Fibro The fun filled world of fibro

[whiteraven]

I got an acupressure mat

Are there ones that are better than others? And do you set aside time to use it specifically, or do you use it in bed, or?

Seriously, does anyone actually put ice packs on their joints???

OH yeah.

I think that’s the link you want ?

Thanks for posting this!

 

[Freida]

Are there ones that are better than others? And do you set aside time to use it specifically, or do you use it in bed, or?

I got the 19.99 one off of amazon. The reviews were really mixed -- it didn't seem that the more expensive ones were really any better. Plus if I hated it I wouldnt be out all that much money! :laugh: I've used it laying on my yoga mat and sitting on the couch while I"m watching tv. Or using it while meditation would be good too I think

 

[Freida]

I haven’t been able to walk unaided for ( um, not sure - a fortnight? ) apart from some times a few steps to the bathroom and I cannot raise my arms right now. I’m guessing this is fibromyalgia?

hmmm. Arms don't move because of pain or because they are stiff?. Fibros big indicators are fatigue and muscle pain, then it goes off into a whole kitchen sink of symptoms but I haven't seen a paralysis type thing

And thank you for the link! :)

Wondering if anyone can describe the type of pain they get with either fibro or chronic myofascial pain? As I mentioned, I haven't been officially diagnosed, but have been told by a couple people/doctors that I likely have it. I need to find something, as well, to help the pain.

I tell people fibro is like the ocean. When you look at the surface, sometimes it can be still as glass and sometimes it's a hurricane. But under the surface is the constant deep overall pain and fatigue and what not. It's always there -- it just varies in intensity. Then IBS, headaches, neuropathy, and so on.

This is a new test that more and more docs are using -- It looks for way more than the usual "18 tender points" and you can take it on line to see what things would count as part of the diagnosis.
detailed fibro test
Plus it gives you an idea of how to word things when you talk about it

As for finding pain relief? That's the holy grail - sigh.
That's kind of why I started this thread -- I'm getting progressively worse and my usual stuff isn't working as well. :(
It's lots of experimenting to find the thing that will work for you. I've tried anti depressants, opiates, aspirin, Motrin, acupuncture, massage, chiropractic, CBD oil, yoga...the list goes onnnnn :laugh: Sometimes stuff works really well at first and then kind of wears off, sometimes it works for years, sometimes it didn't work in the first place. A lot of trial and error.

 

[Mee]

hmmm. Arms don't move because of pain or because they are stiff?. Fibros big indicators are fatigue and muscle pain, then it goes off into a whole kitchen sink of symptoms but I haven't seen a paralysis type thing

Stiff and very very sore. not paralysis, and muscles not joints . I’m also excessively weak - I haven’t been able to use those stiff sore arms to open yogurt pots , put on clothes etc. I read a physical book yesterday by resting the book on a surface ( not holding in one hand) so only had to turn pages, not also hold the weight of the book. I am typing now, not using dictation, but I am Sort of anchoring my elbow to my side And only have lower arm movements going on - but still the minimal muscle involvement from upper arms is painful And after a while my arms will start shaking I have not yet hit that point .... I was seeing if I would but It’s not happening.

 

[Deleted member 47099]

Wondering if anyone can describe the type of pain they get with either fibro or chronic myofascial pain?

muscles not joints

Yeah, this.
I've heard fibro described as "basically like rheumatoid arthritis, but not of the bones/ joints (hard bits) rather of the muscles/ connective tissue (soft bits)" and for me, that's a good explanation.

Are there ones that are better than others? And do you set aside time to use it specifically, or do you use it in bed, or?

I have one like the $19.99 ones on Amazon that @Freida mentioned too:

Cheap accupressure mat on Amazon (as an example only)

IMO they don't have to be "fancy" they just have to have those plastic bits with pretty sharp/ pointy spikes and have to create a good "ouch" effect. Cos it's your body's response to the irritating but bearable pain signal, that dials down the brain's pain response and calms your whole body-brain-pain-tension system.

You can adjust how "ouchy" it is by how much of your bodyweight you let bear on the mat, and by folding the mat so you get different sizes/ areas of exposure to it. If you start small, for example, you may find that after 5 minutes your body has dialled down the pain response enough so that you can unfold the mat and use all of it with all of your body weight, to get deeper relaxation and pain relief.

 

[whiteraven]

I tell people fibro is like the ocean. When you look at the surface, sometimes it can be still as glass and sometimes it's a hurricane. But under the surface is the constant deep overall pain and fatigue and what not. It's always there -- it just varies in intensity. Then IBS, headaches, neuropathy, and so on.

Thanks for this and the info about the mat. Very helpful!

This is a new test that more and more docs are using -- It looks for way more than the usual "18 tender points" and you can take it on line to see what things would count as part of the diagnosis.
Link Removed
Plus it gives you an idea of how to word things when you talk about it

Oooh...thanks!

It's lots of experimenting to find the thing that will work for you. I've tried anti depressants, opiates, aspirin, Motrin, acupuncture, massage, chiropractic, CBD oil, yoga...the list goes onnnnn :laugh: Sometimes stuff works really well at first and then kind of wears off, sometimes it works for years, sometimes it didn't work in the first place. A lot of trial and error.

