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all new this the way it's gonna be? all new this the way it's gonna be?

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Unread 04-15-2003, 04:27 PM
all new this the way it's gonna be?

Oh ((((Dawn)))),
I came to terms with this fact a while ago but I still have days that I ball my eyes out for all I suffer & have lost. My Rheumy told me that my Hyst & additional surgeries were what most likely bought on this syndrome Do I have regrets...YES but then I look at my Path report & the precancerous cells on there make me think otherwise...I too suffer from Depression Dawn, who wouldnt be depressed with all this pain, continuing DX's, complications..ect. I see a Therapist who has me on a whole host of meds, they do help Here is some info I have on dealing with Chronic Pain, I hope it can be of some help to you (((Dear Sister)))
Chronic Pain:
Millions of people world wide seek treatment for chronic pain every year. On occasion certain medications, nerve blocks or physical therapy can make a big difference, however, in most cases a multiple-part approach to ending the downward spiral of chronic pain is required. Reversing this spiral is now commonly referred to as pain management. Pain management includes, not only medication, but also a comprehensive plan of relaxation, exercise and behavioral change. There is no magic bullet for relief of chronic pain. Managing pain is not about making the pain disappear, it is about keeping pain tolerable and there are several ways to accomplish this. Keep a Pain Journal: Record the various activities and therapies that reduce or alleviate your pain. A journal also helps track the ebb and flow of pain, so you are aware of them and know when the pain worsens and how to ease it.

Get Started on an Exercise Program: Exercise improves overall fitness, increases strength and flexibility and can reduce the risk of further injury and helps control pain.

Balance Your Life: Find a healthful balance of activities, which should include work time, exercise, recreation, hobbies, relaxation, rest and socialization with family and friends. This balance can ease pain and elevate your mood.

Medications: All medications have side effects and there are toxic risks with all medication. So which medication to use and when to use one for chronic pain is very complex.

Complementary Medicine: Unconventional therapies used (yoga or Tai Chi), which promote physical strengthening are safe and sensible when combined with exercise, diet and treatments prescribed by your doctor.

Alternative Medicine: This therapy is used instead of, or in conjunction with, traditional medical care, including homeopathic or naturopathic practitioners. The Food and Drug Administration do, not regulate herbal medications, while they may be beneficial; they may also be toxic and may interfere with prescription medication. Take with care.

Some Tips to Help in Managing Chronic Pain:

Write yourself a contract: Pledge to yourself that you are committed to managing your pain.
Keep your home environment healthful: Remove all items from your home that might lure you into unhealthy habits. Your home should reflect your positive active attitude.
Set goals for pain management: Set specific goals to address your greatest pain problems.
Monitor your progress: Prepare some type visual aid or chart to display your progress.
Accept support: Support of family, friends and physician will help you keep going on track on difficult days.
Team up with your doctor: Your doctor can work with you to overcome obstacles, keep him/her posted on your progress.
Plan each day: Schedule your exercise, relaxation, rest, work. Make a list of things to do in order to accomplish your goals.
Stay positive: Think that you will control the pain. Keep your spirits up, this will help to maintain your ability to overcome and manage pain.
Reward yourself: If you treat yourself to something enjoyable, when you reach a goal, it will reinforce a positive attitude.

Pain Terminology:


There can be psychological effects from chronic pain. It can produce feelings of anger, sadness, hopelessness and despair. It can alter your personality, disrupt sleep and interfere with work and personal relationships.
There are numerous forms of relaxation therapy that are helpful to patients. Relaxation training and stress management, biofeedback and meditation can all be beneficial.

We believe that a time set aside each day to close your eyes, take some deep breathes, listen to some relaxing music and think only pleasant thoughts, with the idea of you controlling the pain rather than the pain taking control of you. Perhaps 15 minutes twice a day.

b] Psychological Management:[/b]

