char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Humanbeing,
Hate to hear that you are in so much pain!
Are you on abx these days?
We have used tylenol with codeine for my daughter's back pain. Seems to help, but we have to dose on time or we lose ground. Clonopin seems to take a bit of the edge off.
The other 2 lymies here take ibuprophen (highest dose)on the clock and go through giant bottles of it. I do get you are way beyond that...
Can you get your LLMD to help? Maybe tell them what you told us. How can you rest and get better if you are all racked up with pain? Are you herxing to hard maybe?
I'm really not much help...sure others will come along with some good input.
Pain management has been a serious part of my treatment regimen.
For my two cents worth, just my opinion, I don't think we should strive to be "normal". Just function better when needed. I surrender to the factthat I will not be normal while undergoing treatment. I am SEVERELY ill, as many of us are, so I honor that and take it easy and try to make myself as comfortable as possible. Many times a day I check into my body and mind and say, What is needed now? Bath? Walk? Rest? Painkiller? Anxtianxiety? Healthy food? A talk with a friend? Meditation? Lisening to music?
I pushed through the fatigue, sustained by pain meds and provigil when working. I could not have worked without it. But then came the crash, with more neurocognitive symptoms. So it's been a year, I can't believe it, disabled, in bed mostly, taking courses of abx and treating symptoms in moderation.
I went so far down in December because I did not anticipate the severity of the herx, and the accompanying atypical depression and panic attacks. So after recovering from that episode, I promised I would not put myself through that again.
We have enough to worry about with the Lyme itself. The fact that abx tx itselff makes it worse for many of us is a double whammy.
A lot of pain management techniques recommend relaxing into the pain because resisting it makes it worse. I have experienced this. However, for me, this only works when the pain does not become overwhelmingl. I have to keep it somewhat under contrl so I can work with it mentally, spiritually.
Thats my two cents worth.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The type of pain relief depends on the type of pain you are having.
Are you working with a pain specialist? Pain specialists can be helpful to find the right pain regiment, you just have to accept the fact that most won't believe you have Lyme. But you can still get good pain management from them.
I manage pain primarily through Flexeril (every night) and Vicodin (as needed). My pain is mostly muscle and tendon pain. I do have some nerve pain, but it seems to be caused from tight muscles in another area.
A critical part to managing my pain was working with a physical therapist who did myofascial release. This didn't help until I started the Flexeril, but was vital to my muscles relaxing and my body relearning how to use those muscles.
I do yoga regularly, and I need to in order to maintain pain control. My pain was at its worst when I stopped using specific muscles. But it took time to get to where I could be active.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
I only took Advil, as needed, to get through a meeting or a long day of work (much of my work is physical in nature). I never filled the Rx for a painkiller in 3+ years for fear of addiction. Yoga was my best resource for managing my pain.
However, I just had surgery and was prescribed Vicodin for the pain. I was amazed at how well it worked, even if for just 4 hours at a time. So, I will take this med ocassionally now for pain. It's not great for the liver but sure helps.
Try yoga or simple stretching daily to also help.
Just an FYI: I was on morphine injections about 2 years ago for 5 days. I felt like a zombi, could not function and wanted to barf all the time. Just my experience.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by JeffM: Ultracet is tylenol and tramadol. Tramadol is an opioid analgesic. Although very mild, there can be mild physical dependence upon it.
Physical dependence and addiction are two seperate things. Physical dependence is much easier to kick than addiction, although it might not be a comfortable process. It's a normal reaction to many pain medications.
I was on Ultracet for a while. It worked well, but I had to stop it when I started Flexeril. Together they can cause seizures. I actually find I function better on Vicodin than Ultracet. But we all react differently.
Be patient. It takes time to find the right pain treatment. It also sometimes takes time to adjust to each medication. You may be fatigued the first few weeks, and then be fine. Many people actually have more energy than before once they adjust to pain meds, because the pain is gone.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hi, Being person with med background. I have changed my opinions a lot. Being in pain 24/7myself.
Yrs. I refused afraid of all the addiction garb. That is for users, not those of us who need help just to take care yourself, get through a day, do what you have to for survival.
I feel it is a shame we take care pets better in pain than we do humans. Many feel like little kids asking for lollipop at office.
It is truly crying shame. I won scholarship for Leaders Against Pain, which you may want to look up on website.
They are working to change viewpoint. That is TOTALLY in Humane. Yet, people in chronic pain have to fight for even little help. Like we are not exhausted enough. Being I refused for 10 yrs, crazy... After watching 4 hr. program about pain. How Pain in brain rewires itself for pain, especially worse after long time.
