Advice on my Mother

Discussion in 'Fibromyalgia Main Forum' started by smwwat, Dec 5, 2005.

  1. smwwat

    smwwat New Member

    Hi. This is my first time posting. I do not suffer from fibro or cfs, but my Mother does. She has for over 10 years. She sees a specialist in Charlotte. She has had ups and downs, but this is the worst she has ever been. She just turned 52 on Saturday and I hate to see her this way. She is staying with me for extra help & support right now. My Stepfather has just been diagnosed with a liver disease and he is often sick as well. My brother has severe anxiety and is just all around a difficult person to live with. We all stay in the same house right now, which is my house and it isn't very big. My question for all of you that suffer from fibro & cfs, is have you had any physical symptoms? My Mother currently stays in the bed all day. Her muscles have atrophied, her skin & appearance have changed. She has been to many doctors who all say it is psychosomatic. She is so frustrated and depressed. She seems to have lost hope. Doctors do not understand and her specialist has offered only so much help. She has been hospitalized several times and many tests have been run. Nothing physical has been found. Any similar experiences or advice would be very helpful. I am desparate to find help for her. Thanks.
  2. laura81655

    laura81655 New Member

    This must so difficult and tiring for you. I am 50 and in pretty bad shape from the pain of FM, however I force myself to get up in the morning, shower, fix my hair, move around as much as possible. If I don't my pain is even worse with less and less activity.

    I pray that your Mom can get the help she needs.

    Laura
  3. chickadee

    chickadee New Member

    I also live in Charlotte - my PCP manaages my FM as I have other issues also that I see him a lot for.

    But, there are a lot of resources in Charlotte - one being the Hunter Hopkins Center (you can check them out on the Internet) and another that I've been told is good is the Integrative Health Services(connected to Carolinas Medical Center) on Scott Ave. You can also call the Arthritis Patient Services and ask for a referral.

    I actually have had good luck with doctors in Charlotte believing in FM. (They don't know what to do about it but they are sympathetic!).

    Good Luck
    Chickadee
  4. Shannonsparkles

    Shannonsparkles New Member

    Have you looked into the FFC (Fibromyalgia and Fatigue Centers)? Type FFC into the search box to read the posts. It's a center that specializes in treating these diseases, even if you've been sick for a very long time. They have a very good success rate.

    If nothing has shown up on the tests, then they're not doing the right tests. CFS/FM people are often very deficcient in certain nutrients, hormonally imballanced, and loaded with viruses. FFC is very thorough in testing, and test specifically for the things that we usually have. They have protocols in place to treat with both natural substances and drugs.

    Most important: Don't let ANYONE tell you it's psychosomatic. That's doctor terminology for "I don't know what the problem is." It's not worth seeing a doctor who doesn't believe in you. It's best to get one who will take you serriously, or at least give the benifit of a doubt. Being called "psychosomatic" leaves scars.

    For things help CFS/FM people feel somewhat better are: diet, supplilments, alternative therapies, and certain drugs. Type these into the search box, and you will get a world of good information on things that help. There is no need to feel hopeless!!! Also, "Stomyskye's protocol" is a good thread for things that help. Or you could keep posting with questions about particular things. The library will have books on how to help CFS/FM. These are things that you can start doing right away that will make a difference!

    To answer your question about whether we have physical symptoms... YES!!!!!! Here is the Master Symptom List. This is a very good one to fill out and bring to doctors. She may also write in how long she's had each symptom, and how severe it is.

    Master Symptom List for CFS, FMS, CMP & Lyme Disease

    Note on Symptoms: many of these are symptoms common to other diseases. Getting a proper diagnosis for CFS, FM, CMP, Lyme, and other tick-borne diseases is as much ruling out other diseases as it is looking at the clues in dozens of tests and the actual physical exam.

    By Melissa Kaplan, The Carousel Network, May/June 2003



    AUTONOMIC NERVOUS SYSTEM / ENDOCRINE / IMMUNE / HORMONE

    Abnormal sensitivity to hot or cold
    Allergies (nasal, other; new, increased or worsening)
    Canker sores (frequent)
    Chills and/or shakes when hungry (may occur instead of feeling hungry)
    Cold hands and feet
    Feeling hot or cold often
    Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills, extreme fatigue after minimal exertion
    Hair loss (alopecia)
    Herpes simplex or shingles rash
    Increased susceptibility to infections
    Low-grade fevers
    Low blood pressure (below 110/70)
    Low body temperature (below 97.5)
    Lymph nodes painful, swollen (in neck; under arms)
    Night sweats (not related to menopause or fever)
    Orthostatic Intolerance (neurally mediated hypotension)
    Reactive hypoglycemia and insulin resistance
    Thirst, increased
    Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
    and body temperature; low body temperature (below 97.6 F / 36.4 C)
    Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)


