posted
I went to the emergency room yesterday. I was in so much pain I couldn't take it anymore. Since i wrote my last post "Can't stop Crying" I've just had it.
Off meds I am doing much worse than on meds.(antibiotics)-and I mean only 2 days of being off. My LLMD made a big mistake of tellig me to go back on LDN (low dose naltrexone) because it just riggered my body to create more pain.
So this is what occured. I called my Pain doc on Friday - they never called back. I called my LLMD in NY he put me on Neurontin. Woke up Saturday - more pain - so unbearable - I am currently on Vicodan 750 2 -3 x daily and flexeral 1/2 tab 1 -3 x daily. Called pain doc - no call back
Called LLMD. He called pain doc - no call back, so he called emergency room and gave them the heads up on me, which I though was really nice of him.
At ER they gave me Risperdal 4mg PO, Valuim 10mg PO, Benadryl 50mg PO, Yes I was zonked out for the entire evening and part of today. Pain is roaring back.
Doc ar ER told me I need to get on at least 600 - 1200mg 3x daily neurontin per day to feel relief and that this would really help me. Anyone have this experience with this dose?
In the mean time He said I need to contact my Pain doc to get myself something stronger until neurontin kicks in.
I am on the anti-inflamitory herbs. Has anyone had to go on opiods and was able to get off of them easy enough. Or do you regret going that route?
Please, I am so desperate, and hurting soo bad. I need a better quality of life.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i wish i could help but all i can suggest is epsom salts baths might help.
please be careful with those pain meds. there is always a risk of addiction.
is your pain widespread? body type, internal, what??
mine is mostly joint but is manageable and throw in some stomach and gastro issues.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Thanks for answering back. especially on Easter. BTW Happy Easter. It's widespread pain, joint and muscle. I've had Lyme for years now and It seems to be getting worse lately.
My gut is good. I'm lucky. Yea, I've been taking some baths, but it just keeps on getting worse.
I am reluctant to go up on the pain meds but my quality of life is getting worse and worse. I've had pain for some time now and have been able to control it with meditation, herbs, exercise,etc. but this just stops me in my tracks.
I am becoming more disabled due to the pain.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm, let's see. maybe i can come up with some other ideas...
hot packs... exercise, but that's hard to do when you hurt so bad topical pain cream maybe
wish i could think of something else. but it is easter and most of the people are off doing something. they'll get back to you by tomorrow i hope.
i found er's to be useless really unless you're in a car accident.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
The neurontin at high dosages works pretty well, but it does cause some side effects. It will make you really groggy and wiped out, but that's better than being in severe pain.
Do you have a good LLMD who is exploring all avenues of treatment? Been treated for all possible coinfections??
I hope you get some relief until the neurontin kicks in.
Happy Easter!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
Yea, I have to call the doc tomorrow to make sure they can help me until the neurontin kicks in.
Heat packs help, topical cream, moving around, all help. We all know all too well our worst days or worst periods with the lyme.
Co-infections are playing a big part in all of this. I was dx so long ago when they were only treating Lyme, so i have a long road ahead, but I'll get there.
ITMT I will Praise God on this Wonderful Day!
Have a great day!
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
- Good for you! That's the attitude that will enable you to win!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Since I am unable to tolerate any pain medications, here are some things I've found helpful for the different types of pain:
Joint pain: Nettles (need at least 600mg/day, possibly more...takes a couple days to really start working), MSM (high dose - my DH takes 6000mg/day and some find they need upwords of 8000-12000mg/day for maximum effect), Causticum (homeopathic remedy), Heating pad
posted
Thanks for all the replies friends. You all gave me some good suggestions to think about and try.
New hope is always a good thing.
I did try the Nettles today, and really loaded up. I really think it helped some! And I'll take anything right now. I feel so relieved that there is hope because i was starting to feel hopeless.
I hope you all had a good Easter. And When I get off of this post I am saying a quick prayer for all of you.
I pray that God brings you and your family relief today from pain and sickness. I pray that he boosts your immune system so you can fight this illness and have a speedy recovery. I pray that you all sleep well and wake to have a wonderful day tomorrow.
Hugs
Donna
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
ER docs are generally not good for complex situations like lyme and co's. If your leg is hanging off, then they can help.
Consider getting a new pain doc if you can't get a call back when you really need him...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Darwin's dream
For joint pains:
1) When working in healthfood stores and other places I saw many people responding really well to a product called Zyflamend, for joint pain. By New CHapter Organics.
Other people responded to Chondroitin/MSM/Glucosamine Sulfate combination.
2) Try also Capsaicin cream on the joints, alongside the ZYflamend.
OR:
Wrapping the joints with fresh grated hot ginger packs, no more than 15 minutes (soak ginger in hot water, put on towel and wrap around joint. Skin should be healthy pink, but not unhealthy red, absolutely do not fall asleep with this hot pack on, can burn your skin and even blister it) this helps to dilate the capillaries and bring circulation to the area. In turn, that releases toxins from the area and brings healing warmth to it, aids pain control.
You can also do the hot pack/joint wrap with mustard powder, or cayenne powder. Add hot water like making tea, let steep on towel until hot but not hot enough to burn your skin, and wrap. Leave on for 15 minutes. Thereafter, wipe with cool damp cloth to remove spices, and wipe down with olive oil to cool the skin.
The Capsaicin cream (at pharmacies) above works in much the same way, using cayenne pepper instead of ginger.