So you do need pain because truly messes with your pain. I sure am a specimen for that.
My meds only cover enough to do things like this, for short times. I was bossiness owner avid sports, etc.
Now the blob(much to do with pain,nausea24/7). Is sad, have to live for my meds so can functions even tad. Does make diff.Even though I been getting no where near what I need.
Went to pain management Duck, he was horrible to me when he saw, Lyme/FM/EBV/even major spinal inj. Just wanted trigger point Inj. Just saline he would not even walk into room. Totally dismissed me. Really gets waaay too much.
My friend after lost count of Dr.s found pain management DR. He put her on methadone, with percodan, for breakthrough. SHe was able to get out wheelchair, her legs suffered so ended up using. Now enjoys grandkids,playing with them,vacation. She is not well, but got some life back. DUH< what does that Say????Hello DOCS...
So hopefull if Leaders against Pain gets more people involved. Doc`s will be fined for abuse, not treating the pain. Instead being afraid to give.
Good Luck, it is tuff to find Doc. who gets it wants to help you, even though it is only band-aid. treatment. Better than other way, days you want to find the highest bridge. Kerry Any in Pain Get involved with LEADERS AGAINST PAIN.... They need all support to get these idiots to treat us humane
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Two ultram + 2 extra strenght tylonal and I have not become addicted.
If you get the ultram and add your own tylonol you get a higher does of ultram than the ultracet and it is less exspensive.
It can make me wired sometimes depending on the day. But I would chose wired than excruciating pain anyday.
Advil trashed my stomach years ago when I took it for my back. Take care...I hope you find something that works.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I agree with what everyone has said. Addiction and dependence are two different things. I took tramadol for over a year, and when I stopped taking it I had some mild diarrhea and discomfort. Nothing as bad as the herxs.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
I had lots of trouble finding anything for the lyme pain. There were several knds of pain- debilitating joint pain, muscle pain, :butning" pain, wicked headaches.
I got this free sample of that infamous stuff called ..'celebrex'...-- that CAUSED way more pain than it alleviated! (I shoulda looked at the label and noticed it was made by the infamous 'monsanto'l then I would have been much more careful...) I found ibuprofen somewhat helpful. Willow bark was somewhat helpful.
What I ultimately found to be very helpful was "Joint-ritis" "roll-on stuff- it is some kind of incredibly volatile penetrating agent, laced with joint nutrients. Of course I might have been over the worst of the "Herxheimer reactions" by then. The encapsulated supplement, 'Nutri-Joint' (from 'complementary'). as well as "NutraJoint" nutrient powder were very helpful.
Demerol Sucks- causes massive brain fog. Morphine is even stronger, but puts you in a state where you don't mind the fog as much, as long as you don't have something performance-intensive coming up!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Advil works best for me. Much better than Ultram which gave me a headache.
After 5 mths of taking about 2 Advil a day (with food) I developed leaky gut and had to give up the Advil and drastically alter my diet to allow my gut to heal.
Major problems arose when my gut was leaking.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I use Aleve, works for 12 hrs and doesn't trash the stomach. Ibuprofen didn't even touch the surface with my pain.
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I totally agree with the above post. I try to take just the ultram first and only combine the tylonol inemergancies. It does put extra stress on the liver.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Interesting to see so many varied responses. It sounds like the best pain reliever depends on the individual.
Many years ago I could tolerate Tylenol, but now it generates a tremendous allergic type reaction that takes months to settle down.
Ultram makes me spacey, and is only moderately successful at pain reduction for me.
Neurontin did nothing.
The various triptan meds for migraines help a bit, but produce an even worse rebound headache.
My painkiller of choice is Butalbital (aspirin + barbs). Kills almost all the pain, and I experience no side effects.
To reduce chance of addiction, I avoid all painkillers unless the pain grows completely intolerable.
