THNKS 4 YUR RPLIES/ MEDS NT WRKNG KOZ BEING TRTED 4 WRNG DISEASE!

Discussion in 'Fibromyalgia Main Forum' started by mimilove, Jun 3, 2006.

  1. mimilove

    mimilove New Member

    IF PAIN MEDICATION/OTHER MEDS GIVEN BY DRS ARE NOT WORKING!!! COULD IT POSSIBLY BE BECAUSE THEY ARE TREATING THE WRONG DISEASE????

    I sit every day, and I try to figure out what it is that I have. Consumed by a level of 9 pain almost everyday, frustration, anger you name it I have it. I know I am at my wits end trying to figure out what I have; I do not believe the Drs are. I just went for an MRI last week that turned out all sorts of stuff; I did a CT-Scan for the same thing a month ago another Dr told me "not a thing wrong with you!" They run the same tests, over and over and pretty much all come back "normal" according to them.

    I see posts like below "All Tests Normal", I don't know Tanu; somebody asks "aren't you a Dr?", shouldn't you know? If you are I ask my self the same, I also read you were not taught about CFS and FMS in school. And I completely understand, my PP told me it is just FMS is just as frustrating for patients as for DRS, that is for DRS trying to help not the ones who don't.

    Simple common sense though, and I don't believe you have to be a brain scientist to figure out that if the pain medication is not working for "pain", I mean it's not even cutting through the pain; that "we are being treated for the wrong disease!" I am no Dr, but am I wrong to assume such a thing?

    Just like the argument about "Autoimmune Disease", there may be multiple mechanisms involved in the initiation and progression of autoimmune diseases and it's therefore unlikely the study of Autoimmune Disease will consistently generate "one inducer, one disease", and with the talks that it's not that the body is actually eating upon itself but is just so worn out and can't figure out what the heck anymore. Well is it so worn out then, that in my case it cannot recognize that I am trying to fight off bad stuff. Because my WBC is always good (except at the hospital), but my RBC is alway very very low. Why would they have to inject terminally/chronically ill patients just so their white blood count can show that they are actually fighting off somthing?

    There is a lot we are not being told, very unfortunate. I just hate that Drs take the normal stand on things all the time; never thinking beyond the norm. Always disbelieving their patients.

    For the first time, this week I was tested for some out of the "norm" tests, because I went to one of the Top Neurosurgeons they have here........on my own without even a referral. My network had never even done the tests. At least the branch I went to, they were not even too pleased that I had gone there; but he's so looked up to and whenever they are in a serious bind I guess they send people there. He told me most likely only one place will find out what is wrong with me.....and that I do not only have FMS, CFIDS. Did not even make me pay. Wants me to keep in touch. Now that is what I with respect call DR.

    Mimi

    [This Message was Edited on 06/04/2006]
  2. NyroFan

    NyroFan New Member

    Mimi:

    I am sorry you are in zone 9 pain everyday. I had a rough time finding the right doctors. I contemplated a law suit against one and even started the case rolling with a retainer, but he said that the doctor will delay and delay and delay until he has me dig deep into my pocketbook. So, I called it off.

    Finally, I set up a chain of doctors. I saw each one--one after another and all is going well now. Respect, the right meds and some TLC which is what some of them lack.

    Do not give up! You'll win.

    nyrofan
  3. shawnnaples

    shawnnaples New Member

    How long have you been diagnosed with Fibro? What do they say caused it? Have you ever looked into other causes like something called biotoxin. It is when you are around something in the enviroenment causing a autoimmune disorder. Mine was Black Mold. It can be hidden behind walls sometimes even e regular mold test will not find it. If there was ever a water leak in a home or where you work it can cause it. It will cause pain so bad no pain meds will work. I was on Oxyxotin and would not do anything. When I walked it was like stepping on knives. Doctors thought for awhile maybe I had MS. Just something to look into.
  4. JLH

    JLH New Member

    Treatment of Fibromyalgia in Detail
    Robert Bennett MD, FRCP


    If you are reading this you probably have a common syndrome of chronic musculoskeletal pain called fibromyalgia. This chronic pain state is now appreciated to be caused by abnormalities of sensory processing within the spinal cord and brain. As such you will usually experience a bewildering (both to you and your doctor) array of bodily and psychological problems that can seldom be “cured”.

    However, armed with both patience and knowledge, many fibromyalgia patients can be helped to live with less pain and be more productive. In my own evolving experience of dealing with this problem I can identify 7 aspects of management that are of importance for your doctor to successful manage your fibromyalgia.

