posted
Before I knew I had lyme, I thought I had relapsing/remitting CFS/FM. Last year, I had a serious relapse with intense pain. I couldn't even sleep with strong sleep meds. It was burning, stabbing achiness across my upper back, neck, and upper arms.
I got a prescription of oxycodone 5mg, and used it mainly to get a good night's sleep. The subject of methadone was brought up at his time. However, the pain got less intense as time went on and gradually, I stopped using the pills. I still have a few pills left. This all took place in a 2 month period.
Once I started treatment for lyme disease (doxy and ceftin generic), the achiness has gotten worse. It isn't as bad as last year, but I find myself just counting down the hours till I can go to sleep. I'm aware of it all the time, and just recently realized it keeps me in a weepy, crabby state.
I recently went on a vacation to the tropics, and didn't take abx during that time. I built up my gut with probiotics. At first, I felt great, well, and then started losing energy, and later the achiness started to come back.
When I got home, and started taking the abx again, the pain picked up where it left off. I knew it would happen, but I'm just so tired of the pain. My attitude has changed.
I've been using heat, herbal mixtures, massage, acupuncture, vibrating massage thingy, smelly creams, and sometimes aspirin. They all have helped a little bit.
Yesterday, I took one oxycodone and, although it didn't erase the symptoms, I had a better afternoon by far. It knocked the edge off and I could ignore the soreness.
I hear it would be better not to take narcotics long term (something about it changing the brain somehow).
I feel like I'm just on the edge of really needing prescription meds, and now feel like I will start to feel better within a few months (which is what my LLMD told me).
So, I'm undecided about asking for a referral to a pain specialist. I'm wondering if anyone else is just on the edge of needing professional help for pain.
Any thoughts? Sure would appreciate it. I'll be making up my mind within a few days.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Depends on who you are.
I was in agony for years and never took a single pain med because I am addictive by nature. So I choose to be in absolute agony. Why? Because if I took pain meds I would get lost in it, I would end up not able to follow medical directions, to do what I needed to do to get well.
We had one woman in our support group who was never addictive pre-Lyme who was on every pain med under the sun all together- I learned 2 lessons from her. 1. she was scary driving, made the mistake of driving with her once and she couldn't tell which was teh REAL line on the road 2. she is in full remission and went off everything with no problem! she is not an addict. 3. even when ON everything she was on, the morphine AND the oxycontin AND etc etc she was in agony so I don't know how worth it her drug-induced haze was ultimately- the body ramps up to meet the meds so she ended up in agony even ON tons of stuff- boy was she LOADED all the time- BUT she went off everything and is in full remission- she did it successfully-
we also had 2 other people I think of with this issue
1.person ALSO like me with addictive issues- but she went on pain meds and WENT OFF with no problem when she went into full remission!!
2. ANOTHER person like the person above & like me with addictive traits- she died. She went on pain pills, went on EVERYTHING, was no longer able to maintain her treatment for Lyme, lost evrything, ended up homeless, and died. No kidding. Of cancer actually. Cancer & Lyme...
So the moral of the stories for me is... like with everything, it depends who you are! Some people with addictive histories CAN use pain meds successfully, SOME can't. I am not willing to take the risk of who I am... I am very very addictive by nature-
ANYWAY, best wishes with whatever you do decide- some people CAN do pain meds- and they help them a lot!!!
Whatever you do, I hope it works- Best wishes, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I am on pain meds, have been for about 3 years. I was on fentanyl patches, and I got in trouble with those.
Not addicted, just was on too high a dose. I was trying to be on the same dose all the time, instead of taking more when I flare.
I learned about pain management from going to a pain clinic, and having a really good pain dr.
the trick to it is: if you have constant pain, with pain flares, then you use the least amount of a long-acting drug that will make you functional.
long acting are extended release morphine, oxycontin, fentanyl, methadone, etc.
then you take a short acting one when you get the pain flare-ups. always be on just enough to control the pain and no more.
I take 15mg etended release morphine 3X a day, then vicodin as needed. some days I take 2, some days 6. My pain is getting better with abx.
I was like that scary lady you were talking about on the fentanyl, i kept going up when i got a flare, and then staying on that dose. went from 25 to 75 in a year and a half.
i went into detox to get off the fentanyl, then re-evaluated my pain, and have been on the morphine and vicodin since may.
Posts: 615 | From maryland | Registered: Oct 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have been using pain meds when needed sice I got sick in May. I don't have an addictive personality. I currently take vicodin as needed. Max twice a day, usually just once a day in the evening.
