posted
I'm having a hard time wrapping my head around all of this. I know its major and its taking over my life but I still cant come to terms with it. When I read what people are writing I get angry. I was misdiagnosed with first shingles, then limes .., then the western blot came back negative and so I went on to see more doctors and they came up with MS.
I went on thinking I had MS for almost 3 years. When I started re-evaluating my symptoms I realized I either had 5 or more different illnesses or slowly started to believe I was just a weak pathetic excuse of a person that was always thinking everything was wrong.
Finally about 2 months ago I started talking to my new primary who actually listened to and believed me and when I had my blood work done again I came back positve for Lymes. I guess the steriods I took for the shingles I didnt have before I took my blood test 3 years ago messed up the western blot results. So now what should of been cured and probably could of been cured then I will more then likely be stuck with for God only knows how long. I know I should be happy that I dont have MS but I'm not. I'm tired and frusterated. And even worse. When I read other people talking about the downward spiral there life took due to this disease I get mad at them. I know. Sounds crazy but I am.
I'm in denial and I know I am because I keep thinking I can do things I can't and every time I try to start something again like a full time job for example when I'm on an "up swing", or on the lower end of things like struggling to walk out of my house and up the stairs I realize how screwed I am, like its starting all over again. I'm still surprised about just how little I can commit to and accomplish. 3 years ago I worked 60+ hr work weeks, was at all my sons games and extra activities plus I had a full spectrum of friends and a great social life. Now everything I start I can never seem to finish or even worse I cant remember what I started. I feel like I'm going crazy. My son asks for a snack and I feel like he just asked me to paint his room on some days.
I'm exhausted but I cant sleep well because when ever I try to roll over when I'm sleeping I wake up from intense pains in my back, shoulders, rib cage and bent knees. Trying to bend my fingers even to adjust my pillow ruins the whole expierience. I want to have one more child but I have to wait until this gets resolved..., and by the way when will that be exactly because after reading the myjority of these posts it seems like "never" ? Well thats just not good enough... I'm really mad.
I always read about people taking antibiotics but what does everyone get to treat there symptoms in the mean time. Theres so friggin many of them, where is the magic pill to atleast offer some relief from the exhaustion and pain. People with FM get Lyrica and so on. Well what do we get ??? Anything??? How do you manage this disease until its under control ?? Please please tell me there is something out there. A good nights sleep, the pain some what tolerable and a little energy I would do just about anything for. And please.., some one out there tell me this thing gets better. I'm 33 and I really dont want this to be something I "just have to get used to" . I want my life back.
[ 11-06-2010, 11:50 AM: Message edited by: coley77 ]
Posts: 20 | From harwich ma 02645 | Registered: Oct 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
It's really hard for some Lyme patients (including myself) to read HUGE paragraphs. You will get more responses if you break them into like 3-5 sentence paragraphs. I would do it for you but I can't read all that.
posted
You are lucky you are in an area where there are actually LLMD's... Lyme Literate MD's... Please post here to get a list of names of drs near you:
There are plenty of things to help with symptoms. You can take Lyrica if you want to.. or there's Cymbalta, Ambien, whatever. Just find a good dr and get on treatment NOW!!!
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