    My Advice to Doctors who care for Fibromyalgia Patients


    1. Realize that FM patients are going to be a chronic challenge.

    2. Be non-judgmental and prepared to be an advocate.

    3. Understand the pathophysiological basis for symptoms.

    4. Analyze and treat pain complaints in a systemic approach.

    5. Recognize and treat psychological problems at an early stage.

    6. Recognize associated syndromes of disordered sensory processing.

    7. Involve all FM patients in a program of stretching and gentle aerobic exercise.

    Treatment of pain in fibromyalgia

    Pain is the primary over-riding problem for most of you. Many of the problems you experience are largely a secondary consequence of having chronic pain. When pain is even partly relieved, fibromyalgia patients experience a significant improvement in psychological distress, cognitive abilities, sleep and functional capacity. A total elimination of pain is currently not possible in the majority of fibromyalgia patients. However worthwhile improvements can nearly always be achieved by a careful systematic analysis of the pain complaints.

    As a generalization fibromyalgia related pain can be divided into general pain (i.e. the chronic background pain experience and focal pain (i.e. the intensification of pain in a specific region – usually aggravated by movement). The latter is probably a potent driving force in the generation of central sensitization. Attempts to break the pain cycle, to enable patients to be more functional are especially important.

    In general, most FM patients do not derive a great deal of benefit from NSAID preparations or acetoaminophen, although NSAIDs are very useful in the treatment of associated joint pain problems such as osteoarthritis. Prednisone and other steroids have been shown to be ineffective in the long term treatment of fibromyalgia.

    General Pain. The use of NSAIDs (e.g. ibuprofen, aspirin etc.) is usually disappointing; it is unusual for FM patients to experience more than a 20% relief of their pain, but many consider this to be worthwhile. Narcotics (propoxyphene, codeine, and oxycodone) often provide a worthwhile relief of pain. In most patients, concerns about addiction, dependency and tolerance are ill founded.

    Ultram (Tramadol) and Ultracet (tramadol + Tylenol), are the most useful pain medications in many patients. They both have the advantages of having a low abuse potential and is not a prostaglandin inhibitor; tramadol reduces the epileptogenic threshold and it should not be used in patients with seizure disorders.

    Currently opiates are the most effective medications for managing most chronic pain states (Friedman OP 1990, Portenoy 1996) . Their use is often condemned out of ignorance regarding their propensity to cause addiction, physical dependence and tolerance (Melzack 1990, Portenoy et al 1997, Wall 1997) . While physical dependence (defined as a withdrawal syndrome on abrupt discontinuation is inevitable) is inevitable, this should not be equated with addiction (Portenoy 1996).

    Addiction is a dysfunctional state occurring as a result of the unrestrained use of a drug for its mind-altering properties; manipulation of the medical system and the acquisition of narcotics from non-medical sources are common accompaniments. Addiction should not be confused with "pseudo-addiction". This is a drug-seeking behavior generated by attempts to obtain appropriate pain relief in the face of under-treatment of pain.

    Opiates should never be the first choice for pain relief in fibromyalgia, but they should not be withheld if less powerful analgesics have failed. In my experience many fibromyalgia patients want to try opioid medications, but then give up on them due to unacceptable side effects, such as mental fog, increased tiredness, dizziness, constipation and itching.

    Local Pain. Although you are experiencing widespread body pain -- a manifestation of central sensitization -- you will also have multiple areas of tenderness in muscles - so called "myofascial trigger points". The severity of pain and the location of these "hot spots" typically varies from month to month, and the judicious use of myofascial trigger point injections and spray and stretch (see section on focal pain) is worthwhile in selected patients. It is often worthwhile for your physician to identify the most symptomatic points for myofascial therapy.



    The steps involved in the injection of trigger points are:

    1. Accurate identification of the trigger point.

    2. Identification and elimination of aggravating factors.

    3. The precise injection of the myofascial trigger points with 1% procaine (a local anesthetic).

    4. Passive stretching of the involved muscle after the local anesthetic has taken effect; this is
    often aided by spraying the overlying skin with an ethyl chloride spray.



    In most FM patients, this myofascial therapy needs to be repeated over a period of several weeks and occasionally over several months. Unresponsiveness is usually due to failure to eliminate an aggravating factor, imprecise injection of the trigger point, or failure to inject satellite trigger points. Trigger points are usually injected with 3 to 5 ml of 1-% procaine. Please note that these are not “steroid shots”.