Chronic pain is a complex condition, which may begin with a physical trauma, but is always maintained by a combination of physiological, neurological and psychological factors. In recent decades, it has become increasingly accepted that effective treatment must address both the physical and the psychological aspects of chronic pain. The psychological treatment of pain is important for a number of reasons. Firstly, psychological factors play a crucial role in the onset and course of chronic pain. People with psychological problems are more at risk of injury and pain (Tunks, 1996). The author has observed for example, that poor people who get hurt at work {particularly repetitive strain injuries] often do not report the injury for fear of losing their job, leading to delayed access to medical treatment and aggravation of injury. People with pain are also more likely to develop anxiety and depression - some studies have found up to 60% of chronic pain sufferers have either clinical anxiety or depression (Tunks, ibid). Although anxiety and depression are effects of pain, they can also undermine a person's ability to cope as well as increasing their perception of the intensity of the pain. A kind of pain-stress feedback loop is created. Chronic pain also presents a number of diagnostic dilemmas, as the physical cause is often unclear. This presents the clinician with a dilemma, is it psychogenic (e.g.; a somatization disorder) or a medical problem of unknown origin? Treating a somatization disorder as a real medical problem can lead to unnecessary treatment, while treating a medical disorder as 'psychological' can lead to withholding of treatment and cause added suffering and complications. In addition, chronic pain is often poorly managed, not because of lack of know-how, but because of psychological factors. For example, one study {of cancer patients} found that over 50% were under-medicated. The reason was poor communication between doctor and patient. Other studies indicate underreporting of pain by patients is a major problem. Cultural factors such as macho attitudes may also predispose people to "putting up with it."

Thus although chronic pain may start out with physical injury, it quickly develops into a major psychological problem. Psychological factors play a part in the whole course of the development of chronic pain, including diagnosis and management. Clearly, psychological treatment is an essential part of any treatment approach. Given the difficult nature of the disorder, a preventative approach founded on early intervention is indicated.

Psychological treatment can help by:
Education - many people with chronic pain are ignorant about the causes of pain, or their rights and responsibilities as a patient, or even just how to deal with the effects of pain on their relationships. Education in the form of information about pain, communication skills, and the treatment process can empower the chronic pain sufferer and enable them to benefit more from treatment.
Provision of adequate support - adequate psychological support is known to be an essential prerequisite for coping with life stressors, including chronic pain.
Reduce anxiety and depression - this is largely achieved through changing negative feelings, thoughts and behaviors associate with pain. Once a person knows what is going on and has some ability to control things, their confidence increases and anxiety and depression are less.
Case management - the pain management psychologist is the best-qualified person to identify any psychological obstacles to recovery, and advise other treating professionals.

Physical & Occupational Therapy:

Physical modalities, if appropriately used, can be effective in reducing acute or sub-acute pain and can be very beneficial for chronic pain. The use of physical therapy does not ensure the elimination of pain. This is due to the fact that the perception of pain is different from patient to patient. While total relief of pain may be ideal, it is very difficult and not always attainable, particularly in chronic pain. However, even if there is residual pain, it is very frequently less intense and is at a bearable level
and may allow the patient to engage in his or her daily activities and/or function better in work activities.A list of specific physical therapies includes:
Thermotherapy - down through history heat and cold have been used for the relief of pain. The sedative, antispasmodic, analgesic, and decongestive effects of heat are well known. Superficial heat includes hot packs, paraffin baths, and heat lamps. Hydrotherapy, (warm
or hot whirlpool bathes). Deep heat includes ultrasound, short wave diathermy, and microwave.
Cryotherapy - there is no agreement on the effectiveness of cold over heat in the control of pain, however, application of cold to local areas produce some therapeutic effects, including reduction of temperature, reduction of neuromuscular transmission, analgesia, and an anti-inflammatory effect. Cold packs, (many sizes and shapes are available commercially), are composed of a pliable gel in a thin plastic pouch, that can be stored in the freezer until ready to use. They may retain their cold for up to 30 minutes after applied. Vapocoolant sprays are available, containing either fluorimethane or ethyl chloride and are useful to relieve pain of muscle spasm and trigger points. They must be used very carefully to prevent tissue damage. Ice water is a good and inexpensive method of cold therapy, where the extremity or part to be treated is immersed in ice water. The ice stick or block method involves moving an ice stick or block, back and forth in a massaging manner, over the painful area.
Electrotherapy - has been used since ancient times for the treatment of pain. Both direct (galvanic) current and
alternating current have been and are being used in the treatment of various pain syndromes. Transcutaneous
electrical nerve stimulation (TENS) is being used with varying degrees of success for pain relief. There is the
possibility of abuse both by the physician and the patient and its usefulness has been question in some studies.
Ionophoresis is a procedure, in which, molecules or atoms (ions) are force into the tissue using an electrical field.
Mechanotherapy - massage has been used since early times, and still plays an important role in pain management. The physiologic effect of massage is to increase or regulate muscle tone. The therapist's hands, stimulates the transmission of impulses to the higher centers in the brain, producing, sensations of pleasure and well being. The mechanical effects include, increasing the circulation of blood and lymph, and produce muscular motion, stretching of adhesions and reducing the accumulation of fluid. Common techniques of massage are stroking, kneading, rubbing and percussing. Indication for massage include reducing swelling, relieving pain, and mobilization of contracted tissue. There are some contraindications for its use such as; infection at the site, thrombophlebitis, burns, malignancies, and skin disease.
Therapeutic exercise - is a cornerstone on the treatment of sub-acute and chronic pain. Body movement improves musculoskeletal function and helps to maintain a state of well-being. An exercise program that helps to increase range of motion, increase elasticity of soft tissue, decrease spasm and tension, is usually followed by exercises that increase strength and endurance. Some of the various types of exercises include isometric, isotonic, aerobic and aquatic. Traction and passive manipulation are other modalities used. There are physical exercises that are used for various part of the body, such as shoulder, neck and low back. Lists of the various modalities are listed in many texts.
Occupational therapy - is used to help return the patient to work activity. When physical or occupational therapy are ordered by the physician, it should be remembered that the therapist is a trained professional, and should be treated as a member of the treatment team. The therapist will see the patient more often than the physician and therefore may give insightful information regarding some physical and psychological problems. The order for therapy should include: evaluate and treat; specific requests by the physician; a working diagnosis; frequency of treatment; length of time treatment is to be continued; possible contraindication to treatment and precautions.
Hands on therapy - depends on the skill of the therapist regarding dysfunction of muscles and joints.
Programs to restore function - are some where between, physical therapy and the fitness center type
programs. This may consist of physical conditioning with a group of patients. Patients attend such a program two or three times a week, with sessions lasting up to two hours, during which time exercise consists of stretching, strengthening and aerobatics. It may also include education and back to work activity.
Gym programs - usually begins as the physical therapy program is ending and the patient continues to exercise in the gym independently. The gym can be and appropriately is a part of the physical therapy department or may be private. Some supervision may be provided, however, the individuals are usually on their own. It is important that they follow instructions from the therapist in order to prevent further injury.
Vocational rehabilitation - is used for those chronic pain patients who wish to return to work and it should be an integral part of the pain management program. The effort is to help these patients learn or relearn skills necessary for return to gainful employment.
Managing Chronic Pain:

