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  1. #11
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    I'll be back to post more about this later, but until then I am interested to know...how did your family/friends react when you told them you had Fibro?

  2. #12
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    DH's parents and DH have been amazing since the diagnosis, my parents think its something they have done :/// Wtf? Always make it about themselves ://

  3. #13
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    Quote Originally Posted by Pinkzy View Post
    I'll be back to post more about this later, but until then I am interested to know...how did your family/friends react when you told them you had Fibro?
    Not much reaction really, as I have had so-called 'chronic RSI pain' for so long. I guess it's just another name to them. It was good having DH in the dr with me the other day as he explained it well and hopefully gave him more of an idea of why I get so tired and grumpy!

  4. #14
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    I have 10 minutes to spare, woot!

    My family really didn't react at all when I told them I was sick. It was DH's reaction that will always stay with me I'd been sick since the birth of our son, so for a few months. We'd been to so many doctors and for so many tests and we had no idea what was wrong.

    It was my first appointment with a specialist and after reading through all my results, symptoms etc, he asked if he could call DH in so he could talk to us both. The doctor explained Fibro to us and then went on to explain the medication. DH asked him how long I'd be sick for, the doctor said that I was in the middle of a "flare" and that flares come and go. When he said there was no cure DH put his head into his hands and cried It was just so sad. Luckily by September I was out of the "flare" and feeling so, so much better.

    DH and I have learnt to live with it as best we can. My parents saw how sore I was on Sunday night (after having been so busy in the lead up to Christmas). Dad hugged me and made me promise to take it easy the next day (We put on Boxing Day party here for DH's family). Mum insisted on coming to help and she did So while they didn't react to the diagnosis, they definitely see/realise how awful an illness it can be and go above and beyond when it comes to support.

  5. The Following User Says Thank You to Pinkzy For This Useful Post:

    V8  (29-12-2011)

  6. #15
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    I made these videos shortly after I was diagnosed last year and still coming to terms with the illness. They're both honest accounts of what I was feeling at the time.

    http://www.youtube.com/watch?v=nrE6hlpsmKI&list=UU1Q2AcQuXnbR4hEEOji5hnQ& index=13&feature=plcp



    http://www.youtube.com/watch?v=lnR7-y27-tg&list=UU1Q2AcQuXnbR4hEEOji5hnQ&index=12&feature= plcp
    This one is still hard to watch as it's quite personal and I remember being up until 3 or 4 in the morning making it.

    This video explains the XMRV risk and how it relates to Fibromyalgia:

    http://www.youtube.com/watch?v=oPDdUo0v5jg&feature=slpl

    This is quite a positive, uplifting, supportive video I made for others who suffer Fibromyalgia:

    http://www.youtube.com/watch?v=XARd6...8&feature=plcp


    Last edited by Pinkzy; 28-12-2011 at 19:08.

  7. The Following 2 Users Say Thank You to Pinkzy For This Useful Post:

    Johnny Poppers  (14-01-2012),V8  (29-12-2011)

  8. #16
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    My husband suffers from Fibro :-( he has to be home by noon at the latest as his body shuts down from being in too much pain and lays in dark room for hours "blackout sleeping"
    He also suffers from severe depression - so both things feed off each other and easily turn to cronique fatigue.

    You name it - he's tried it! He really wants to get his legs chopped off as he feels this is the only way he would get some relief :-(

  9. #17
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    Quote Originally Posted by Mahjong View Post
    Sounds so much like me Vee! I try and watch the caffine and soda drinks as much as I can, maybe one or two drinks a week max from now on if I can get away with it. Just takes my body back too far with the energy!

    Im starting to get back into the exercise again too, I just cant be stuffed half the time so Im into the Yoga on the Wii Fit and Golf as well which gives me exercise and stretches my muscles out hugely.

    DH hasnt had any massive health issues, just nursing me for the last 3.5 years lol! Since DS2 was born Ive had a D&C, Hysterectomy, endoscopy and my gall bladder removed, not much left to take in my body lol!!!
    I was thinking of getting the wii fit plus thing too to do yoga, but i'm joining the gym soon so shall give it a go there first. Gosh you've been through a lot in the last 3.5 years that must have been really hard. Glad your hubby has been helping care for you, i must have been thinking of someone else's hubby that's been unwell. I didn't realise that the diet drinks were so bad, like i knew there were bad, but i am kicking myself for letting my kids drink it, we used to buy it for DH, but i'm not having it in the house anymore as there's no reason we should be drinking it at all.