    Performing “myofascial spray and stretch” often enhances the efficacy of trigger point injections immediately after the injections. Spray and stretch consists of an application of a vapocoolant spray, such as ethyl chloride over the muscle with simultaneous passive stretching.

    A fine stream of the spray is aimed toward the skin directly overlying the muscle with the active trigger point. A few sweeps of the spray are passed over the trigger point and the zone of reference. This is followed by a progressively increasing passive stretch of the muscle.

    Evaluation by an occupational and physical therapist often provides worthwhile advice on improved ergonomics, biomechanical imbalance and the formulation of a regular stretching program. Hands-on physical therapy treatment with heat modalities is reserved for major flares of pain, as there is no evidence that long-term therapy alters the course of the disorder. The same comments can be made for acupuncture, TENS units and various massage techniques.

    Treatment of Sleep Disorders.
    Non-restorative sleep is a problem for most of you and contributes to your feelings of fatigue and seems to intensify their experience of pain. Effective management involves (1) ensuring an adherence to the basic rules of sleep hygiene, (2) regular low grade exercise, (3) adequate treatment of associated psychological problems (depression, anxiety etc.) and (4) the prescription of low dose tricyclic antidepressants (amitryptiline, trazadone, doxepin, imipramine etc.

    Some fibromyalgia patients cannot tolerate TCAs due to unacceptable levels of daytime drowsiness or weight gain. In these patients benzodiazopine-like medications such as Ambiem (zolpidem) are usually very useful. Some fibromyalgia patients suffer from a primary sleep disorder, which requires specialized management. About 25% of male and 15% of female fibromyalgia patients have sleep apnea. Unless specific questions about this possibility are asked sleep apnea will often be missed. Patients with sleep apnea usually require treatment with positive airway pressure (CPAP) or surgery.

    By far the commonest sleep disorder in fibromyalgia patients is restless leg syndrome. This can be effectively treated with L-Dopa/carbidopa (Sinemet 10/100 mg at suppertime) or clonazepam (Klonipin 0.5 or 1.0 mg at bedtime).


    Exercise for Fibromyalgia Patients

    Fibromyalgia patients cannot afford not to exercise as deconditioned muscles are more prone to microtrauma and inactivity begets dysfunctional behavioral problems . However, musculoskeletal pain and severe fatigue are powerful conditioners for inactivity. All fibromyalgia patients need to have a home program with muscle stretching and gentle strengthening, and aerobic conditioning.

    There are several points that need to be stressed about exercise in FM patients: (i) Exercise is health training, not sport’s training. (ii) Exercise should be non-impact loading. (iii) Aerobic exercise should be done for 30 minutes each day. This may be broken down into three 10 minute periods or other combinations, such as two 15 minute periods, to give a cumulative total of 30 minutes. This should be the aim -- it may take 6-12 months to achieve this level.

    (vi) Strength training should emphasize on concentric work and avoid eccentric muscle contractions. (vii) Regular exercise needs to become part of the usual lifestyle; it is not merely a 3-6 month program to restore them to health. Suitable aerobic exercise includes: regular walking, the use of a stationery exercycle or Nordic track (initially not using the arm component).

    Patients who are very deconditioned or incapacitated should be started with water therapy using a buoyancy belt (Aqua-jogger).

    Recognition and treatment of psychological distress

    As you suffer from chronic pain there is a distinct possibility that you may develop secondary psychological disturbances, such as depression, anger, fear, withdrawal and anxiety. When “an event” is associated with the onset of the fibromyalgia you may adopt the role of a "victim". Sometimes these secondary reactions become the "major problem" for some patients.

    The prompt diagnosis and treatment of these secondary features is essential to effective overall management of fibromyalgia patients. Some fibromyalgia patients develop a reduced functional ability and have difficulty being competitively employed. In such cases your doctor will hopefully act as an advocate in sanctioning a reduced or modified load at work and at home.

    Unless you have a severe psychiatric illness (e,g, major depressive illness or a psychosis), referral to psychiatrists is usually non-productive. Psychological counseling, particularly the use of techniques such as cognitive restructuring and biofeedback, may benefit some patients who are having difficulties coping with the realities of living with their pain and associated problems.

    Fibromyalgia associated syndromes

    It is not unusual for fibromyalgia patients to have an array of bodily complaints other than musculoskeletal pain. It is now thought that these symptoms are a result of the abnormal sensory processing – as described in the previous section. Recognition and treatment of these associated problems are important in the overall management of your fibromyalgia.