    CARDIOPULMONARY / ESPIRATORY / CIRCULATORY

    Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations;
    dysrhythmia)
    Cough
    Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
    Heart attack
    Heart palpitations
    Heart pounds so hard it shakes body, bed
    Pulse skips
    Serious rhythm disturbances of heart
    Sighing, frequent, not related to mental/emotional state
    Stroke
    Vasculitis


    CENTRAL NERVOUS SYSTEM / NEUROLOGIAL / NEUROPATHIC / OTOLOGIC

    Abnormal CAT, MRI, and/or SPECT scans
    Alcohol intolerance
    Aseptic meningitis
    "Brain fog"; inability to think clearly (often referred to as “fibro fog”)
    Difficulty moving tongue to speak
    Diminished or absent reflexes
    Fainting or blackouts; feeling like you might faint
    Headaches (frequent, severe, recurring)
    Hearing fluctuations (sounds fade then return)
    Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
    Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
    Libido (decreased)
    Light-headedness, feeling spaced-out
    Migraine headaches
    Muscle twitching
    Noise intolerance
    Paralysis or severe weakness of limb
    Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
    Photosensitivity
    Radiculitis
    Seizures; seizure-like episodes
    Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
    Severe muscle weakness
    Syncope (fainting)
    Tinnitus (ringing/noises in one or both ears)
    Touch or weight of clothing on or against body causes discomfort or pain
    Tremors, trembling


    COGNITIVE FUNCTION

    Becoming lost in familiar locations when driving
    Difficulty with simple calculations (e.g., balancing checkbook)
    Difficulty expressing ideas in words
    Difficulty moving your mouth to speak
    Difficulty making decisions
    Difficulty following directions while driving
    Difficulty remembering names of objects
    Difficulty remembering names of people
    Difficulty recognizing faces
    Difficulty following simple written instructions
    Difficulty following complicated written instructions
    Difficulty following simple oral (spoken) instructions
    Difficulty following complicated oral (spoken) instructions
    Difficulty integrating information (putting ideas together to form a complete picture or concept)
    Difficulty putting tasks or things in proper sequence
    Difficulty paying attention
    Difficulty following a conversation when background noise is present
    Difficulty making and/or retrieving memories (long/short-term memory deficits)
    Difficulty understanding what you read
    Easily distracted during a task
    Feeling too disoriented to drive
    Forgetting how to do routine things
    Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
    Forgetting how to get to familiar places
    Impaired ability to concentrate
    Losing your train of thought in the middle of a sentence
    Losing track in the middle of a task (remembering what to do next)
    Poor judgment
    Switching left and right
    Slowed and/or slurred speech
    Stuttering; stammering
    Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
    Word-finding difficulty
    Using the wrong word


    DIGESTIVE / HEPATIC

    Bloating; intestinal gas
    Decreased appetite
    Digestive chemicals (acid, enzymes) reduced or absent
    Esophageal reflux; heartburn
    Frequent constipation
    Frequent diarrhea
    Food cravings (especially carbohydrates, sweets)
    Food/Substance intolerance
    IBS
    Liver function impaired; mild abnormalities
    Increased appetite
    Nausea
    Spleen tender or enlarged
    Stomach ache, cramps
    Vomiting
    Weight gain or loss


    EQUILIBRIUM /PERCEPTION

    Bite your cheeks or tongue frequently
    Bump into things frequently
    Difficulty discriminating printed matter despite proper vision correction
    Distances (difficulty judging when driving; when putting things down on surfaces)
    Dizziness or vertigo
    Dropping things frequently
    Dysequilibrium (balance problems)
    Impaired coordination
    Loss of balance when standing with eyes closed
    Perception (not quite seeing what you are looking at)
    Some patterns (stripes, checks) cause dizziness
    Spatial disorientation
    Staggering gait (clumsy walking)
    Words on printed page appear to jump off page or disappear when staring at them


    EYES / VISION

    Acuity changes not related to prescription changes
    Blind spots
    Blurred vision
    Conjunctivitis
    Diminished visual acuity in absence of actual vision change
    Drooping eyelid
    Double vision
    Eye pain
    Flashes of light perceived peripherally
    Optic neuritis or atrophy
    Oscillopsia (image jiggles)
    Prescription changes more frequently
    Pressure sensation behind eyes
    Red and/or tearing eyes
    Retinal damage
    Slowed accommodation (switching focus from far to near, near to far)
    Spots or floaters not related to migraines
    Swelling around eyes
    Uveitis and/or iritis
    Wandering or lazy eye