I worried a while back that I would become a junkie, but then with the help of folks here, I realize that I have severe pain and that is what pain meds are for.
So I take them. There is a great NSAID called Piroxicam. It really works great and you only have to take it once as day. I swear I would die without it!
You can't take any other ibuprofen or asprin with it but it is amazing.
I say be aware of addiction, but if you have pain it is not fair to have to suffer. Someone had posted that pain is not good for your body.
So please don't suffer, we suffer enough.
Aother pain med that was helpful was tramadol. It can cause some nausea though.
Good Luck, Melissa
Posts: 3905 | From USA | Registered: May 2007
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Sarah, it's good to get a variety of examples. I don't think I have an addictive personality. When I did take the oxycodone, I always did when I knew I wouldn't have to drive. However, they didn't seem to make me high or anything. I'm under the impression that 5mg is a low dose.
Roro, that sounds really good--going to a pain clinic to get educated. I've never even taken aspirin very often. I consider pain a signal to take care of something so I don't want to mask it and ignore it. But chronic pain is a different animal altogether. I think I need just a little something, and I don't think I get flares--it's just always there.
Melissa, I heard that if pain meds are used just enough to help with pain, addiction doesn't occur. Tolerance may, which isn't the same. Thanks for the suggestions.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Your welcome.
The vicodin doesn't make me high either. Just takes away a good amount of pain.
Good Luck
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Hi Melissa Yes I fight taking the pain meds too but then I get depressed and cry. I should try vicodin.
The high dose naproxyn just kills my stomach with all the abx. The ativan helps with my mood but I am still in pain with the burning...for some reason worse at night so I cannot sleep.
Posts: 422 | From CT | Registered: Oct 2007
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posted
no doctor will tell you this, but untreated pain is MUCH more dangerous to your body than risk of addiction.
pain can cause your heart and blood pressure to soar, and could lead to a heart attack. it weakens your immune system which prevents healing and defense against infection.
untreated intractable pain is fatal if left untreated for a week. I almost died of it in april after I went into detox. it is not something to ignore
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I just made an appt. with my LLMD to get a referral for the pain specialist. It will take months to get in. Must be a lot of people in pain around here!
I don't think I need a strong dose of pain killer. I just need to knock the edge off it. It's wearing on me.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
My husband takes Lunesta (sleeping pill) or Vicodin a couple of nights a week. He tries not to take them but if he's in alot of pain he needs to be able to sleep. How can your body heal if you don't sleep?
He doesn't have an addictive personality so I'm not too concerned in that arena.
Daisy, can you get your primary to prescribe something until you get into a pain specialist? Months is a long time to wait.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Parisa, My PCP is a ND, so she can prescribe codine and that's all. I don't know if that is sufficient. It well could be, I just don't know much about pain meds.
My appt. is with my LLMD and he's reluctant to do any pain management, since he's under scrutiny due to treating lyme. But, he's the right one to refer me to the pain specialist. I hadn't even thought of going to the naturopath.
I do have one bottle of oxycodone, from a year ago that I haven't used. I asked the MD who was moving for a refill, because I wasn't sure what I was going to do with him gone. I've been keeping it for emergencies.
When the pain was at it's worst, I couldn't sleep, even with xyrem, and now I can get a good night's sleep. So, I know my pain isn't as bad as last year. I'm hoping to get relief for the next few months, and then, hopefully, the pain levels will go down. (What do I know--I'm so new at this).
Thanks for your input.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
I have used every pain medicine, both Narcotic and Not, while treating Lyme and Co-infections. I know that they are a Bandaid, but my pain is a 90/10...hahha, no Joke. I have extrememe headaches, I am unable to walk from Lyme due to Guillian Barre Syndrome, which has become Chronic (CIDP), I cannot eat anything, my stomach is completely paralyzed, so I am on IV TPN, along with Tube feedings. I have severe seizures, and Narcolepsy....etc...The list is endles....
So, I figure, Why NOT use the Narcotics, if they can at least take the edge off?
I have used EVERYTHING---starting with Percocet, than moving up to Oxycodone, than Methodone, than Fentanyl Patches....Than IV Morphine, IV Fentanyl....I am ALWAYS able to stop each medicine cold-turkey with no problems.
My Pain management specialist has told me that when his patients are REALLY taking these medications for pain---physical pain, that is...That the addiction rate is 1%....he said almost 100% of his patients who take them for pain are able to stop them whevnever, and not be addicted, since they were only taking the medications to help get them through pain from an actual Illness or Injury...etc.