    Non-restorative sleep
    Cognitive dysfunction

    Chronic fatigue
    Cold intolerance

    Restless leg syndrome
    Multiple sensitivities

    Irritable bowel syndrome
    Dizziness

    Irritable bladder syndrome
    Neurally mediated hypotension


    1. Chronic fatigue: The common treatable cause of chronic fatigue in fibromyalgia patients are: (1) inappropriate dosing of medications (TCAs, drugs with antihistamine actions, benzodiazapines etc.), (2) depression, (3) aerobic deconditioning, (3) a primary sleep disorder (e.g. sleep apnea), (4) non-restorative sleep (see above) and (5) neurally mediated hypotension (see below). A new drug called Provigil is of some help when used intermittently for management of fatigue.


    2. Restless leg syndrome: This strictly refers to daytime (usually maximal in the evening) symptoms of (1) unusual sensations in the lower limbs (but can occur in arms or even scalp) that are often described as paresthesia (numbness, tingling, itching, muscle crawling) and (2) a restlessness, in that stretching or walking eases the sensory symptoms. This daytime symptomatology is nearly always accompanied by a sleep disorder - now referred to as periodic limb movement disorder (formerly nocturnal myoclonus). Treatment is simple and very effective – DOPA / Levodopa (Sinemet) in an early evening dose of 10/100 (a minority require a higher dose or use of the long acting preparations).


    3. Irritable bowel syndrome: This common syndrome of GI distress that occurs in about 20% of the general population is found in about 60% of fibromyalgia patients. The symptoms are those of abdominal pain, distension with an altered bowel habit (constipation, diarrhea or an alternating disturbance). Typically the abdominal discomfort is improved by bowel evacuation. Due to abnormal sensory processing these symptoms may be quite distressing to fibromyalgia patients.

    Treatment involves (1) elimination of foods that aggravate symptoms, (2) minimizing psychological distress, (3) adhering to basic rules for maintaining a regular bowel habit, (4) prescribing medications for specific symptoms; constipation (stool softener, fiber supplementation and gentle laxatives such as bisacodyl), diarrhea (loperamide or diphenoxylate) and antispasmodics (dicyclomine or anticholinergic / sedative preparations such as Donnatal).

    4. Irritable bladder syndrome: This is found in 40-60% of fibromyalgia patients. The initial incorrect diagnoses are usually recurrent urinary tract infections, interstitial cystitis or a gynecological condition. Once these possibilities have been ruled out a diagnosis of irritable bladder syndrome (also called female urethal syndrome) should be considered. The typical symptoms are those of suprapubic discomfort with an urgency to void, often accompanied by frequency and dysuria.

    In a sub-population of fibromyalgia patients this is related to a myofascial trigger point in the pubic insertion of the rectus abdominus muscles – and may be helped by a procaine myofascial trigger point injection). Treatment: involves (1) increasing intake of water, (2) avoiding bladder irritants such as fruit juices (especially cranberry), (3) pelvic floor exercises (e.g. Kagel exercises) and the prescription of antispasmodic medications (e.g. oxybutinin, flavoxate, hyoscamine).

    5. Cognitive dysfunction: This is a common problem for many fibromyalgia patients. It adversely affects the ability to be competitively employed and may cause concern as to an early dementing type of neurodegenerative disease. In practice the latter concern has never been a problem and patients can be reassured.

    The cause of poor memory and problems with concentration is, in most patients, related to the distracting effects of chronic pain and mental fatigue. Thus the effective treatment of cognitive dysfunction in fibromyalgia is dependent on the successful management of the other symptoms.

    6. Cold intolerance: About 30% of fibromyalgia patients complain of cold intolerance. In most cases this amounts to needing warmer clothing or turning up the heat in their homes. Some patients develop a true primary Raynaud’s phenomenon (which may mislead an unknowing physician to consider diagnoses such as SLE or scleroderma.

    Many fibromyalgia patients have cold hands and feet, and some have cutis marmorata (a lace like pattern of violaceous discoloration of their extremities on cold exposure). Treatment involves: (1) keeping warm, (2) low-grade aerobic exercise (which improves peripheral circulation), (3) treatment of neurally mediated hypotension (see below), and (4) the prescription of vasodilators such as the calcium channel blockers (but these may aggravate the problem in-patients with hypotension).

    7. Multiple sensitivities: One result of disordered sensory processing is that many sensations are amplified in fibromyalgia patients. In general fibromyalgia patients are less tolerant of adverse weather, loud noises, bright lights and other sensory overloads. Treatment involves being aware that this is a fibromyalgia-related problem and employing avoidance tactics.