3) ALongside, for internal cleansing therapy for joint pains:
If the nettles helped you with joint pains, then you may possibly need kidney support to clear out any dietary uric acid. Nettles, dandelion *leaf* (not root in this case), cleavers, uva ursi, hydrangea root, corn silk can all work together to help you to excrete uric acid from your body, which may possibly be accumulating in the joints (this usually happens with more typical arthritis inflammations, not lyme so much. However since it helped you to use nettles, I am assuming the kidneys may be involved).
All those herbs together can be combined into one formula and save you money. Look up "kidney support" on www.iherb.com or herbal companies such as GAIA Herbs, HerbPharm, etc. Nettles and dandelion leaf would be the more important herbs here, with other herbs alongside as additional support. You could also buy nettles and dandelion leaf at the healthfood stores to make tea, mix with mint and it will taste just like mint tea, nothing more. Adding burdock as liver cleanser/blood cleanser may not be a bad idea either.
Muscle pain:
If neurological in origin, I agree with Razzle's ideas above about homeopathics, hypericum perforatum in particular.
Try also St Johnswort oil topically, an excellent nerve anti-inflammatory---recently spoke on the phone with the co-author of the new book Herb, Nutrient and Drug Interactions, he said that SJW oil *topically* will not interfere with drug absorption (it will, if taken internally). The book is praised by an NIH researcher as being exhaustively thorough and unbiased.
Mix SJW oil with homeopathic Traumeel oil and apply topically for excellent nerve anti-inflammatory results. (I've also seen excellent results with SJW oil alone, even in some acute cases of neuropathy. One guy's toes were purple in absence of diabetes, SJW oil alone really helped him a lot, he told me).
Coconut oil as massage can soothe nerve inflammation-type pains, sometimes.
Lavender oil, ditto. Hauschka's Talma Moore Lavender Oil is excellent.
Arnica massage oil by Weleda---that company, other products aren't even close to being nearly as good as the Weleda product---can help loads with *muscle and tendon* aches and pains. Truly excellent, this product really works! For back pain, sprains, strains, etc.
New Chapter Organics makes an aspirin-like herbal that will not hurt the stomach, called Headache Take Care. Really works well for headaches and may help with other pains too. Contains herbs from which aspirin used to be made, and is currently made.
It is not necessary to do all of the products above, just listing a number of choices to see which you respond best to.
Further reading: Healthy Healing by Linda Rector Page, ND a reference book in most healthfood stores nation-wide.
Pocket Guide to Herbal Medicine by Karin Kraft, MD and Christopher HObbs, LAc lots of good info about pain control of various types.
I am *soooooo sorry!* to read of your pain. Please know that we all would love to support you in any way we can!
You take care.
CI ps the darkest hour can be just before the dawn. And in my experience, just exactly when things have looked hopeless, that's exactly when help was around the corner. For me in my life, this has usually happened in a matter of days. I also have learned from this illness that simple things can make a big roar in the body. It deceived you, you think it's big and hopeless, but in fact to take care of it, often something simple can be helpful or even lie at the root. Take heart my friend, there is always a solution even if things look/feel bleak right now. Again this has been my *repeated* experience, truly when things looked bleak---I really have been there. We all probably have been at some point. My firm belief is that you will really be okay, with hte right intervention.
YOu might consider an ND alongside your LLMD for naturopathic support www.naturopathic.org
The above information has not been evaluated by the FDA and is not intended to diagnose, cure or prevent any disease.
IP: Logged |
posted
You all gave me some really great ideas! Thank you soooooo much!!
I put in a call to the pain doc this morning. I'll see if they call back. I'm going to see if they can put me on something a bit stronger until the herbs kick in because I hurt too bad too wait any longer.
I'll let you know how it goes.
Hurting really bad this morning - Ouch, ouch ouch,
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
chiquita incognita
Unregistered
posted
Soooooo sorry to read about your pain, pain, pain, ouch!!
I already pm'd this but for the benefit of everybody here, an ND I used to work with said that pain management is really important.
She said that prostaglandins (Hormone-like chemical messengers which may be inflammatory or anti-inflammatory in nature) form when there is pain. This increases inflammation and reduces the chances of healing. So it's really important for healing to manage the pain. She said that often the mainstream pain killers are superior to naturopathics, but then again there also are situations when the naturopathics may work well.
Resoundingly and overwhelmingly, for muscle/tendon pains I have seen the Weleda Arnica Massage Oil work incredibly well and fast too. However other arnica products on the market don't even work. It's specifically the Weleda product that I have seen really good results with. HerbPHarm makes an arnica oil that is a helpful muscle relaxer and which facilitates healing. but still not as good for pain control as the Weleda product. I do not work for any herbal company and am not making a dime in profit...
I also have seen people respond very well to the Zyflamend for joint pains. The spice wraps can help too but must be done carefully.
PLease note:
The tea above was *not* recommended for pain control. Instead, it's to prevent uric acid buildup and hence to cut down on the chances of inflammation. Note that many things may cause inflammation and pain, uric acid is only one of them.
Food allergies may figure prominently too in joint pain causal factors, fyi.
This is for adjunct support, not to replace any medical therapy. Do only under your doctor's watch.
Looked again through all my herbs and found Arnica + pain relief cream by Homelab , has Arnica Montana MT 4% hypericum perforatum MT 4%, Symphytum officinale MT 4% as active ingredients. I guess it was tucked in the supplies all the way in the back.Duh..buy the stuff..don't use it = Lyme brain.
You are so right about pain inhibiting healing. Pain is so detrimental to our well being,both physically and mentally.
Called pain doc - do you believe they told me the best they could do is give me another appointment for next Monday? How insane is that?! How cruel is that? I never ever had a history of abusing any meds in my life, ever.
