Long, but hoping for a response...please.....

Discussion in 'Fibromyalgia Main Forum' started by notsure, Mar 19, 2003.

  1. notsure

    notsure New Member

    I suffer from at least 10-15 of these at any give moment, obviously sometimes its more and sometimes it’s less. I typed this up after reading about FM 5 days ago, I was thinking of taking it to a doctor as I will forget about 80% of my symptoms when asked.

    If any of you have the time if you could read through it and let me know if it sounds like I should investigate FM further, my gut feeling is telling me I have finally found……home??? For want of a better word?
    But then I have been looking for answers (and someone to not look at me like I am a lazy, crazy person) for so long I might just be grabbing at straws……..


    Headaches (various locations at various times with varying intensity *grin*)
    Neck Pain (as above, although it always encompass some stiffness, and usually knots along the top of my shoulders, well I have knots everywhere apparently)
    Dizziness/unbalanced (my husband calls me unco-ordinated, if there is something to knock into or kick I will be sure to do it)
    Blurred vision (While trying to focus on things I tend to have trouble, it isn’t often blurry but not sure how to describe it.)
    Memory loss (either of things I am supposed to be doing, what I was doing, what I have already said, what I am about to say, It isn’t all day, everyday but it has become often enough that I feel very unnerved by it, also quite embarrassed even with my dh about it)
    Impaired ability to pronounce words (as above)
    Impaired comprehension of words or phrases (as above)

    Shoulder Pain
    Back Pain

    I seem to suffer from a lot of pinched nerves

    Weak arms and hands (my hands feel the ache very acutely, it is impossible to write or type sometimes)
    Hands feel puffy
    Rib cage/chest pain (especially after periods of time sitting down)
    Shallow breath (especially after periods of time sitting down)

    Abdominal cramps/aches
    Hip pain
    Painful periods (pain also in lower back area, has increased in last 6 months)
    Extreme bloating
    I have complained about pain in my kidneys, yet I have no idea if it is my kidneys or just around that area)

    Ache in legs (sometimes cramp like, other times muscle ache and yet other times it feel like my bones are about to break)
    Feet feel puffy
    Weakness in legs
    Sometimes after squatting even for only 30 secs when I stand up my shins ache,


    General Fatigue and brain fog

    Can’t remember the last time I awoke feeling refreshed. I usually take at least 30 mins to get to sleep, quite often it is up to 1-2 hours, if I awake during the night it is also hard to get back to sleep. The aches and stiffness is worse in the morning, fatigue also sets in at night. When I have been sitting for more than 15-20 mins I find my legs and back are very stiff.

    My best time is usually a 2-3 hour period during the late morning.

    I have a low pain threshold, or more accurately I seem to feel pain when other don’t, there have been times when I have been in extreme pain and have managed to deal with it i.e.; posterior childbirth, toothache involving an abscess. But things like a pin prick, a strong hug, and children climbing over me. I cannot play fight with my husband or children, I cannot cope with a massage yet a gentle backrub does wonders.

    I also feel very constricted by clothing, I only wear a bra if I go out (I have been like that for the last 10 years) as not only is it uncomfortable, it hurts! Plus things like shoes, heavy clothing etc I understand that maybe a sensory dysfunction but….


    Pregnancy 2001

    Weak Sacroiliac joints causing weakness and extreme pain towards the end. A 4 hour posterior birth using morphine, a weak back afterwards but not many pinched nerves.

    Pregnancy 2000

    Again a weak back and trouble walking, in hindsight due to the sacro joint. Birth was 6 hours posterior morphine was given too late, panic had already set in so I lost control therefore pain was worse, suffered constant pinched nerves and weakness for month’s afterwards.

    Car accident 1999

    Fractured chest bone, deep tissue bruising to abdominal, suspected damage to sacro joint.

    As a child I suffered 2 incidents which we suspect damaged my back;
    While ice skating I ran into the wall and my back bent into a banana shape the wrong way. I couldn’t walk straight away and had trouble for the next few months.

    While doing step ups I fell back onto shelves, my lower back was badly grazed and I had trouble walking for about a week.

    I am very sensitive to noise, I cannot listen to two things at once (yet I am able to hear my children at the other end of the house) I find my eyesight feels weak and sometimes it is very hard to focus when there is a lot of light or a mixture of static and moving objects (such as driving).

    I have various food sensitivities, I have noticed that berry jams make my aches worse.

