New here! Confused 🤔

[deegirl]

Hi everyone. My name is Dee and I'm from Ireland. Im new here. I would love your advice. I was diagnosed with fibromyalgia back in 2018 after having my first child. Every morning when I would wake up I was so stiff and sore that i could barely get out of bed. I went to the doctor who took bloods and my rheumatoid factor was up. I was referred to a rheumatologist but after a five min examination of my tender points diagnosed me with fibromyalgia. It didn't make much sense to me as I wasn't in chronic pain. My dad has suffered with fibromyalgia for years and suffers terribly with pain throughout his body..I accepted the diagnosis and got on with my life. I would get some pain in joints every now and then but nothing that I could describe as widespread or chronic. For many years I have had on and off symptoms of numbness in my right leg but ignored it. Over the last year I noticed more symptoms with tingling in hands and feet, numbness, brain fog, dizziness and muscle fatigue and mild spasm. I also have restless leg syndrome. Also a band of tightness around waist that could take my breath away. I was referred to a neurologist and had nerve studies, loads of bloods, MRI of spine and brain and it all came back clear. He said it was all related to fibromyalgia and called it fibro neuropathy (sorry probs not spelt right). I'm just so confused as I still don't have much pain. I do get muscle/joint pain every now and then but nothing compared to other symptoms and it just doesn't make sense to me based on what I read and how my dad is. Does anyone have the same symptoms without the chronic pain?? Thank you so much!!

 

[JayCS]

fibro neuropathy

That'd be small fiber neuropathy, SFN. And there lies the crux of the matter....
Studies have found that a good proportion ("49%" one study even says) of people with fibromyalgia seem to have SFN, so some researchers have jumped to the conclusion that SFN is the cause of fibromyalgia. Same as they jump to the other favoured hypotheses like CSS or autoimmune. SFN is however controversial, other studies refute the connection. Those that tout it see the cause in a "stress-related dysautonomia with neuropathic pain features".
The "answer" to this controversy may be that people with SFN might be a subgroup of fibromyalgia that need other treatments that improve the nervous system.

Now many have SFN without fibro. (Actually 50% of people with SFN have it idiopathic, so no other condition. Then there's many other conditions that can cause it.) And that's what your symptoms sound like. Because, like you think: all fibro criteria necessitate chronic pain all over of longer than 3 months. Whereas SFN can come with fatigue and even pain. The only thing I'm not sure about is you saying it started with morning stiffness. But no way is that enough for a fibro diagnosis.

Study examples: That'd be "Fibromyalgia syndrome-A laser-evoked potentials study unsupportive of small nerve fibre involvement" from 2020. A meta-analysis from 2022 concludes "Our study shows that a considerable proportion of patients with fibromyalgia have somatic and autonomic small fibre impairment, as assessed by extensive small fibre-related testing. Nevertheless, the heterogeneity and inconsistencies across studies challenge the exact role of small fibre impairment in fibromyalgia symptoms."

Whatever, SFN would be tackled first by finding out if there is an underlying illness, in this case not fibromyalgia. However if it's idiopathic and you want to try meds you'll be getting 4 of the most prescribed ones for fibro: duloxetine, gabapentin, pregabalin, and amitriptyline.... And you'd want to try supps we use for fibro too. But as exercises I'd concentrate not on stretches for tendinitis type local pains, but instead on the nervous system, esp. the vagal nerve.

 

[deegirl]

Thank you so much. Years of seeing doctors and nobody mentioned this. The neurologist quickly said something this morning about small nerve testing but moved quickly on. Having seen my dad suffer for years with chronic pain with fibro my diagnoses never sat right with me. I'll speak to my GP about SFN. Thank you again!

 

[JayCS]

I was referred to a rheumatologist but after a five min examination of my tender points diagnosed me with fibromyalgia.

By the way, this is confusing too - if you don't have pain, no points on your body would hurt enough. And anyway: the tender points test was ditched in "most of the world" as from the 2010 ACR criteria. To diagnose (and self-"diagnose") the 2016 ACR criteria should be used, as has been taken up in the 2022 UK guidelines. For those you need a certain amount of points on the Widespread Pain Index. You can find them contained in the online test on our main site, I usually refer to those on the FMA UK site and have uploaded them here too.

 

[deegirl]

Thanks a mill. I'll take a look at that.

 

[johnsalmon]

"after a five min examination of my tender points diagnosed me with fibromyalgia."
the tender point test ]was found to be wrong after they extended the test to people without fibromyalgia and foun d that a large number were also tender at those points - there is really no test for fibromyalgia it is dragonized after checking the Synonyms and ruling out any other possible medical condition over ones life time

 

[sunkacola]

it is dragonized

Dragonized! What a great word!

 

[JayCS]

dragonized after checking the Synonyms

Dragonized! What a great word!

