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Posted 12/29/2008 12:45 AM (GMT -6)
Hi...

I am in my 5th week of treatment for Lymes Disease. The pain is so bad in my shoulder, back and the right side of my neck. There are some days I can't use my arm or turn my head. In the past week and half I have lost feeling in the right side of my neck,face and shoulder. I go into the hospital next week for Yet MORE testing for the Disease. I have read some of the messages here and am grateful that I have found this site because I have noticed we suffer from similar problems. The disease is not only effecting me but is now effecting my family. There are some days I can't even get out of bed.

How long will this last? Can I find a way to manager the chronic pain I am in?

  cry ~gamwce

Posted 12/29/2008 8:20 AM (GMT -6)
I am so sorrry to hear you are in so much pain, what meds are you on? did you doctor prescribe any pain meds, what testing are you going in for?

Posted 12/29/2008 10:30 AM (GMT -6)
Hi...

I am going in for another EMG test because I have lost the feeling up the right side of my neck and the right side of my face.

my lip and chin look like they are starting to sag. I will also be getting a CT scan and a corroded artery test the same day because my nose has been bleeding 1-3 times a day.

I'm taking Doxycycl for the infection, so many for the inflammation and the pain.

Diclofen-Pain and inflammation

Ultram

Indocin

Vicodin

Synthoid

Looks like I have had this longer then a few months/years. Just wasn't seeing the right doctor for it even had the rash 4 years ago that led me to a infectious disease doctor. Treated me for Graves Disease witch I do really have just the Lyme's Disease Kept getting over looked because of the Graves. The pain an inflammation started getting worse back in July 2008. Started in my left Knee the inflammation was so back i was in PT for ultrasound to bring down the swelling in the Joint. Then went to my hip same pain same type of inflammation now for the past 4 months it has been sitting in my right shoulder right arm right side of my neck and my face. The pain is crippling some days. I'm trying so hard not to get depressed but they are so many symptoms I'm sure you are aware of that I suffer every day. I'm afraid I'm going to loose my job because I can't do the task that are required of e anymore.

My Boyfriend gave me the idea to look for some kind of site to see if anyone if suffering like me just to have someone to talk to.

I am so tired of being sick, in Pain and no energy at all what so ever

~gamwce

 

Posted 12/30/2008 10:07 AM (GMT -6)

hello gamwce,

I am sorry to hear that you are so sick.  My advice is to continue to pursue lyme with everything you've got.  I know nothing about Graves, but I know lyme will mess you up.  You have to dig deep, find the will, and battle it.  Find an advocate (your boyfriend).  Force yourself up and out of bed and out of the house.  Exercise.  Take your medicine.  Find a good diet/eating plan.  Don't give up. 

chief

Posted 12/30/2008 8:43 PM (GMT -6)
I have just about lost total use of my right arm. The pain is more then I can bear. I have been through a lot of pain in my life and this doesn't compare to any pain I have ever felt. I call my doctor just about every day with a new complaint or ailment. Is Losing my thought processes and can't seem to remember things like I use to. I do one task and need to rest.

Is this how it is for all or most of you guys? How long will this last? I have been told that because of my Graves disease it kept being misdiagnosed for years. It seems like its getting worse and worse.

 

Posted 12/30/2008 9:03 PM (GMT -6)
I hope the hospital can get you on treatment immediately. You may need PICC line as it sounds like Bell's Palsy. I think that's treated more aggressively with an IV of antibiotic Rosephin. Just wondering also what kind of doctor are you seeing...I'm not a doctor so all of this is conjecture at this point but hope your diagnosis and treatment begins quick and recovery begins sooner rather than later.

We feel your pain!

Be well.
Posted 12/30/2008 10:14 PM (GMT -6)
I agree something else has to be done. we have started looking for a new specialist and a friend gave us a name and number for one In Howard county Maryland that we are going to call this week. I feel as if I am dying of something really bad at certain points of the day. Night time is the worse. Not having anything feeling in my face and my neck and no use of my arm is starting to discourage and depress me.
Posted 1/2/2009 6:46 PM (GMT -6)
Fell a little better today. I can pick my arm up a little and grab things with my right hand. Some of the chronic pain has let up a little in my neck and shoulder. I see My specialist on Monday again and go in the hospital on Tuesday. I'm trying so hard to take this one day at a time. Not having use of my arm is bothering me a little though.

~gamwce

Posted 1/6/2009 3:55 PM (GMT -6)

I was put in the hospital for chronic pain on Sunday. Ran even more test to include a spinal tap. I do Have lymes in my spine. I was started on the Rosephin on Sunday and a picc line was put in today. I am trying to just hang in there and have faith that semething is going to start working.

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