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How would you deal with this?? How would you deal with this??

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Unread 03-21-2003, 09:00 AM
How would you deal with this??

I am sooooooo aggravated at the moment and don't know how to handle this situation without making it worse. Maybe some of you chronic pain sufferers (FMS/MPS) can give me some advice.

As most of you know, I changed GPs about 6 weeks ago. Thought this new doc was wonderful. Agreed with the diagnosis of MPS/FMS....Rx Ultram and Parafon Forte for that and said he had no problems continuing those for as long as I needed them. He also did bloodwork to check thyroid, cholesterol, sugar etc. and gave me an appetite suppressant to help with weight loss. Wanted me back in approx. 1 month (after I finished the RX of appetite suppressants) to check weight loss progress.

Fast forward to this week. I've only been taking 1/2 tab of the appetite suppressant so, have about a weeks worth left. So, I make an apt. for the 27th. However, don't have enough Ultram or Parafon to get me through the weekend and ask them to call in a refill (went through a 30 day Rx in 45 days). The nurse says that the doc is out of town until Monday, BUT they will talk to him at some point in the day and to check with the pharmacy around 3:30. I call the pharmacy at 4:00 nothing...5:00 nothing....5:45 still nothing.

Call back to the dr. office this morning and ask the same nurse if she asked the doc about it and she simply says "no." She then precedes to tell me that she doesn't think that he will refill them without seeing me, but to call back around 3:00 today. GRRR!! I don't know if the doc didn't call them yesterday or what. You would think she would have had the coutesy to call me and tell me that though. And WHY wouldn't he refill them without seeing me??? He isn't there for me to see this week....I have an appointment next I suppose to just be in pain for a week?????????????

I don't know if the problem is with the doc or his staff, but I'm ticked off. Why is it that people with chronic pain are so often treated like drug addicts???? I was diagnosed with a chronic doesn't just disappear. And it isn't like I used too many of the meds.....heck they lasted me 2 weeks longer than expected! And YES, I'm going to hound them about a refill because every day that I don't have them I take the chance of going into a flare and not being able to control the pain.

ARGH!! I am sorry to vent like this, but I KNOW that some of you sisters know exactly where I'm coming from. The weather is wet here so, I am having discomfort and trying to ration out my meds so I won't be totally without. That in itself makes me stressed -- bringing on more pain. How do I approach this w/o giving off the suggestion that I'm a "drug seeker"?
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Unread 03-21-2003, 11:17 AM
How would you deal with this??

((((Sweetie)))) I can really feel for you since I've been in your shoes many times

I think that you are right to hound them about this: you need these meds to control your chronic pain!! If they really won't refill without seeing you, and since your own doc is out of town, is there a possibility of seeing another doctor in the practice? I know I've done that often, to either get prescription refills or to address new pains.

Sending lots and lots s your way. Hopefully your doc will call for a refill and you'll be ok.
Unread 03-21-2003, 11:52 AM

Sometimes a pharmacist will give (sell) you a few tabs just to tide you over until you see your doctor and can get new prescription.

Mary D.
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Unread 03-21-2003, 12:43 PM
How would you deal with this??

I'm sorry that you're having a difficult time getting your meds. I think you're doing the right thing by being persistant.

The only time I had a problem was when my doc accidently wrote the wrong date on my duragesic patch prescription. He than wrote over the number instead of writing a new prescription. Of course it was 4:30pm on a Friday when I dropped off the prescription and the pharmacy gave me a devil of a time and wouldn't fill it until they got ahold of the doctor.

The pharmacy was going to give up when they had difficulty reaching the doctor or his nurse and I stood at the counter and wouldn't leave until they got ahold of somebody! I was in tears as I had my last patch on my butt at the time and need to change it on Saturday.

Thru persistance they finally were able to reach somebody. However, if I hadn't stood at that counter and been persistant they would've given up and told me "too bad, so sad".

At the time I really didn't give a hoot what they thought about me. I knew that I needed my prescription to get thru the weekend. If they thought I was a druggie, I really didn't and don't care. I'd like to see how they would feel to have to walk a mile in our shoes. I'll bet they wouldn't last 5 minutes!

Stand your ground! Good luck!
Unread 03-21-2003, 02:38 PM

Thanks Dany, Mary and Kim! I know I can always count on some sisters to have been/be in the same situation.

