Life with fibro around the world

Hi to all fellow Members.

I found this support group by searching on the internet. I wanted a genuine support group with all of the qualities this group has to offer - friendship, advice, support, opportunity to vent, to be able to talk about fibro to people who know what you're actually talking about. And now I've joined the sub group for people with fibro and arthritis. I've lived with these conditions for a long time and have mostly kept it to myself until my health forced me to retire. I still don't think people understand fibro but having arthritis and ongoing surgery because of it has sort of made my health issues 'acceptable' to the wider, uninformed community. (I might not have always used the correct terminology for those who don't understand fibro but the words don't always come to me when I want them).

Anyway, what I want to say is "welcome to all new members and hello to all current members". I'm saying a particular welcome to all Australian members, not to separate myself from the international members but to share and receive information about the different medical, government, social services systems, etc. that we have in Australia.

I've read with great interest the challenges and systems facing fibro sufferers in America and Canada and I must confess I don't understand all of the acronyms which are familiar to you and I can see that some of the support systems and opportunities for access to those are different.

I have a sister and a nephew in the UK who also have fibro and I know what a battle they've had to have it officially diagnosed and recognised and to receive advice, help and support.

I was lucky to find a doctor who supported me for many years through to my diagnosis and never once doubted me. I now have a new doctor who has other fibro patients so she is well informed on challenges and treatments.

Forgive me for rambling on but 'sharing' has been a long time coming for me and I thank you all for giving me this opportunity and I encourage all new members to do likewise.

Gentle hugs

Jamey

Jamey, so nice to have you! Hope you can find what you're looking for, I'll be glad to help if I can! Hopefully some of our beloved Aussies will step in and say hello to you!

Hang on to that Dr, some of us go through absolute hell to find that magic one!

Yes, and you have us to gab to! Don't for get that!

Welcome, Jamey! I too appreciate seeing how universal Fibro is and how the different countries accept or understand what we are going through on a daily basis. I often wonder how easy it is for all to get the many different drugs we try for relief, as well as the alternative means.

It’s so great to see how far this great site travels! I totally enjoy bragging about “my friends” all over the world - it puts a smile on my face through the tough times.

Hi Jamey and thanks for your introduction and telling us about what life is like for you in Australia. I know of so few people from there that it's fun as well as fascinating to meet someone from "the land down under." What a bummer that fibro strikes people there as well! I guess I'd secretly thought that maybe we Americans held the record on it due to our polluting ways. I know, silly, but always a thought in the back of my head.

At any rate, I'd love to hear more about how your system works. I presume that Australia has socialized medicine so you're not left without any medical support in your country if you're unable to work, which is good.

I'm really sorry that you and your sis and nephew all suffer from fibro. That's one heck of an unlucky turn of events. Awful enuff that one member of the family has to get it but worse still when it's 3.

Thank heavens that you've had two great doctors who've helped and supported you in your battle with fibro. I can't believe some of the doctors that some people have encountered and the stupid things they've said to their patients. As SK says, hang onto your gem of a doc!


Welcome to the fibro site and I am sure you'll find the support and friendship you are after.

Jamey, we don't always know the acronyms other members use. I know I don't so I just ask them What does.............stand for? So, I would suggest that you do the same.

We are so glad that you found this group. It's a very good online support group, very active with many caring people. So just join in whenever you feel ready.

Gentle hugs

Rachel

It's always interesting to see how doctors are treating fibro (and arthritis for that matter) in different parts of the world :) although i'm in Oz as well. Thank goodness for public medicine, though to be honest I end up seeing my specialist privately or else I have to wait two years >.>. It's still a heck of a lot less expensive than seeing specialists in the USA without insurance.


Hi Jamey,

What a wonderful thing to read this morning! I'm so happy that you have found the support you wanted here. One of the worst things about Fibromyalgia is having to deal with people who don't, or won't, understand. Many of us have family and friends that don't believe us or support us. If you look through the discussions, there are many threads about it. That's why I love this group, it's a place where we can get great support!

I'm American, and I'm trying to get the hang of Canadian medicine, so I'm just as confused. If you ever see something you don't understand, just ask, anytime! I'm sure we'll be asking you the same!