    HEAD / NECK / MOUTH
    Bell's palsy (facial paralysis, one or both sides)
    Bruxism (grinding/clenching teeth)
    Canker sores
    Dizziness when you turn your head or move
    Dry chronic cough
    Dry eyes, nose and mouth (sicca syndrome)
    Pain in ears, palate, gums
    Periodontal disease
    Prickling pain along skin of jaw
    Problems swallowing, chewing
    Runny nose in absence of cold, allergies
    Sinus infections
    Sore spot on the top of your head
    Temperomandibular Joint Syndrome (TMJ)
    Unexplained toothaches
    Xerostoma (dry mouth)


    MUSCULOSKELETAL

    Arthritic pain that migrates from joint to joint
    Carpal tunnel syndrome
    Frozen shoulder
    Intermittent joint swelling
    Joint aches (arthralgia)
    Joint pain, without redness or swelling
    Loss of tone
    "Lumpy, bumpy" long muscles
    Morning stiffness
    Muscle aches (myalgia)
    Muscle pain, stiffness, weakness
    Pyriform muscle syndrome
    Reduced range of motion
    Stiff neck
    Writing causes pain in hand, arm shoulder


    PAIN SYMPTOMS

    Abdominal pain
    Chest pain
    Debilitating generalized pain (arms, neck, shoulders, hips, legs, etc.)
    Muscle pain (all over your body)
    Painful tender points (FMS: 11 out of 18 tender points)
    Shooting or stabbing pains

    PSYCHOLOGICAL SYMPTOMS / MOOD / EMOTIONS

    Abrupt/Unpredictable mood swings
    Anxiety or fear for no obvious reason
    Appetite increase/decrease
    Decreased self-esteem
    Depression or depressed mood
    Feeling helpless and/or hopeless
    Feeling worthless
    Frequent crying for no reason
    Helpless/Hopeless feelings
    Inability to enjoy previously enjoyed activities
    Irritability; over-reaction
    New phobias/irrational fears
    Panic attacks
    Personality changes (labile, irritable, anxious, confused, forgetful)
    Phobias (irrational fears)
    Rage attacks; anger outbursts for little or no reason
    Suicidal thoughts or suicide attempts


    SENSITIVITIES

    Acute or abnormal reactions to medications
    Alteration in taste, smell, and/or hearing
    Chemicals (alcohol, medications, perfumes, smells; lower tolerance for)
    Food sensitivities
    Increased perception of and sensitivity to noise
    Light sensitivity
    Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)


    SKIN / NAILS

    Abnormal scarring
    Acrodermatitis Chronica Atrophician
    Blotchy or mottled skin
    Bruise easily
    Bruises may take longer to appear, and/or longer to fade
    Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
    Dermographia (minor scratch pressure on skin leaves vivid red welts)
    Dry, itchy skin
    Easily scar
    Eczema or psoriasis
    Fragile nails
    Frequent skin irritations
    Lymphadenosis benigna cutis
    Nails that curve under or downward
    Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
    Painful skin (abnormal/excessive pain when scratched or rubbed)
    "Paper" skin (feels fragile, tissue-thin when rubbed)
    Rashes on body, face
    Vertical ridges or beads in nails


    SLEEP SYMPTOMS

    Abnormal brain activity in stage 4 sleep
    Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
    Difficulty falling asleep
    Difficulty staying asleep (frequent and/or prolonged awakenings)
    Hypersomnia (excessive sleeping)
    Myclonus (restless leg syndrome; occasional jerking of entire body)
    Nightmares (frequent, extremely vivid and/or disturbing)
    Unrefreshing/Non-restorative sleep


    UROGENITAL / REPRODUCTIVE

    Decreased libido
    Discharge from breast or galactorrhea
    Endometriosis
    Frequent urination
    Incontinence
    Impotence
    Infant: premature; low birth weight; low muscle tone; failure to thrive
    Interstitial cystitis
    Miscarriage or stillbirth
    Painful intercourse
    Painful urination or bladder
    Pelvic and/or rectal pain
    Prostate pain
    Swollen testicles
    Other symptoms worsen before start of menstruation
    Worsening of PMS


