fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by dms0317, Apr 14, 2009.

  1. dms0317

    dms0317 New Member

    Hi,my name is Dianne. I'm trying to help my sister who has been suffering from Fibro for 25 years. Does anyone else have cronic eye strain and fatigue and extremely sensitive hearing? Her Dr's are telling her it's Fibro related but I can't find anyone who can identify. We are desperate for help!
  2. FMsaddenedspirit

    FMsaddenedspirit New Member

    I am sorry to hear about your sister. but you have come to the right place.. we have so many people here that really know there stuff. I know I have learned more here than from my Doc.. LOL , its a great place to get some advise and to learn.. we are also here if you just need to vent , or see if a symtom is maybe realted to FM or CFS ,ME

    I personally have only been dealing with Fibro for a couple of years now. so I am still learning myself. new stuff pops up all the time ,new limits. new symtoms.

    for me , I do have some problems with my eye's , on Occ they blurr.. from the lyrcia .and when I am extreemly fatiuged ( and this is always ) the blurred Vison does not last,,, so my Doc and I are not to worried about that .
    and yes I am sensitive to sound also . adds to the anixity it seems. I also do not deal well around a lot of people and the noise . the gropcery store is pure Hell for me at times .

    I'm sure there are others here that can do better with advise than myself..

    Fibro has many many symtoms . as does CFS . and we are all Different .

    I agree with the Doc on this one it its realted

    Ok Take care.. .
  3. Shananegans

    Shananegans New Member

    You have definitely come to the right place! I have found this is the most helpful wealth of information when it comes to Fibromyalgia and CFS.

    I relate very much to your sister's eye strain and overly sensitive hearing. For my eye strain, I went to the eye doctor on a bad day so I could get glasses for the days I don't see as well. I don't necessarily have bad eye sight, it's almost like there is a slight annoying haze over everything, so on those days I wear the glasses. I also have another pair of glasses that have a slightly different prescription for the rest of the days. Sounds weird I know, but it works for me.

    As far as the overly sensitive hearing, I have no advice. I hear everything and it drives me crazy. I don't know what one could do short of wearing ear plugs all the time. On top of being able to hear ridiculously well, I also have tinnitus or ringing in the ears constantly. It pretty much sucks. And I'm sorry to hear your sister is also suffering with sensitive ears.

    Fatigue is also part of the package. I've found trying to stick to a regular sleeping schedule helps sometimes. It gets a little boring going to bed and waking up at the same time everyday, but I also have insomnia so it's very important I pay close attention to my sleep schedule.

    Hope this helps and best of luck to you and your sister.
    shananegans
  4. RENA0808

    RENA0808 Member

    I think most of us have these problems.I get pain in my eyes and blurred vision.
    I thought I was getting an ulcer in one of my eyes but when I got tested I had abosolutely NO tears in my eyes so now I have to use eye drops eveyday.
    Tell your sister to get this checked to see if it helps a bit.

    I am also VERY sensitive to noise!!!!!!!!!!!!!!!!!!!!!!!!!!!

    It drives me crazy lol.
    I can hear the clcik of the clocks all over the house....the noise of the heating system buzzing...the fridge motor....the fish tank filter...the list is endless.

    I hope she finds some relief in knowing she is not alone.

    Rena
  5. jam02

    jam02 New Member

    I don't know if its in any publication or book but my ears are very sensitive. Loud is just too much for me and I have constant high pitch squeal in my ears all the time. Diagnosed in 2003 but have had this thing since 98.
  6. Nanie46

    Nanie46 Moderator

    Hi Dianne,

    I had a Fibro diagnosis for 21 years. They give you a label for a set of symptoms with NO KNOWN CAUSE. Well, everything has a cause. You just have to find it.

    I did my own research. I knew the cause of my FMS had to be infectious. It was.

    I discovered that I had a chronic borrelia burgdorferi infection. This is a bacterial infection otherwise known as Lyme disease.

    My symptoms were exactly that of FMS. Many people with diagnoses of FMS or chronic fatigue syndrome, as well as MS, RA and many others, later found out their symptoms were caused by a chronic borrelia infection.

    99% of Dr's would never see the big picture and recognize this chronic infection. They also do not know how to properly test for, diagnose or treat it.

    I got a western blot through Igenex lab in CA....www.igenex.com. A Dr should order test #188 and #189 ...a western blot IgG and IgM...cost $200.

    You would then get a copy and post your results here on the lyme board and also go to lymenet.org and post on the "Medical Questions" board which is very active.

    99% of Dr's will not understand any of this. They wouldn't know lyme unless a bulleye rash was staring them in the face. Over 50% of people do not remember a tick bite or a rash.

    I also have sound sensitivity, fatigue, vision problems and lots of other symptoms.

    Here is a great booklet with a comprehensive symptom list in the back...if she has numerous symptoms on the list....be suspicious.

    http://www.lymepa.org/Basics2007v1.2Rev.pdf

    other great info from a lyme specialist:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Lyme is a clinical diagnosis based on history and symptoms and can be supported by labwork. It is never ruled out with just a lab test.

    It takes a Lyme literate MD to really diagnose and treat it properly with long term combination antibiotic therapy.

    All other Dr's just tell you that you have an illness with no known cause...and they never look for the cause! Then they tell you it's all in your head.

    Feel free to leave a post for me on the lyme board here if I can help you.
  7. AuntTammie

    AuntTammie New Member

    It's great that your sister has you in her life. So many people that most of us know (inc family) don't even try to understand, let alone help. You have definitely come to the right place for support and information....and yes the symptoms you mentioned are very common with many of us....I have to go to the eye dr several times to get my prescription rt bc my eyes get tired of the tests and bright lights and stuff in the exams & it becomes really hard to get an accurate script ....and noises drive me absolutely nuts - I live in an apt and there are times I want to kill my neighbors (not literally of course) bc they are being too loud.
  8. missdiz

    missdiz New Member

    Hi Diane, I've had Fibro for about 9 years and fatigue is most definately from Fibro. I haven't noticed cronic eye strain, but my hearing is sensitive..not extremely, but sensitive. Best wishes, Jan
  9. lalaina

    lalaina New Member

    Hi there: I have had fms for 14 agonizing years now. I have been on, like yourselves, the patch, morphine, etc., I tried milnapricin, had to order it from England, I live in Canada. In two days I was pain free, it was like a miracle. Unfortunately, my son forgot to order the latest batch and I had to wait 6 weeks until it arrived, this time it did not work.

    I am reading that it is now in Canada and the US, I will be first in line to get it. I am not trying to get your hopes up, but this works. It has worked in Europe and China for some 10 years, and it makes me wonder why people have to suffer when something works in other countries. I also read when it was accepted in N America the stock prices went way up, through the roof. I told my present dr about it and guess what, he bought thousands of shares. It works ladies. Oh yes it was also mfg under the name of Ixel. I tried Cymbalta but all it did was give me insomnia. Go on google and read its history, it is right there in black and white. Good Luck. I am hoping it will once again work for me. As it is right now I have been on everything and I am almost at the end of everything to try. Whatever the cost, get it.



    It is too bad we have to suffer in so much misery when governments know there is help out there.
    [This Message was Edited on 04/25/2009]
    [This Message was Edited on 04/25/2009]