The receptionist from the doctor's office (I actually like her -- unlike his dingy nurses) called me back around 1:30. I think I have identified part of the problem. I had mentioned to the nurse that when I take the max amount of Parafon, I get really nauseated. I had told her that was something I wanted to discuss with the doc (at my appointment next week). I guess she thought I was wanting him something different called in and that was where the problem was. As it turned out, they called in Flexeril instead of the Parafon....but only a 10 day supply. I have tried Flexeril in the past and wasn't real thrilled with the results. However, this was BEFORE the MPS/FMS DX and before the hyst.

That leads me to more questions for you dear sisters...especially those with MPS/FMS.... Any of you take muscle relaxers on a continuing basis? What kind has worked and not worked? I am especially interested in talking to someone that has taken Soma for an extended length of time. I had wonderful results with that, but for some reason the doc doesn't want to give it to me long term. I would love to be armed with some info to help convince him otherwise when I go to my appointment next week.
Unread 03-21-2003, 11:29 PM
How would you deal with this??

I'm glad that you were able to get something called in till you can see the Dr. I know how you feel - I have chronic pain from a few different problems I am suffering from.
I dont have MPS or FMS so I cant be of help there. But I do take muscle relaxants - I take robaxin 750 mg. for muscle pain & it helps a lot. I am going to a Rheumy Dr. soon to find out if I have fibromyalgia. I am sure some of the others will be along soon.
Again, I'm glad that everything worked out ok for you 's

Unread 03-22-2003, 10:29 AM
How would you deal with this??


I tried to look up Robaxin in my pill book and couldn't find it. Could it be listed under another name? I've never heard of it, but would like info on it. Thanks and good luck at your rheumy apt.
Unread 03-22-2003, 04:15 PM
How would you deal with this??

I replied to your other thread but did some more digging & turned up some good info on treating FMS w/Soma I was thinking you could print some of this off to share w/ your Dr?!? Hopefully, it will help him understand better:

Senate Bill 402 - California, 1997 - Pain Patient's Bill of Rights
Summary:. Existing law, the Intractable Pain Treatment Act, authorizes a physician and surgeon to prescribe or administer controlled substances to a person in the course of treating that person for a diagnosed condition called intractable pain, and prohibits the Medical Board of California from disciplining a physician and surgeon for this action. This bill would establish the Pain Patient's Bill of Rights and would state legislative findings and declarations regarding the value of opiate drugs to persons suffering from severe chronic intractable pain. It would, among other things, authorize a physician to refuse to prescribe opiate medication for a patient who requests the treatment for severe chronic intractable pain, require the physician to inform the patient that there are physicians who specialize in the treatment of severe chronic intractable pain with methods that include the use of opiates, and authorize a physician who prescribes opiates to prescribe a dosage deemed medically necessary.

by Marcia E. Bedard, Ph.D_* CNP, pain that lasts six months or more and does not respond well to conventional medical treatment, affects more people than any other type of pain. Thirty-four million Americans suffer from chronic pain, and most are significantly disabled by it, sometimes permanently. (1, 2, 15)* The economic impact of CNP is staggering. Back pain, migraines, and arthritis alone account for medical costs of $40 billion annually, and pain is the cause of 25% of all sick days taken yearly. The annual total cost of pain from all causes is estimated to be more than $100 billion. (2, 4, 15)* Despite the magnitude of suffering, CNP remains grossly under treated in most patients. The reasons for this are: the low priority of pain relief in our health care system; lack of knowledge among both health professionals and consumers about pain management; exaggerated fears of opioid side effects and addiction; and health professionals' fear of medical board and DEA scrutiny, even when controlled substances are used appropriately for pain relief. (2, 13, 14, 15)* Contrary to common fears, numerous studies have shown addiction is extremely rare in pain patients taking opioid drugs, even in patients with histories of drug abuse and/or addiction. CNP patients will develop a physical dependence on opioid drugs, but this is not the same thing as addiction, which is an aberrant psychological state. (2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 13, 14)* Unrelieved pain has many negative health consequences including, but not limited to: increased stress, metabolic rate, blood clotting and water retention; delayed healing; hormonal imbalances; impaired immune system and gastrointestinal functioning; decreased mobility; interference with appetite and sleep, and needless suffering. CNP also causes many psychological problems, such as feelings of powerlessness, hopelessness, low self-esteem, and depression. (12, 15, 16, 18, 19)* Undertreatment of CNP often results in suicide. In a recent survey, 50% of CNP patients had inadequate pain relief and had considered suicide to escape the unrelenting agony of their pain. Unrelieved pain also leads to requests for physician-assisted suicide, another indicator of pain's harsh impact on the quality of life of many patients and their families. (7, 8, 13, 14, 15, 16,)* Discrimination against CNP patients is pervasive in the American health care system. Women, racial/ethnic minorities, children, the elderly, worker's compensation patients, and previously disabled patients (e.g., those with cerebral palsy, or who are deaf, blind, amputees, survivors of childhood polio, etc.) are at great risk for under treatment of their pain, even though patients belonging to one or more of these groups are the vast majority of all CNP patients. (2, 13, 17)* CNP patients with severe, unrelenting pain from permanent structural damage to the neurologic or musculo-skeletal systems are often subjected to expensive and unnecessary surgeries and other painful invasive procedures. Arachnoiditis and reflex sympathetic dystrophy are the most common causes of severe CNP. Other common causes include: post-trauma, adhesions, systemic lupus, headaches, degenerative arthritis, fibromyalgia, and neuropathies.


