In denial and scared.

[Harpy]

G’day Gnd97. Hope you’re doing ok. I 2nd what Auriel says.
Keep posting . We all learn something from each other in some ways. But the best thing about this forum is the caring, listening and giving and taking information on board, even if we don’t agree. The most important is being able to talk about all our problems, aches and pains, mental health problems when otherwise we can’t.
We’re all . Lol

 

[Gnd97]

Thank you for your reply I will continue posting. My original post did say I wanted some advice. But my “some” members I feel like they’ve not taken on board my experience/pain/symptoms and are trying to push theirs onto me which hasn’t helped with the feeling of been overwhelmed and upset by my diagnosis. Thank you for your kind post x

 

[Artizane]

Hello Gnd97
I don't get to hop on the forum very often because my suite of issues is pretty debilitating but I really sympathise with your post - when I was first trying to find out what was going on I was constantly met with Drs saying they couldn't find anything wrong and inferring hypochondria ... which was very unhelpful. I had (and continue to have) symptoms very similar to yours after a back injury many years ago.
Eventually I was diagnosed with Fibro and a few other diagnoses.
My advice to you is to think about fibromyalgia as belonging in a sort of bucket of all the conditions that neurologists haven't yet quite nailed down or found diagnostic tools for. I've been told by my neurologist that Multiple Sclerosis used to be in this bucket too before medical researchers found a diagnostic tool for it. In any case, there is a lot of research going on now because of long COVID that will hopefully provide some really useful treatment breakthroughs soon.

In the meantime, the best advice on pain management I can give you is to:
- stop trying to keep up with everyone else - its ok to say no
- reduce activity to a manageable level and rest before you get to the point where you are in severe pain
- use sleep hygiene practices to try to get better sleep (have a warm bath before bed, drink some lemon myrtle tea, no screens after 7pm, no food after 7:30pm, consider magnesium supplements, spray or cream to stop cramping at night, and use a sleep meditation app to relax once in bed)
- be very kind to yourself
- don't engage with people who judge you or are not helping you
- trial a few medications in close cooperation with your medical practitioners. (It may also be worth noting that Fibro pain does not normally respond to opiates).
- accept the change - this is the most difficult part - but don't lose hope that you will recover, plenty of people do
- try and find an holistic GP (not all about pills but looking at your whole lifestyle).

I was bed-bound and unable to speak or think properly for 12 months a few years ago - and now I am nearly back to normal function, but it took a great deal of perseverance and research and consults with many Doctors. It does get very overwhelming trying to keep up to date on fibromyalgia so take time out regularly and only tackle things when you feel up to it.


I do hope that helps a little - I know you are probably overwhelmed with all the opinions you are receiving. Everyone has a different journey so its important that you just take away the things you think are useful for you.

All the best

Artizane

 

[Artizane]

Oh - and just another thing to note - the diagnosis criteria for Fibro that have been mentioned here are out of date.

According to recent articles the US and Canada are revising their criteria in light of the research into long COVID and its similarity with ME/CFS and Fibromyalgia. There was also an interesting article recently on Health Rising about research discoveries that have shown the pain signals we get are possibly scrambled because antibodies are attacking the central sensory processing centres, or dorsal root ganglia (eg: at each nerve node of your spine on the way up to your brain) - e.g Fibro could be an autoimmune disease with monocytes
(rather than NK cells, T or B cells) at the heart of the immune dysfunction we experience, and that Fibro is possibly not a disease of the central nervous system, but a disease of the periphery. Successful research outcomes in these studies - which have just received huge grants - would open up a range of treatment options never thought to apply to FM.

Hope that's useful.

 

[johnsalmon]

Fibro could be an autoimmune disease

there has been a number of paper leading to this however there are a lot of research that does not agree
"a disease of the central nervous system,"
this is a strongly held view
I feel it may be a long time till there is a definitive answer

 

[Harpy]

Hi Gnd97,
Hope your doing ok

 

[JayCS]

Oh - and just another thing to note - the diagnosis criteria for Fibro that have been mentioned here are out of date.

Do you mean my mention of them? Well the 2016 criteria are the current ones, which were checked and taken over almost 1:1 by the 2022 UK guidelines. The AAPT 2019 criteria are similar, a little bit of a tangent.

According to recent articles the US and Canada are revising their criteria in light of the research into long COVID and its similarity with ME/CFS and Fibromyalgia.

Interesting pointer, thank you: But I don't know of any research actually coming to any conclusions, so I can't see any basis for working at revising criteria. Could you name the articles? (Linking not being allowed.)

There was also an interesting article recently on Health Rising about research discoveries that have shown the pain signals we get are possibly scrambled because antibodies are attacking the central sensory processing centres, or dorsal root ganglia (eg: at each nerve node of your spine on the way up to your brain) - e.g Fibro could be an autoimmune disease with monocytes (rather than NK cells, T or B cells) at the heart of the immune dysfunction we experience, and that Fibro is possibly not a disease of the central nervous system, but a disease of the periphery. Successful research outcomes in these studies - which have just received huge grants - would open up a range of treatment options never thought to apply to FM.

I agree with @johnsalmon that the CSS hypothesis is the most common, but has never been unchallenged, there are about 8 sets of hypotheses of causes and none in my way of thinking is even really a 'theory'. Regarding CSS: The "Queen of Pain" Irene Tracey says in a video a few years ago that she thinks it might well be a combination of central and periphery. My impression is it's many blind people feeling all the parts of an elephant and shouting around they have the answer. Trouble for me is, I don't even have the parts they're shouting about, the hypotheses don't fit to my symptoms....

 

[Audigirl]

Hi Ariel,
Yes I can identify with you, I have chronic pain every single day, usually neck, shoulders, back and both legs. I am so sorry you are feeling this too. I have been fobbed off with different medications, that have done nothing really to help. I am on Naproxen, gabapentin, codeine and just about to start a new one called Duloxetine. I have been lucky in respect that my GP recognised fybromyalgia and has referred me to pain management, but the wait is long. Please don't get disheartened, it's hard work every day and I am exhausted at times, it's just been sheer determination on my part to get up every morning, because I know it's going to hurt. I am currently trying pain hypnosis.... anything is worth a go!

 

[Auriel]

@Audigirl