Thursday, April 21, 2011

So tired, so fed up, I need a miracle

I am so down in the dumps today, the pain caused by typing pretty much made me give up on this new blog before it even began. After living in pain since mid January, here I am three months later with no apparently change in symptoms and I'm no further ahead with really knowing what is wrong with me. I've been told I have hypermobility syndrome by a physiatrist. In his report it also mentioned thoracic outlet syndrome. I've tried his exercises for weeks with no success. I've been given a new exercise program from a massage therapist who specializes in postural restoration. She thinks improving my posture will help. I saw a psychiatrist who prescribed me Cymbalta which i thought might be helping a bit with the pain management but even after increasing the dose from 30 mg to 60 mg this week, I feel really wierd in the head and the pain has not changed. I am constantly in pain. My shoulder aches, my neck feels unstable, my wrists burn. I just want to curl up in bed and cry. I have an appointment for an echocardiogram in May and I know the doctor will say why are you here? Well honestly I don't know. I get told I have HMS, I read that HMS is a type of EDS and if that is what I do have it is wise to rule out heart issues and vascular EDS. My gums are receding, I've found that this runs in my family, I see my dentist today for a cleaning and I'm not sure who I go about asking him if he has ever heard of EDS and if any extra precautions can be taken to slow down this receding that they've been harping about for years. I believe I have a connective tissue disorder after reading Dr. Tinkle's book on Hypermobility Syndrome but how do I convince the doctors that this is true? In February my optometrist told me my retinas were detaching which lo and behold is another symptom of a connective tissue disorder. I've obviously damaged my tendons and ligaments in my shoulder/arm/wrist since I am constantly in pain. My whole life has changed since this happened. I am unemployed, I feel like the world's biggest freaking loser, sitting at home, hurting, but getting through the exercises that are supposed to help, not knowing what to tell my employer, not knowing what the future holds for me. Will I be an unemployed loser forever? I pray this is not the case but how am I supposed to work when I am in pain and crying throughout the day? God's supposed to not give us more than we can handle but He's given me too much. I hate my family seeing me like this. I lay on the floor with my ice packs, I have pretty much stopped doing everything I used to enjoy. I feel like I'm abandoning my friends but I have no energy to do the things I used to do with my friends. I worry about our future financially and the stress that this puts on my husband because I can't seem to make my body heal properly! We can't survive on his income alone and yet the idea of going through the process of applying for a disability benefit seems daunting and final plus I would think I'd have to have a doctor on board to back me up with a proper diagnosis. I pray that someone will eventually send me to a neurologist, what I am going through is not normal and so far I've had the psychiatrist tell me that this is chronic neuropathy and I will have to deal with this for the rest of my life. I don't see how I can go on living like this. My joints constantly hurt and click and the medication doesn't seem to help matters any. I don't want to die but I don't want to live either, this is not a quality of life for anyone.

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