    Quote Originally Posted by Berrie View Post

    I was diagnosed with fibro in August of 2008, and I've been on disability since October 2009. I'm going back to uni next year, as I'm doing much better now.
    I pretty much tried every medication on the market, did pain management twice, and nothing worked until I started taking Norspan.
    I'd be great to chat to some other painies on here
    Great to hear of others that take medications that work, i know it's a lot of trial and error, i mainly don't take medicines due to pregnancy and extended breastfeeding as my 2 youngest have allergies so i need to watch what i take, generally take panadol, but it doesn't really give any relief so i just put up with the pain.

    Quote Originally Posted by Pinkzy View Post
    Me ...kinda obvious given I'm the BH ambassador for Chronic Illness .

    Diagnosed with Fibromyalgia 1 week before my 27th birthday last year (late May 2010). My son was almost 3 months old at the time. The pain is only really bad during flares, it's the fatigue that is the main problem.

    I was on a cocktail of medication at first but these days I only take the "hard stuff" during flares. I take Panadol Osteo every day as well as Magnesium and other vitamins frequently.

    Lupus and MS are huuuuuuuuuuuge in my family so I'm tested for Lupus (doctors orders) every year without fail. I've been putting the MRI off for 18 months now (I don't believe I have MS and am claustrophobic so there's no point).

    Glad to see there are other Fibromites here on the hub
    Hey Pinkzy glad you found us here I'm glad to hear you don't have lupus either, i went to get checked for that and the specalist cost about $300 i only went there cause my pain specialist sent me there cause of some blood test markers, anyways the lady basically said i'm fat (I was 7 months pregnant at the time) and that i need to stop having naps during the day so i get a more restful sleep at night, she made me feel like it was all in my head and i left in tears, rude biatch she was. Waste of time and money that was.

    With the family support, my mum is helpful, like if we're up there she'll generally take over all the nappy changing with the baby cause it's hard for me to get onto the ground change the nappy and then get back up, so she does help by doing things like that. I think she knows how much pain i'm in, but just feels helpless to do anything. I don't have a supportive partner in some ways because he has a brain injury and i'm his carer, but physically he has no pain symptoms, and he does the majority of the housework as it causes me pain and fatigues me and then i'm no help to anyone, so we are kinda like two half people that make a whole, it really sucks having to rely on eachother and it's extremely stressful.

    Noticed you started a weight loss thread and you've lost a good amount of weight already which is awesome. Do you think it helps your pain by having less weight on your joints? I'm hoping to lose about 20-30kgs (currently about 94kg) and am hoping by reducing the weight my pain levels will be more manageable.

    Quote Originally Posted by Laksa View Post
    Thank you for starting this thread
    I was diagnosed with fibromyalgia in June this year after 10 years of constant pain from 'RSI'. Most of the pain is in my wrist and forearm but I only get it in my neck and back. Another thing is almost constant sciatica

    I had a really good chat with my doctor recently, his wife has chronic fatigue and many aspects are similar. He said it's a lot to do with how the brain suppresses pain messages. I am going to go have a big talk with him in Jan (had kids with me last time).
    I take Endep 10 at night so I don't get woken or struggle to fall asleep from the pain. I don't like taking painkillers so only do so when it's really bad. It kinda sucks that I am just used to it now...
    I have heard of endep, that's what the doc was going to prescribe after my pregnancy and when i stop breastfeeding. But i'm not planning on stopping feeding for about 2 years, depending on how my body holds up. I'm glad your DH understands and can be supportive. It's hard when they can't see or feel how sick you are when you look perfectly normal hey.

    Quote Originally Posted by CrissyG View Post
    My husband suffers from Fibro :-( he has to be home by noon at the latest as his body shuts down from being in too much pain and lays in dark room for hours "blackout sleeping"
    He also suffers from severe depression - so both things feed off each other and easily turn to cronique fatigue.