I put a call into my primary AZ doc to call my NY Lyme doc. I'll see what happens. This is a nightmare. ITMT I'll do what I can what you all suggeested.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
posted
Many may criticize, but I have gone the opioid route. Felt at the time it was that or disability. So that was my choice; don't know about about going off bc I'm still on, and in so much pain already can't imagine how much more w/o them....email me if you want to talk more.
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
| IP: Logged |
posted
Thank you for stepping forward. I don't judge you for going the opioid route. Pain is different for everyone and if it helps your quality of life, that's important.
I think we all have to explore all avenues for ourselves to reach the best state of wellness we can feel. This is a horrible illness and taking all the weapons out may be the answer for some. There is no shame in that.
I don't know...maybe it may shorten a life span...maybe not....but that person who chooses to go that route may feel their quality of life was worth it.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
Opioids, Pain Management, and Addiction Jennifer P. Schneider, M.D., Ph.D.
Pain Practitioner, Winter 2006-2007, 16:17-24.
Although chronic pain is the most frequent cause of suffering and disability that seriously impairs the quality of life in the United States, chronic pain is still regularly undertreated. Despite the availability of potent pain medications, most prescribers are still reluctant to adequately treat chronic pain, especially pain that is not caused by cancer.
Some reasons I have heard for the willingness to treat cancer patients are, �It doesn�t matter if the patients get addicted, since their lifespan may be limited anyway.� �With cancer pain I know the pain is real whereas with back pain, headaches, chronic pelvic pain, neuropathic pain, etc. you can�t see anything on labs or x-rays.� �Once you start, you have to keep increasing the dose because the patients will become tolerant and will need more and more to get pain relief.�
Such responses bespeak a fundamental misunderstanding of chronic pain and of opioids. This article will address these misunderstandings. Its focus is on opioids, but keep in mind that treating chronic pain often requires a comprehensive approach including several non-opioid medications (NSAIDs, (acetaminophen, NSAIDs, anticonvulsants for neuropathic pain, muscle relaxants for muscle spasm, etc.) along with physical therapy, exercise, injections, and alternative approaches.
Chronic pain is pain that lasts 3 or 6 months (or some other arbitrary time period) and which has lost its usefulness. Acute pain in a particular body part is a useful signal that something has gone wrong and needs assessment, but with chronic pain there is often a disconnect between the source of the pain and the pain experience.
The cause of the pain may have resolved, or the painful body part may even have been amputated. But the pain is still real. When acute pain is prolonged (e.g. by undertreatment), changes occur in the central nervous system (a phenomenon called central sensitization) such that the pain signals continue to be sent through nerve fibers to the brain, no matter what is going on at the original site of the pain (Woolf 2000).
The pain signals have taken on a life of their own, much like an experienced typist who starts typing a word and finds his or her fingers completing a commonly typed word rather than the one intended, or a driver who intends to drive home by a different route than normal, but finds himself having unthinkingly turned the car to the street he usually uses.
In chronic pain patients, nerve signals that are normally interpreted as heat or pressure may be perceived as pain (allodynia), or normally mild pain signals may be severely painful (hyperalgesia).
The result is that it is hard to assess chronic pain objectively. Typically what is observed is pain behavior, so that the patient who grimaces and groans, whose face is pale, who is hyperventilating or crying, is believed to be in a lot of pain, whereas a patient who sits quietly, or who is observed laughing in the waiting room, is thought not to be in pain.
Chronic pain patients, however, adjust to their condition, as does their autonomic nervous system. In reality, the best measure of chronic pain intensity is the patient�s word. This is considered by JACHHO (Joint Commission on Accreditation of Health Care Organizations) the gold standard of pain assessment (JCAHO, 2000).
Not believing the patient is likely to lead to exaggerated pain behaviors and can damage the practitioner-patient relationship.
The goal of chronic pain treatment
The goal of acute pain treatment is first and foremost to diagnose and treat the source of the pain, and second to provide pain relief. Chronic pain treatment, however, is different. The initial step again is diagnosis and definitive treatment. But once the patient is beyond that stage � the back pain has been operated twice and the surgeon now says that additional surgery is unwarranted; the neurologist says the headaches are not due to a brain tumor but rather are a chronic recurrent problem; the patient has been patched up after the car accident but pain remains � the goals now become relieving pain and improving function.
Patients often believe that if only one more sophisticated test is done or specialist seen, the �real cause� can be determined and curative treatment instituted. Most of the time, this is not so; patients need to be educated to take the focus off diagnosis and on to improving their function.
A successful outcome in chronic pain treatment is one that improves the patient�s functioning. When a patient says, �I have my life back,� he doesn�t mean that he is still spending all day in bed, but with less pain. He means he can now go to work, walk the dog, clean the house, do yardwork, have sex, etc. That constitutes a good outcome, but getting there may require strong pain medications.
Are opioids safe?
In their position paper on pain management for geriatric patients, the American Geriatrics Society wrote that opioids are safer than NSAIDs. (AGS, 2002) Unlike NSAIDs, opioids do not cause GI bleeding, don�t elevate blood pressure, and have no specific organ toxicity. Their chief side effects are nausea/vomiting, sedation/respiratory depression, and constipation.
The first two usually resolve with continued dosing. Constipation does not, so that patients on opioids need a continual bowel program. Opioids bind to mu receptors in the gut, slowing down the transit of materials through the intestinal tract. For this reason, fluids and fiber aren�t sufficient; the patient needs a laxative to counteract the slowing effect of the opioid. I generally recommend a preventive regimen of daily senna plus a stool softener.
Chronic opioid administration often causes a subnormal testosterone level in males. (Daniell, 2002; Rajagopal et al, 2003.) This can result not only in decreased libido and erectile dysfunction but also in decreased muscle strength, less energy, and eventually in osteoporosis. All male patients on chronic opioids should have their testosterone levels checked. Unless contraindicated, consider testosterone replacement.
