Discussion in 'Fibromyalgia Main Forum' started by nan2bart, Oct 23, 2005.

  1. nan2bart

    nan2bart New Member

    Dear Friends...I have never posted here before but I need some proof that this thing called fibromyalgia isn't all in my head.
    First I want to know if all of you have unrelenting pain over 98-99% of your body? Since my pain was given a name in 1993, it seems to me it just keeps getting worse. I am 64 so I realize my body is going to hurt in the normal places of someone my age. But, what about all the other places where I have pain that no one I know, at any age, has?
    It is almost impossible for me to believe that my body can hurt so bad without just crumbling up in a pile on the floor.
    I limit myself and plan as far ahead as possible for an event that I know will be stressful and physical, but even when I plan ahead, after the event I spend at least a week in bed. Not moving is the only relief I know of.
    Am I just a huge complainer or what? I'm sure you folks reading this can relate to a lot of what I've said, but is absolute constant pain with no let up, and I am not exagerating, what FM is all about?
    Thanks for taking the time to read this rather long message.
  2. Tigger57

    Tigger57 New Member

    Yes, unrelenting pain all over the body. Foggy brain, and tons of other things.

    I also try to plan ahead. I try not to plan too much for one day. And no, you are not a huge complainer.

  3. LollieBoo

    LollieBoo New Member

    I don't think I can tackle the 'what FM is all about', but I can reassure you that you are not the only one out there both to experience the agony of FM as well as question their own psychological contribution/ repercussions.

    My DH tried to explain to one of my 10yo son's friends today why I was in bed at 1pm in the afternoon. He tried to explain FM/CF and how it affected me- and included that with the "crud" circulating, I was trying to avoid coming down with it. The boy thought my DH was making it up. When I finally forced myself out of bed, joining my three kids and three of my son's friends, my son's buddy said, "Is it true what he said about you having some sort of disease that makes you really tired and makes stuff hurt all the time?" When I answered yes, I tried to clarify as best I could, why I usually 'seemed' okay, and pointed out how often I asked for help from the boys when they were around as evidence. he seemed a little bewildered, as I am a young mother in their circle of friends, having had my son at the age of 19, and I usually try to engage the kids as much as I can, and avoid being around them if I am really suffering.

    You are not just a complainer, and part of dealing with chronic pain issues is worrying about how you appear to other people. I tend to hide out when it's really bad. Unfortuately, that can be long stretches of time. If I go out, I may have a bad hip, a wrist brace and elbow support on my right hand one day, and knee supports and a wrist brace on my left hand the next! I think back to jokes about the hypochondriac, limping on one leg one day- the other the next, as if they'd 'forgotten' which leg they were claiming hurt.... it is hard for others to understand, but I finally got to a point to where I will do what I have to do to be at least funtional enough to be around my children (sometimes that has to include being around 1/2 the neighborhood!). That is my primary goal. As far as what anyone else thinks- pooh.

    If they have any questions, I will answer them honestly. i don't have to deal with worrying about that. As for you- having dealt with CONSTANT pain for over 12 years; you've earned the right to do what you need to get along as best you can and not worry about any labels others want to place upon you. Know that you can make it to the important things, but hten you will need to take it easy, or even 'drop out' for a week afterwards.

    Please keep posting, Nan-
  4. JLH

    JLH New Member

    Welcome to our board/support group, Nan!! I hope you will stick around!!

    Yes, unrelenting pain is my first complaint and then unrelenting fatigue is the second!!!!

    You can easily get proof here from ALL OF US that your pain and other problems ARE NOT IN YOUR HEAD!!!!!

    You probably do also have arthritis, like the rest of us that are "getting older", but your pain is also caused by fibro!!

    You are right in trying to plan your events, allow for time to recuperate, etc. You do have to keep moving, though, or you will end up in worse shape!!

    Since you were diagnosed in 1993, does your primary doc have you on certain meds to help? Like I am taking Cymbalta, Neurotin, and Zanaflex at bedtime to help me sleep. I have had a sleep study and find that I have obstructive sleep apnea, and sleep with a CPAP machine and oxygen. All of this helps my fibro pain. I also go through a lot of heating pads!!!

    If you are not familiar with the meds that I listed, let me know and I'll explain them.

    If you have a facility close by that has an indoor pool, just walking around in the water, or taking the arthritis aerobic warm water exercises is great for fibro.

    I'm 54, married, with 3 adult children and 2 grandchildren, and retired due to poor health. Hope to talk with you more.
    Keep asking all the questions that you want to!! We'll be glad to help!

  5. MamaR

    MamaR New Member



    In the beginning of this terrible nightmare it wasn't so bad....but every year gets worse for me. Like yourself, I am getting older, but I see little gray headed ladies working at jobs and say....they are aging normally!

    I do know that we go through flares...but I have been in one for about a year now. I can't do anything without paying for it. I am so happy to hear that many others here on this board do come out of it, and begin feeling better. I think that it is all in the treatment that we receive for our particular case, like getting the correct medication that works for us, the right docs, etc.

    I haven't been on this site very long, but I have learned SO much info! We truly feel like we have someone that can REALLY relate to us!! We are not all alone in this thing!
    Remember... there is hope for us to feel better...keep telling yourself that...o.k? I will remember you in my prayers!

  6. patches25

    patches25 New Member

    Hi Nan, Wow, I am 64 too, and I was diagnosed with this in 1993 too. I know I have had it many more years than that but didn't have a name until then. Even though my 84 year old mother has this too, she has less pain than I do. So it can't be just growing old and aching.

    You are entitled to complain. You are sick. I hope you will find a doctor who can help you. I don't see a doctor for this condition but I am encouraged by the responses to the FFC doctors. I am looking forward to one day going for care there. In the meantime, I do the best I can with nutritional supplements and OTC meds. I hope you will be doing better soon. Hugs to you. E.
  7. jennypee

    jennypee New Member

    You poor thing! No, it's not all in your head. I feel absolutely crazy sometimes because I have this intense pain that no one can actually witness, besides myself of course.

    The more I read on this board though, the more I realize that, contrary to what my doctors have told me, my symptoms are not unusual at all.

    Glad to have you here!
  8. JLH

    JLH New Member


    Since you are new here, you probably have never seen the list of Fibro Symptoms below.

    So you think you are complaining about just pain and fatigue -- look at how many things that fibro sufferers can complain about!!!!!!!!!!!


    ____ 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

    ____ 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

    ____ 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

    ____ 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

    ____ 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)

    ____ 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

    ____ 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 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

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

    ____ 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)

    ____ Rashes or sores
    ____ Eczema or psoriasis

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

    ____ 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