Posts: 29 | From New York | Registered: Aug 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Do you think your ND can rx The Piroxicam??
It is just a NSAID.
You won't be sorry if you try it. Takes about a week of taking it to see the difference.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My family has many addicted members, my neice died from it, and my mother and brother have come close several times.
My daughter was suffering for a long time so as not to get caught up in that mess. But, when the pain got too much to bear, she broke down and took one vicodin.
It doesn't make her spacey, in fact it brings clarity to her brain. It doesn't take it all away, but it makes her functional enough to be able to take a college class or two.
She has decided that at 19, she needs to move forward with her life instead of parked in pain on the couch.
She tells me every time she takes a pill, and takes no more than two a day. That may not be for everyone, but she feels better knowing that it's not a free-for-all.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Rachel, I'm sorry you're in so much pain. When I thought I had FM, I always thought I had a very mild case. Once I told someone it was gone, but they tried the tender points and it was still there. I just had soreness that I could ignore.
I haven't had serious pain until last year. It was 6-7 for a couple of months. I think now it's 3-4 out of 10, maybe 5 at times.
It's affecting my sleep, so I don't consider pain management a bandaid at this point. But, I know what you mean, it isn't healing in of itself, just sometimes very much needed.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Melissa, I'm going to look into Piroxicam. I'll call the ND today and ask about it. I didn't realize it's RX rather than OTC.
The one problem I have with NSAIDs is that they can be hard on the kidneys. Last year, when I was offered hydrocodone, I asked for straight oxycodone for that reason. I had trouble with my kidneys years ago, and try to baby them now.
Lately, I've used aspirin more and more. It looks like I need to take 1 at night, 1 in the middle of the night, and 2 during the day to have relief. It seems like it wouldn't be good to do that for very many days in a row, but I want to give aspirin a try before my appt.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Kelmo, It looks like you have a very mature 19 YO daughter, and I'm glad she has you to help her get thru this.
I never felt high when taking oxycodone for pain, just more like my normal self.
I never was interested in drugs as a young person, and am basically a "pill hater" anyway, so this issue has been very hard for me.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
I went to a pain management clinic for years before finding out I had Lyme. I tried various combos of narcotics, anti seizure meds, NSAIDS, and muscle relaxers just to get through without leaping off a cliff.
Chronic pain is tough on your body.
I was on fairly constant narcotics and other medications for over 5 years. When I finally found out that I had Lyme and Babs and treated those I was able to back off the pain meds and now I am on no medication.
I do think that you need to be careful and working with a pain management specialist is important but there is no shame in treating pain.
I had no trouble coming off the medications when my pain stopped.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
Lucy, Thank you. I was raised to ignore pain and illness like it was a moral issue. This whole thing has been a struggle for me. I've done a lot of changing and am a better person for it.
Some in my family have been supportive, but not all. Even after I was in ICU for 10 days (and almost died), my Dad called me a hypochondriac. I guess denying pain is how he survived WW2, but that attitude doesn't translate well to living in normal conditions.
Actually, as a person diagnosed CFS the last 3 decades set me up to be abused by the medical establishment. It's only been the last couple of years that I found doctors who didn't think I had a mental problem (attention and/or drug seeking).
I'm sure glad the CDC finally is coming around in their attitude and hope it helps all of us who are dealing with complicated illnesses that have no convenient tests to lean on.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
It's interesting to hear everyone's various experiences. I struggle with the pain med decision too. I don't have addictive tendencies, but I want to minimize the chances of building a tolerance, and then needing ever-increasing doses of pain meds. So far I've succeeded. Let me explain some of what I've done.
I consider myself lucky that I've not had severe pain since getting my vitamin D levels down. Prior to that I'd get intense headaches that nothing but narcotics would touch. When the HA would happen, my self-imposed rule was that after I took a dose of pain meds, I would avoid all my known HA triggers (visual effort such as reading was one) for the remainder of that day. This was to avoid use of pain meds simply as a crutch to let me go back to whatever I had been doing that triggered the HA.
Another rule was to avoid taking the strong pain meds on consecutive days. If I again needed something the next day, I'd instead take an OTC med such as aspirin, and tough it out.