There is no accepted upper limit of safety for opioid analgesics. Because of genetic differences and varying pathology, patients differ enormously in the dose needed for adequate analgesia. Patients may also differ genetically in their response to a particular opioid (Galer et al, 1992), so if high doses of one opioid are not effective, consider changing to another.
Opioid-induced sedation typically resolves with a few days after a dose is begun or increased, so patients need to avoid driving when sedated. Once they feel alert, generally it is safe to drive because they have adequate psychomotor functioning (Jamison t al, 2003; sabatowski et al, 2002, Fishbain et al, 2002).
Tolerance Tolerance is the need to increase the dose to get the same effect, or a decrease in effect when the same dose is continued. Asking �Do patients get tolerant to opioids?� is asking the wrong question. The correct response is, �Tolerant to which effect?�
Opioids have several effects, and tolerance to these differs. As mentioned above, tolerance to sedation and nausea is common, a desirable outcome. Tolerance to constipation is not, which is why an ongoing bowel program is necessary. Contrary to common opinion, tolerance to the pain-relieving effect of opioids is uncommon. (Scimeca et al, 2000; Portenoy RK, 1996)
Research in animal studies suggests that in some situations opioids cause hyperalgesia (Mercadante S et al, 2003) but this is rarely observed in the clinical setting. Usually when a patient is on a dose of opioid that gives good pain relief, he or she is likely to stay on that same dose for a long time. When the patient complains of increased pain, consider the following possible reasons:
The patient has increased her level of physical activity The underlying disease has worsened or a new pain problem has appeared Increased pain after a year of two of a stable dose is not due to late development of tolerance. Assessment requires going back to basics: re-evaluate the back or whatever region of the body has increased pain.
Understanding physical dependence versus addiction. Physical dependence is a property of various classes of drugs, including opioids and corticosteroids. Once the body has become habituated to such drugs, abrupt cessation results in a recognizable withdrawal syndrome.
Full-blown withdrawal from steroids and alcohol is potentially fatal; withdrawal from opioids is uncomfortable but rarely dangerous. Some drugs of abuse are associated with a withdrawal syndrome; others (such as cocaine and marijuana) are not.
Withdrawal symptoms can be avoided by tapering the drug, as every practitioner who prescribes corticosteroids knows. Physical dependence is a different phenomenon from addiction. Confusion arises because opioids can produce both physical dependence and addiction. Pain patients treated chronically with opioids often become physically dependent, but only occasionally develop de novo addiction.
A prior history of drug or alcohol addiction or abuse increases the risk of addiction.
Drug addiction is a disease in which there are three elements Loss of control (also called compulsive use) of a drug � the person uses more than intended, is unsuccessful in attempts to cut down, etc.
Continuation despite significant adverse consequences � disease or injury, job loss, relationship difficulties, arrest, etc. Preoccupation or obsession � over obtaining, using, and recovering from the effects of the drug.
Signs of possible drug addiction in the medical setting may include: Repeatedly using up the drug before the next refill (but see the section on pseudoaddiction below!) Frequent requests for early refills, recurrent stories that the medication was lost, stolen, fell down the toilet, was eaten by the dog, etc. Abuse of illicit drugs Selling prescription drugs Injecting topical or oral medications
For a more detailed description of addictive disorders, look at the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV, (APA, 1994), but notice that the word addiction appears nowhere in this �bible� of psychiatric disorders. Instead, the word has been replaced by the term dependency, so that opioid addiction is called opioid dependency, which is not at all the same thing as physical dependency on opioids.
This is why when discussing issues of opioid addiction versus physical dependency, it�s crucial to make the distinction.
Does prescribing opioids for pain lead to de novo addiction? Surprisingly, there are no solid published studies to answer how likely prescribing opioids for chronic pain is to engender iatrogenic addiction. In the U.S. about 10 percent of people are addicted to drugs, so it�s expected that this will also be true of the pain population.
Clinical experience by pain specialists such as Russell Portenoy suggests that de novo addiction to opioids in patients without an addiction history is unlikely to result from long-term opioid treatment for pain (Portenoy 2003). One way to minimize this likelihood is to keep careful records of when refills are due, have clear-cut rules and expectations outlined in a written contract, get urine drug screens if you have any concerns, and see the patient on a regular basis (See below).
Pseudoaddiction versus addiction In the clinical setting, undertreated patients may look like addicts, because in their efforts to obtain more pain relief they may use more than prescribed, go to more than one prescriber to gain opioids (�doctor shopping�), or make up stories why they need early refills.
Behavior that results from undertreated pain rather than from addiction is called pseudoaddiction (Weissman DE 1989). Some prescribers do not realize, for example, that giving 100 Percocet (containing 5 mg oxycodone) for a month may be seriously undertreating a patient with significant 24/7 pain.
If in doubt, the prescriber can give the patient a week�s supply of their pain medication at a dose that they say has worked for them, then see the patient back in a few days, along with the prescription bottle, and see what happens. In a legitimate patient who has been undertreated, the aberrant behaviors will disappear once treatment is adequate.
Other aberrant drug-related behaviors (Portenoy), such as selling prescription drugs or injecting an oral or topical formulations, are huge red flags for addictive disorders.
Assessment for appropriateness of opioid therapy Patient assessment for a chronic pain problem begins with a history of the pain problem, supplemented by old records of prior assessment and treatment. Let�s assume that a patient who comes to you for pain management has chronic back pain that has been evaluated and treated surgically.