    My mother has a history of allergies, sensitivities, aches, pain etc. She was involved in LSD testing at l in the 1960’s and believes a lot of her problems stem from that. I am unsure as I do not know enough but both my sister and I seem to have inherited quite a few of her food, chemical sensitivities and various physical problems.

    I have suffered from depression, anxiety, agoraphobia. I am quite obsessive about something’s like doors being locked, stoves being turned off and I put that down to anxiety. I have battled with the above for many years and am quite proficient at pulling myself out of the down moments so I only think of the ocd as annoying in day to day life, (that and the anxiety associated with driving a car but that’s a whole other story)

    I also tend to suffer from sensory dysfunction sometimes, not badly but I only really noticed it as my son was diagnosed with it.

    I also have been losing more hair than usual over the last few months, I have lot of it so I can afford to but it is a little unerving.

    Plus (wow didn't realise the list was this long!) I have IBS of course LOL

    I will have to try and find a doctor in my part of the world (Darwin, Australia) who might contemplate such a dx, I am not all that hopeful yet this is the first time I have found something that so accurately describes how I feel. The cognitive issues have become more noticeable in the last 5 months, we did move to a totally different climate where we have the air con on because of the heat, the cold makes me ache more but the heat without it exhausts me!

    So do you think it is worth me pursuing this path as a possible solution?

    If you have read this far I thank you so much!

    [This Message was Edited on 03/20/2003]
  2. Echos

    Echos New Member

    Hello. As I read your post, I realize this sounds alot like Fibromyalgia and Chronic Fatigue Syndrome. Print out what information you can and take it to your doctor. It is important at the same time the he/she rule out everything else first. Although, this is what it sounds like, you don't want to over look something far more serious. So it's very important to bring this to your doctors attention and ask he/she to start ruling out other possible problems. You do seem to suffer from the symptoms that plague all of us from day to day. Its important that your doctor rules out all else before making that diagnosis. Good luck and let us know the outcome of this. In the meantime, were all here if you ever need us.

    Love,
    Echos
    When hearts listen, Angels sing.
  3. nancyw

    nancyw New Member

    Hi Notsure: My story is remarkably like your's except for the pregnancies (I'm 46 now). I was dx'd with fibro just this last January, but I was the one who figured it out first. This either started with me at about age 2 or after a car accident in 1982. Never able to relax muscles, lots of hip, shoulder, neck pain. Been seing chiropractor for over 10 years which seems to help some. Everything really went downhill last year. Had tennis elbow in right arm and received coritzone shot and physical therapy which helped somewhat. Got severe eye infection in May and then started having spells of vertigo/dizziness every few weeks and was having terribly "brain fog" which included couldn't concentrate or process thoughts, made up all types of words when speaking, say things backwards or in wrong order, extreme fatigue (could sleep for 14 hours and get up exhausted and go back to bed within 2 hours). I have probably been to ER 8 or 9 times since last May for this. My PCP sent me to neurologist, ENT doc, did every blood test imaginable, did CAT scans and MRI, but everything kept coming back normal. I had to drop my classes last fall because of these problems and decided to take a Medical Transcription class through my college that was totally on-line both for the course and work after you finished. I just happened to be working on the MUSCLES section and saw Fibromyalgia or Fibermyositis. I remembered some doc about 11 years ago mentioning Fibermyositis, but hadn't heard anything about it since then. I looked it up, and sure enough, it really matched my symptoms. I found a doc in next town who has Fibro herself and dx'd me (she is OB/GYN so she suggested I stay with my PCP). Unfortnately, I don't think my PCP "believes" in Fibro. She was not happy with me when I went back to update her on diagnosis and change in medicines (anti-depressants, sleep aids). Now am looking for GOOD doc who knows how to treat this. I have an appointment with Rheumatologist in two weeks. I have started keeping a daily diary of my pain and symptoms as suggested on this web site and I am going to apply for disability next week. I can't imagine working in ANY capacity with this brain fog and fatigue. I totally agree in the embarrassment you suffer when you can't talk or think right. My daughter just shakes her head at me now because she knows I will ask her the same questions over and over again. Your "symptom history" is really wonderfully thorough, but I think you should also bring a shorter version for your doc to read. Have them put BOTH versions in your chart, but the doc can read the short one quickly. The way I did mine was just a list: extreme fatigue, foggy thinking, can't concentrate, muscle pain, diarrhea, tennis elbow in both arms, no strength in arms, tension headaches, numbness in face, etc. This will be easier for doc to read quickly and you can go into detail with him/her during your appt. If you try for any disability (don't know if you have it over there), this will help you. Hope this helps you and good luck in finding a doc and getting your correct diagnosis. I know how hard it is on you when everybody thinks your just lazy and crazy. Everybody here knows you're not!!!
  4. phenom

    phenom New Member

    you sure do seem to fit the bill. i'm an aussie too (perth) and there a few of us here. as the others suggested, please take your concerns to a doc and get other things checked first. fibro is an exclusionary thing, so when they've excluded all the other nasties, your left with this nasty. but its important, even after a diagnosis, not to put all your symptoms in the one basket if you know what i mean. an "oh its just my fibro acting up" take on life can lead to serious problems as you could be ignoring something bigger.