Hehe, love that too - autocorrect going bananas I guess...
(for "diagnosed after checking the symptoms", in case anyone's confused).
But I spose it's not us getting made into dragons by supposed wizards (doctors),
the spell reflects upon them, and it's them that are often the dragons.

 

[BlueBells]

Hi everyone. My name is Dee and I'm from Ireland. Im new here. I would love your advice. I was diagnosed with fibromyalgia back in 2018 after having my first child. Every morning when I would wake up I was so stiff and sore that i could barely get out of bed. I went to the doctor who took bloods and my rheumatoid factor was up. I was referred to a rheumatologist but after a five min examination of my tender points diagnosed me with fibromyalgia. It didn't make much sense to me as I wasn't in chronic pain. My dad has suffered with fibromyalgia for years and suffers terribly with pain throughout his body..I accepted the diagnosis and got on with my life. I would get some pain in joints every now and then but nothing that I could describe as widespread or chronic. For many years I have had on and off symptoms of numbness in my right leg but ignored it. Over the last year I noticed more symptoms with tingling in hands and feet, numbness, brain fog, dizziness and muscle fatigue and mild spasm. I also have restless leg syndrome. Also a band of tightness around waist that could take my breath away. I was referred to a neurologist and had nerve studies, loads of bloods, MRI of spine and brain and it all came back clear. He said it was all related to fibromyalgia and called it fibro neuropathy (sorry probs not spelt right). I'm just so confused as I still don't have much pain. I do get muscle/joint pain every now and then but nothing compared to other symptoms and it just doesn't make sense to me based on what I read and how my dad is. Does anyone have the same symptoms without the chronic pain?? Thank you so much!!

Hello Dee

Wow !!! That is what confuses me, I am so like you , diagnosed early 2020, but I virtually never have the chronic pain, which makes me query the diagnosis.

A friend suggested in mid 2019 to get checked for fibro, and I did. I had the neurologist do the zappy test , and she said "textbook perfect. Has the doctor considered fibromyalgia?"

Doc quizzed me on pain, which I didn't have, she said not fibro. Researching, it answered questions I've had since early teens (12 or 13) but she said no. One day, I had pain above a breast, go to doc. She said breasts are fine. Do you get pain here, here...allover the place. I said yes, now and then, but never even bad enough for paracetamol. She said I have fibro !!

I even wondered if I should be on this site, as everyone seems to talk pain, and it makes me feel a bit 'fake'. I am so very pleased to hear someone describe so much of what I have, and diagnosed fibro, and no chronic pain.

Thank you so much Dee

 

[BlueBells]

By the way, this is confusing too - if you don't have pain, no points on your body would hurt enough. And anyway: the tender points test was ditched in "most of the world" as from the 2010 ACR criteria. To diagnose (and self-"diagnose") the 2016 ACR criteria should be used, as has been taken up in the 2022 UK guidelines. For those you need a certain amount of points on the Widespread Pain Index. You can find them contained in the online test on our main site, I usually refer to those on the FMA UK site and have uploaded them here too.

Hello Jay

Not sure what to think now. I'll have a look at the test, and see what it comes up with. The person who 'diagnosed' me knows 4 others with fibro, and I'm the same, generally, but not the pain.

Working on that, my research has explained so much that has bugged me most of my life, especially the fibro fog.

I did a pain management course a few years back, as I have an issue with my arms, a type of rsi, but may also be tangled with fibro. I learnt a lot about pain and pain management.

I do seriously wonder if there is a chance I do have pain (the ache that's not an ache/pain that's not pain....it's vaguery) that can at times bring tears to my eyes, but not actually feeling 'pain', because it is not recording correctly in the brain receptors.

There's a TED thing I'd love to share, but no idea the correct way (rules/protocols) to do so.

I'll report back here how I go with the test

Thanks @deegirl for posting the original in this thread

 

[BlueBells]

@deegirl @JayCS @johnsalmon @sunkacola

Well. I am Dragonized !!!!

And...I've had a reasonable week, too.
9 points
Your total SS score:6 points

As soon as I saw :You meet the requirements for a diagnosis of fibromyalgia.: I immediately got tears in my eyes, not sure if because I am relieved or disappointed it confirms diagnosis.

I'm wondering if I could do the test again, putting in what I am like on a bad week (which can drizzle into a few weeks). Okay, this is what a bad run would be.
18 points
Your total SS score:10 points

I have had times when I ground myself, i.e., will not drive because I am not sure of my ability to hold the steering wheel and/or feel sufficiently alert to be safe on the road. Generally a couple of days, maybe a week or two. Worst was three months. I really don't understand why people risk losing their driving license

So, Dee. I'd suggest doing the test. I ticked way way more than I expected, but I do tend to brush things off, ignore them, just work around or push aside as best I can until it drops me. Not a smart habit, actually.

I am learning , very slowly, to accept it is what it is, and if I 'go with the flow' and if all I can do is binge movies, then that's good enough, and not belt myself up because I can't move mountains.