    8. Dizziness: Is a common complaint of fibromyalgia patients. Before this symptom is attributable to fibromyalgia a thorough for other causes should be pursued (e.g. postural vertigo, vestibular disorders, 8th nerve tumors, demyelinating disorders, brain stem ischemia and cervical myelopathy). In many cases no obvious cause is found, despite sophisticated testing.

    Treatable causes related to fibromyalgia include: (1) proprioceptive dysfunction secondary to muscle deconditioning, (2) proprioceptive dysfunction secondary to myofascial trigger points in the sterno-cleido-mastoids and other neck muscles, (3) Neurally mediated hypotension (see below) and (4) medication side effects. Treatment is dependent on making an accurate diagnosis. In patients in whom no obvious cause is found a trial of physical therapy, concentrating on proprioceptive awareness may prove worthwhile.

    9. Neurally mediated hypotension: Patients with this problem usually have a low blood pressure that does not go up normally on standing or on exercise. Although such patients often have a low ambient BP with postural changes, these findings are not a prerequisite for diagnosis.

    A tilt table test with the infusion of isproterenol is the most reliable way to confirm this diagnosis. Treatment involves: (1) education as to the triggering factors and their avoidance, (2) increasing plasma volume (increased salt intake, prescription of florinef), (3) avoidance of drugs that aggravate hypotension (e.g. TCA’s, anti-hypertensives), (4) prevent reflex (prescribe ß-adrenergic antagonists or disopyramide) and (5) minimize the efferent limb of the reflex (prescribe a2-adrenergic agonists or anti-cholinergic agents).
  5. JLH

    JLH New Member

    One of the BEST sites on the web dealing with how to treat fibro is:

    "Dominie's 100 Tips for Coping with Fibromyalgia "

    go to: http://www.fms-help.com/tips.htm

    to access it. Or, simply do a google search on the subject title and you can find it.

    This will help you understand fibro and how to treat it. Pain meds are not always the answer to treating fibro.
  6. usanagirl

    usanagirl New Member

    for a while. Our bodies are designed to heal with nutrients, not drugs. What professes someone, physicians included, to tell you us that we can get all the vitamins, minerals and antioxidants from our diets? Is that statement true? That must mean all of those people with Cancer, Heart Disease and other chronic diseases, must have been "picky eaters."

    It's not about disbelieving their patients, they are only trained to prescribe medication and if one doesn't work, they try another...and another...and another.

    Look up Dr. Ray Strand or Dr. Christine Wood, or Dr. Ladd Macnamara and see what you find. They are physicians that have their patients "best interest" in heart.

    Best wishes,
    usanagirl

  7. usanagirl

    usanagirl New Member

    Did you know…

    The leading drug problem in the U.S. today is not the use of illegal drugs-it is the use of legal drugs.
    The fourth leading cause of death in the U.S. is properly prescribed and administered medication. By adding improperly prescribed medication to that equation, it becomes the third leading cause of death.
    There are over 2 million hospital admissions and 180,000 deaths each and every year in the U.S. due solely to adverse drug reactions
    When the FDA approves a medication for use by the general public, less than half of the serious drug reactions are known. You-the patient-become the final clinical trial.

    If you aren't aware of these facts, and you don't have the tools and information to counter them, you are at risk.

    Experienced family doctor Ray Strand writes his patients prescriptions every week, but he also believes that prescribing drugs should be a last resort in most medical cases-not a first choice. In Death by Prescription he provides simple guidelines to help readers protect themselves and their families from suffering adverse reactions to prescription medication.

    Another book that I highly recommend. There are high-quality supplements out there, I am taking them. In fact, the ONLY thing that I am taking and must thank a dear friend of mine that handed me a book called...What Your Doctor Doesn't Know About Nutritional Medicine May be Killing You and a box of USANA supplements. I began taking them that day and started to read the book...I was amazed at what I was reading and KNEW that I was taking the right stuff! And as a fellow Pisces you can understand that I "had that gut feeling" :)

    My tests too came back normal and was handed a diagnosis of anorexia and anti-depressants...I did not accept this lightly and was determined to continue with my life and take control. Well, it sounded like a simple idea but I had mistaken simple as easy. I contiously kept strong faith that something good would happen and the day I spoke with my friend about how tired I was of being in pain and not feeling well, not sleeping...I had asked God for someone to come to me to offer help.

    My point is, find your faith, remain positive, do your research and do what feels right!!!

    Love,
    usanagirl