help for sister in Rhode Island

Discussion in 'Fibromyalgia Main Forum' started by oldersis, Jun 12, 2006.

  1. oldersis

    oldersis New Member

    Please help. My sister lives in Rhode Island and can not find a doctor that can treat fibromyalgia. Any suggestions?? Her current doctor said live with it and refuses to give her meds for pain or sleep. It is really getting her very depressed. How can I help?
    Thanks Lorrie
  2. IntuneJune

    IntuneJune New Member

    Is your sister's doctor a primary care physician?

    What area of Rhode Island does she live in?

    There are rheumatologists throughout the state.

    Can you give a little more info about your sister?

    If she did see a rheumatologist, would you feel comfortable in sharing the name.

    If you are new to the board you may "click" my name on the left and you can read my profile. It gives you some info about me.

    I do work at Kent Hospital, your sister would know of the hospital. I might be able to lead her in the right direction.

    June

  3. oldersis

    oldersis New Member

    June,
    Believe it or not she lives in Warwick. I am not sure about her doctor info though I will try and find out. My sister is 51 and is getting very depressed. She looks worn down and the doctor seems to think it is all in her head. Any help you can give at all would be wonderful! I will check back tomorrow and hopefully have more answers.
    Thanks Lorrie
  4. blessedmom2four

    blessedmom2four New Member

  5. elliespad

    elliespad Member

    How about the new FFC that just opened in Boston. I did a search on mapquest and Boston is only 60 miles from Warwick. Just a thought.
  6. IntuneJune

    IntuneJune New Member

    Oldersis,

    Does your sister have access to a computer, could she sign on, I would have more questions before recommending a rheumatologist.

    Am waiting for more info from you. Fondly, June
  7. IntuneJune

    IntuneJune New Member

    How sweet of you to think of this.....

    Depending on the sister's situation, there may be some very good choices right here for her.

    Boston is not far in miles, but they can be miserable miles, my husband works a little south of Boston.

    And unfortunately, you must plan EVERYTHING in South East Expressway Time which, by the way, crawls or looks like a parking lot.

    Have you been treated by one of these centers? The posts here on the board seem to be more negative than positive...but that might just be motivation for posting in the first place.

    Fondly, June

    PS, how is Ellie the queen?
  8. dleaning

    dleaning New Member

  9. suzetal

    suzetal New Member

    I have a great GP named DR Gievetti she is at northwest heath center in Pascoag RI.I also have my shrink if you want to call him that .He is in Lincoln RI name is Dr James Whalen.I also have a neurologist Dr Alla Koranara shes in Cumberland RI.

    All tree of these Dr's believe in FM and CFS and have helped me get out of bed and somewhat a normal life.They support me 100% and also helped me win my SSD case.

    Need more Info let me Know .Shes about 20 minutes from all my Doctors.

    Sue
  10. hopeful4

    hopeful4 New Member

    Dear oldersis,
    I'm sorry that your sister is having trouble with finding a doctor who treats FM. However, I'm wondering if she has considered the possibility that she may have lyme disease, esp. being from the Rhode Island area.

    FM and Lyme have many overlapping symptoms, and often lyme is misdiagnosed as FM or CFIDS or many other illnesses.

    I will repost you some info to take a look at.

    Best wishes,
    Hopeful4
  11. hopeful4

    hopeful4 New Member

    Below is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring


    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Eyes/Vision

    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Ears/Hearing

    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears


    Digestive and Excretory Systems

    Diarrhea
    Constipation
    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)


    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)


    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage


    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness


    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety


    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks


    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain


    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover


  12. JLH

    JLH New Member

    Lorrie,

    Can your sister go to another doctor for a second opinion? Maybe a rhuemy, a nuerologist, a sleep apnea doc, or another family doc?

    Most docs start out treatment with Elavil, 10 mg, at bedtime because it helps pain and is very sedating--which helps you sleep. For pain they will give Ultram, a NON-narcotic pain pill.

    Also helpful is Neurotin and Cymbalta (I take these.)

    Here is some reading info for your sister:

    Hugs,
    Janet
    -------------------------------------------------------
    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).

    [This Message was Edited on 06/14/2006]
  13. JLH

    JLH New Member

    The following site will be very helpful for your sister to read:

    ************************

    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.
  14. oldersis

    oldersis New Member

    Everyone thanks so much for all the information. I have printed all of the suggestions and I am going to fax them to her tomorrow! Wow will she be surprised! She is not too computer savvy but her daughter is.
    When she gets back from Vacation in Florida (lucky stiff!) I will point her to here and have her sign in. You have no idea how this all makes me feel better and safer now knowing there are doctors in RI and nearby to help! She really needs to have something happen soon.
    Should she also have a psychiatrist with a fibromyalgia doctor too? Will that help with the depression? One doctor put her on Prozac and she had a really bad reaction to it. She said somedays when she is home she can't even bring herself to get out of bed.
    Thanks for all the help!!
  15. IntuneJune

    IntuneJune New Member

    "Should she also have a psychiatrist with a fibromyalgia doctor too? Will that help with the depression? One doctor put her on Prozac and she had a really bad reaction to it. She said somedays when she is home she can't even bring herself to get out of bed."

    Oldersis, One of the BEST aspects of this board is: There are many wonderful knowledgeable folks willing to share info.

    One of the WORST aspects of this board (for someone new) is: There are many wonderful knowledgeable folks willing to share info.

    Some of us (fibromites) have trouble settling our minds enough to concentrate which interfers with daily tasks but can be even more pronounced when trying to find a "path" for our own personal journey to better health when coming to this board. Understand, we, the posters, are all NOT the same, we are all in DIFFERENT places in this walk. It IS very personal.

    We don't want to overwhelm you or your sister.

    Concerning your depression question. There is a segment of our society who has a primary depression and do well on antidepressants. SOME of these folks MAY have fibro.

    Many folks with fibro become depressed due to their lack of being able to live their lives as they did or wish to live and are in pain. THIS secondary depression would happen ANYONE.

    If your sister is depressed secondary to her fibromyalgia, personally I would not deplete precious energy or time talking about what is making me depressed..... rather I would take that energy and time and work on what will make my symptoms diminish.

    My rheumatologist put me on an antidepressant (this was many years ago) and if I had PRIMARY depression, it would have helped me. It did not. After a trial period, the doctor and I agreed to stop the med.

    After picking up pointers from the board (being careful not to try too many things at once and doing her OWN research) and other resources, finding a good doctor, taking other positive steps, then... if she feels she would like to talk to psychiatrist, then by all means. As you read above, one of the posters had a positive outcome.

    We do have good doctors locally, reassure your sister please. Sorry she had such a negative response from a physician...that can make her feel helpless and we are NOT.

    FMS is complex, this is brought home by the concerned posters who have responded to you above with published information. This is one of the Fibromite's problem, where does FMS begin????end???? does it really matter????.....and certainly we sound over-the-top when we creep into a physician's office. Then of course, not to mention some family members and friend's attitudes!

    If her mind starts spinning with all the information on this board.... a good grounding source is a book "Fibromyalgia and Myofascial Pain Syndrome, Second Edition" by Devin J. Starlanyl MD who has FMS herself.

    It is available at all book stores, also North Kingstown library has her books, if Warwick does not stock it, Sis can request it through the library Clan system. Reading a computer screen can be tiring, there is nothing like curling up with a good book.

    Take care, fondly, June








    [This Message was Edited on 06/16/2006]