I've had fibromyalgia or at least 10 years. I don't know about anybody else but without tramadol I wouldn't be able to function. As well as having a bulging disc from scoliosis life is a ball. The only people qualified to talk about fibromyalgia are the people that suffer from it...

@MSKAust

3 жыл бұрын

Thanks for your comment and glad you found it so useful. We couldn't agree more with that sentiment, that's why we released our report 'Making the Invisible Visible' about the impacts of these conditions on people's lives - www.msk.org.au/mskconsumersurvey2020/

@nevannarence6542

2 жыл бұрын

your lucky. tram was useless for me. i would be totally stones on it and still every single step i took my roommate said hurt to watch me try and walk.

@leelee2925

2 жыл бұрын

yes exactly! i have had it for over 15 years and i also have a fractured disc in my lower back as well as other back issues and RA. life is so difficult and im actually in a fibro flare for the last week. i did just order some thiamine tho bc i watched a video on it and it was said that large doses help w fibro. the video was from EONutrition on youtube and called Mega-dose Thiamine (vitamin b-12) for fibromyalgia if you want to check it out it may help you as well.

@nevannarence6542

2 жыл бұрын

@@leelee2925 im actually trying it myself. take a bunch of different things but the one herbal ive found that helps the most is cbd. the medicinal kind that they remove as much thc as physically possible. i want pain relief hate the high. also take b12 and d3. both at a larger dosage then usual. cause people with fibro can have a tendency of being low on both. in fact those i was put on by my drs at the va.

@marleneholloway7775

2 жыл бұрын

@@nevannarence6542 tramadol also tried opioids for a couple weeks useless for me

I so enjoyed this session on fibro. I’m 73 yrs old and have had these symptoms since 1996. They are more wide spread and have more pain as the years have passed. Ironically, of all the doctors including my Internist, has not officially gave me the diagnosis of fibromyalgia. Of course, I push thru my pain to get thru my daily activities. I do other things to help the pain besides oral pain meds. You have done a excellent explanation of fibromyalgia and everything it involves. Thank you so much.

@MSKAust

3 жыл бұрын

So glad you enjoyed it Gail, if you ever need some more support or information please call one of our nurses on our MSK Help Line 1800 263 265 or email them at helpline@msk.org.au

@Alipotamus

2 жыл бұрын

I’m 72. Californian woman. Fibromyalgia pain first noticed in 71. Too busy raising 6 children and too many other huge stresses to go to dr. Diagnosed with Severe Fibrocitis in ‘85. By 2,000 my pain was so severe and constant that I became suicidal and have been ever since. I was referred to a pain clinic in 2000 and was put on 15 mg of morphine sulfate twice daily for 16 years. Still in pain but functional. Kaiser drs. Took me off morphine(they didn’t want me addicted-ha). The pure daily hell has been unrelenting. I want to die! I’m terrified that if I attempt suicide I might fail. I’ve had a long time to think of the what’s and why’s about pain. In my case, I believe long term emotional trauma was #1. Normal life’s stresses like 23 moves, 6 c sections, raising 6 teens and so much more #2. Politicians coming between a doctor and his patient(even if well meaning) is destroying many chronic pain people and their families.

