Lyme Pain Mangement

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All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 1/6/2011 12:08 PM (GMT -6)   
I posted this over on the lyme board but I figured I would get a wider variety of responses here.

I've been treating lyme disease for a little over a year now and I am now dealing with pain on an almost daily basis.

i get very bad headaches and lymph node pain in my neck and i am prescribed vicoprofen as needed. my neck often feels very uncomfortable and I have alot of muscle tension. the thing is, i don't get any refills so i'm scared to take it. if i take it a couple times a week I will start to get dependent on it and i pretty much need it every day. he also prescribes me ibuprofen 400mg as needed but he also says i shouldn't be taking that every day.

the pain is not unbearable but its bad to the point where i've lost pretty much all desire to go to school and hang out with my friends. i pretty much just do nothing all the time because im not feeling good enough. i feel like i need a mainentance dose of a time-release painkiller as I can't stand only feeling okay when i take my vicoprofen once a week. i need something else.

any advice?

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 1/6/2011 9:29 PM (GMT -6)   
Are you being treated through the school's doctor? If you are I would suggest finding and seeing a doctor within the community. If you are already seeing a doctor in the community then I strongly suggest you go see him/her and be open and honest about your concerns. If you feel that your concerns are not being met then ask for a referral to a doctor that has specialized knowledge about Lyme Disease and/or a pain management specialist that does more than injections.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/7/2011 12:06 AM (GMT -6)   
Hi dcraver,

I have Lyme, plus a lot of coinfections, six autoimmune diseases and fibromyalgia, so I'm dealing with severe pain in many areas: joints, muscles, rib cage, lower back, upper back, neck, migraines, you name it.

about a year ago my pain issues came to a head when I was hospitalized with an attack of excruciating pain in the right upper quadrant of my abdomen (liver/gallbladder area). Well, my gallbladder was removed more than a decade ago, but I do have autoimmune hepatitis with Stage II liver damage, so they ultimately decided it had something to do with my liver, although they never did figure it all out.

The only pain med that touched it in the hospital was morphine but even that didn't do enough. I ended up on fentanyl patches. Those definitely helped more than anything I'd ever taken! I would still be using them except for the fact that they suppressed my breathing too much (I'm fond of breathing). So now I'm on Dilaudid, which isn't as effective for me but is pretty good.

But the problem is that I'm only sharing my own experiences....Jim and RetiredMom are right in saying that only a doctor can help you figure out what type of pain meds YOU need. An LLMD may not be able to do that. You probably need to see a pain management specialist and explain all of your pain issues and the history of the meds that you've tried, etc., so that they can help you find something that really works. A lot of people here are using time-release meds with an additional pain med for "breakthrough" pain.

Good luck to you....please keep us posted!
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 1/8/2011 11:58 AM (GMT -6)   
I am not seeing my school doctor. In fact, the one time I did, she was by far the most unknowledable, uneducated, misinformed doctor I have ever talked to in my life. I am seeing a LLMD right now but I am in pain every day. Usually the biggest issues are my headaches, neck pain, and overall body malaise. It's almost like I don't know its their until I try and do something because I am so used to feeling like this all the time. I have just lost all motivation to do anything I used to because what's the point when I will be miserable while I'm trying to enjoy an activity?

All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 1/11/2011 1:25 PM (GMT -6)   
bump. Is there any time-release form of vicoprofen? when i take it only provides relief for about two hours max and then the pain gets worse when it wears off. There's gotta be something better than this.

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 1/11/2011 7:20 PM (GMT -6)   
I really feel for you. You must be miserable. I think you need to talk to your primary care doctor and ask for a referal to a pain specialist. Keeping a pain journal might be very helpful for your doctor to see. You cannot go on like this. I take pain meds every day on a regular basis or I could not function. I am not happy about having to take the meds, but I am making peace with it, and feeling grateful there is medication available that lets me live my life. If not for these meds, I would curl up in a blanket and stay in bed every day. I certainly help you find some relief soon.
Fibromyalgia, Inflammatory Arthritis, Osteoarthritis, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 1/12/2011 12:47 PM (GMT -6)   
thanks for the reply. i wish i could just get some temporary relief for even just 3 days out of 7 in a week. I need to feel okay sometimes so I can have some resembalance of a normal social life. Without it, I am so much more miserable! I crave social interaction!

I have an appt this afternoon. I was crying the last week straight for at least a half an hour each day. I just don't have the motivation to fight through the pain anymore. I am praying to get some relief but if I don't I guess I will try and find some natural alternatives. I gotta do what I gotta do or else I'm going to be thinkign about death every day and that is no good.

mentalcompass
Regular Member


Date Joined Jan 2011
Total Posts : 127
   Posted 1/12/2011 2:32 PM (GMT -6)   
i've been taking xanax for my neuro pain. It did wonders but it's a double-edged sword. nothing cut my pain like that, it worked right away. be very careful if you try that, very careful, please. the vicodin i have doesn't so crap for nerve pain, nada, but the xanax worked. i am starting neurotin tonight, i was told i needed to take it for four weeks to get a stable blood level and some relief, maybe that's a good start, better than the xanax.

All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 1/13/2011 9:25 AM (GMT -6)   
i finally got him to address the issue. We came to the conclusion that the ibuprofen in vicoprofen (even at a low dose of 200mg) was giving me pains in my digestive tract. he recommended oxycodone 15mg. I guess I will take it when I really need it. He says if its still not effective, I can take aspirin with it.
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