    OTHER

    Abnormal or other changes in sweating
    Activity level reduced to less than 50% of pre-onset level
    Burning sensation (internal and/or external)
    Cancer
    Changed voice
    Changes in sweat odor/body odor
    Delayed reaction to over activity/exertion (onset 24-48 hours after exertion)
    Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
    Fatigue, prolonged, disabling, made worse by exertion or stress
    Fibrocystic breasts
    "Galloping" cholesterol and triglycerides
    Hair loss (not related to age, hormones, diet, medication)
    Hands hurt excessively when put in cold water
    Handwriting changes, altering signature and/or other writing
    Hoarseness
    Painful, weak grasp that gives way/lets go
    Periods of concentrated thinking causes physical and mental exhaustion, increases pain
    Sore throat
    Swelling/Idiopathic edema (fluid retention syndrome)
    Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
    Symptoms change focus from time to time, like infection is moving through the body
    Thickened mucus secretions (nose, bowel, vaginal)
    Thickened "sleep" around eyes in mornings
    Very attractive to biting flies and mosquitoes
    Weight changes (usually gain)


    COMMON CO-INFECTIONS AND DISORDERS

    Babesiosis
    Cytomegalovirus (CMV)
    Epstein-Barr virus (EBV)
    Ehrlichiosis
    Herpesvirus
    HHV6
    Iron deficiency
    Mercury or other metal toxicity
    Mycoplasma
    Systemic mold and/or mold sensitivities

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    LIST #2:


    HERE IS ANOTHER FIBRO CHECKLIST:


    GENERAL
    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress


    PAIN
    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain


    GENERAL NEUROLOGICAL
    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance


    EQUILIBRIUM/PERCEPTION
    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at



    SLEEP
    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)


    MOOD/EMOTIONS
    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes


    EYES AND VISION
    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision


    SENSITIVITIES
    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing


    UROGENITAL
    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)


    GASTROINTESTINAL
    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)


    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis


    OTHER
    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)


    COGNITIVE
    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive


    Thanks for comming here! It's so good of you to help you mother, and to put up with all the extra people in the house. Please keep posting. We're eager to help any way we can. (((( ))))

    [This Message was Edited on 12/05/2005]
  5. jake123

    jake123 New Member

    I just wanted to say that you will have jewels in your crown in heaven for taking care of your family like you do!
    Does your mom have a wheelchair? Maybe getting her up everyday and combing her hair and putting lipstick on, park her in the kitchen and have a cup of coffee with her.
    My mom died in 1999 and I'd just give anything to sit and have coffee with her. I miss her so much. It took me a long time to get past her death. I'm still on antidepressants.
    I have four sisters but she lived two blocks from me. I'll just whisper this, she preferred me over the others. Ha! We've always been very close, I cooked with her, sewed with her, cleaned house with her, you name it.
  6. JLH

    JLH New Member

    First of all, welcome to our board and online support group. I certainly hope that you will find some answers here to your questions about your mother as well as contribute often to help us, too!

    I can't believe that you have acquired so much of the responsibility of your family's caretaking. This is really unfair to a young woman with a serious boyfriend. However, I know we all can't understand why God places so much on some of our shoulders. There is a saying that states that He will not give any of us more than we can handle.

    First of all, do YOU believe that any of your mother's problems are psychosomatic? She just might have a combination of psychological problems as well as physical health problems which would include her fibro.

    She sounds like she is clinically depressed--you stated that she is very frustrated, depressed, seems to have lost hope, and hospitalized many times. Is she currently being treated by a psychologist or psychiatrist?

    Her muscles are in such shape because she never gets out of bed. If she has been on disability for some time, then she must be on Medicare. Check and see if Medicare would cover the cost for her to be placed in a rehabilitation facility for a few weeks to see if they could get her on a program to help rebuild her muscles.

    Rehabilitation and counseling are the only suggestions that I have to offer. Then maybe her primary care doc could get her on some meds to stabilize her. Her perhaps you could take her someone who knows a lot about different herbs and supplements that would help her--go the all natural way????

    You really need to find some way to get them back on their feet so they can be living in their own home--she is too young to be totally dependent upon you--and you DESERVE to have your own life, too. And your brother--I really don't understand his medical condition--when you say that he is really difficult to live with--I really don't know what you mean. Should he be living in some type of assisted living facility or a group home????? Is he a major contributing factor to your mother's emotional and/or physical condition? I hope I have not said anything out of line here--I'm just throwing out some things to think about.

    I have not had any similar experiences myself. I have many health problems myself and I am just now getting to the place where I need assistance with shopping trips, etc., but it is not the fibro that is causing me the majority of my problems now.

    I sincerely hope that you find, and get, the help that you need.