The Nursing Practice Act, Section 2725, states that the registered nurse provides "direct and indirect patient care services that insure the ... comfort ... of patients. 11 Proper management of patient's pain is a nursing function incorporated within the registered nurse's role as a patient advocate (Standards of Competent Performance, Section 1443.5(6) of the Nursing Practice Act). The Board of Registered Nursing endorses pain management guidelines established by the World Health organization, the U.S. Department of Health and Human Services - Agency for Health Care Policy and Research, and the American Pain Society. The nursing function of appropriate pain management includes, but is not limited to: - ensuring informed consent for pain management. - assessing pain and evaluating response to pain management interventions using a standard pain management scale based on patient self-report. - educating staff, patients and families regarding the difference between tolerance, physical dependence, and addiction in relation to pain relieving medications, and the low risk of addiction from long-term use and/or high doses of opiates for pain relief. - educating patients and families in a culturally competent manner regarding appropriate expectations for pain management. - recognizing that prn medications may be given around-the clock. - intervening to treat pain before the pain becomes severe. - using non-drug interventions to assist in pain alleviation. - using knowledge of equianalgesic dosages to maintain both patient safety and pain relief as routes and types of ordered drugs change. - documenting pain assessment, intervention, and evaluation activities in a clear and concise manner. - intervening to minimize drug side effects. - implementing quality assurance/improvement standards to monitor the pain management program.
Management of chronic pain. [Review] AB:
Management of chronic pain. [Review] AB - The principles of chronic pain management in the elderly are the same as in younger people; whenever possible, the cause of the pain should be identified and eradicated. However, older people are more likely to suffer pain from incurable conditions, and the emotional component of the suffering may be considerable. Treatment options include analgesics, opiates, antidepressants and anticonvulsants as well as psychological strategies, physical strategies such as exercise and transcutaneous electrical nerve stimulation (TENS), and surgery. Improvement of function may be a more important treatment goal than relief of pain. [References: 15]

Are muscle relaxants good for CFS/FMS?

That depends on what they are and how often they are used. If they are benzos, then they are potentially harmful. If they are Soma, Baclofen, or Relafen, then the hope is that they are used only for the relaxation of the muscle spasms, instead of being used as though they were as safe as aspirin. In any case, too frequent use of muscle relaxants will cause us to develop tolerance to them, so that we will need more and more to do the job that one used to do.