    You name it - he's tried it! He really wants to get his legs chopped off as he feels this is the only way he would get some relief :-(
    Oh that is hard having to support someone with fibro and depression and you're so right if one's not managed properly it will affect the other and vice versa. He really needs to get quality sleep and exercise can help with depression. I plan on making small changes gradually to improve my health and im hoping it pays off.

    So today, i woke up and had a hot water with lemon in it (supposed to kick start your motabolism or something) lol And yesterday i ate very healthily (tuna salad for lunch, crumbed chicken made with gluten free bread crumbs and mashed potato and veges for dinner, and i had NO soft drink all day, it was really hard, but i just drank lots of water. The last of the diet soft drink is nearly gone and i'm not buying any more either. So even today after a decent sleep, healthier food and no soft drink my pain levels are amazing compared to yesterday, i was barely functioning at all yesterday hence starting this thread, so i'm hoping i can continue to make healthier choices and that it makes a difference. Obviously i'm still in pain all over, but it's nowhere near as bad as yesterday.
    Last edited by V8; 29-12-2011 at 11:04.

  10. #18
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    Good morning ladies! How are you all today?

    Ive just got home from clothes shopping (Xmas vouchers lol) and I have to say I could sleep the rest of the day now! It's exhausting walking around the shops these days

    Vee: Diet drinks are the pits! The artifical sugar in them sets my symptoms off even worse and doesnt help the IBS!

  11. #19
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    Quote Originally Posted by Mahjong View Post
    Good morning ladies! How are you all today?

    Ive just got home from clothes shopping (Xmas vouchers lol) and I have to say I could sleep the rest of the day now! It's exhausting walking around the shops these days

    Vee: Diet drinks are the pits! The artifical sugar in them sets my symptoms off even worse and doesnt help the IBS!
    I hate how walking around the shops makes you tired too, i usually choose my parking carefully so i walk the least distance to and from the shops and also while I'm doing my shopping i plan it so that i'm not going back and forth from one shop to another and doing too much. Doesn't help after having a c-sec either another reason i'm determined to get my health better just to function better for myself and my kiddies.

    I am convinced now about how evil the diet soft drinks are after reading this bit in the foods to avoid link i posted earlier:
    You might think you’re doing your thighs a favour by choosing a ‘diet’ version of your favourite food or drink, but artificial sweeteners are even worse for us than regular sweeteners. Aspartame, (E951) is a neurotoxin and carcinogen, more popularly known as Artificial Sweeteners is found in foods labelled "diet" or "sugar free". Aspartame is believed to be carcinogenic and accounts for more reports of nasty reactions than all other foods and food additives combined. Known to erode intelligence and affect short-term memory, the components of this toxic sweetener may lead to a wide variety of ailments including diseases such as lymphoma, diabetes, multiple sclerosis, Parkinson's, Alzheimer's, fibromyalgia, and chronic fatigue, emotional disorders such as depression and anxiety attacks, dizziness, headaches, nausea, mental confusion, migraines and seizures. Plus, in combination with other food additives like artificial colours, artificial sweeteners can have a much more potent effect on nerve cells.
    The above bolded are some of the symptoms i've had and hoping to reduce them by getting rid of these nasty drinks!

    So today i did a quick grocery shop, just fruit, veg, juice, and gluten free stuff, and it was $160! I bought some flaxseed oil for salad dressings which is apparantly good, some brown rice, chia seeds and some dairy/egg/gluten free pancake mix to have with some yummy sorbet Even though i'm going gluten and dairy free i want to still have some treats and make things tasty Today for lunch i'm going to have a chicken with salad, and dinner i'm going to attempt to make a fried rice dish with brown rice, capsicum, corn, shallots, and red onion. If i find the link to the recipe i'll link it for you to see and i'll tell you how it turned out

    ETA - Found the link Rice Salad
    Last edited by V8; 29-12-2011 at 12:40. Reason: adding link

  12. #20
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    V8, less weight definitely helps with the pain. However it's mainly the healthy eating and exercise itself that results in better rest, more energy and feeling good.

    I've been eating crap over the last month or so and it's really taking it's toll now (damn holidays LOL). I believe the current increase in pain and fatigue (almost what I'd call a flare) is due to not getting enough exercise, water and proper nutrition. I look forward to starting the rest of my weight loss journey on Monday not just to lose more weight...but to start feeling better.


 

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