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epstein barr virus


Message 2 of 2 Previous

You are not alone. I do not suffer from the same disorder you do but I can relate to your feelings. I have an extremely severe case of chronic tinnitus (ringing of the middle ear) I have had it for 6 yrs. I have not slept for that long. I have suffered grouling medical testing but over 60 % of people with tinnitus have no underlying disease able to cure. Sometimes I almost wish I would be diagnosed with a disease just so I would know why I have to live like this. Like fibromyaglia, tinnitus is not a disorder someone can see. Im not in a wheel chair, I'm not missing any arms or legs but I am just as sick as they are. I have done so much to try to overcome and accept my disability but it is very hard. I see a behavioral therapist and she has helped me alot in accepting that I have a disability and tries to keep me on track as far as nutrition and rest. But like you I dont even want to get out of bed. I have many strained relationships and am very addicted to sleep meds and anxiety meds. The most ironic thing about all this is my only hope is Tinnitus Retraining Therapy which is basically a hearing aid that submits tones into your ears to retrain your brain to tune out the ringing. It has an 85 % success rate but medi-cal or private insurance doesnt cover it. And for a poor person like me 6000 is a 1/2 yrs pay. One thing my doctors have done for me is encourge my recovery. I had an idea to go back to school. I am 40 too and that was a scary thought. But I chose to become a massage therapist and am now taking an 8 month course. What a world of good it has done for me. I am now social, these people understand chronic pain, stress ect. We are tought so much about our bodies and how to identify stress. Relaxation is the main focus and everyday I get massaged. My teacher has fibromyalgia too and I will ask her what techniques have worked for her to relay that back to you. I do know massage therapy, proper nutrition, rest all combined & monitored would be a great relief to you. But you have to make sure the therapist knows about fibromyalgia because you are more sensative to touch and dont need someone who's gonna beat you up. But if you get the right therapist slowly you will graduate to a deeper massage. And guess what, you will probably cry. Massage releases endorphines and it just comes naturally but a good therapist knows that. Dont be ashamed about rambling. You have every right too, you are in pain and no one else knows what you feel like and should not judge you until they walk in your shoes. My boyfriend understands cuz he lives with me, he knows what I go through. But the rest of my family only sees the bad and dont fully understand how much sleep deprevation affects you. Finally now my son can relate because he is in the Navy and they purposely make you go through sleep deprevation and he is exposed to loud noises all the time but the Navy is very cautios and always makes sure they have the proper gear to protect their ears, but now the poor guy is scared to death that he may inherit tinnitus too. I have been angry alot because people I love dont understand. I am really thinking about purchasing a video that helps explain to family and friends what I am going through. And I experience the same thing you do about rambling, I am so tired of telling my story, I'm so tired of going to the doctor and I wonder once I cross over will the ringing go away? Its good to know that their are other people like you I can relate to that may not experience what I have but can empathize. Thank you for your time!!! Good luck and I will find out all I can about fibromyalgia and massage therapy. Your Friend JT


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