Narcotics are the only thing that works for my CFS/FMS pain:
Not one of the CFS or FMS specialists consider narcotics or heavy-duty analgesics to be appropriate treatments for our pain. This is not because the AMA or the DEA is after them. It's just because those drugs cause more harm than good. As central nervous system depressants, they CAUSE depression by themselves. They may also cause us to develop tolerance to them. CAUTION: Never stop taking narcotics without medical help! You may be physically addicted to them and stopping them without help is dangerous. What else is available to deal with the pain? Please check out my remission page. Additionally, Neurontin, at doses of at least 900mg a day, can be a miracle drug for some people.
MedicationsA number of medications have been used to improve sleep in fibromyalgia. The oldest of these is amitriptyline (Elavil), a medication first used to treat depression. Amitriptyline and related medications probably work by improving the quality and depth of deep sleep rather than by any effect on mood. Although it probably works as well as any of the other medications, amitriptyline causes frequent bothersome side effects such as weight gain, dry mouth, daytime tiredness, and trouble concentrating more often than other medications with durations of action more appropriate for sleep so I usually try these other medications first. They include trazodone (Desyrel), diphenhydramine (Benadryl), cyclobenzaprine (Flexeril), alprazolam (Xanax), and carisoprodol (Soma).
In the US, all chronic pain conditions are seriously undermedicated. Chronic pain conditions like FMS, certain kinds of low back pain, and migraines, where there are not hard physical findings such as abnormal X-rays, tend to be the most undertreated. But the problem is not linited to these conditions. A recent study found that 1/3 of terminal cancer patients were not prescribed proper pain medication and therefore did not get relief. In the study of cancer pain, three reasons were given by physicians for why they had not prescribed more medication: 1) Despite the fact that these were *terminal patients in the last few months of life*, physicians were afraid of creating an addiction. 2) The doctors were afraid of harrassment by the Drug Enforcement Administration if they gave out too many narcotic prescriptions. The DEA keeps a very close eye on doctors, because a few rotten eggs have gone into the 'prescription mill' business of providing narcotics for street addicts. 3) The most common reason: physicians simply didn't ask their patients if they were in pain. They assumed that the patient would ask them if they needed help.
This study also found that physicians often didn't prescribe the medication correctly and that medications were often inappropriately withheld by nurses (this isn't a rant only against doctors. Unfortunately my own profession is also ill-informed.) This study is alarming, because terminal cancer is a condition where severe pain is expected. Imagine, therefore, what other people in pain must be facing. And in fact, other studies have found similar results, with pain relief in children being another problem area. This, then, is the atmosphere in which a patient with FMS must seek treatment. But people with FMS have additional problems. Often, we have been complaining of pain for years. Many of us who have had pain that was more severe in one area such as the lower abdomen or low back have seen many doctors and had countless tests to rule out serious problems. We may even have had unnecessary surgeries: women with FMS have frequently had laparoscopies to find endometriosis. Others of us have been told that we had carpal tunnel syndrome or disorders of spinal disks. When treatment for these conditions don't work, or when nothing is found on tests, physicians often stop believing that we have pain at all. Many times, people with FMS have been told that they are hypochondriacs or just seeking attention and told to get psychiatric help. Worse, some of us have been labelled as drug addicts and had our medical records so marked. Some of us have even been verbally abused by physicians.

don't give up! It IS possible to get fair, even good pain relief, in fibromyalagia syndrome.