Additional Resources for Patients and Patient Advocates:

Battling Back: Overcoming the Undertreatment of Chronic Pain:

Questions You Should Ask About Pain & Pain Treatment:

Pain Management:

Pain Clinics - a personal view:

Deal with Depression:


You Can Overcome the Affects of Stress:

Fatigue Takes a Special Toll on Women:

Women and Pain:

Anxiety Disorders:

Self-Discovery Through Journaling:
National Center for Chronic Disease Prevention and Health Promotion:

Depression Risk Assessment:

Fatigue Takes a Special Toll on Women:

Disorders More Common in Women:

Pain Management and Information Organizations:

Chronic Pain In America: Roadblocks To Relief:

Modern Theories on Chronic Pain

Women with Disabilities

Am I being heard?

Caught in pain's vicious cycle

Overcoming Chronic Pain --

Hang in there ((Dawn)) together we all can overcome this battle
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Unread 04-15-2003, 05:25 PM
all new this the way it's gonna be?

I really do know how you're feeling right now. When I finally resigned myself to going to pain mgmt I felt like my life was ending. But it was one of the best things I ever did. It gave me some semblance of a life back. Yes, I still do have bad days and I still shed some tears, but I don't hesitate to take those pills anymore when I need them. I don't like having to take them, but I know that there are days that I simply could not function without them.

I also have days where I think "why me?" or "what next?". I don't have the answer to that question, but I do the best that I can with the life the Lord has given me. I try to look at all that I do have that is good in my life. I know you will make it thru this my friend.

Hang in there Dawn, your sisters are here for you. We really do understand.
Unread 04-16-2003, 06:11 AM
all new this the way it's gonna be?

Thanks sooooooooooooo much (((((sisters))))))))!!!!

Your insight and input and advice has been taken to heart. I've read and re-read your posts several times thru the past day and know that I will handle this the best way I can.

I started my Paxil today....we'll see what happens. I'm not sure what I'm going to do about paying for all these meds insurance runs out next month and I won't be eligible for state aid. The Paxil alone costs 99.00 per month!!!!!! Sheesh a whole new set of worries.