She has had several local injections with transient benefit. Assessment begins with obtaining a history of the pain problem, treatments already tried, current medications, and previous medications tried for the pain. Ask about the patient�s life before the back pain began and how the back pain has impacted her functioning. What is she able to do now?
What are her goals in seeking pain management? Ask about other current and past medical problems, the patient�s job history and current employment, and whether or not she is living alone. Inquire about past or present use of cigarettes, alcohol, coffee, and illicit drugs. I phrase the latter as, �Have you had any experience with recreational drugs?� A prior addiction or abuse history does not rule out opioid use, but requires caution.
Prescribing opioids The goal of prescribing pain medications is to maximize the patient�s functioning, not to minimize the dose. With this in mind, the process consists of beginning with a low dose to minimize side effects, then titrate upwards until an effective dose is reached.
The initial dose and the particular drug depend on what opioid (if any) the patient is currently taking, what experience they�ve had with various opioids, and what attitudes they have about particular drugs. When patients obtain pain relief, they are likely to increase their level of activity, which in turn means a need for an increased dose of opioid.
Once the patient�s level of functioning has stabilized, so does the maintenance dose of medication.
In general, short-acting opioids should not be used as the mainstay of chronic pain treatment. They require repeated dosing during the day, keeping the patient focused on his or her pain; provide up-and-down blood levels which can result in periods of mood alteration alternating with increased pain; do not last long enough at night to provide sustained sleep; and are usually formulated in combination with acetaminophen (sometimes aspirin), which is toxic in high doses.
Sustained-release opioids, on the other hand, provide smooth blood levels with sustained pain relief and allow better sleep at night.
The plan is to maintain the patient on an effective dose of a long-acting opioid (methadone) or sustained-release preparation (morphine, oxycodone, or oxymorphone, or transdermal fentanyl), and supplement with a small quantity of an immediate-release preparation for breakthrough pain (hydrocodone in Vicodin, oxycodone in Percocet, etc.)
Recognize that chronic pain is not uniform throughout the day or week. At times the patient may have increased pain because of increased physical activity, weather changes, end-of-dose failure, or increased anxiety or depression. (Extensive medical literature supports the finding that pain and depression each worsen the other, and when both are present, both need to be treated.)
The patient is told to take the sustained-release opioid on a timed basis, and the immediate-release only as needed.
Providing structure Patients who take opioid analgesics need to be informed consumers. The practitioner�s responsibility is to educate patients about physical dependence, addiction, constipation, preventing diversion, etc.
Patients need to understand what is expected of them. A written opioid agreement, to be signed by the patient, spells out the physician�s expectations of the patient. The patient agrees to assist in obtaining old medical records, to obtain opioids from only one prescriber, to get the prescription filled at only one pharmacy, to make no change in dosage without prior discussion with the physician, to obtain any consultations the physician recommends, not to use illegal drugs, and to agree to urine drug screen.
The patient also gives permission to the prescriber to discuss the patient with pharmacists and other relevant practitioners. The patient understands that early refills will not be given (except for a good reason).
Part of appropriate assessment for opioid treatment is to determine the level of structure the patient needs. Anyone who has chronic pain deserves treatment, but some people need more structure than others. If a patient cannot reliably manage their own medications, a plan to do so must be arranged. If a problem becomes evident in the course of treatment, the structure may need to be intensified.
Some examples from my practice where opioids were prescribed only when a family member agreed to hold and dispense the medications:
a 75-year old woman with dementia who couldn�t remember if she�d taken her medication a 20-year old youth with bipolar illness who has episodes of hypomania when he misuses medications, alcohol, etc. a 45-year old man with a head injury who can�t remember things from day to day
Another situation in which a patient cannot be relied on to take his opioids responsibly is the person with an active drug addiction. The only way such a person can be considered for opioid management is if he or she is receiving ongoing treatment for the drug or alcohol addiction.
A position paper of the American Academy of Pain Medicine and American Pain Society states, �Experience has shown that known addicts can benefit from the carefully supervised judicious use of opioids for the treatment of pain due to cancer, surgery, or recurrent painful illnesses.� (AAPMed/APS Patients with the two concurrent diseases of pain and addiction would benefit from referral to an addiction specialist.
Patients with an addiction history will benefit from occasional urine drug screens and ongoing involvement in a recovery program such as AA or NA. Former addicts who have family and community support and who are involved in addiction recovery activities can do well with opioid treatment (Dunbar 1996).
Follow-up Chronic pain patients need to be seen fairly often � I see stable patients once every two months, but more often initially or if something changes. At each visit the �4A�s (Passik 2000) are assessed and documented, as is a fifth A, affect � how the patient feels.
Analgesia � �On a scale of zero to ten, how much pain do you have today?� Activities of daily living � How often and how long do you walk the dog, etc. Adverse effects � how�s the constipation? Any sedation? etc. Aberrant behaviors � Document that the patient wants an early refill because she�s going on vacation, or has more pain, etc. Anything out of the usual pattern.
An important difference between addicts and pain patients who are benefiting from opioid treatment is that drug use secondary to addiction tends to constrict the person�s life; they are increasing focused on the drug, while the rest of their lift suffers.
In contrast, appropriate pain treatment expands the person�s life, and lets them function better in their daily life. Talk with patients about their original goals when they started treatment and how close they are to those goals.
Summary Opioids are the strongest available analgesics, and many patients can benefit from using them. Practitioners who prescribe opioids need to be knowledgeable about these drugs, to believe patients unless there is reason not to, and to strive for a balance between adequate pain treatment and prevention of misuse.