Posts: 727 | From USA | Registered: Mar 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hi,
as someone who is in recovery for alcoholism and pot (never did drugs) i do have to watch what i take for pain.
i totally agree with the difference betw dependency and addiction. when i had a total hip replacement 7 yrs ago i was on percoset (sp?) for several weeks. i was in a nursing home, so it was monitored carefully. couldn't have dealt with the post-surgery pain otherwise. you also had to go to p.t. to get well, so you had to have pain meds in you so you could move around.
when i went home i was given something like a week to slowly ween off of them. no problem. it made me nervous, however, by the time the week was up, i was ready.
aleve saved my but then and continues to do so, although i have herx days like today and yesterday when advil or aleve don't really touch the pain. i'm at work, so i can't take an ocassional tramadol, which i had taken several times for really painful uti's.
i don't know which is worse. being at work in lots of pain on not enough medication (only very ocassionally) or taking the day as a sick day and getting close to the end of the alloted sick days for the year, at risk of being docked and LECTURED on excessive sick days. this happened several years ago when i ended up in the hospital for a severe asthma attick and then got a terrible stomach flu a few months later.
LECTURES suck and so does pain. for now i'm hanging in with the pain and waiting to go the llmd later this afternoon. regularly scheduled visit.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
human:
just as a side thought I remembered what my back doctor told me that demeral should not be used longer than 5 days. It can have some fatal conseqeucnes
And I have read that demeral was contradicted in lyme patients because it can make their cns symptoms worse.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Sounds like I am not alone with this pain complaint. Not so much my joints...it is deep in my chest and neck and brain behind eyes.
I tried to do yoga (gentle) today and I had to sit down after 15 minutes. My head was exploding and chest hurt.
My ears ache. Kerry, you are right about this weird stigma. I feel embarrased to ask my llmd about pain mgmt. Since on day one she said advil and tylenol.
Made me think I was just a baby and should toughen up. Deep down though I know my pain is real and if I had cancer or HIV or surgery docs would be happy to give pain meds.
Drug companies should make abx that combine pain killers to keep our pain at a reasonable level.
I often wonder how those of you who work can do it with pain...so hard for me to even get dressed some days, never mind act like a normal person in an office.
I wonder if the pain will ever go away or if this is now the new normal for me...
-------------------- We are spiritual beings on a human journey...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
humanbeing - First, I love addressing somebody "humanbeing"
I used to feel like my pain would never go away. I was terrified I would wake up one day and no longer be able to move because of the pain.
The pain changed how I interacted with the world, it began to change my personality. I became much more introverted. Because my hands hurt so much, I felt a disconnect from the world. But I refused to give into the pain.
I started pain treatment before my Lyme diagnosis. Even though my doctor was treating "fibromyalgia" and not lyme, he did help me find relief. Because he knew what drugs to prescribe for what symptoms.
That said, it took many months and many different drugs with many different side effects. But we found the right one for me. It also took patience, because the right one took weeks to work since I had to slowly increase the dosage to not be too fatigued by it.
This pain specialist really did give me my life back, so that I could then go forward and treat the Lyme. There were problems. Once I started Lyme treatment I had to defend my "choice" at every visit. But it was worth it.
My LLMD is great and has taken over the prescriptions, because I couldn't swallow defending my "choice" to treat Lyme to my pain specialist anymore, or the out-of-network costs for the visits. But this was after I found my pain management system.
Also, the yoga took a lot of time. I didn't start again until after months of physical therapy that included hands on work to relax my muscles and then shifted to strengthening. I was often extremely tight for 2 days after yoga, until my body got used to it. Don't rush. 15 minutes may be all you can do now..maybe even 5 minutes.
I wish you luck. It's hard, but it is possible to find the way to overcome pain. And if your LLMD won't prescribe anything, maybe she can recommend somebody?
If you have any questions, feel free to send me a private message.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
update --
because most of pain is from herxing, most days are at most a little achey, so i'm VERY LUCKY to have a small problem in this reguard.
i went to the llmd yesterday and talked about pain mgt for herxing while working and he suggested relafen - a stronger anti-inflamatory than over the counter aleve.
i'm not going to use it until the next serious herx pain, so i can't let you know until then. whenever that will be.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Human
Yes. Your pain will go away and over time the herxing will lessen.
Who can say the time line. No ones knows . But it is true. That with treatment ... and time you have an overall better chance for your future of having pain free days.
It can be the herx or die off or resulting pain that is telling your brain...this is permanent
It is not permanent. It is temporary. I hope you find some pain meds that help see you threw the worst of the herxing.
NO! you are not weak. It is a very painful thing to kill off those devils that release their toxins that make it unbearable. Even if mother Teresa where to go thru it, I gauratee she would call up her LLMD and ask for some relief.
Hang in there my warrior friend
Ask for help when you need it
and time will be on your side and we will too
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Being person with med background. I have changed my opinions a lot. Being in pain 24/7myself.![[group hug]](graemlins/grouphug.gif)
Kerry
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