Bonjour! I’m new here.

[Roz87310]

I am a retired Brit living in France. I have suffered a number of symptoms for a few years and have done the rounds visiting various consultants for each individual symptom. Nothing seemed to show apart from a bit of arthritis in my knees and depression.
I put all my symptoms into Google thinking “all these things can’t possibly be a thing” but fibromyalgia popped up. It appears that tick all the boxes!
Shocked to discover this, I contacted a friend who I knew had been diagnosed a couple of months ago. After talking to her I am sure that I need to return to my GP and ask to be referred to a pain specialist. She has been helped so much with anti epilepsy treatment and anti depressants.
I am looking forward to learning and sharing with you all

 

[sunkacola]

Greetings, Roz, and welcome to the forum!

A good place to start learning about how to manage fibromyalgia is to read the post I wrote for newcomers to the forum. I always encourage people to be proactive and take charge of their health and do everything they can to make things better for themselves. May things you can do or change in your daily life can ease the symptoms of fibro and help you to live a better life in spite of having this syndrome.

While medication has its place it is unwise to depend on it entirely for your pain relief because often medications have bad side effects, do not continue to work in the long term, or are addictive. So, while you are experimenting with medication I encourage you to experiment also with all of the other things you can do. Or better yet, start trying out things even before you go the pain medication route. For many people doing this will lead to a better understanding of their body and also a lessening of symptoms, allowing less frequent use of drugs, or a lower dosage to control the pain.

I hope you find support and information here. We are here to help.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Auriel]

Hello Roz, welcome to the forum ️, ooh you live in France, yeah. I was put on anti epileptics and anti depressants, (but they didn't do anything for my fibro), they just gave me, bad side effects, what are your doctors like, are they good? I got diagnosed with rhuematology (gabapentin's the only thing I've found that works the best for me) it hasn't gone butit made a better difference (and makes me sleep better too) but some things work for some people and some don't, yes have more tests (rule things out, or in) years is a long time to have these symptoms (but it goes that way sometimes with this "wierd" condition)

 

[johnsalmon]

I put all my symptoms into Google

google is good but a rheumatologist is so much better

 

[Roz87310]

Bore da
Yes, I live in La Belle France and my Dr is amazing. Cant fault the health system over here apart from that they all speak French but most of them have good English and my French improves as time goes on. (I grew up in Cardiff but my Welsh is pretty ropey)

I am plucking up the courage to go to see her. She referred me to a Neurologist a while back but nothing was found. I had physio, am waiting for a sleep clinic appointment. I have never linked all my symptoms before. I just think she will think I’ve gone bonkers… I sounds like I’ve gone bonkers...but I know I haven’t. She’s a great listener though.

Yes, Gabapentin is what my friend was prescribed…on Medicine Plus Drug Information it says …”Gabapentin capsules, tablets, and oral solution are used along with other medications to help control certain types of seizures in people who have epilepsy”
Im glad to have found this forum. I know nothing about this condition and I have so much to learn.

 

[sunkacola]

google is good but a rheumatologist is so much better

"Dr. Google" is highly unreliable.

 

[Auriel]

I use my gabapentin for neuropathy pain, (seems to help, makes me drowsy though) cardiff's not far from me, I'm near bridgend, (I'm not sure if I want to stay in wales either, I just know where everything is) it's a safer bet, (what with other health issues I had going on last few months)

 

[JayCS]

As ever on search engines, I differ - can't remember if I shared my experiences & thoughts on them lately, but:
"Search engines" have been 100x better and more reliable than docs for me.
Search engines brought me, Roz and probably most of us here, that's for one. I didn't walk here!

And if a search engine result pointed Roz from cluelessness to fibromyalgia then I'm happy that's something to go on. Results show hopefully relevant web pages, we compare them, gain knowledge, learn to judge and distinguish good from bad by successes and mistakes - that's the web, that's life.

A search engine is a tool, not a doctor. Like all tools (and doctors ) we need to learn / know how to use them. Pretending to believe in doctors in my first half year of fibro not only harmed me cos their trials were useless. It was also the depending on their purported expertise that made me turn my own brain and self-expertise off, try their bad medicine too naively, and not even consider trying forums until even a fibro clinic turned out useless for meeting other helpful people with fibro.

For those who don't know me: I'm not slagging off doctors here at all, altho I've just had the worst specimen yet, a cancer doc who is leaving me dangling by simply not managing to give me results. Even he is probably a chaotic genius who I wrong-footed. Almost all of my 50+ docs in the last 3 years were nice and did their best.
I've just come to think that self-expertise is by far the best way, because our conditions are so complex and completely invisible to those outside of our bodies. And this self-expertise needs guidance from others far away, so we need the web, and to use that we need good search engines, and to use these we need to distinguish the quality of webpages, and even then the quality, viability and relevance for us of the information on them. To help with that we need to think for ourselves and find people like here on the forum, where - just like docs and websites do - we differ in opinion amongst each other (and sometimes ourselves...).

 

[Roz87310]

Thanks JayCS. I couldn’t agree with you more.
In France we can freely change our Doctors, unlike in the Uk where the old boys network still works. I changed my GP and mt cardiac specialist very successfully.
As a result I have found good Doctors that work with me rather than against me.
With my GP, my searches on Google are welcomed as an opening to discussion. She is open and sees It that I am my own Dr with her guidance and expertise as a resource.
The reason I am not looking forward to the discussion on this is that I find that my symptoms are so variable and multiple that it’s hard to know where to start.
So Dr G has not only pointed me in this direction but provides me with concise information to begin our conversations.
Of course, one needs to be sceptical when using the web but used wisely it is a fabulous resource !

 

[johnsalmon]

"I put all my symptom s into Google thinking “all these things can’t possibly be a thing” but fibromyalgia popped up. It "

depending on what order you enter your symptoms into the search engine determines what the outcome is. putting them one way may indeed bring up fibromyalgia putting them another way may indeed bring up ALS in the early stages they are almost the same symptoms the order etc of the wording in the search bar can make a big difference now if you really need some fun then try ChatGPT (ask it "tell me about the symptoms of fibromyalgia"
but to use g-o-o-gle or Wiki-pedia or even chatGPT is a bit like asking the witch doctor to kill a chicken and diagnose your problems by looking at the intestines

 

[Auriel]

How did you manage to type ggle without going into moderation queue johnsalmon

 

[Roz87310]

"I put all my symptom s into Google thinking “all these things can’t possibly be a thing” but fibromyalgia popped up. It "

depending on what order you enter your symptoms into the search engine determines what the outcome is. putting them one way may indeed bring up fibromyalgia putting them another way may indeed bring up ALS in the early stages they are almost the same symptoms the order etc of the wording in the search bar can make a big difference now if you really need some fun then try ChatGPT (ask it "tell me about the symptoms of fibromyalgia"
but to use g-o-o-gle or Wiki-pedia or even chatGPT is a bit like asking the witch doctor to kill a chicken and diagnose your problems by looking at the intestines

Thanks Johnsalmon. Yes, it would be very silly of me to think that I have anything approaching a diagnosis from Google.
I have explored a number of conditions with similar symptoms online. Obviously there are very vital symptoms with other conditions that I do not have..… at this time.
But I am more informed today than I was last week. I have an appointment with my Dr next week and she will no doubt refer me to local consultants that will perform tests to try to establish exactly what is going on and what will help.
I am delighted that I was able to short cut to this point via use of the web.

 

[Auriel]

Roz, what's the old boys network?

 

[sunkacola]

How did you manage to type ggle without going into moderation queue johnsalmon

it did go to moderation and then was approved.

 

[Auriel]

Aw, I must av been slow on the forum today