First, you need a physician who knows about FMS and takes it seriously. The best way to find a doctor knowledgable about FMS is to check with your local FMS support group or ask for recommendations over on (which is also the fibromyalgia mailing list; they're gated.) If you have no idea how to find a local support group, you don't know how to find, or if you just don't know much about fibromyalgia syndrome in general, I have a very *long* FAQ I can send you by e-mail. If you request it, I can also send you an article I wrote called "Dealing With Doctors When You Have Chronic Fatigue Syndrome". Even though the article is about CFS, the information is very applicable to folks with fibromyalgia syndrome. In it, I talk about how to get physicians to take your condition seriously, how to get your medical records, how to search medical databases, books you should buy and many other things. Often, rheumatologists are the doctors who take care of people with FMS and generally they are pretty well informed. You may also want to consult a physician who specialzes in pain management if you haven't already. Most people with FMS seem to do best with a combination of therapies, which may mean combining non-drug treatments with medications, or combining several different kinds of medications or both. Pain specialists have access to not only many drugs but also to many non drug therapies as well. If you can find one who is knowledgable about FMS, pain specialists can be quite helpful in developing a multi-factor treatment. Usually you need a referral from another physician to see a pain management specialist.
Pain medication options include: Muscle relaxants: This is often another way of saying 'benzodiazepine' (see sleep med section above.) However benzos can be helpful in dealing with muscle spasms. There is also an anti-depressant called Flexeril that many people with FMS find helpful because it has genuine muscle relaxant effects. This catagory also includes carisoprodol (Soma, Rela) which basically metabolizes to a tranquillizer called meprobamate. Meprobamate is addictive; however carisoprodol does have muscle relaxant effects via the central nervous system and so may be helpful to some people with FMS.
Ultram (tramadol): Some people with FMS swear by it. It has the advantage of not producing the buzz associated with opiates and benzodiazepines. This can be a big plus with people who have brain fog. Ultram was originally promoted as a non-addicting alternative to opiates. However, a number of cases of addiction have now been reported in the literature, so this is no longer considered true, although it may prove less addictive than opiates: the jury is out on that. Tolerance appears to develop pretty quickly and people *definitely* go through withdrawal when they get off it. It also causes nausea in a significant percentage of people. Myself, I found that even taking 100 mg. of Ultram three times a day didn't help my FMS pain nearly as well as 1 Tylenol #3 at night, although I also didn't have the nausea often associated with it.
I see a great many patients who have sustained soft tissue injuries in automobile or slip and fall accidents. Many of them, perhaps 30%, claim that tylenol, advil, Tylenol 3, or Darvocet have been of no help. I am then faced with deciding whether to give them hydrocodone and for how long and in what dosage. I taper the dosage from three 7.5/day down to two 5mgm/day over a three to five month period, and usually during the last two months, I can get them to take an anti-inflammatory medication. I know that some of the patients abuse the drugs, but I feel that to withold medication from the larger number would not be proper. It is frustrating and maddening, wondering who's lying or not, on a daily basis. I wound up fighting for ten minutes with someone about four Soma's a day versus three a day, and suddenly felt that it was an absurd fight. Stewart E. Altman, MD
TREATMENTS (Medication and Other Treatments) Medications Medications effective in the treatment of FMS appear to work mainly through an effect on deep sleep (Goldenberg 1986). They should be started at the lowest possible dose and increased every few days to a week to maximum relief of daytime FMS symptoms without unacceptable side effects. I allow patients to fine-tune the dose themselves. The starting doses and ranges of several medications useful in the treatment of FMS are listed in Table 1 in roughly the order I tend to try them. Amitriptyline is an effective medication for FMS but it has frequent daytime side effects attributable to its long half life such as weight gain, dry mouth, and cognitive impairment, so I usually start with the shorter-acting medications. It is often necessary to try several different medications in succession and sometimes in combination before finding a regimen that works well. Tolerance often develops to the sedative effect of many of these, necessitating one or two dose increases after an initial good response to maintain efficacy. When switching from one medication to another, I recommend adding the second while continuing the first to try to maintain sleep quality and avoid exacerbating FMS symptoms unless problems with the first medication preclude this approach. Once improvement is noted or if side effects on the combination develop, the patient is instructed to begin tapering the first medication slowly. If it is necessary to taper the first medication while increasing the second, dose changes should not be made in both medications at the same time. Leaving a few days between an increase in the dose of one medication and a decrease in the dose of another makes it possible to tell whether it is the withdrawal of the first medication or the addition of the second that is causing any problems that develop. Imipramine, steroids, and non-steroidal anti-inflammatory drugs (NSAIDs) have all been found to be no better than placebo for FMS (Goldenberg 1993). While NSAIDs might be expected to be helpful if only for the analgesic effect, their tendency to cause some insomnia may cancel out the expected benefit. Narcotics and benzodiazepines other than alprazolam block stage 4 sleep and so should be avoided. While they may help symptomatically, they often make the patient feel worse the next day and may prevent her from ever being able to get to the point of being pain-free most of the time. Tramadol and acetaminophen do not seem to interfere with sleep and are therefore a better choice for analgesia. Fluoxetine was found in one study to be ineffective except to symptomatically treat associated depression (Wolfe, 1994). A second study found it effective, especially in combination with amitriptyline (Goldenberg 1996), but this may have been because fluoxetine increases amitriptyline levels which weren't monitored. A second serotonin re-uptake inhibitor, citalopram, was ineffective for FMS symptoms (Nxrregaard 1995). There are many other unstudied "alternative" drug and herbal treatments, some of which may in the future be proven effective in controlled studies. I do not recommend these since they are as yet unproven scientifically and may have unrecognized toxicities, but I have given up trying to dissuade patients from trying them as long as it is not in place of conventional therapy.
Unread 03-23-2003, 10:05 AM
How would you deal with this??

Thanks Sheri!! I will be printing this.
Unread 03-23-2003, 10:38 AM
How would you deal with this??

It has been my experience that relaxing the muscles has been quite helpful - in my case it hasn't taken the pain away, but it has made it much easier to deal with and really does take the edge off. Since I have had this condition for so long (24 years) and have never had a remission, I haven't been comfortable using medication for long periods of time nor has my doctor, who specializes in CFS and FM, wanted to see me on long term meds. (Let me tell you I would change my mind in a nanosecond if I found something that worked even 75%.) That's why I learned deep relaxation techniques. I used music while I learned and now have a couple of CDs that my body responds to almost immediately when I listen to them, particularly if I use headphones to block out distractions. I know it takes time and effort to learn techniques, but it can really be a helpful adjunct to any other therapy you choose, or can even be used alone.


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