I was curious to know if any of you know the generic Tramadol???? Is this as effective as the's supposed to be it's generic. Anytime I have been given a script for the ultram I have never been given a generic, so this time I was suprised to see a substitute. My Insurance I discovered also won't pay for a full script of the Toradol...I'm limited to how many I can have a month!! I have the feeling my meds are gonna be an issue here. I had seen a post before where there were links to places that helped pay for meds? I can't seem to locate that post and was wondering if ya'll could help me find it.

S/O is reacting better...I think once he actually sat down and read the info the doc gave me he realised I wasn't just pulling this out from some sort of misguided desire to keep feeling bad all the time. I asked if he wanted to trade me in yet for an "unbroken model" and he said naaaaa...He likes what he has, so I feel a little better there knowing that ultimately he'll support me even if he doesn't understand.

Sharon....the DX of FMS or CFS is done by the process of elimination (sp)....There are pressure points that are instrumental in the final DX that your doc can check. (((((sheri's))))))) Links are wonderful and should answer many of your questions.

It's really kinda strange now that I've had a chance to process it all how I feel....Not so much what I'll be dealing with on the pain but how I will handle this all's a double whammy when I get a call for a job last night that I know I can't do anymore because I know the pain it will cause...( I had to turn down a 35,000$$ re-paint cause I know I can't climb the scaffold anymore) I think I have come to the conclusion that before I try to do anything with my life including going back to school I have to get this depression under control. I need to understand what it is and why it's happening to me....Funny I don't really feel "depressed" I just feel a "why bother" kinda thing....I've isolated myself a lot lately and have lost some friends because of it..I hope eventually they'll understand what I'm going thru and be there later on when I get my head out of my behind!!! <big sigh>

I did have another one more question...Do you eventually get used to taking all these meds without feeling like your never gonna be able to drive again to due all the drowsyness????? I will build up some sort of tolerance to this right? I"m already exhauseted beyond belief and the Ultram in the past really makes me markedly tired....the Paxil says it will make me drowsy...the toradol is great but I try to take that only when I need to get thru the day for something I can't miss..

Holy cow....this got long...I'm so sorry...If you've made it this far...god love ya!!!! I guess putting it so the eyes can see really makes you think huh?...
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Unread 04-16-2003, 06:52 AM
all new this the way it's gonna be?

I lost my insurance at the beginning of Feb. and medication costs are a big issue with me too. I hope someone will post those links as I would like to check them out too.

The Ultram generic just came out not too long ago. It is what I use and can't tell a difference between that and the name brand stuff. Even the generic is expensive -- I paid $42 for 60 tablets.

I take some of my meds at bedtime because of the drowsiness side effect. Maybe you could ask your doc about switching the Paxil to before bed if it makes you drowsy? I know you can't do that with some because you will have to take them more than once a day. I think your body will adjust (don't want to say build up a tolerance) to them somewhat in time. I generally try not to take the Tramadol or Soma if I know I'm going to have to be very alert or driving. But they don't seem to bother me in normal every day things. If the drowsiness gets to be too much for you, you might want to talk to your doctor about a dosage adjustment or another med?

Hang in there (((Dawn)))! We are here anytime you need to talk.
Unread 04-16-2003, 08:42 AM
all new this the way it's gonna be?

Hi again

Hey, my trip was comfortable and I'm doing OK, relaxing at the hotel. Haven't headed for the hot tub. Maybe I won't. Well, maybe I will. Gee, I guess I just don't know!!

Regarding meds: You may not be taking all those meds for the rest of your life. In the first place, they might not help all that much. In the second place, at some point you might want to weigh out the pros and cons even if they do help some. And yes, the ones that make you drowsy will probably not keep making your drowsly.

Also, keep in mind that medication is not the only way to deal with pain. Over the years I have used a variety of methods and have avoided heavy drug use. It's still early for you and the beginning is often the worst part. Just know that things will eventually become manageable and your life will not seem so different. You may have to work at it, but don't worry about that right now. Try one thing at a time and give yourself a chance to get used to your body and what helps and doesn't help. You will be motivated to do something different when you need to do it.

Just as an example, I am sitting here in the lounge of the hotel noticing the familiar 'all over' FM pain. A few years ago my inclination would be to follow my first instinct and take some pain meds. Now that comes to mind but I reconsider and decide that I will go take a nice hot bath and a little rest and then go to lunch. Then I'll see how things are. If they're still just the same maybe I'll still skip the pain meds and go for a walk. Or I could take my electric scooter and go for a little adventure. When I come back, THEN I'll check out how I feel again. I probably won't take pain meds until bedtime, and then only if I need them, which I might not.
Unread 04-16-2003, 10:05 AM
all new this the way it's gonna be?