Bit of a ramble there, not sure if there was a point to it, but head is starting to say..."I'm about to be outta here.." so before it goes sideways, I hope it's a read for someone browsing at least

 

[JayCS]

There's a TED thing I'd love to share, but no idea the correct way (rules/protocols) to do so.

Omit a clickable URL. So you can just write the title, praps the author so we can search it ourselves.
So as regards a pain video you could write the title, like "TEDxAdelaide - Lorimer Moseley - Why Things Hurt" and if you like you can add the end part of the youtube URL gwd-wLdIHjs, or you can space out URLs, like the h t t p and w w w, leaving that together may cause the detection software to alarm, even if it's not clickable.

but I do tend to brush things off, ignore them, just work around or push aside as best I can until it drops me.

Yeah, I think that's how I built up my fibro. My wife kept pointing out something is wrong when I had to cry for some reason when wind blew or when every time I got up from some chair very stiff for 1-2 minutes, had to hobble like an old man. Now I know that's my tendons and this week I've realized it's also the muscles which have contracted while not moving. Or I found myself sitting and procrastinating, not moving, just doing something to distract. In hindsight I know it was this severe stiffness and Ache that I can now explain better and define. Luckily she pushed me to a rheum in time, and as he couldn't find anything I went to a 2nd one. She called it "tendinitis all over" (polyinsertionstendomyopathy), as she preferred to call fibro, which I first thought was slick, but now know it's only a tenth of the story of fibro. By that time I was in the full flare I've never left. And still the severe Ache may be challenged by myself and others as praps not being "pain" in that sense... Like severe "discomfort"... Cos it's dull, and not acute. But as you describe it still drops and fogs us. My wife is the big exception, she sees it all, more than is good for her and sometimes for me, but usually it's a help that she warns me it's going to drop me soon. (Not sure if I've used your expression right there, don't know it.)

I immediately got tears in my eyes, not sure if because I am relieved or disappointed it confirms diagnosis.

Yeah, both. And it'll turn out, like you say, a kind of reality check which can help you tackle it instead of brushing off. That way you may be able to avoid all the pain most of us have gotten into....
All important - fibro or no - is to work thru sunkacola's advice post till you have it internalized. And go from there to tackle your main issues and be prepared for more challenges to come.

 

[sunkacola]

There's a TED thing I'd love to share, but no idea the correct way (rules/protocols) to do so.

You can read the forum rules in order to know what they are, and I recommend doing so.

Posting any outside link -- meaning a link to anything that is outside the forum itself -- is against the rules. If you want to tell people about something online you can just say something like : " there's a TED talk, you will find it if you type in "TED fibromyalgia John Smith" or whatever like that, which will allow someone to find it on their own by using a search engine.

 

[BlueBells]

@JayCS Yes, you have the pain one, that is the one where he mentions the snake bite?

The other one is a YouTube video, Tame The Beast , July 2017, also by Lorimer Moseley. A physiotherapist showed me the video, and depending on peoples reaction, they could see if there was a chance a pain therapy clinic would help.

I saw it just after it was made, a lot of those ideas were still very new, and after being diagnosed with fibro, I have taken the thought that maybe somewhere in the sub-sub-conscious, the area the runs the lungs and heart sort of area, I wonder if there's a glitch, where something has been learnt , and we somehow need to figure how to retrain or un-learn that message.

Thanks Jay for your reply, I'll have another look tomorrow.

 

[JayCS]

Yes, you have the pain one, that is the one where he mentions the snake bite?

Pretty sure that's one of them.

something has been learnt , and we somehow need to figure how to retrain or un-learn that message.

Well, you're in a lot of company there - there's quite a few types of such "rewire" "theories".
The more mainstream ones would be fibro as "central sensitization syndrome" (CSS), with programs like normal "pain management" using e.g. CBT (and/or ACT) and perhaps neuroplasticity training. "Neuroplasticity" accords with our form of pain having been called neuroplastic pain by pain experts the last few years.
Then there's functional/naturopath programs like ANS Rewire, Gupta's "Amygdala Retraining" / amygdala and limbic system retraining, vagal nerve stimulation like Reborn....
Mayo Clinic's page "Fibromyalgia: changing the pain experience" (2022) by the Mayo fibro clinical director is a very concise overview of fibro, well worth reading, (but) based on the CSS theory, so has "Turned up, rewired" as a subheading.

I do think we will benefit from these approaches, altho I'd done all the re-training stuff already.
The CSS theory doesn't fit to my pain experience however: I don't have hyperalgesia, allodynia, low pain threshold or a low pain tolerance, have a high acceptance of the pain I can't improve, it doesn't worry me. And: my local pains have been pretty much resolved by analyzing and treating them individually, each immediately that comes up again, so that's not brain training it's physio. And the overall Ache from overdoing it is part of my exhaustibility, also physical, nothing turned up, it's "restrained" energy....

If Moseley as a pain expert is useful to you, probably Irene Tracey (the "Queen of Pain") will be too?