meem
 

If you are having chronic pain, have a serious talk with your doctor. It is very hard to heal when you live in chronic pain. It has very damaging effects on your immune sytem.

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Sonoma County Lyme Support
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I sent a post out a while ago asking others if they had tried methadone for pain and the response to this method was quite positive.

I have not taken it myself (yet).

I was looking more for something I can take at the time when the pain is unbearable as opposed to keeping something in my system all of the time.

I take morphine when I can't stand the pain. However, I try everything I can before I resort to the morphine. Usually by then though, it's pretty intense and nothing really works. Usually by the time it gets to morphine pain, the drug makes me really drowsey and I go to sleep.

In the past week, I've started going for acupuncture and actually, it seems to be helping. I haven't taken so much as an advil during the day for pain during the day. I was going through a bottle a week prior to this. The pain is *still* there, simmering away, but it's not bringing me to my knees like it normally does.

Also, I started taking gabapentin at night again for nerve pain and I think that helps too. Also, getting a good night's sleep seems to help overall.

Do a search on my name and you'll be able to read the replies to my pain questions too.

Good luck!!! I'm sure you'll find that there are lots of possibilities.

Sleepy!

Please share with us what type of pain you are experiencing. As riversinger said, there is different treatment for different types of pain. If your pain is from inflammation, you want to stop inflammation. If it is nerve pain, you target the nerves.

There is no magic way to control all types of chronic pain.

I have people in my group who are now off vicodin, methadone, and percocet because the mangosteen works so well for them.

It borders on the unbelievable, I know. But it's the truth.

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oops!
Lymetutu

 

Can you try to describe how and what the pain feels like?

For example, my pain includes:
* sharp pain in my upper back around my shoulders and shoulder blades, that feels like my muscle is being cut with a knife
* Muscle ache/tightness/burning in my thighs like I exercised too much
* Sharp, pinching pain in my left hip
* Deep ache along the bones in my fingers and inside my wrist that worsens with use

Ideally, you can find a doctor who understands pain treatment and Lyme. If you can describe the pain to the doctor, the doctor can help create a treatment plan.

Personally, I worked with a pain specialist who didn't believe the Lyme dx. But he still helped me get a good pain treatment plan. It eventually became too stressful to deal with his disapproval of my Lyme treatment though, so I had to stop seeing him. But I know I couldn't have had the pain relief without him.
 

You really need to talk to your doctor about this. If your doctor won't help you, make sure you get that documented in the chart, the refusal, and see somebody else.

There are real consequences to the undertreatment of pain.

Methadone, which Sleepy mentioned, is a synthetic opiod. It is long acting, avoiding some of the problems of the shorter acting opiods, and more appropriate for chronic pain. There is also oxycontin, which I take, and MS-contin, as well as others.

Each person's system responds differently, so you need someone knowledgeable to help you find the treatment protocol that will work for you.

Here is a medical abstract you might take to your doctor.

1: Pain Med. 2001 Sep;2(3):252.

(230) evidence of a clinical neuroendocrine syndrome in severe chronic pain.

Tennant F, Hermann L.

Veract Intractable Pain Centers.

Severe, chronic pain is postulated to produce an extended stress state with overstimulation of the autonomic nervous system and hypothalamus-pituitary-adrenal axis (HPA). To determine if this postulate is valid, we studied 60 patients who were consecutively admitted to ambulatory treatment for severe, chronic pain. All had chronic pain for over one year and characterized their pain as being constantly present, interfering with sleep, and debilitating to the point of being bed-or house-bound without opioid treatment. All were referred after failing multiple pain treatments, and all were being treated with low dosages of various oral opioids which reported to be inadequate. To evaluate these patients, pressure and pulse rates were determined at monthly intervals for four consecutive months. A morning blood specimen was taken to determine serum concentrations of the adrenal hormones, cortisol, pregnenolone, dehydroepiandrosterone, and androstenedione. Fifty-five (91.7%) subjects demonstrated hypertension above 130/90 mmHg and/or tachycardia above 84 beats per minute. Fifty-one (85.0%) demonstrated one or more abnormalities of serum adrenal hormone concentrations. All 60 subjects (100%) demonstrated at least one cardiovascular or adrenal hormone abnormality. This study suggests that severe, chronic pain may be associated with a neuroendocrine syndrome that may, itself, have clinical complications, and adequate pain control should be such that identified neuroendocrine abnormalities are normalized.

PMID: 15102290 [PubMed - in process]

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Sonoma County Lyme Support
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Bankruptcies Of The Heart: Secondary Losses From Disabling Chronic Pain

Summary of paper presented by Marcia E. Bedard, PhD, at the 1998 Society for
Disability Studies Annual Meeting

My current research, which I have summarized here, is focused on the theory of
"secondary gain" as it applies to chronic illness, and specifically chronic pain.