Well, I am pain med Queen!! Unfortunatly I can not even move without taking them at this point. My day too will come when I can throw them in the trash and throw a party at the same time...

I have tries a few different antidepressants and I am currently taking nothing while I wait for my Dr appt. I was on Paxil for about a week and it brought on my horrible migraines so she switched me to Zoloft. I had no problems on it but I am going to give Wellbutrin a try to also help me stop smoking. If that does not agree with me then at least I have the Zoloft that I know works..

I HATE taking all of the meds I take and am thinking about trying some herbal remedies. All of the side effects really are starting to scare me..

I hope you are feeling better.....

Unread 04-16-2003, 10:08 AM
all new this the way it's gonna be?

I have to agree with (((Joselle))) in that there are many different ways to deal with pain and that you will figure out in time what helps and doesn't help. I am early on in this as well and still trying to get use to listening to my body and understanding what it needs. Sometimes it needs sleep, sometimes exercise, sometimes relaxation and sometimes (unfortunately) pain meds. I don't think the fibro patient can be as quick to dismiss those needs as some people can. Also, you have to find the right balance....enough exercise, but not too much...etc. Like Joselle, I do not want to have to "depend" on meds to get me through each day for the rest of my life. I think, in time, I will get the balance right and be able to spend more of my days med free. Hopefully, so will you!
Unread 04-16-2003, 01:01 PM
Change in plans

OK, I didn't take a bath. I did take a rest and enjoyed myself. Then went to lunch, had a great discussion with a business associate from Iran, came back to my room and took pain meds! So you see, you just never know. But you keep on truckin'.
Unread 04-16-2003, 03:13 PM
all new this the way it's gonna be?

I'm allergic to Ultram so I dont know but when I get generic meds I can tell no difference. The side effects usually go away as your body adjusts to the medication. When I 1st started Narcotic Therapy, I experienced some awful effects but after a few weeks they went away The trade off was well worth it for the relief I gained.. Here is some links on the Patient Assistance Programs:

Patient Assistance Programs:

Accessing Free Medication - The Patient's Advocate:

Pharmaceutical Manufacturer's Drug Assistance Programs:

With time your body will build a certain tolerance level but it is not as big an issue w/Chronic Pain patients on these meds. Here are some Pain Med links that address this issue:

narcotic therapy:

Breakthrough Pain Homepage:

Most Commonly Used Medications:

Treatments for Pain:

This one has a conversion sheet for mgs when converting from the patch to other meds:

Dilaudid, Hydromorphone, Narcotics, Analgesics, Pain Killers Drug & Medication:




Randall Chronic Pain Scale:

Oral Methadone Effective as First-line Opioid Treatment for Chronic Non-Cancer:

Opioid Therapy for Chronic Nonmalignant Pain:

Pain med checklist:

Pain Medicine:

Are you on any Muscle Relaxers? I have found them to be of a huge help with my FMS pain & muscle spasms from this...I recently found this info about it:

What Your Pharmacist Should KnowWhat Your Pharmacist Should Know About FMS and CMP:
by Devin Starlanyl
This information may be freely copied and distributed only if unaltered,
with complete original content including: © Devin Starlanyl, 1995-2001.

Each of us with fibromyalgia (FMS), Chronic Myofascial Pain (CMP), or FMS/CMP
Complex needs a trustworthy pharmacist to coordinate our medications and keep
us informed. New medications are coming out so rapidly that it is impossible for
physicians to keep up with them all. Our health care team often comprises many
specialists, and they don’t always communicate with each other. Most of us are on
many medications of different kinds, and people with FMS tend to react unusually
to medications. Some of our medications can interact unpleasantly. For example,
Soma (carisoprodol) can react with niacin if taken at the same time, producing
nausea and a painfully hot flush and rash.
FMS/CMP Complex and Medication
Often, people with FMS/CMP Complex have to try many medications before they
find the best ones. We react differently to each medication, and there is no “cook-book
recipe” for FMS or CMP. What works well for one of us can be ineffective for
another. A medication that puts one person to sleep may keep another awake.
There is a whole subset of FMS/CMP Complex patients who find medications such
as Benedryl, Ultram, Pamelor and Paxil stimulating. Some of these people may
look healthy, but their suffering can be great. We all have our own unique combi-nation
of neurotransmitter disruption and connective tissue disturbance. We need
doctors who are willing to stick with us until an acceptable symptom relief level is
reached. We also need a compassionate and understanding pharmacist to work
with us.
The most-studied medications that modulate neurotransmitters are psychoactive
drugs. This does not mean that the patient’s condition is psychological. Fibromy-algia
patients have enhanced nociception (Bendtsen, Norregaard, Jensen et al.
1997) and are often in great pain. Medications that affect the central nervous
system are appropriate for FMS. The target symptoms are sleep lack, muscle
rigidity, pain, and fatigue. These medications don’t stop the alpha-wave intrusion
into delta-level sleep, but they do extend the amount of sleep and may ease
symptom “flares”. It is the rule rather than the exception that an FMS/CMP client
will save strong pain medications from a surgery or an injury for when they are
really needed — for an FMS/CMP “flare”. This behavior indicates that their pre-scription
needs are not being met. FMS is often misunderstood (Jones 1996) by
the medical profession, and your clients may turn to you for guidance and under-standing.

