated with doctors. What was the purpose of going to them? Trying to explain that ‘something’ was wrong when all they did was give me another script of something that really didn’t help except perhaps help to take the edge off. That to a person in chronic pain is of some sort of consolation...but still doesn’t get rid of the problem. The pain was now going to other areas as well. Perhaps a touch of arthritis or growing pains. Probably it was ‘just’ my headaches and stress. One doctor actually told me he thought my headaches were all in my head. I burst out in tears and in a rage and told him...well I can’t tell you exactly what I said to him because that would be quite rude! But...I did tell him very clearly that the headaches were very, VERY REAL! He looked at me rather sarcastically and said, “Well, I don’t really know because I don’t get headaches.” In which I yelled to him, “Well! You’ve never been pregnant neither, so are you going to tell me that’s not real neither!!!” Frustration of not knowing what’s wrong with you can be and is devastating. Unsupportive friends, family and others tell you that you are high strung and a pill popper. That hurts as bad as the pain your feeling that no one believes you about.
For me, it took a bad fall about 7 years ago before ANYONE would take me seriously. I had fallen off a huge bolder down onto my face and my body had been whiplashed over me. Now the pain was extreme and my arms and hands became like they had searing pain in them. One hand would be ice cold while the other burning hot. Pain in my neck and upper back made me cry in pain. I couldn’t tolerate the pain and be brave any longer. FINALLY! The doctor was sending me to a neurosurgeon! He did x-rays, MRI scan, or lab tests and had me checked out with a PT and guess what? Next thing I know he is sending me for major surgery to have 3 of my discs in my neck removed and have a fusion and discsectomy done. The doctor told me that within 6 months I would heal except for a slight pain in the neck on occasion. It was worth the risk of surgery because I knew I had nothing left to lose. I couldn’t bare the pain any longer. Still after a year longer the pain was still only getting more and more severe. It was now in my upper and lower body. I could barely stay awake I was feeling so weak and exhausted. The medical expenses were draining my husbands pay cheques and I could feel the strain on my marriage. Not that he complained much, but because I knew that what he paid in medical expenses could have bought me a beautiful casket and he’d never have to keep on paying for me. Stress, frustration and pain along with the total exhaustion reap havoc with your mind. My brain wasn’t functioning properly and I was losing common household names such as the couch or a friend’s name. It was humiliating and you try to hide it with humor, but the fact remains, you feel like you're losing your mind. Eventually I broke into tears in front of my doctor and questioned him why I was getting worse and not better. He looked at me rather oddly and said, 'The surgery was a success. It’s the fibromyalgia that’s giving you the trouble.' No one had told me anything about fibromyalgia before that. I asked him to tell me exactly WHAT was wrong with me! He said I had fibromyalgia and polymyalgia rhematica. After all these years of frustration, humiliation, belittlement by misunderstanding people as well as myself , I received an answer. At first I was happy! Happy to find out that I really wasn’t crazy! Happy to find out that the ‘something’ wrong actually had a name! The continuing pain and fatigue soon faded that joy away. My doctor said that there was nothing he could do for me about the FMS except to try to make me more comfortable. We have tried all sorts of combinations of medications for years until we try get it right. At least for awhile. I'm sure my medications need to be changed again but I’m frightened to change them again and feeling like a humane guinea pig. I can’t have the life I once had and I’ve finally given up trying to be that person. I needed to change my whole life style and this dd doesn’t come with a manual. The only way to help you through this is through educating yourself about it. CNP may think your dwelling on the problem, but you're not. You are trying to understand and push forward with your life. How can you expect others to understand if you yourself don’t know? At the same time you NEED support by people that understand what you are going through. I was fortunate that I found this on the net with the help many on the Fibromyalgia news group, my close friend Linda and of course my Renegade sisters. That gave me the courage to find a Fibromyalgia Support Group in my city. No longer was I alone! No longer was I misunderstood...and no longer was I thinking I was crazy. My weariness became worse and worse though. Exhaustion was taking me over as if a wave had hit me. I couldn’t tell day from night, nor today from yesterday. Sometimes these days of exhaustion and extreme weakness continued on for weeks or months. You haven’t barely got enough energy to go from a chair to a bed, let alone attempting to try to clean and take care of the house. Things needed to be left undone and that plays havoc on you as well. This is when I also learned that I also suffer with Chronic Fatigue Immune Deficiency Syndrome. I found others on the net with this same disease and with talking to them along with finding out more on the net about it, I began researching this also. With this underway, I have been able to teach my family to understand me better. It’s been a long hard road which at first I thought had no end. But I’ve found that if I can help others in their suffering, maybe by getting this out into the public or just offering a shoulder to lean on, then maybe this is worth it. The excitement of knowing that we are fighting to get others to understand, to help us find a cure is a marvelous goal. I’m a fighter not a quitter...and I know we can make a difference, but we need to get our message out. We need to make the public aware that fibromyalgia and Chronic Fatigue are very real conditions which plays devastating results on your body, mind and spirit.
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