Fibromyalgia

Katherine30218445

My mum has fibromyalgia and has been dealing with it for years. Although difficult when youre in pain, she finds that exercising really hrlps her. Just a light walk/jog every day. She says when she doesnt do this she really notices a change in her symptoms.

Leonardus

No idea what it is

antzy

My boyfriend has Fibromyalgia and was diagnosed with it about 10-11 years ago. He struggles every single day. He wakes up feeling like he's never slept all night, he can't walk for long (which is sad because he loves short distance running and athletics, and wanted to take it up professionally and seriously, but now he can't do it). When we go on holidays, it's a bit hard because he always needs a rest but he does really well for someone with fibre. It's hard for him to sleep as well (he's had medications to help with it but they haven't really helped) and he can just fall asleep anywhere when he's absolutely drained. I really want him to see a fibro specialist but they're just so expensive. He also has a long ankle injury that's received surgeries for but it has gotten worse, and he's also got spinal problems (recently diagnosed with extensivee sclerosis). Sigh. Massage has helped him, but he's hoping to do clinical pilates to help him with all this (fibre, back pain and ankle pain), and seeing a chiro regarding his back pain.

juneebabe

Hi savvykeli, I am Lynne & have been diagnosed with fibro for 25 years but now know that I basically have had it for most of my life. I had a very traumatic childhood & things that happened then forced the illness to appear years before it was going to. I've learned to live with fibro & attempt not to let it rule my life. I find that by doing acupuncture & remedial massage worked brilliantly on me. I also found that Tai Chi is most beneficial for me. We can all tell you what works for us BUT we are all different - you find something that works for YOU !! OK.
I left a bad marriage & moved over 1,000k's north for my health so 1/ I was in a safer place for me - 2/ I was in a warmer climate for my fibro - it hated the coldness of the South West Slopes NSW. Sometimes you have to look at the big picture to see how fibro affects you. I was most lucky here in Grafton to find a Fibromyalgia group that meets once a month so we all brain storm. Good to know I wasn't alone - I can't begin to tell you how much that helped. A good supportive family & friends is great too. If you ever need to chatthen I'm up for it. I'll keep monitoring this post. Keep positive thoughts savvykeli it helps a lot. xx

Shennae

I am 20 years old, diagnosed at 16 or 17. I also suffer Lupus SLE. It's a lot for me to deal with so young but I try to be a normal young woman who likes shopping, knitting and smartphones. I have constant pain in my legs and back and wake up feeling like I was run over.

amanda6393

Read this:
http://www.marksdailyapple.com/fibromyalgia-pharmaceutical-companies-promotion-marketing/#axzz2BJ0Z4fwt

and this:
http://www.marksdailyapple.com/just-one-small-change-leads-to-amazing-results/#axzz2BJ0Z4fwt

juneebabe

Hi savvykeli,
I am now 60 & been diagnosed for about [give or take a year or so] 20 years with Fibromyalgia Syndrome. I used to live in a climate that was totally unkind to me for a fair amount of the year until i left the stress of a marriage where my husband blamed his cheating & lies on my illnesses [hence major stress] & since our children were adults now i left a 38 year marriage [almost 41 yrs now] in favour of my life. I moved over 1,000ks' north & have been here almost 2 1/2 yrs & found that the move has helped my stress levels & my health on a number of levels. I have managed to find a Fibromyalgia Support Group here in town [Grafton NSW] & to basically be on my own & then to have the support of "like sufferers" was amazing. I know i will never be 100% but to know that i can manage on my own has given my self esteem a major boost. I also now have a dr who understands what i am suffering from & supports me [never had that down south]. The main support though is from my 2 children who luv & support my decision to live & even though i am so far away from them & my 3 grandchildren notice the improvement in me when they've seen me. I still have very bad days - when i do too much, when the weather is changing, & sometimes i think for no damn reason at all except to slow me down - so i have to take the day off & do nothing. The new pain meds are working with the exception of weather changes - but for me freedom from lies & stress & bad weather as well as a huge northerly move helped me. Everyone must live their own lives - i am & luvving it. xx

Nic

I was diagnosed with fibromyalgia about 14 years ago. I have learned to manage it reasonably well and hardly have any nasty episodes anymore. A couple of things trigger an episode - high stress levels and very cold weather. I do believe massage has helped me and listening to your body and respond accordingly. I often run out of energy in the afternoon as another person said. I have tried acupuncture but it didn't help me and other techniques. When I have a bad episode I must go to bed and rest as that is the best way to manage the pain and aches. It is a horrible illness and it will be great once some more insight can be gained into this. Good luck to all who have to deal with this.