VERY PAINFUL.. FIBROMYALGIA

I know I'm 6 years too late and apologies for commenting but I would like to say thanks to Professor Littlejohn and to you Gen I found this webinar very interesting although not agreeing with everything said in relation to my own situation. I was diagnosed with FM a good 25 years ago now. Yes I am female, yes I was in my 40's, yes I believe stress was my trigger but no I wasn't know to over dramatize things. I am not prone to depression, I dont have joint pain and I am not a nervous person but can relate to everything else mentioned, I also have Crohns. It took several years to get diagnosed, causing my more stress than I was already dealing with. Went through the gamut of tests, doctors, opinions etc etc, the biggy we all seem to have to deal with ...seeing the doctor (in my case a female who I thought might have had a little sympathy for what I was going through) being told "its all in your head, stop malingering and whinging and get on with your life!!" that hurt the most I think. Prof Littlejohn didnt mention that one. What does bug me is being told that exercise will help, get out and exercise...exercise DOES NOT help me. It might help some...my biggest problem is I dont necessarily hurt more at the time I do things but the next few days I can hardly move. Because I dont feel bad at the time when I AM having what I think is a good day I tend to do too much and cant find a balance.. I am unable to do repetitive exercises or actions eg I can tap my foot through a song or chop veges, raise my arms in the air to hang out washing, wash my hair with two hands at once, I could go on..I tried swimming, even walking in water, Tai Chi, and others (it was at the gym when I initially crashed and couldnt even lift my spoon to my mouth to eat my breakfast!!). Prof LJ's comment of "exercise...its easy to do...do you have FM Professor because sorry, but I think that is a very shallow statement to make. Also "keep people at work"...I cant even get out of bed in the mornings and it takes me hours to get mobile.. who would employ me? My specialist said to me years ago when he was assessing me for a pension "can you be relied upon to get out of bed every day to go to work? NO! Can you say what days or hours you could work? NO! What job could you do? Well I cant sit for long, I cant stand for long, cant lift heavy things or do repetative actions, cant drive a car, dont have public transport...what jobs COULD I do?. I am on a disability pension (and that wasnt an easy road to travel but obviously their own medical assessors also agreed so I dont feel bad because I didnt stay at work!!) and my hubby is my carer for which I am very thankful because he does everything I cant. Actually 'cant' isnt in my vocabulary but 'shouldnt' or 'prefer not to' is. I know what will hurt me and what wont. As to meds, I am sensitive and react to most but opioid patches do work for me somewhat. Without them I cant get out of my chair, with them and sometimes Mersyndol (when I'm extra sore) I can function and have what I call a normal (for me) day, but not without pain. Some GP's tell me I have SLE because my ANA is sky high, other rheumatologists say no I have FM. If I have FM - I scored 18 on the pressure tests back in '95, and have 80% of the symptoms then why do steroids work for me. Im told they dont work for FM sufferers (well one Rhreumatologist said they can do). Within 2 days of taking them I am pain and symptom free but I cant take them due to side effects and massive weight gain. Pan Forte used to also allow me a pretty normal life but then I got Crohns. I am now 69 and figure "do what works for you, listen to everyone but dont take it all onboard, do what you can when you can, but dont let FM take over your life, dont let it BE you". I wish everyone with FM and other chronic conditions all the very best, have the best life you can, keep asking questions. Dont take one doctors word for anything but dont keep searching for that magic cure..it will drive you crazy. Anyone who tells you to do this or eat that and you will be cured has never had FM and is just a crock!!! There is no cure for FM. If you got to the bottom of this, thanks for taking an interest in my life such as it is...and above all else...KEEP SMILING :) thankyou. Have a great day.

Not all FM people catastrophize, many people who have FM are strong people, cant put them all in that box.

I have read in the spinal column there is a substance called substance p, that is high, where we experience pain 3times more than other people.

What can be done considering it is different for all people.

Your explanation of FM is clear,.thanks.

Thank you, that was an exceptional and very informative presentation! I think I understand FM much better now

I was born with spina bifida and decorated hips, my mom had fibromyalgia I believe, she never got a diagnosis before her death, I have had pain since I was very young. I was 31 when I got a name for the pain, I am 62 now

@eileendoherty2836

3 жыл бұрын

Explains a lot of my symptoms too hugs 🤗🤗🙏🙏

@lindawrobelkaminski5330

3 жыл бұрын

Join the club. But first it was cfs

@lindawrobelkaminski5330

3 жыл бұрын

@@eileendoherty2836 I hope you feel better soon💖💖

this has been interesting. ive had fibro since 94 but wasnt diagnoised until 2001. i suffer from many of the different symptoms. just been on a mainance mostly but this video shows i need to find a fibro doc.

I have pain all over my arms are numb all the time or pins and needles I am hot never feel cold don’t sleep ,all started with UC and had my bowel remove I have restless legs and some time the same feeling in my spine , I feel I need a wee a lot .Get a lot of anxiety tried sleeping tables they did not work for me doctor think that it was my anxiety that stopped them working as I was scared I would not wake up 🤣😂🤣😂 Some times my eyes didn’t focus .l am very forgetful.If I lift anything heavy I am in so much pain in the night and next day or two very dry mouth take 3 Amitriptylineat night they do help very sensitive to strong smell and cleaning products when I go to the shops I also feel weak when I am In some shops with their lights 🤣😂and that’s just for starters 🤣😂🤣😂😫😫😫

@naturewoman1274

2 жыл бұрын

Do you take magnesium it's great for restless leg

Good, thanks

Ive been looking at more natural solutions for my pain. Inflammation causes a lot of bad stuff. Ive started sun bathing more and it helps tremendously. I think vitamin deficiencies cause a lot of problems bc we have been lied to (FDA) about the amounts that we actually need.