    docs are hard to find, so don't be afraid to go 'shopping' and interview them. i'm still searching. good luck with it all and welcome to the boards, let us know how you go.

    phenom
  5. HURTSALOT2

    HURTSALOT2 New Member

    It sure sounds like Fibromyalgia to me. I have all the symptoms you listed plus more. After having many, many tests done my General Practice Doctor did the tender point exam on me. I tested positive for all points. I have also had the tender point test done by three other Specialist Doctors with the same results.

    When you call to make an appointment with a doctor I suggest you ask if he or she is familiar with treating Fibromyalgia. I had one Doctor tell me to never bring up Fibromyalgia in his office again. He told me that it is a fancy word for depressed people. Needless to say, I will never see him again.

    I wish you all the best and hope you get some relief soon. Most important of all, I hope you find a good doctor. Don't waste time and your money with those who do not believe in Fibromyalgia. Maybe soon you can change your name from notsure to I'm sure. Take care.
    HURTSALOT2
  6. pamela

    pamela New Member

    I would say you have the FMS/CFS plague. Definitely print out what you wrote to us and take that in to a doctor. Call around FIRST and check to see if the doctor knows anything about FMS/CFS. Alot of doctors dont know a clue about it or they seem to think it is caused from depression or its in our heads. (Yeah right we just woke up one day and decided to be this way). Anyway I wish you luck and just be sure to research the doctors that they have experience with this before you go. HUGS....Pammy
  7. pam_d

    pam_d New Member

    It certainly sounds like fibro to me, judging from your symptoms. Obviously, we are not doctors, so we can only go by your description & relate it to our own journeys with this disease, but it certainly sounds familiar to me, from the type of pain, cognitive issues, right down to the puffy-feeling hands (a constant symptom for me).

    One thing I can suggest in your search for both a diagnosis, and to eliminate other illnesses, is to pursue what you already suspect about food & other allergies. This is often one of those underlying things that, if it doesn't actually cause fibro, is often a serious contributing factor that makes it worse. I just learned I have serious food allergies I never suspected I had; I always naively assumed if you were allergic to certain foods, you'd get a sick stomach, which was never a big issue for me. I have since found out that years of undiagnosed food allergies (like milk, gluten, soy) have caused my immune system malfunction, and may be largely responsible for a lot of my non-stomach fibro symptoms. I am taking probiotics, digestive enzymes, other supplements, plus cleaning up my faulty diet to gradually correct this. So this is an area you really need to investigate!! I found an allergist who tests for candida overgrowth & food allergies (and not all allergists do, so definitely ask questions when looking for a good doctor) who had done lots of work with FM/CFS and autism, all disorders felt to be affected by allergies & "leaky gut" syndrome. Good luck to you, I hope you can find a doctor who can give you some answers. I'm not sure where Darwin is (I had the good fortune to visit Sydney a few years ago, loved the city & the people!) but see if you can locate any fibro/chronic fatigue support groups; they are often a fountain of good information on who the best local health professionals are, and which ones to stay away from.

    Hope you find some answers, & welcome to you fom the other side of the world!

    Hugs,
    Pam
  8. Shirl

    Shirl New Member

    To the board. It sure sounds like FM/CFS or at least one of the two, certainly the FM with all the pain and broken sleep.

    I would take what you wrote to the doctor, that way you won't forget anything.

    Your sleep habits alone are a big indication that Fibro might be involved, then the severe pain in different areas.

    My husband tells me that I have 'one' pain, it travels all over my body!

    We do have several members from Australia, hopefully they will see your post here.

    Also we do have a 'Doctor Referral' link at the top of this board that you might want to look at. Its possible they may have a doctor in you area.

    I sure hope you get some help soon. I have had Fibro for 20 years so I know how horrible this alone can be to live with.

    Please let us know how you are doing, and if we can help in anyway, just let us know.

    Again, welcome to the board, you just may have found a 'home'!

    Shalom, Shirl