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Originally posted by jblral:
my 14 year old daughter with lyme is in terrible pain all the time. We've tried a bunch of different pain killers, and nothing helps. Some of the things we've tried dope her up a lot--but they still don't relieve the pain. didn't try Avinza, but fentanyl sure didn't help.

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jblral, my son was 14 when he came down with lyme/babs. He had total body, unremitting, horrible pain 24/7 with migraines thrown in for good measure.

We did fentanyl patches and tramadol. The best it would ever do is take the edge off. We actually hospitalized him on occasion just for pain. The best remedy we found were hot baths in epsom salts, long soaks. Some drink warm water in the bath to sweat or fresh squeezed lemon to help. Keep trying different meds, you may get lucky.

I correspond frequently with a mother who has a 15 year old daughter in the same boat your child is in. If you think your daughter would like to communicate with her send me a PM and I'll forward on her e-mail.
 

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Posted by Aniek (Member # 5374) on :
 
If you are not currently, I highly recommend working with a pain specialist to control pain. There are many ways to control pain besides pain killers.

There isn't anything wrong with pain killers. I take Vicodin. But, I take a much lower dose because of a number of other parts of my pain treatment regimen.

I worked with a pain specialist for over a year. He did not believe I had Lyme, but he still helped me find the correct pain management plan for me. Like it's important to be treated for Lyme by somebody who really knows Lyme, I think it's important to treat the pain by somebody who really knows pain. Even if you have to bite your tongue when they tell you that you don't have Lyme.

Most of my pain is muscle and tendon pain. What I thought was joint pain was often referred pain from tight muscles. So what worked for me is:

Flexeril, a muscle relaxer, I was up to 30mg a night for over a year, am now down to 10 mg. This works best when taken every day, rather than as needed because it impacts the neurological system. Taking it every day also helps you get used to the drowsiness it causes.

Physical therapy helped for me after I started taking the Flexeril. I had myofascial trigger point rlease and, once the muscles were relaxed enough, I moved on to strengthening.

Yoga. It took a while for me to be able to do yoga. At first it hurt really, really bad for days afterwards. But I now I feel worse if I don't do yoga. I still need to be careful not to over push.

Vicodin. I use vicodin for the break through pain I still get. Lately, I've needed it every day.

Plaquenil also reduces pain and stiffness in my hands. This was not prescribed by my pain specialist, but by my LLMD.

Magnesium helps reduce muscle stiffness. I saw an integrative medicine specialist today who gave me a new kind to take, it's called Natural Calm and is a magnesium citrate.

I'm sharing this not because it will work for you, but to share how much needs to be involved in the pain treatment. The Flexeril changed my life. The physical therapy and the yoga helped me maintain the improvements I made.

Also, needing to increase pain meds is nothing like being a drug addict. Physical dependancy causes the body to require a higher dosage for the same effect. It is because your body gets used to the medication. Addiction is very different. Addiction is a need for medication for reasons other than the pain relief.
 

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Posted by lymefighter7 (Member # 9224) on :
 
I have had lyme for at least 21 years and have been in horrible horrible pain daily. I can't find anyone to help with pain. I have been to everyone. I have even asked my LLMD to help. He's not a big one on pain meds though I don't think. What do you do to get relief if no one seems to help? The doctors should know that it is better for youto take the meds and let your body have some relief than to worry about addiction at this point.
 

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Posted by Aniek (Member # 5374) on :
 
Lymefighter7:

Here is a link to help you find doctors specializing in pain treatment:
http://www.painfoundation.org/page.asp?file=Links/FindDoctor.htm

You can also call American Pain Foundation and see if they have lists of pain support groups.

My personal belief is to go to a pain specialist to treat the pain symptoms, even if that specialist does not believe you have Lyme, or the Lyme can be cured. A good pain specialist can still help you control the pain.

My advice if the doctor raises a stink about the Lyme issue is to say that you have studied issues surrounding diagnosis and treatment of Lyme and you have chosen to take a specific path and right now just need help controlling the pain.
 

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Posted by lucy96734 (Member # 8372) on :
 
Prior to knowing I had Lyme I had been seeing a pain management MD and going down the list of meds from Ultram w/ flexril (sp) with NSAIDs and ended up with fentyl lozenges (Actiq) to percocet and hydrocodone. It is amazing how much you can take and not feel it when you are in so much pain.

Now that I am treating the cause of my pain I take an occasional over the counter NSAID or 1/2 a hydrocodone and am off all the other stuff I never thought I would be able to. I feel like I am getting my life back.
 

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Posted by Nebula2005 (Member # 8244) on :
 
Pain.

To get to sleep last night I took hydrocodone and Valium. I only have 1/2 a Valium left, and I can't go back to the doctor who prescibed it.

The level of my pain is just that: to get to sleep, I had to take HYDROCODONE AND VALIUM.

This is not normal.

My Lyme doctor told me to take Benadryl. For the life of me, I can't find anything written that says herxing is caused by histamine.

And, not only does it hurt, but my ears are so sensitive they jump when the the AC kicks on, or the cat scratches, or from any little noise--then the spasms wake me up. They move against the pillow, causing noise.

I guess I'm going to have to try a pain specialist. I dread telling him/her I have Lyme.

But--I have to treat the pain, because I'm about worn down.
 

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Posted by Andie333 (Member # 7370) on :
 
I take tramadol, but there are different types of it, I found out.

One makes me feel completely drugged and awful; the other I only take a few times a week, when the pain gets bad. Lately, I've been cutting back and only taking ibuprofen.

Acupuncture has helped my pain a lot, as have some of the Chinese herbs the acupuncturist has given me.

Hope this helps!

