chronic pain post lyme patient

[entarage]

hello, i am a 43 year old woman who is in remission of chronic lyme disease, however my pain is getting worse the past year.  i was diagnosed w/ lyme in Feb. 2001, did many courses of abx and even did intravenous abx daily for 9 months back in 2002.  Since then i have been up and down with symptoms of pain and have been in pain management.  I had a year or so that I was stabalized, but the past year has been getting worse for me.  

The pain consists of hand numbness upon waking, a stiff , extremely painful spine which can not bend upon waking, neck, back, arm, torso and leg burning pain.  
My current pain management doctor is not very helpful, keeps his visits w/ me about 7 minutes long, and does not offer any other options other than to give me the pain medication (oxycontin, 40 mg, twice daily).  I go to him because he is the only doc nearby who takes my health insurance.  I don't have many options and I am unable to function w/o the medication.  

My lyme doc has stated that i am in remission of the lyme and that the pain must be coming from my thalamus area, the mid-brain, but he says the inflammation would be too microscopic to see on an MRI of the brain, which i just had(normal).  The main problem is that now i have no diagnosis.  I went to see another neurologist, the one who gave me the MRI of my brain, along w/ some other tests, and ruled out Lupus, MS and rheumatoid arthritis.  He said that whatever is wrong w/ me is "out of his realm of knowledge".  

Some people bring up fibromyalgia as a possiblility, but I never really believed that as a diagnosis.  What is the cause? That is my question? If i only knew what was causing this.  My blood work doesn't show anything weird, yet I can barely get out of bed in the morning.
Does anyone have any similar experience?

Thanks for reading this.
Tara

[Ricobord]

Definitely find an LLMD to get checked out.  Lyme does not go away by itself, and while it has been known to go into hiding with periods of relative wellness, it's still there and can reemerge any time until treated.  Antibiotics are much better than chronic pain!

[mojogal]

I am currently in a state where NOBODY believes in Lyme and they tell you things like, Lyme is just what they tell you when they dont know what you have and you dont want that label. I am moving to FL where there are LLMD's but I found groups on Yahoo and Facebook for support groups for the state I am in now and one for the state I will be in so you may want to try there. It is very hard, we have all been through it feel free to write us for support, I have been too ill to be on much but Jackie and others are always around.

[JackieCalifornia]

Sorry, I don't.  Just digging around on the internet would be my way to look for someplace like that.  Or you could post a new message on this site and ask the same question -- this chain you've posted on is four years old, and the title is 'chronic pain post lyme patient', which would not necessarily cause people to read all the way to the bottom and find a post about looking for a support group.

You might try a new thread and call it 'Lyme suppport group in Dallas TX?' or wherever you are, or 'Lyme support group online?'

Hang in there, we all have bad stretches, but it gets better.  You gotta trust me on this one, but definitely get some support.  That's a good thing to do.

[boatgettingtoosmallforusall348]

Do you know of any chat room or support group on line or does anyone?  I've been esp very very down lately and need a little support right now.

[JackieCalifornia]

I know what you mean about the loneliness of Lyme.  It happens to all of us in one way or another.

For some, it's the inability to participate fully in family life; for others, it's work that falls apart.

Lately, now that I am my old self, I have been trying to reconnect with old friends who haven't heard from me for about 5 years.  It's awkward, trying to figure out whether to tell them I've been sick or not, and I'm pretty much not telling. People who haven't encountered Lyme just don't understand, so it's meaningless to them.  It's like someone telling you they were kidnapped by Martians and held captive for a few years -- not only would you not understand, you'd think (quite reasonably) that they were nuts!

You're among friends here, so know that you are not alone, and there are docs who understand too.

[boatgettingtoosmallforusall348]

What's amazing is when I went to my old orthopedist just yesterday and told him that I had read, only after he had given me two rounds of steroid treatments for the pain, that he should not have given them to me because of the chronic lyme.  He asked where did I hear that, that he had never heard of anything like that . I told him that it's in almost every reference to lyme I've read on the internet. In fact, as I read more and more about it, it looks like the one thing that most drs. do agree on.

To me, the worse part of it all after all these yrs is the loneliness of it all.  No one "getting it" so you just stop talking about it.  Start becoming a recluse when the pain is at its worse so no one sees you and you don't bother your family with it.