The basic idea behind this theory is that chronic pain is psychological and persists only because the person suffering from it enjoys one or more "rewards" that accrue from their pain. These so-called "rewards" may be emotional, such as sympathy ? or monetary, such as disability payments.

Either type of "gain," is said to reinforce the pain, causing partial or complete
disability. Although this concept originated with Freud decades ago it has never been
rigorously examined.

Given the prevalence with which it is applied to persons disabled by chronic pain though, we must question its validity until it has been scientifically proven to hold true.

In the interim, we need to take into account the numerous "secondary losses" brought about by chronic pain as well.

For more than 30 years now, the majority of psychologists have been shifting their
emphasis toward treating chronic pain as a perceptual and psychological phenomenon rather than a true medical problem.

One of the major theorists in this field was Wilmer Fordyce, who developed an influential social-learning model of chronic pain based on behavioralism about 20 years ago. Fordyce believed that pain is behavior designed to protect oneself or solicit aid and that pain increases, i.e., this behavior is strengthened, when followed by desirable consequences.

Unlike many of his predecessors who believed chronic pain was purely psychogenic in origin, Fordyce believed that all pain began as acute pain from actual tissue injury and under normal conditions, the injury healed in a certain period of time.

However, Fordyce argued that if pain persisted beyond the normal healing time in an environment with secondary gains, the pain would become chronic. He gave as examples of secondary gains, or "desirable consequences" of pain the following factors that he believed reinforced pain and disability.

The Four Most Commonly Referenced Secondary Gains

The myth is that persons disabled by chronic pain generally enjoy:
1) attention and sympathy from family, friends, and physicians
2) release from task responsibilities at home and at work
3) narcotic medications presumed to induce constant euphoria
4) monetary compensation which approximates actual wages

The Four Least Commonly Recognized Secondary Losses

The reality is that persons disabled by chronic pain generally endure:
1) anger/trivialization/rejection by family, friends, and physicians
2) complicated/frustrating tasks dealing with new bureaucracies
3) agonizing pain without medication; unpleasant side effects with medication
4) denial of disability benefits to which they are legally entitled

My thesis is this: not only is psychogenic chronic pain rare, but more importantly, few people disabled by chronic pain regularly receive secondary gains.

My evidence for this assertion comes from several sources:
literature cited in the paper I presented at the 1998 Annual Meeting of the Society for Disability Studies (SDS); information about personal experiences sent to me by hundreds of chronic pain patients, as well as physicians and psychologists who specialize in treating chronic pain via numerous Internet lists I subscribe to and websites I monitor; and finally, my own experience over the past six years as a chronic pain patient.

Attention and sympathy from family, friends, and physicians is, sadly, in short supply for chronic pain patients. The wide range of family problems experienced by these patients include, but are not limited to:
guilt over not being able to carry one's fair share of domestic tasks;
anger at family members who deny the reality and/or severity of the patient's pain; frustration because the pain is so great it makes playing with one's children or sexual intimacy with one's partner torturous or impossible;
and anxiety about the financial strain that stems inevitably from disabling chronic pain.

Given that nearly every book or magazine dealing with chronic pain has a section on coping with these and other family problems, it is apparent that family attention and sympathy are not as abundant as we are led to believe by secondary gain theorists.

We must also not forget that many chronic pain patients have no family, or none nearby, or their families deny or trivialize their pain and disability. Denial, trivialization, and eventual abandonment are also common reactions of friends or co-workers.

The loss of former friends is another emotionally painful aspect of disabling chronic pain.

Attention and sympathy from physicians may be absent at the outset for chronic pain
patients, but if not, it generally wanes as the patient fails to respond to one after another medical interventions, leaving most doctors feeling frustrated and helpless.

Patients with incurable, irreversible, and progressive conditions, such as degenerative disk and joint disease, may have a difficult time even finding a doctor who will take them as a patient.

Consequently, many chronic pain patients are literally "fired" by their treating physicians a year or so after numerous painful and invasive treatments have been tried and failed, and left on their own to try and find another doctor.

Unless such patients are able to find a physician who can actually help them control their pain, they are forced to live an unbelievably miserable existence that all too frequently ends in suicide.

The second most common secondary gain is release from task responsibilities at home and work. It may be that those living with spouses or significant others are relieved from some or all of their domestic chores some or all of the time, but I question whether this is perceived as a "reward" by most persons disabled by chronic pain.

In my own experience and research, the guilt of watching loved ones at home and colleagues at work become overburdened by these extra tasks is hardly rewarding and takes a heavy toll on one's self-esteem and sense of self-worth.

Furthermore, as time goes by, resentment toward the disabled person generally increases among those picking up the slack, increasing interpersonal friction. Any release from former task responsibilities is also offset by the increase in new task responsibilities on becoming disabled.