Medications and Narcotics
It’s normal to be depressed by chronic pain, but that doesn’t mean depression is
causing the pain. FMS is a sensory amplification syndrome (Kosek, Ekholm and
Hannson 1996). Maintenance with mild narcotics (Darvocet, Tylenol #3, Vicodin-Lorcet-
Lortab) for nonmalignant (noncancerous) chronic pain conditions is a logi-cal,
humane alternative if other reasonable attempts at pain control have failed.
The main problem with raised dosages of these medications is not with the nar-cotic
components per se, but with the aspirin or acetaminophen that is often com-pounded
with them. There can be serious side effects with NSAID usage (Gardner
and Simpkin 1991). Please keep an eye on the level of your client’s medications.
Clients with FMS/CMP Complex need adequate pain control to break the pain/
contraction/pain/contraction spiral. It does not serve them well if you treat them
like addicts. They get no pleasure from their medications, just some symptom
relief. However, the level of medication should not be rising steadily. That is a
sign that the perpetuating factors are not being treated properly, and/or that the
level of pain relief is not adequately treated with the current medication. During a
symptom flare, these clients often need more medications, but the level should
decrease again after flare has subsided.
Narcotic analgesics are sometimes more easily tolerated than NSAIDs (Reidenberg
and Portenoy 1994). Neither FMS nor CMP is inflammatory, and anti-inflammatory
medications often contribute to malabsorption in the gut. NSAIDs may disrupt
stage 4 sleep, and delta sleep is already interrupted in FMS. Prolonged use of
narcotics may result in physiological changes affecting tolerance or physical depen-dence
(withdrawal), but these are not the same as psychological dependence (ad-diction).
Be sure to ask your FMS/CMP clients about multiple chemical sensitivities. Many of
us are lactose intolerant and can’t deal with even the small amounts of lactose
used as fillers in many medications. Be patient. Many of us will appear confused
at times, due to “fibrofog”. We need your help to cope with the difficulties of living
with an invisible chronic illness.


Management of chronic pain. - 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.

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!

A 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.
Hope you can find some help paying for your meds ((Dwan))...Good Luck Pls keep us posted....(((hugs)))
Unread 04-16-2003, 03:29 PM
I do have some advice on the medications....

I don't have FM, but I am a nurse and also have pain and depression. I tried paxil but it made my head feel very strange and really made my already diminished sex drive come to a complete halt and I could not reach orgasm when we did try. I had my doctor switch me to prozac and it has made a world of difference. I also had PMDD prior to hyst and that is the main reason for the prozac. After the hyst I figured I wouldn't need it anymore since my problems seemed to be menstrual related. NOT!!! I started getting all the same symptoms again, depression and severe mood swings! I was so angry for no reason. So I now know (and I have still tried several times to stop taking it) that I will always have to take it. My kids thank me!! Anyway in January my doctor switched me to wellbutrin for the depression and to help with losing weight. It worked great for me and gave me lots of energy at first (that has worn off darn it) but it did not help the mood swings so my doctor said "that's because wellbutrin is not a mood stabalizer and prozac is." So I am now on both and doing great. My point is that the prozac has a generic and I pay under $10 a month for it. Wellbutrin does not have a generic. I would talk to the doctor and let him know that your insurance will be running out and cost is a big issue with you. He may be able to suggest something else that will work for you.
You should take the paxil at night as it does cause drowsiness, I am surprised the doctor didn't tell you that. I don't have drowsiness from my generic ultram and actually don't feel like it works very well for me. I think eventually you will become adjusted to all the medicine and some of the side effects should diminish.
It sounds like you are on the right track and you will definately find the right support here.



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