Hugs,
Renie


2 years? Here in America, the average wait for a specialist is about 3 months. But: we also have to pay for these so-called wonderful insurance policies... I pay $2500 ($2443 Austrailian) per month for just me and my husband! I guess every country's healthcare has it's ups and downs.

Hi Jamey,

It's always good to meet people from around the world. I am from the UK and chose to use only this site as the one here is more confusing than fibro fog itself. I'm sorry you have family here with fibro but I think they may find it easier than some to afford the healthcare.

I'm sorry you have arthritis too. There are many on here with arthritis aswell as fibro and I'm sure they will be a great support for you too. Hopefully you will enjoy this site as much as the rest of us. We are a very friendly and "approachable" group so you will gain a lot of information that will help you.

Take care of yourself

Jo

I am newly diagnosed and want to know what “firo fog” is. Since I started taking gabupentin I feel spacy. It worked rather well the first month or so and now not so much. I see the arthritis Dr on Wed so I hope we can work this out. I love in Arizona and it is supposed to rain thurs and Fri. I am worried about the pain I will be in. Any drug options I can discuss?

Sorry for confusing you Keirsten,

"Fibro fog" is a term to describe the mental fogginess, poor concentration and memory problems we suffer as part of the fibromyalgia. Hope this clears it up for you.

Jo

Thank you. It makes sense and I get it. I thought I was getting dementia.

Haha. I know what you mean. We're all getting dementia then lol.

Welcome, Jamey! I too understand how universal Fibromyalgia is and how it is understood and accepted in Europe because I lived there with Fibrmyalgia for 7 years, just returning to the USA since July of this year. I can relate to the different drugs that are offered and the therapies that are used. I look forward to getting to know you and to learn more about the upcoming research possibilities for Fibro and the variety of treatments and therapies used in the UK now and what future prospects may there be for us.

Again... Welcome and God Bless

Gianna

Thanks to everyone for your replies, comments and advice. I will certainly ask if there is something I don't understand in future.

We all seem to have different challenges around the world but the one we all have in common is the lack of understanding and belief in us and our symptoms. I am lucky to have finally found medical practitioners who understand and believe but, like most others, it was a long time coming and the battle to get there was painful, depressing, confidence bashing and exhausting. People around me still don't understand that just a poke with a finger can cause intense pain or even a comforting arm around the shoulder - or that I can wake up in the morning feeling more tired than when I went to bed and so stiff and sore that I don't want to move.

That is where support from this group is so good for all of us. For those just starting their journey, there are those that can empathise, offer advice, share info and a virtual shoulder to cry on. For those well into their journey, there is a comfort in knowing they are not alone by any stretch of the imagination and that they can share their experiences and learn from others' experiences. And, again, there is always that virtual shoulder to cry on.

Now I've opened the floodgates I could ramble on forever! But I won't. So thanks again everyone, and have as lovely a day as you can.

Gentle hugs.

Jamey

Yes Jamey, where do I start, as an Ozzie originally from the uk I think that I have an idea where you’re coming from. What a cruel disorder this is? As a new member I thank you for your welcome, I know that it is well meant because you also experience the horror of this condition, and I’m sure suffered as I have from medical people who simply don’t get it. I am sad that you have relatives in the UK who similarly suffer but I think that one of my much younger relatives has this condition but no one except me yet believes them!! Doctors, well all we want is for them to believe us, of course, a cure would be nice, but in the absence of a cure to be believed is basic. Gentle hugs. barb

Yes Barb, you are so right..............to be believed in is all we ask or to be accepted by friends and family.

A support group is also vital and this is the best one that I have found so far.

Jamey, we're so glad you found us. Each member adds their uniqueness to our group.

thanks for joining this great site i hope u find all that u r looking for and more

like other said please ask questions. i live in the usa but have a few friends now that live in the uk. we spend alot of time translating back and forth. i am pretty good at the language now but it took time. i am sure that with time u too will learn the different terms used by different people on here. living where i do u can travel just 12 hours and find yourself in a state that uses words and phrases i dont know. so i can only imangine how it is living in another country.

2 years? 3 months with cost? Here in Canada it's free :) and about 3-6 months to see a specialist. And lately I've been getting into my gp in 24 hours, no cost again! :)