There are numerous forms to be filled out and reports to be completed for the Americans with Disabilities Act (ADA), leaves of absence and state disability insurance (SDI).

If the chronic pain resulted from a work-related illness or injury, there is the bureaucratic morass of worker's compensation to navigate. And if the disability lasts six months or more, there is the process of applying for Social Security Disability Insurance (SSDI).

The amount of paperwork and reports varies, but in my own case, which was relatively simple, there were hundreds of pages of forms and reports I had to submit over the two years it took just to get my SSDI approved, and that was with the help of an attorney.

This, however, was nothing compared to what I went through with my group long-term disability (LTD) insurance. The forms, reports, and correspondence on that claim fills an entire drawer of my filing cabinet, and that claim is still unsettled.

Narcotic medications are the third most commonly referenced secondary gain. The fact that they are considered a gain at all is telling ? it is obviously presumed that they induce euphoria, yet any pain patient who has taken them regularly will tell you that not only do they do nothing but take away the pain so one feels relatively normal for awhile, they also have extremely unpleasant side effects.

Yet although 34 million Americans suffer from chronic pain and most are significantly disabled by it, only a small minority receive any type of narcotic medications for pain relief and these are usually inadequate to relieve the pain ? a situation which frequently leads to suicide or requests for physician-assisted suicide.

The irony here is that in many cases these are the only medications that will allow the patient to return to part-time or full-time work.

The fourth commonly referenced secondary gain is the supposed monetary compensation which approximates actual wages that persons disabled by chronic pain receive.

If this fallacy were not so tragic, it would be laughable, because of all the secondary losses emanating from disabling chronic pain, the economic losses are utterly devastating.

Even if one is fortunate enough to have medical insurance, there are numerous expenses detailed in my paper that are not covered by any type of insurance, nor are they even tax-deductible.

So where did the idea come from that work-disabled persons "have it
made" financially?

I think it is because there are ostensibly four different types of "safety
nets" when one becomes disabled: state disability insurance (SDI), worker's
compensation (WC), Social Security Disability Insurance (SSDI), and group or private long-term disability (LTD) insurance.

LTD insurance is a type of coverage which very few people have - primarily highly-paid professionals ? yet this is the only kind of insurance benefit that ever approximates one's pre-disability income, generally paying half to two-thirds of the claimant's lost income as benefits.

However, if the disability is from chronic pain, more often than not the claim for any type of benefits will be disputed and, in too many cases, denied, leaving the disabled person to face bankruptcy, poverty, and eventually homelessness unless one is exceptionally lucky.

So common is it for persons disabled by chronic pain to be denied benefits to which they are legally entitled that numerous lists and websites have been established on the Internet solely for the purpose of providing information and support to those claimants wrongfully denied.

To describe this situation as scandalous is an understatement, yet millions of American workers have been lulled into false security believing that if they should have the misfortune of becoming disabled, these safety nets will be there to cushion them from the full brunt of economic loss.

In summary, divorce, loss of career, financial ruin, homelessness, loss of friendships and social life, loss of physical mobility, the severe stress of protracted litigation, and in some cases physical disfigurement are just a few of the kinds of secondary losses commonly incurred by persons disabled by chronic pain.

Obviously it is impossible to place a price tag on any one of these tragic losses. So the concept of secondary gain is put forward instead, turning the truth ? the reality of the disabled person's existence ? upside down.

This is, in my estimation, nothing short of institutional moral larceny: a victim-blaming ploy that serves primarily to justify the reprehensible actions of insurance companies, opposing attorneys, and many of the private, county, state, and federal bureaucracies purporting to "assist" persons with disabilities.

Secondary gain, or any other concept built on myths and stereotypes which contribute to ongoing discrimination against persons disabled by chronic pain needs to be exposed for what it is ? unconscionable in a democratic society.

What is desperately needed at this point in time is a massive public education campaign regarding the enormous losses, tangible and intangible, that accompany disabling chronic pain including, but not limited to, bankruptcies of the heart.

Copyright � 1998 by Marcia E. Bedard, Ph.D., Women's Studies Program, California
State University at Fresno

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Sonoma County Lyme Support
[email protected]
 

Seems LLMD can only give to me 2 weeks at a time and then he must see me.

It's great stuff, wonderful. Works for the pain (nothing else did). I'm told it is not addictive. That's a big plus in my books.

The only side effects I notice with Methadone are clumsiness (more than usual) and seeing double (no, I don't drive at all right now).

Methadone has made my life much more liveable. I have more quality moments now.

Try it, Sleepy. I was hesitant too.

I am dealing with chronic pain every day as many of you are. Can someone tell me more about how Mangosteen Juice works to help pain and how you go about getting this!

Thanks,
Ann