Nic

I was diagnosed with fibromyalgia about 14 years ago. I have learned to manage it reasonably well and hardly have any nasty episodes anymore. A couple of things trigger an episode - high stress levels and very cold weather. I do believe massage has helped me and listening to your body and respond accordingly. I often run out of energy in the afternoon as another person said. I have tried acupuncture but it didn't help me and other techniques. When I have a bad episode I must go to bed and rest as that is the best way to manage the pain and aches. It is a horrible illness and it will be great once some more insight can be gained into this. Good luck to all who have to deal with this.

mauvehaze

I have fibromyalgia, also a friend of mine does too. We share similar symptoms, but also have other different symptoms from each other.
I can work tirelessly for hours and hours and walk endlessly, then later on it hits me with all the fatigue and aches.
I’m sensitive to perfumes, scents from flowers, candles etc. This will often cause me to have a headache as well.
I feel the changes in weather and ache as it sets in to rain or thunder.
I have an irregular heartbeat, ridged nails and I bruise and scar easily.
I’ve had menstral problems, bloating, cramps, pelvic pain, tender breasts.
My body aches, I do have osteo arthritis but when the heavy tiredness hits at the same time I realise that it’s the fibromyalgia again. So I rest, take it easy for a few days and if possible get a massage from a sports rehabilitation physiotherapist, followed by a long soak in a warm bath and then I go to bed.
I used to get a massage from a physiotherapist whose mother suffered from fibromyalgia. Her advice was to rest for however long it took.
I've had it for 20 years. I don't fight it and carry on any more as it takes longer to recover when I do that. I make time for me and rest with a good book, or go to bed and sleep.

Cajun Spice

I haven't. Is that from ticks? Are the symptoms similar? I have been diagnosed as having Fibromyalgia by a specialist in that area.

Yes it is from ticks--though I was born with it and I un-knowingly passed it onto my daughter too, invitro. I was only diagnosed early last year--2013. It can also be passed on sexually, or by spiders and mosquitos. I have Chronic Lyme and Co-infections--with Firbo symptoms

Lyme can imitate most illnesses like MS, Parkinsons and Firbromyalgia etc etc. I just found a weblink that should be helpful to you--and all on here with Fibro. The link is from USA but is relevant to Australia too. The video is also quite informative. Michael J Fox actually has Lyme Disease and not Parkinsons.

http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease


Here is an Aussie Lyme link with some of the symptoms :

http://www.lymedisease.org.au/about-lyme-disease/about-lyme-disease/

I hope this is helpful !!!

mauvehaze

Hi !! Have you--or any other on this discussion been tested for Lyme Disease ??

I haven't. Is that from ticks? Are the symptoms similar? I have been diagnosed as having Fibromyalgia by a specialist in that area.

Cajun Spice

I have fibromyalgia, also a friend of mine does too. We share similar symptoms, but also have other different symptoms from each other.
I can work tirelessly for hours and hours and walk...

Hi !! Have you--or any other on this discussion been tested for Lyme Disease ??

Auntymare

I have fibromyalgia, also a friend of mine does too. We share similar symptoms, but also have other different symptoms from each other.
I can work tirelessly for hours and hours and walk...

Hi mauvehaze. I know exactly how you feel. I'm not too bad in the mornings but it feels like the batteries need changing by the afternoon. I just run out of energy. You really do need to stop when you begin to feel this way. Sometimes I get to have a couple of days where I feel almost normal - but then I crumble. At times it is an effort to brush by teeth or comb my hair.
Your advice is definitely correct.

Tricia

I to have fibromyalgia it is hard to diagnose I was lucky to be referred to the Fibromyalgia clinic at Monsh Hospital. I found out that no 2 patients are they same.About the same time I had problems with my back and was admitted to Epworth Rehab what an eye opener 10 patients with fibromyalgia no 2 the same .The main specialist in this field isDr Daniel Lewis go to his web site there is thungs to help.. I unfortunately got the drug sllergy side very bad but I can walk somewhat more freely than a lot if other patients. Do vheck out the Monash Clinic they are wonderful and everyone is bulk billed. Also go to Dr Lewis' s site he has regular forums and work shops.Hope this is of some help.

888shelley

My husband has fibro, our daughter is an accupuncturist and has been studying fibro and you may get some help from accupuncture and also remedial massage therapy(which I am an accredited practitioner). Yoga practised very gently will also benefit.

Meggles

I have had this for 30 years I have learned to manage it well and stop it affecting my life too much. I am Margaret Bull on Facebook and picture is a dog