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?
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28-12-2011 19:32 #11
28-12-2011 19:35 #12Senior Member
- Join Date
- May 2005
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 ://
28-12-2011 19:36 #13
28-12-2011 19:45 #14
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.
The Following User Says Thank You to Pinkzy For This Useful Post:
28-12-2011 19:52 #15
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.
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:
This is quite a positive, uplifting, supportive video I made for others who suffer Fibromyalgia:
Last edited by Pinkzy; 28-12-2011 at 20:08.
28-12-2011 19:59 #16
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 :-(
29-12-2011 11:58 #17
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.
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 12:04.
29-12-2011 12:01 #18Senior Member
- Join Date
- May 2005
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!
29-12-2011 13:37 #19
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.
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 13:40. Reason: adding link
29-12-2011 13:48 #20
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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