Andie
 

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Posted by karatelady (Member # 7854) on :
 
Hi KG,

I use to have to take more of my hydrocodone in the afternoon. If I'm herxing I feel the same way - swallowing them left and right. If I feel better - I don't even think about it which makes me think I'm not addicted to them.

A good friend of ours has 2 grown daughters who were very ill with lots of issue where they were in constant pain. They were taking very strong meds. Once the pain eased up, they slowly started taking less of the pain meds and never went through withdrawals.

I think when you're in as much pain as you are, the meds go to the pain -- its not like you're a healthy person taking pain meds to get high.
I think our pain keeps us from "enjoying" any kind of real high from the drugs. It just makes us feel a little relief from the constant pain.

Sandy
 

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Posted by Catsmeow (Member # 9485) on :
 

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Originally posted by Kentucky Girl:
Thanks for your replies. I guess no-one else takes pain meds.

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Originally posted by lucy96734:
Prior to knowing I had Lyme I had been seeing a pain management MD and going down the list of meds from Ultram w/ flexril (sp) with NSAIDs and ended up with fentyl lozenges (Actiq) to percocet and hydrocodone. It is amazing how much you can take and not feel it when you are in so much pain.

Now that I am treating the cause of my pain I take an occasional over the counter NSAID or 1/2 a hydrocodone and am off all the other stuff I never thought I would be able to. I feel like I am getting my life back.

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Lucy, you rock! You give me hope. My dream is to get off of pain meds eventually. I feel so guilty for taking them but cannot stop...or the pain is too much.

I am hoping to get cured from this disease and then be able to get off of the drugs.. Your post just gave me hope. Thanks... Cats
 

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Posted by minimonkey (Member # 8693) on :
 
Cats --

Here's some more hope for you! I had used Vicodin for YEARS to combat the pain (whenever I could get it, which was not all that often...) And during the first stages of treatment, I needed Vicodin, a muscle relaxant, cymbalta, AND a lidocaine patch sometimes! Oh, and Lyrica and migraine meds, too.

Now -- I have days where I don't take any pain meds at all, and days where I need very little.

I've never shown any signs of addiction or withdrawal -- when I'm not hurting much, Vicodin is the last thing on my mind. I love the days when I don't need to take anything -- and they are becoming more and more frequent.

I think the big turning point for me was when we started treating for babs - I tested negative for it, but clinically it really seemed likely that I had it -- and indeed, the treatment has worked wonders.
 

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Posted by JimBoB (Member # 8454) on :
 
WOW, I sure feel sorry for all of you that are in THAT much pain.

Yesterday, I was working on only 3 hours sleep and had to set up for an art show which my wife did for me, and the three hours doing that made me about scream. Then I came back here and and after two easy hours it turned into a zoo as I was selling old cars out of my yard here. I went for another 6 hours straight, and could hardly walk near the end. Then I had to go back down to the art show and load the van with all the art show stuff and drive back here.

Let me tell you it was misery. I took TWO ibuprofin at bedtime. I do have some stronger stuff here, but do not take it at all IF I can help it.

I got addicted to the morphine type drugs back in 94 and was wanting it just to feel good, even without all that much pain. It is sometimes tougher to get off the meds than the pain itself.

I have had plenty of broken bones, surgeries, etc., and had to take pain medicine then, but got off it as soon as I could so I wouldn't get so addicted.

I prefer my head to be as clear as I can have it. I guess I have sort of gotten used to pain in every step through my life. THough it is not fun, to be sure.

I don't think I would take pain medicine for herxes though. IF the herxes are that bad, something is really wrong. Maybe use LESS abx and more herbs and be sure to use plenty of Red Root tincture to keep those herxes down.

I have upped my herbs this past week, and dropped some of those that weren't doing me much good, if any at all. I am feeling pretty decent today.

JMHO
Jim
 

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Posted by BugBit (Member # 7829) on :
 
After decades of suffering, and as many years of listening to the propaganda against pain medications due to the risks of addiction, I finally went to a pain specialist and I am using these medications for about 8 mos.

In the beginning, I would get really wasted feeling and I wouldn't drive or anything, but after a while your body adjusts and no longer do I get feeling wobbly, but I still have some pain.
I don't think any medication can get rid of ALL the pain but I am able to have a sort of life now, where before I could not.

I am not afraid of addiction. I have figured out the difference between addiction and dependance for myself.
My life is dramatically improved with these medications. For years, I was a curled-up ball of pain and misery.

I am taking methadose, LorTab and Valium.

I have learned that my depresion is often related to my Lyme cycles. Right now, Lyme is active and I am depressed.
When I take the antibiotics, I feel better and the depresion lifts. On the other hand, I am in a situation that is depresing and to be depressed is a "normal" response.

My Dr handed me Cymbalta for the depression and now I am trying to decide if I want to medicate the depression which is really a normal response to a miserable living situation.

What do you all think of antidepressants when the patient has neuro-Lyme, late stage neuroborreliosis?

Cheers,
*BugBit*
 

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Posted by Catsmeow (Member # 9485) on :
 
My pain is so severe, the pain specialist has me on the Fentanyl patch and vicodin for breakthrough pain.

My goal is to have only the patch and eventually not even take the vicodin.

The pain is really severe. It's systemic...in my bones, my tissue, and in my joints. It's sorta like cancer...you feel utterly weak and just suffering.

I think when you're in "late stage" of the disease process and you've been sick for so many years but not been properly diagnosed, this disease just destroys you.

The pain becomes overwhelming. I don't feel guilty about medication. Frankly, I no longer care about addiction factors ...only that I'm in too much pain to go on without the pain medication.

It's hard for me to survive each day WITH the medication but I have to function at some level because my husband is extremely ill and needs constant care.

So, it's the sick taking care of the sick...I have to take care of (feed and dress) my husband. I'm at a point where pain meds help me do what I HAVE to do to survive.
 

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