These days my chronic pain is mostly the herx-related, flu-like stuff most of us have experienced: lots of muscle aches all over, dull headache, joint pain, insomnia, etc. The level of pain cycles in step with my pulsed abx doses. If I experience too much herx all the time, I scale back on the abx rather than take pain meds every day. Yeah, sometimes I wonder if I could get well sooner by taking more abx, and dealing with the increased herx by taking even more pain meds, but I think that's a dangerous path.
I also switch among pain meds on the theory that since they work via different mechanisms there's less chance of building a tolerance. Of course, some pain meds work better than others. I try to take the one with no more than the amount of power to match the level of pain. One day that might be aspirin, another alleve, etc. I save the opiates for the worst days, and do my best to avoid using them on consecutive days.
Since the pain meds generally help me sleep, I'm concerned about growing dependent on them. So sometimes instead of a pain med at bedtime I'll take other meds like lorazepam or trazodone that have the side effect of making me sleepy. Again, my theory is the switching means less chance of building a tolerance, but I don't know that's been scientifically proven (it's likely different for different people anyhow). Also, I purposely do NOT take any sleep-influencing med several nights each week to prove to myself I can indeed sleep without them (I don't sleep as well, but I figure my body will eventually adjust).
Posts: 727 | From USA | Registered: Mar 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have not read the other posts, but I already know people are full of advice and most are either pro or con to narcotic meds, I am pro.
I am trying to survive a disease, I will take whatever helps me from diving off a bridge. Nothing is harder than battling this disease, getting off pain medications will be a cake walk in comparison. If and when these diseases are gone, I will then be more than happy to get off any pain meds and it isn't that hard, also if needed help is available though meds like suboxone (no one pm about this read this book instead): http://tinyurl.com/2rn3lh or read thte link below.
If you abuse these meds and take more than prescribed that is a problem, if you stay within the prescribed amount, no matter how long you take them you should be fine according to many reports.
posted
Ultram (Tramadol) helps me a great deal, and is resonably safe from the threat of addicition. Its rate of addicition is 1 in 100,000. Of course, it not as powerful as the opiates, but anything more than any of the OTC. I have an addictive personality--if it makes you feel good, do it--but the Ultram helps the pain and there is no high from it.
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posted
Thank you, dguy, Lymebytes, and Greatcod for your thoughts.
I'm really glad I started this thread. There's as many different ways to handle this issue as there are posters.
I'm going to experiment with aspirin for a few days. I don't think it's good to take it for too long because it thins the blood, but it will give me a reference point for how much pain I have, or how much relief I would need.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
Narcotics are one of the most effective methods of treating chronic pain. But, there are other choices as well. Most pain specialists will have you on a non-narcotic every day that is targeted for your type of pain (like zanaflex for muscle pain or neurontin for nerve pain) and then give you a narcotic prescription for break through pain.
Chronic pain changes your nervous system. Not treating the pain is the worst thing you can do for chronic pain. It weakens the immune system and increases your sensitivity to pain.
Get to a good pain specialist. You want somebody who knows how to treat the pain. Most doctors do not understand pain, have misinformation on narcotics, and don't keep up to date on the new medications.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Aniek, Thank you for the information. I'll check it out.
I trust my LLMD has a good pain specialist to recommend. I know he does send patients to one in particular.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
daisys,
You're lucky. Good pain specialists are hard to find. I was amazed how much the one I go to now understands Lyme pain.
The first one I went to refused to budge from his fibromyalgia diagnosis once I got dxed with Lyme.
By the way, if it's muscle aches you have, I find zanaflex to be extremely helpful.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Aniek, I'm hopeful he's a good pain specialist. I know of one other who goes there, and they seem to be well medicated.
I always have soreness somewhere in the upper back area that feels almost like a sunburn.It moves around to the arms, neck and right now it's lower than usual.
At night my hip joints hurt enough to wake up up even tho I take strong sleep meds. Then when I get up in the morning, I usually have some joint pain--today it's my rib cage, but usually it's my elbows and knees.
Last night I took an oxycodone, and I still woke up once, but the pain was a lot less.
The pain waxes and wanes, so some days I don't need to take anything, but lately they've gotten scarce. And I usually do so much better in the summer, I don't need anything at all.
I just want to make sure I can get help when I need it, but hope I don't get on a routine of taking something all the time. I wouldn't be able to tell when I don't need it.
Also, anything that causes weight gain is a deal breaker with me! I'm struggling to lose about 15 pounds that I've put on since this last relapse. At that time I was very close to my ideal weight, and would like to get back there!
Again, thanks for the input. I'm going to be writing down all these suggestions, and researching them, so I understand what's going on.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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