I've had cfs than fibro I do have 5 back discs collapsing but claims from 4 yrs ago to this yr still don't need surgery shots if pain...well I kept falling alot right on my bottom and head...back Dr thinks it's neuro because I can't stand nor walk foot to foot I lose balance when eye closed...well it's may my appt is dec...about 4 yrs ago bad accident in car but supposedly no major injuries, I get shots in my head for occipital neuralgia...I have so much internally wrong with me and because I have so many specialists and like 22 meds I can't eat -zophran...a pill for everything some seem to work mentally and physically ...I already had an eeg-no stroke or see anything...my question to you is do you think a neurologist can help? Do you think I will ever walk again? Every yr rx'd by 2 more things wrong...im getting eaten alive and don't know how to stop...I ty now I apologize I didn't see this til now and this has been the most greatest speaking on fibro I have ever ever ever heard and the I send this to peeps that have no clue..I can't ty enough!!! I'm not to smart on if you ever happen to respond I guess I would ck your educational KZread? Anyway I will be playing you constantly and share you to so many I hope I pass it to those who will listen..ty Lindi

@MSKAust

3 жыл бұрын

Thanks so much for your comment Linda! We of course can't offer information on specific medications or recommendations but please feel free to call our MSK Help Line for support services and resources. Our nurses are here to support you in whatever way they can, call on 1800 263 265 or email them at helpline@msk.org.au

Can diplopia (strabismus) be a symptom of fibromyalgia?

Interesting. Pretty sure I have it.

@MSKAust

2 жыл бұрын

Hi Laura, glad you found it interesting. If you need any assistance on your journey with musculoskeletal health please feel free to call our free MSK Help Line and speak to one of our trained nurses on 1800 263 265 or email them at helpline@msk.org.au. Also check out our website www.msk.org.au.

Where do we go for these tests, GPS are not particularly interested.

@jennyc1846

Жыл бұрын

Get a referral from your GP to a rheumatologist...you can see as many as you please and I can bet they all give you a different diagnosis...but maybe 2 will agree :) Hope you have seen one by now and gotten a diagnosis. All the best.

I have a high pain threshold. I have had surgery and never used narcotics after. I had intestinal blockages and give birth naturally. Yet, I suffer daily.

@MSKAust

3 жыл бұрын

Thanks for sharing Michelle, I hope this webinar gave you some helpful information. We know we can't take away the impacts of conditions but we try and help as much as we can, feel free to call our help line to speak to someone - 1800 263 265 OR you might like to sign up to our webinar series, it's free - www.msk.org.au/community-webinars/

@anneisenor2515

3 жыл бұрын

Me too!

@michelleabel

3 жыл бұрын

@@MSKAust yes, thank you. My opinion is that my root cause lies somewhere in my fat. I feel pain where if something touches my skin when I am having a flare it feels like I was hit with a bat. All of the joint stiffness, etc too. I am convinced at this point that it is related to my sugar or carbohydrate intake. I am using Keto to trial it.

@jillwilliams710

3 жыл бұрын

Have there been any trials on high dose thiamine for fibro

@MSKAust

3 жыл бұрын

@@jillwilliams710 There is no definite evidence for high dose thiamine in the treatment of fibromyalgia. You may find our free webinar tomorrow night useful on diet and nutrition, you are welcome to ask questions at the end of the webinar - www.msk.org.au/events/diet-nutrition-webinar

Another sleepless night 😔😔

@alexiswinter6948

3 жыл бұрын

At bedtime I wish it was already morning.

@charlottedevries589

2 жыл бұрын

Absolutely same here no sense in getting into bed I'm just gonna be awake

@charlottedevries589

2 жыл бұрын

Don't look forward to bedtime im tired of being in pain and tired