Massage helps me some - I have costochondritis also and get excruciating chest/ribcage pain. Myofascial releast is very helpful, but I can't afford it much and well...now. You know.

I started taking Aleve sometimes. That's been more helpful and I saw they were coming out with a combo Tylenol/Advil pilL - those two together are the only thing that helps with my headaches/occipital neuralgia.

detailed fibro test

I got positive results - "strong chance"

 

[Sideways]

This is a new test that more and more docs are using

Do be really careful with this stuff.

The website clarifies that it's a simplified (very simplified) version of the test recommended the American College of Rheumatology.

It also doesn't point out that fibro is a last resort diagnosis, when these symptoms can't otherwise be explained. So, as well as this type of analysis, if you're having chronic pain? There's a lot of causes of chronic pain. Take it to your GP and start ruling out other possibilities (which may be faaaar more easily treated).

ETA Sorry, I know that was probably annoying to read. Just, the kind of symptoms I had over the years that ultimately ended with a fibro diagnosis, were really serious. You get to the point where you can't walk, or you can't get dressed, or... That's serious stuff, and there can be really dangerous things going on in the body to cause stuff like that.

If you're experiencing chronic pain? Talk to your doctor. Speak up. Don't put up with it, or assume this is kind of normal. Every day I let my difficulty walking just slide? Allowed the problem to get worse, my muscles to deteriorate (muscle wasting - absolute b!tch of a thing to end up with), it got worse, and recovery got harder.

So, if you're at the point where you've got enough of an issue going on that you're taking online quizzes to try and figure out what your pain is about? Don't sit on it. It's time to see your doctor about it, and insist that they take you seriously, until you get a proper diagnosis and a solution.

(End rant) Feel very passionately about chronic pain being dealt with seriously, and correctly.

 

[Freida]

So, if you're at the point where you've got enough of an issue going on that you're taking online quizzes to try and figure out what your pain is about? Don't sit on it. It's time to see your doctor about it, and insist that they take you seriously, until you get a proper diagnosis and a solution.

yes!!! Sorry for the confusion :(

This was just to answer the question of how to explain what fibro feels like and to point out that the fibro diagnosis process has changed since the days of "18 tender points".

But no online anything should be used to self diagnose. I agree that is way risky. I think tests like this are best used to start a conversation with your doctor about how you are feeling - not as a way to find a self treatment. Everything else has to be ruled out before landing on fibro because it does mimic so many other illnesses

 

[Sideways]

But no online anything should be used to self diagnose. I agree that is way risky.

Definitely online quizzes are a way to educate people about different health conditions, but the premise of self-assessing fibro, and beginning with a diagram of the trigger points...how exactly does one 'self assess' whether you have specific trigger points in your own shoulder blades!?!:facepalm:

I was interested to see how others described the pain, because my own inability to do that? Was one of the reasons it probably took so long for me to get a proper diagnosis. Saying "Look, it just hurts a lot, all the time"? Not helpful!! Describing pain is really hard!! (Like describing emotions - just, does not compute!!!).

ETA It probably was the musculoskeletal physician poking me all over the place (and yeah, that was as fun as it sounds!) up and down my back that finally sealed the deal for me. He knew exactly where to poke, and whether or not poking "right here" would elicit a pain response or not. No easy task.

 

[Mee]

yes!!! Sorry for the confusion :(

This was just to answer the question of how to explain what fibro feels like and to point out that the fibro diagnosis process has changed since the days of "18 tender points".

But no online anything should be used to self diagnose. I agree that is way risky. I think tests like this are best used to start a conversation with your doctor about how you are feeling - not as a way to find a self treatment. Everything else has to be ruled out before landing on fibro because it does mimic so many other illnesses

Now I know I have fibro and chronic fatigue along with another Chronic health Condition that causes ‘pain and fatigue’ (Neuroendocrine) what I am really curious over is what pain is what condition. Ultimately it won’t change my experience but it might change approach of management better.

Descriptions I have Used over the last Almost twenty Years include: That walking is like
Moving through Treacle Or trying to walk through the chest deep sea at a normal pace.

Could be any draining or fatiguing condition. Shrug .
was going to list others but - ironically- run out of steam

 

[Strangelongtrip]

My doctors say could be could not be, could also be EDS, could also be PTSD related, I've never gotten answers. My grandma has fibromyalgia along with a lot of other hard stuff to deal with. I don't have it constantly, but currently in a pain flare that's what my grandma has said is like her pain flares. Feels like something needly stuck under my skin, every inch of my body. Makes me angry and irritable. I know stress is triggering it but I don't know how else to deal with it. I usually use the pool but alas, COVID. Considering swimming in the river with the snakes ?, what better way to social distance. I've tried Cymbalta and that doesn't help much, pool and yoga helps, as does a strong THC heavy indica strain. Pain is gone instantly. My doctor said I could go on Lyrica but my grandma was on that and she swelled up so badly it was dangerous for her heart. CBD sometimes helps, too. And meditation. Tried that today though and the pain was too bad.

 

[Ronin]

I'd be careful assuming your reactions will be exact as any relative.

While sure, some predisposition may exist? They are / were their own people. With their own health risks.

You are not them. Don't close the door on healing without giving it a fair try @Strangelongtrip.