An excellent guide to the rational use of opioids in treatment of chronic pain was recently published by Gourlay et al (2005). Guidelines for opioid prescribing can also be obtained from the following websites:
Woolf CJ, Salter MW. Neuronal plasticity: increasing the gain in pain. Science 2000;288:1765-1768. JCAHO Pain assessment and management: An organizational approach. Oakbrook Terrace, IL: JCAHO, 2000. American Geriatrics Society Panel on persistent pain in older persons. The management of persistent pain in older persons. Journal of American Geriatrics Society 50:S205-224, 2002. Daniell, HW. Hypogonadism in men consuming sustained-action oral opioids. J. Pain 3:377-384, 2002. Rajagopal A, Vassilopoulou-Sellin R, Palmer JL et al. Hypogonadism and sexual dysfunction in male cancer survivors receiving chronic opioid therapy. Journal Pain Symptom Manage 2003:26:1055-1061. Galer BS, Coyle N, Pasternak GW, Portenoy RK. Individual variability in the response to different opioids: report of five cases. Pain 49:87-91, 1992. Jamison RN, Schein JR, Vallow S et al. Neuropsychological effects of long-term opioid use in chronic pain patient. J Pain Symptom Manage 2002;26:913-921. Sabatowski R, Schwalen S, Rettig K et al. Driving ability undr long-term treatment with transdermal fentanyl. J Pain Symptom Manage 2002;25:38-47. Fishbain DA, Cutler RG, Rosomoff HL, Rosomoff RJ. Re opioid-dependent/tolelrant patients impaired in driving-related skills: A structured evidence-based interview. J Pain Pall Care Pharmacother 2002;16:9-28. Scimeca MM, Savage, SR Portenoy,RK & Lowinson,J 2000. Treatment of pain in methadone-maintained patients. Mt. Sinai Journal of Medicine 200;67(5-6):412-422. Portenoy, RK. Using opioids for chronic nonmalignant pain: current thinking. Internal Medicine 1996;17(suppl):S25-S31) Mercadante S, Ferrera P, Villari P. Hyperalgesia: an emerging iatrogenic syndrome. I Pain Symptom Manage 2003;26:769-775. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th Edition. 1994. Washington DC: APA Portenoy RK, www.deadiversion.usdoj.gov/pubs/pressrel/newsrel_102301.pdf Accessed 9-18-06. Weissman DE and Haddox JD. Opioid pseudoaddiction � an iatrogenic syndrome. Pain 36:363-366, 1989. AAPM/APS/ The use of opioids for the treatment of chronic pain. Chicago, 1994. Dunbar SA & Katz NP. Chronic opioid therapy for nonmalignant pain in partients with a history of substance abuse: Report of 20 cases. Journal of Pain & Symptom Management 11:163-171, 1996. Passik SD & Weinreb HJ, 2000. Managing chronic nonmalignant pain: Overcoming obstacles to the use of opioids. Adv Ther 17:70-83. Gourlay DL, Heit AA & Amahregi A, 2005. Universal precautions in pain medicine: A rational approach to the treatment of chronic pain. Pain Medicine 6:107-112.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
One more thing---if you are still taking Vicodan along with the naltrexone, you are blocking the effect of the Vicodan with the naltrexone.
It doesn't make any sense to take opiods along with naltrexone.
I hope you get some good responses from your doctors soon!
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Get the pain down with whatever you can. GO for the morphine or whatever they will give. No need to suffer and the pain itself will keep your body ins hyper defense mode and you will not be able to recover near as well. Its not hard to get off them. Its rare you get addicted really and most who have addiction problems know it. If you do .. Be careful. Its still possible if your serious and do not abuse them.
You take what you need to get the pain relief and no more. No need to suffer more than you need anyway..
Thats my opinion and just an opinion. But we go through enough and no need to endure just because
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
We have also used arnica gel from Whole Foods as a topical. It does help with joint, muscle pain.
A chiropractor told me athletes are even using it now.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
posted
I am on neurontin and having great success with it. At first I was on 600 mg a day. 100mg three times (am/noon/afternoon) and then 300 mg at night (few hours before bed).
Just upped my doseage to 900 mg a day. 300 mg morning, afternoon, bedtime. I wasn't sure I was really getting any significant relief and then I forgot to take my meds during a busy day at work this week and I was crippled when I got home. I got back on my schedule and got back to relief.
Dr. says he knows of some people that need up to 2400mg a day to get relief. I don't really get the drugged/groggy effect from it. I hope it works for you.
Posts: 43 | From Upstate NY | Registered: Jul 2009
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I can't remember what dosage of neurontin I was on b/f- perhaps low-ish in comparison- but I didn't experience any side effects mentioned by some.
I will add that a friend of mine who is being treated by a very renown CFIDS/Fibro doc is taking Klonopin + Neurontin. She says her doc says, in addition to helping pain issues, he also believes the Klonopin exhibits neuro-protective properties. (Don't ask me how right now- I can't recall enough about my research days at the moment, oy!)
Edited to add: the gabapentin (Neurontin) can take a couple of weeks to kick in.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
posted
Thanks again for all the replies. You have all been so helpful.
Well I finally spoke to someone. The pain doc never called back so i guess i am not going to be seeing them anymore. They are a very popular pain group that has 3 offices in AZ. I can't believe they call themselves a pain center.
My AZ primary physician called back. I let the receptionist know I was in the ER over the weekend and gave her the tel# of my Lyme doc in NY in case she wanted to speak with them. She knows I am seeing the pain ctr. I am open about all aspects of my healthcare with all of my docs.
She called in a script of Tramadol. I hope it works. I am trying to be optimistic but I was on this a couple of years back.
My PA in NY will be in the office tomorrow and i will give her a call to see where i go from here.