    Hugs,
    Janet
  7. trinity3

    trinity3 New Member

    yes, you do have ALOT on your plate right now... and i am sure that the situation with your mom is frustrating you... but please, one thing i learned as a nurse.... 'treat the patient not the disease'.... this is very important... i know that the doctors are telling you things about her being 'psychosomatic' and all of that... well, half of this board has had that happen to us and it is just not true.... the doctors often disregard chronic fatigue syndrome and fibromyalgia because they dont know what causes it or how to treat it... however, it does sound like your mother is suffering from depression... now, whether the depression is because she is sick and no one believes her or is helping her, or the depression is in itself severe enough to be causing physical symptoms (which it does) needs to be determined by a doctor... one who actually takes her seriously and cares... the bottom line here is not whether or not your mother is psychosomatic or not... the issue is that something is wrong, something is making her sick enough that she is wasting away... and THAT is what matters... not whether or not a blood test says she is sick or not... but that she is obviously symptomatically sick... and needs treatment and help... please be one of the few who takes her seriously and treats her with dignity and truly tries to get her the help that she needs... as someone who has suffered with these illnesses myself and have had doctors give me the same 'psychosomatic' label, and has had even my family disregard how sick i was, i can tell you that it will only make the situation worse... but it will do a world of good if you support her and understand that there is a whole messageboard of people on here who have suffered the same way... who are very sick... and have been disregarded and disrespected... many of us have found doctors who know better and are getting good treatment now... please do get your mother some help... the fact that you came on here to ask is a wonderful step...
  8. Bambi

    Bambi New Member

    needs an antidepressant to get her mood improved. Then I'd hope you can get her doctor to get her some physical therapy to get her back in some sort of physical condition to get up and "move" every day. She needs stabilizing right now and THEN she can begin to work on the diet, medications and all the other things it takes. It sounds like she is really in a crisis situation with her body and mind right now and I would try to get those addressed first. Good luck and bless you for caring and taking your mom in to help her. Take care of yourself extra well also or you could end up depressed also. There are, besides this board, boards or chat rooms for caretakers. Read all you can about that. Take care! Bambi

    I am editing this because I wanted to say one more thing. As far as you being saddled with this responsibility, it may "not" be fair but you are doing the right thing. We ARE our brother's keepers and taking care of our own, especially our ill or elderly parents, is both a moral responsibility and and honorable one.
    I have great respect for you doing what you are and I sincerely think you are doing what was intended and even commanded by our maker. If you are not relegious I don't mean to offend you, I just believe you are doing the right thing!![This Message was Edited on 12/06/2005]
  9. smwwat

    smwwat New Member

    Thank you so much for all of your replies. Mom does go to the Hunter Hopkins Center in Charlotte, NC. Her specialist is Dr. Charles Lapp and he has been very good to her. She sees him only once or twice a year; he gives her phone consultation as well. He has her on Lexapro (antidepressant) and pain meds. She is getting in home therapy form an OT and PT. This just started a couple of weeks ago after I begged and pleaded with her primary physician. Problem is her depression leads her to not do the activities that they are recommending. I have talked to them about putting her in rehab if the at home program does not work. So that is a possibility in the future. She has been officially diagnosed with fibro & cfs years ago and receives disability for the conditions. Her recent tests have shown low potassium and some thyroid problems, but nothing that has concerned the doctors too much. We have gotten her a wheelchair to aid in her doctors visits, etc. I have done lots of research mostly through the internet on the condition, but I have never seen a list as comprehensive as the one sent to this posting. Thanks and I will print and share that with my Mom. I have shared lots of articles and info. with her, but she is convinced that it is more than fibro/cfs,but tests indicate that it is not. I believe in her and treat her with the most respect & dignity. I am constantly looking for an answer
    for her. I do believe that part of the problem is psychological now and that the doctors did her more harm than good. They do not understand her condition and treat her as a mental patient, except for Dr. Lapp. However, he has told Mom that she needs a regular physician as well. It is hard to find a good one. I just know that she feels very poorly and that is what I focus on, trying to get her better. The disease is hard to understand, but I know it is real and I have seen what it can do. Also, I have read so much material on it that I understand lots better than I use too. I truly appreciate your support and comments. She is on supplements that I have researched to help with the muscle wasting-fish oils, liver detox (milk thistle), glutamine, primerose, something I found called immunopro rx and of course a muti-vitamin. Maybe some of you have tried the immunopro before, it is suppose to be good for fibro/cfs, it is mostly whey protein. Again Thank YOU!

    I do go to the doctor with her quite frequently. I have even visited her doctor on my own to explain how she feels. She has seen a therapist, but it didn't do much good. She is currently seeing a psychologist that I really like and he specializes in hypnotherapy. I go to all of these visits with her and it is interesting to watch. I am just not sure how much it is helping her yet.
    [This Message was Edited on 12/06/2005]