So many questions

Tamzinann

New member
Joined
May 3, 2021
Messages
6
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
I am 26 year old and have just been told by my doctor its looking more and more like fribo (Not been agonised yet). Have had a few test and having a few more, but I have so many questions in my head!

Like how long does it take for a digonses? I'm in the UK.
What pain relief is there? I'm already take codeine as they won't put me on anything else at the moment.
Will this stop me training? I'm training to be a MHN.
It's already affected my mental health massively I just don't know where to even begin.. is there books I can read? Is there blogs? I'm so lost it really taken me off my feet :(
Please help me unjumble my mind.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,199
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi there, and welcome to the forum.

Some of your questions are addressed in a post of advice for managing fibro that is pinned at the top of the General Forum. Read that and see if something there is helpful.

Diagnoses take such varying lengths of time it is impossible to say how long it takes. Since it is a diagnosis arrived at by ruling out the other things it could be, it also depends on how fast those tests are run. So it takes whatever time it takes, longer for some than for others.

The diagnosis itself doesn't really help, except for giving you something to put on forms, because there's no cure and no treatment that works for everyone.

Whether or not it stops your training is unknown. It is in part up to you, and how you learn to manage it and live with it. And in part it's determined by how bad your pain is and if it will let you do the work or not.

There are many things you can do to help yourself, and I advise starting as many of them as you can right away.

One thing I can say for sure is that codeine is addictive. If you take it for very long at all you may find that you need more and more of it to be effective, and even if that doesn't happen you can become physically addicted to it. So in your own best interests, look into other things you can do besides taking a narcotic for the pain.

There are many good posts and threads on this forum that you can read that may be helpful to you to read. Additionally, all of us here are here to help and we will tell you our own experience, what we have learned, and so on. This may be your best resource for information but you can also find things online. Just be very careful what you believe online because there's a lot of misinformation out there and don't pay anyone who says they have a cure.

Finally, know that you are not alone! Even though we are not there in your town we are here for you and will answer your questions and support you and listen to your problems and give you suggestions as best we can.

Hang in there. You can do this.
 

Tamzinann

New member
Joined
May 3, 2021
Messages
6
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Thank you,
I sorta feel like that's it my life its been stamped and doomed if you get me. Its all very new I knew about it but never thought I would be the one to get it. But my doctor thinks I've had it late teens early 20s.
I feel really alone. I only know one person with it and she was the one that pushed me to get checked but I don't want to annoy her with questions.

I've been reading alot on here and its been really helpful. Thank you.
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
83
Reason
Diagnosis
00/0000
Country
CA
State
Canada
Hello, hang in there. There are a lot of useful information in here.
 

Tamzinann

New member
Joined
May 3, 2021
Messages
6
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
I know I'm happy I found this forum :)
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
404
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Like how long does it take for a digonses? I'm in the UK. It's already affected my mental health massively is there books I can read? Is there blogs?

I sorta feel like that's it my life its been stamped and doomed if you get me. Its all very new I knew about it but never thought I would be the one to get it.
I feel really alone. I only know one person with it and she was the one that pushed me to get checked but I don't want to annoy her with questions.
I got the fibro-diagnosis after "only" the first 3 months. 1 rheum Nov19 said it wasn't that, sent me to neurologists (and they to a psychiatrist and 2 sleep lab psychiatrists) and an endocrinologist, all tests negative. So 2nd rheum, Feb20: fibro. (Mind you, like you I knew about it and my GPs and I had been thinking it might be that for quite a few years, just it hadn't flared fully yet. That speeds things up...!)
However I wasn't satisfied - many of my symptoms looked like other things. The tests for these take longer depending on your insurance/finances: With the NHS its often slow, esp. cos of CoV, it's also hard to change docs; private is faster, you can change docs and get 2nd & 3rd opinions quicker if you're not satisfied or they arent working fast enough for your taste...). It's also a question of how much time and energy you can invest: I did 45 docs & 15 physios in 1 year, that's not possible for most, but I'm semi-privately insured, was on sick leave anyway and have a lot of inner energy. Then it also depends where you, the docs and your employer want to draw the line on testing for other things - I had absolutely everything looked at, even old stuff, because I wanted to get each thing sorted out, I had a spinal tap done, a centre for rare diseases thought they'd found autoimmune stuff, my employer expected me to go to a clinic etc. And everything helped a little bit in the long run altho most things (mainly the treatments, not the tests) harmed me considerably in the short run...

I know what it's like to not want to annoy someone with questions. I had 1 colleague with it I could ask a few things, but she didn't have much energy. Forum-reading & writing helped much more. Reading 1 or 2 recent books helps get the basics, there also quite a few good overview vids on youtube (e.g. Rachel Lynch (Ireland), Dr. Andrew Gross, zdogg).

Might be helpful to get counseling/CBT to cope better....
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
404
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
And you asked about fibro-blogs - there are many, they're not what I read tho, but I write one myself, as a kind of diary, for sleep, activities, treatments, and their effects, how well I feel, pain, gut, focusing things I want to implement more or anything new. Not at all slick or 'for others', just for what I need, and if it helps motivate others that's fine.
Similarly not slick but handy, I've also started a web-based "fibromylgia references" thread linked to the blog, with systematic overviews of cause-, symptom- and treatment-types, which I want to intertwine and link to the respective 'best' overviews and links. Then add lists of them in alphabetical order. I've amassed so much information useful to myself that I get confused where I've left it all. And as I turn each stone over at least thrice I'll always need it again. It's work in progress, but at least I got the treatment-overview OK-ish in 1-2 months, so I shd think it shd be quite complete in Sep21. What suprised, confused and intimidated me the other day is seeing that about 100 new studies on fibromyalgia come out on pubmed every month. But I love the challenge and am curious. And isn't that encouraging that they really are working on it that intensely for us?
 

Tamzinann

New member
Joined
May 3, 2021
Messages
6
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
That it really interesting ! yeah and encouraging... seeing how alot of people view fibromyalgia as "not a real illness". Do you write the blog for people to read or is it more for yourself to see where you come day to day ?
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
404
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Do you write the blog for people to read or is it more for yourself to see where you come day to day ?
Good question! A bit of both, I think. To expand:
The basics keep track of everything relevant, one entry a day, basically slightly abbreviated and scaled with adding up hours, % for how well I'm feeling, pain numbers, write down thoughts, reflectively, relevant things that happen, or I found out, trials & tribulations, which can make an entry very long, but also extremely personal.
But I explain things regularly, 'hide details' (which can be clicked on, similar to this spoiler), use more markings & symbols like arrows to attract attention to what helps for what, what is new etc. more than I might need for myself, write overviews for readers, in which I may address the reader, add the occasional fun fact of expression.
Even more: people comment, cheer, console, ask questions, which I then comment back on.

Most fibro- or health blogs I've seen write more or less informative articles aimed to instruct the reader.
In contrast mine is more an open diary, like the original type: daily, not periodic or even sporadic. It's me with all my failing, emotions, dumb thoughts, mistakes, my inner energy, curiosity, perseverance, development, failures, successes, self-motivation, unsuccessful & successful self-care, things people say to me.... Readers can see me edit the latests entry as a night and then day goes on, expanding/adapting a basic template. Sometimes I write something very emotionally first, then decide to take it out again, or 'hide details'. I can go back and edit everything up to a month back, to try to make things easier to read/understand. And I put my general development over the months in a seperate summary, for people who want to enter (or enter again) with a 'what has happened so far'. I started in October, so about 150 day-entries, plus 180 further ones interacting with readers (2000 viewings up to now), and the software (called Discourse) tries to give an automatic summary, but that's not helpful in this case.
 
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