Fibro Fog?

sunnyhours
sunnyhours Member Posts: 151
edited 4. Jan 2012, 15:14 in Living with Arthritis archive
Hi everyone!

For people with fibromyalgia, I'm wondering how fibro fog affects you.
I'm thinking that's what I might have. I have nausea, VERY short term memory, RLS once in a while, pain in lower back and neck as well as some of the pressure points. I also suffer from DSPS (delayed sleep phase syndrome) which is apparently covered by Disability (however, I'm 22 so I'm unsure I want to pursue that path). Also have various chest pains and "weird" random body pains.

I'm looking for concrete examples of how this "fibro-fog" affects you?

P.S: On a positive note I'm still as optimist as I was and so far the pain hasn't gotten worse :)
So keep your chin up and think positively and it'll help ;)

Comments

  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hiya,
    I just wanted to say hi and advise against self diagnosis .
    Many of us do it, but i suggest to you if you believe its fibro you have get checked out by a specialist (they do exist i have found some),and am seeing one who specializes in P.A and fibro at Guys hosp London.

    I have also found some very good information from UK fibromyalgia.

    So many conditions can vary so much but they can also overlap. I hope you get the support you need.

    Take care n good luck :smile:
  • sunnyhours
    sunnyhours Member Posts: 151
    edited 30. Nov -1, 00:00
    I'm aware of that CJHunter and trust me if I had a choice I'd be with a compassionate doctor. Sadly since like I said I'm pretty young (22) and for as long as I can remember doctors have chalked it up to me being "insane", a painkiller addict, Münchausen Syndrome or just plain hypochondriac. However it's alright to diagnose a kid (me) with ADD, but pain is considered absurd in a child unless it's growing pains.

    So here I am, stuck in this.
    I'm not even looking forward to being treated (even though I'd like to), I just want to know what it is I have.
    P.S: I'm in Canada and it's a disease that is widely not recognized. Saying that I believe I have Fibro would make me even more of a "pain pills addict" than saying I have Arthritis.
  • jean123
    jean123 Member Posts: 642
    edited 30. Nov -1, 00:00
    Hi sunnyhours,

    Given the time difference, is it possible for you to have a word with the Helplines? Not sure if the above number is free from Canada, but you can also contact them on this forum under "Talk to the Helplines", or send them an email. They are very experienced and may be able to point a way forward.

    Jean123
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Sunnyhours, there is no need to be rude, I was giving you my opinion.
    You may well be 22 but it does not make it all in your head. I was told from the age of 12 to 25/26 I had growing pains so get on with it, So i do know how it feels to be undiagnosed, but am also aware how important it is to find a good specialist and G.P. and not diagnose ones self.
  • frogmorton
    frogmorton Member Posts: 28,053
    edited 30. Nov -1, 00:00
    Hi Sunnyhours

    l am sorry you are still being left in limbo as you are. Being made to feel 'insane' or a hypochondriac is pretty awful...for me would be the most dreadful thing to happen x:(

    If you can afford to ring the helplines it might be useful...as is redaing the info on here.

    My ex MIL has fibro and she does very much complain of loss of memory and confusion....difficulty taking things in and remembering well enough to even read a book easily.

    Her diagnosis cae fro a rheuatologist who then promptly discharged her!

    Love

    Toni xx
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Hiya,

    I've got fibro. It took 20yrs for my diagnosis. It's taken me 2 yrs to finally believe I have it. I was in my early 20's when everything 'kicked' off for me. I was diagnosed with sero-negative arthritis initially. No-one could tell me why I was getting all the other types of pain. Anyway, 2yrs ago, a rheumy done some of the pressure points and he diagnosed fibro.

    I get everything you've described but as others have said, please go to your dr and try and get a referral to someone that will be able to help you.
    The Help-line forum is also a good place to ask your questions. They'll help as much as they can.

    Hope this helps,

    Magenta x
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    Hi Sunnyhours
    Please don't feel as if you are either insane or a hypochondriac, nothing of the sort. Fybromyalgia or Chronic widespread pain, is recognised as a debilitating illness, resulting in waves of extreme fatigue, pain that is almost unbearable at times, to mention only a couple of things. I was diagnosed by a rheumatologist last year and he offered various prescriptions that help, but don't cure the illness. It is important to have a caring and supportive MD, who will refer you to a specialist, rather than stamp a label on you, that is so unhelpful when you are feeling so rotten.
    There is a lot of information out there on Fybromyalgia, with good support from others who have the same condition. Do get a diagnosis though, you will feel better for knowing what is wrong and what can be done to help. Take care and keep us posted. XX Bubbles
  • sunnyhours
    sunnyhours Member Posts: 151
    edited 30. Nov -1, 00:00
    CJHunter, I really didn't mean to come off as rude.
    And trust me I don't believe the doctors when they say these things just like I didn't believe people when they said I was lazy because I slept until 4pm either (just a different schedule...).
    I'm just trying to know/understand what causes this very short term memory (the biggest problem) I can be talking about something and then someone asks me a question and I don't remember what I was talking about. Or I have something to say to my mom, I walk from my room to her and BAM! "I wanted to tell you something...ok nevermind I forgot what it was" Or I am transcribing a phone number, I need to read 2-3 #s at a time to remember.
    I'm also the biggest paper waster I guess. Because when I think of something, if I want to remember I have to note it down, or chances are I'll have forgotten.
    The pain in my neck and nausea are also very present...
  • fibro1
    fibro1 Member Posts: 12
    edited 30. Nov -1, 00:00
    Dear Sunny

    I was diagnosed with Fibromyalgia about 3 weeks ago. I have suffered for over 10 years. I have the symptoms you describe and specifically pain at the trigger points. This is what distinguishes Fibro from CFS and fatigue syndromes.

    I have had a hellish time with doctors to the point where I have to take copies of all blood tests and go through the results myself. This is not easy as I've no medical qualifications. However, the best approach is to stay factual and give evidence where possible. One idea is to do a diary, as I did, to see patterns for yourself and take information from that to your doctor. Once you've done that ask for a referral to a Rhuematologist. You need to know for sure if you have the condition or not. I was so scared by my symptoms esp. memory loss I cried inside. Now that I know its Fibro, the relief is that it ties up all the symptoms that had made me think i'd gone mad.

    Please persevere and best of luck..
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Look on the FM site all the symptoms for what we call fibro fog are there and you can talk to people who experiance it. Take care from a not so foggy Today
    Colin

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