I kind of feel like - DON'T YOU PEOPLE LISTEN? I AM IN HORRIBLE PAIN RIGHT NOW!!! WHAT PART OF THAT DON'T YOU GET?!!!!
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Tramadol didn't work for me. I really hate that the opiods have such a stigma because they really help. The other pain meds just didn't cut it for me.
It's terrible that we can't get the appropriate treatment that we need due to some people's abuse. It doesn't make any sense to me. I mean, do they withold insulin from diabetics, chemotherapy from cancer patients, or zoloft from people with depression?
The studies are available to show that people in chronic pain do well with appropriate treatment. It's like a witch hunt atmosphere to get treatment for pain these days.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter, at her lowest, had to take morphine and valium...I have to say it was hard to be in that position, but it did help her get through a very difficult time.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: Susie R. - I have read not to take any opiods with low dose naltrexone. I think it will make a person really sick to combine them. Naltrexone is used to break people of opiod or drug addiction.
I read about it a while ago - so it's not fresh in my mind but you can look it up on google.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
O.K. so the Saga continues...........................
Still in severe pain today and no help. Tramadol is not working. Not enough neurontin in me, or herbs, or creams.
Called my NY LLMD they said they would prescribe me something but their hands are tied. Taking too many chances across state lines. He told me to go up quicker on the neurontin.
I called my AZ primary.They kicked me to the curb because i am seeing a pain specialist. i told them they won't call me back and that they have not given me any control substance and that they could check on that and they said no.So they pretty much kicked me to the curb.
Called Az Pain again, asked to speak to a supervisor. left a message on her answering machine that i never received a call back, and.....guess what?....... they never called back again. You know, I leave a very respectful message I don't act angry or rude. i don't get why they won't call back.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
posted
O.K. so the Saga continues...........................
Still in severe pain today and no help. Tramadol is not working. Not enough neurontin in me, or herbs, or creams.
Called my NY LLMD they said they would prescribe me something but their hands are tied. Taking too many chances across state lines. He told me to go up quicker on the neurontin.
I called my AZ primary.They kicked me to the curb because i am seeing a pain specialist. i told them they won't call me back and that they have not given me any control substance and that they could check on that and they said no.So they pretty much kicked me to the curb.
Called Az Pain again, asked to speak to a supervisor. left a message on her answering machine that i never received a call back, and.....guess what?....... they never called back again. You know, I leave a very respectful message I don't act angry or rude. i don't get why they won't call back.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I know that this sounds a little out there, but sometimes the way I got results, and I hate to even say this, was to cry or let my voice quiver.
I used to hold it together...kept my cool for a long time...but then one day, when I was beyond frustrated, I just let my gaurd down and cried...and I got results. I could not believe it. So, I used that on occasion...believe me I was NOT acting...I was always on the edge.
So sorry you are going through this...had to fight hard for my daughter's pain meds too.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's really difficult these days. All the doctors are afraid to prescribe any oxycodone or "controlled" substances. It's sad because these medicines actually work.
If you act "crazy" they may interpret it as "drug seeking behavior". It's really difficult. Maybe try another pain management clinic...? It's really bad, though.
The authorities are really cracking down on this right now for some reason. It used to be bad but not this bad. All the doctors seem to be scared to death to give anyone any pain meds.
Even the pain clinics... I know. I've called around in my area. I'm going to have to go out of state. I know this may sound weird but have you tried Excedrin? Sometimes, that actually does help me.
Alternating hot & cold showers & meditation can help, too. Do you think you are herxing due to something you are taking? Sometimes die-offs can make the pain worse.
Try cutting back on whatever may be making you herx.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
PS - I just re-read your initial post. Are you still on LDN? You cannot mix that with pain meds. I don't know about the ones you are taking but I know you can't take that with any opiods.
If it were me - I would stop everything for a few days & then add things back one at a time. I don't know what you are taking but something seems not right.
Maybe it's the combination of things or an allergy, herx? I think these doctors prescribe the kitchen sink & wait until we get worse & worse. I don't think it's a good idea to be taking all this stuff together. It's like do-it-yourself chemotherapy...
That's just my opinion... What do I know? - I'm not a doctor but I do have alot of experience with being ill & dealing with doctors.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Darwin's Dream I want to reiterate this, emphatically. I have zero commercial interests. This is based on personal experience.
Absolutely no arnica product on the market works as well as teh Weleda arnica massage oil. None.
I have seen this for myself, for healthfood store clients, for friends, acquaintances...
Please don't waste your time and frustrate yourself, and remain in such pain which can traumatize you.
I am not saying that the arnica will take it all away. But I am of the hope that the herbs may cut into a lot of it and reduce your need for pain medication, even if it may not eliminate it altogether.
Please take care of yourself and give yourself the best. You need and deserve it, and nothing less.
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I know someone who did well with the bee venom cream. It depends on the source of the pain. It's really hard. When the pain gets really bad - it's hard to think straight.
Sometimes, you have to go for the meds until you can figure it out. I would always try the least invasive things first but I can understand why someone would want to take somehing stronger.
Chronic pain is no joke. It can make you feel like a prisioner in your own body. It literally is torture.
Weleda makes good products.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
Bee venon creme - I'll have to look into that. thank you.
It's been 2 days since I've posted. Yesterday was a bad day for me. I was at a really low point. I just felt like there was no one that would help me - no doctor, I mean. I was hurting all day.
My mind needed a rest from all of it, so I slept and then strung some beads. Good distraction and at least I'll look pretty while I'm sitting in front of the TV!
I got the stuff my LLMD wants me on - SyCircue - mucor racemosus 4x - for circulatory conditions and SyImmune - Penicillium notatum 4x - infection. He said it will take a couple of weeks to help me feel better.
ITMT still hurting. Got Arnica Montana 200ck, hypericum perforatum, nettles tea, mint tea, nettle leaf herb, adrenal support from the health food store - have to order weleda arnica
Called AZ pain - have an appointment for Sat. morning at 8am. I'll see if they even do anything about the pain. I just want to cut the pain cycle until I'm on enough neurontin and this other stuff helps. I'll let you know how it goes.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
chiquita incognita
Unregistered
posted
HI Darwinsdream I was just reading about Boneset in Buhner's book about herbs for abx resistant bacteria. It is apparently a very good pain reliever for joints particularly. Maybe something you would want to read more about?
I haven't reviewed whether or not it appears on these following two sites but they are my most trusted sources:
posted
PS More about boneset from Buhner's book Herbal Antibiotics:
page 74 About Boneset:
..."it settles pain in the bones....Dengue Fever, a virus transmitted by a mosquito (one of the "new" old epidemics now making inroads from Mexico into the southern United States) is in fact attended by intense pain in the joints and bones, head, eyes and muscles. Additionally there are chills and fever, sore throat, catarrh, and cutaneous eruption...."
He says earlier in the paragraph that "Pain in the bones accompanying any ague-like condition is in fact the specific indication for the use of boneset".
I looked Boneset up and that herb looks pretty promising. There is a drawback though. It contains pyrrolizidine alkaloids that may cause damage and or cancer to the liver.
The American Indians used it, so I would say that's a good referral. It's not to be used for more than 6 months. It has been used for malaria - has quinine type properties, fibromyalgia, inflamation, immune booster, and more. So, it may have more positive than negative.
Right now the Syimmune and Sycircue are to help with people that are resistant to treatment -as per LLMD. I have to give this a shot first, but I am def. going to keep this stuff in mind.
You have been such a help to me, as others here have been, I just want to say, You've put a BIG smile on my face!
Today - More jewelry making cause a girl can never have enough! lol
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
chiquita incognita
Unregistered
posted
Hello Darwinsdream! Jewelry making! That sounds LOVELY! I am going out to my rose garden today, buds are just cracking open. It's nice to have the energy to get up and water the garden! Progress! YAY!!
Starting my babs treatment asap,on my own, saying sorry to my doc I am plowing ahead...not smart maybe, I hope it doesn't have any repercussions. Of course I am using herbals and not meds, but that still doesn't mean it can't make some impacts. We'll see hwo smart or how foolhardy my decision proves to be!
Anyway....
PA's yes they are a concern. They do not cause liver cancer fyi, but can cause cancer yes. They more likely cause liver veno occlusive disease, in which the arteries to the liver constrict.
In the case of comfrey, where they are often removed by herbal companies, even if still left intact it takes years for cancer or liver occlusive disease to build up. That is at least my very best understanding, but keep in mind that I am quoting off the top of my head and not based on working with people for long periods of time. My experience is mostly in healthfood stores and some other settings where we worked at a more intricate/involved level, but none of it was long-term and still....caution is always wise of course.
If you have liver issues to begin with, it's always wise to avoid some exposures.
If you have no liver issues, then I would say do it for a few months, see how you improve, then stop.
You can also take milk thistle alongside as toxin antidote. I recommend the Paradise Herbs capsules, these are concentrated 72x and have no binders, fillers, alchohol, etc...available at www.iherb.com
In fact I would recommend that especially if you are concerned.
Still smart to pulse on/off with a PA-containing herb and yes caution is wise.
Glad you mentioned this.
Still you have to weigh the pros and cons in the balance just as is done with mainstream medications.
I don't know how high or low the levels of PA's are with boneset. Buhner writes in his book that the hot liquid (tea) can cause vomiting but otherwise there are no side effects, if that is helpful/indicative. He also says that it is even better at tackling colds and flus than echinacea, is particularly indicated in longterm fatigue and debility, as well as for acute aches and pains in the bones and muscles alike. Pros/cons to think about...
Do you have the link about the PA's in boneset? I would like to see this. Thanks!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
In the beginning, I used to do needlepoint to try to keep my mind off the pain. Distractions do work for a while but chronic pain is not healthy.
How about meditation? There are some good CDs you can get that do brainwave entrainment. These are specific for pain -
posted
Sparkle - Thanks for the link on pain management CD's - Do you find them helpful? I've used mental imagrey Cd's , calming CD's, but never these kind - interesting.
So, the saga continues.........................
Finally got an appointment with pain doc. I did get a call from the supervisor and she did apologize to me for not calling me back or my LLMD back.
Saturday i went in told them I just can't take the pain anymore so they put me on Hydrocodon acetminophin 10 - 325 (which mean 1000 vicodan) I can add another tylenol if needed. I didn't even know it came in this strength.
So, I went from 750 - 1000. The plan is I am to go on these until the i get on the proper dose of neurontin, and the lyme pain gets a bit better.
I had to sign something saying that the pain doc was going to be the only place i would be getting pain meds from. I don't have a problem with that as long as they educate themselves on Lyme.
So far, they are only working a little bit better than the other strength, but I guess that's better than nothing.
I'm sure all the herbal and homeopathic remedies you all suggested will help also to get me back on my feet again.
I have to say, in all the years I've had the lyme. this is the worst pain i have felt. My body just can't take the severe herxs like it used to. My doc also should have known that. I've been seeing him for at least 10 years now.
Thank you all for your help. Without you I really would have panicked. You really helped me get through this really difficult time.
I hope this topic helped others, as well. And I hope the pain others are felling are helped by the remedies mentioned above.
Love, hugs and ice cream cake for everyone!
Donna
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic