Weird unilateral symptoms

[Drewmc]

Howdy y’all!
I was recently diagnosed with fibromyalgia by a neurologist after seeing tens of different MDs in the last 20 months, and the idea of an incurable disease preventing me from doing what I love the most at 22 yo hasn’t been easy on my mind.
It first appeared while I was in the army after a traumatic injury during a run, and I’ve since been forced to resign due to my condition preventing me from even walking right, let alone be a soldier.
What’s weird Is that my symptoms only stick to the right side of my body, including lower leg, upper leg, right hip and knee.
In your experience, does this make sense as fibromyalgia? Everyone I talk to is skeptical about my diagnosis due to the fact that fibromyalgia is associated with excruciating widespread pain and I do not check that box, I have however also taken the test available on this site and it says I indeed have fibromyalgia. What’s your take?

 

[sunkacola]

Hi Drewmc, and welcome.
In general, fibromyalgia is bilateral, and no only on one side. What you describe doesn't sound like fibromyalgia to me, but more like a neurological condition, but I am not a doctor. Fibro is not a disease, but a syndrome. If you have fibro, it doesn't mean you will spend the rest of your life unable to do what you want and need to do. You can learn to live with and manage it and have a life.

You say you don't have excruciating pain, but you don't say what you do have. Please describe your symptoms to us, as it might make it easier to be of help to you.

If you have only seen one neurologist, I recommend getting a second opinion. What did the person who diagnosed you use as their diagnostic criteria?

 

[JayCS]

Everyone I talk to is skeptical about my diagnosis due to the fact that fibromyalgia is associated with excruciating widespread pain and I do not check that box, I have however also taken the test available on this site and it says I indeed have fibromyalgia. What’s your take?

Hi Drewmc, and welcome!
Well, like @sunkacola implies, I'm a bit surprised that the test on this site waved you "thru", cos it's based on the 2016 ACR criteria and those say you need 4 of 5 areas of the body to be in pain (point #2).
'Fibromyalgia on the right side' is a speciality of Eric Berg, who believes that that comes from the gallbladder, maybe that's something for you to look into (e.g. on youtube), whether you buy it as fibromyalgia or generally some pain condition.

 

[Drewmc]

Thanks for your replies, I appreciate your time.
I most definitely am in constant pain, but it only concerns my right leg and hip, regardless if I’m moving or not. I also noticed my mind slowing down during flare-ups of pain, meaning I forget words, have a hard time explaining myself and concentrating, something I later found to be related in some way to fibromyalgia. What I referred to as something that throws people off is having been diagnosed with fibromyalgia despite not having total body pain, but I do meet all other criteria for such a conclusion.

 

[sunkacola]

Just being in pain, on its own, can cause the mind to be pretty foggy.
If you are only having foggy-mind when you are in a pain flare-up, (which, if you say you are in constant pain, must mean for you that the pain gets worse at times), it could be caused by that. I am not convinced from what you say that you have fibro, and recommend you keep getting tested for all of the many other things that have similar symptoms.

 

[JayCS]

I most definitely am in constant pain, but it only concerns my right leg and hip, regardless if I’m moving or not.

I'm unsure what you mean now. I get you don't have pain in your left leg. But you do have pain in both your arms and back? If your "left lower region" (leg & hip) are not affected, you'd need the "left & right upper region" and "axial region" to have pain. Up top you said

It first appeared while I was in the army after a traumatic injury during a run, and I’ve since been forced to resign due to my condition preventing me from even walking right, let alone be a soldier.

In combination this sounds as if the injury was mainly your right leg and has left considerable problems which the neurologist can't find, so is resorting to fibromyalgia?

I also noticed my mind slowing down during flare-ups of pain, meaning I forget words, have a hard time explaining myself and concentrating, something I later found to be related in some way to fibromyalgia.

Like @sunkacola says, "fibro (brain) fog" is often independent of pain, whilst you can have "brain fog" generally from pain, but also other conditions independently of pain.

What I referred to as something that throws people off is having been diagnosed with fibromyalgia despite not having total body pain, but I do meet all other criteria for such a conclusion.

There are 3 main criteria, and one is the 4 of 5 body areas one, so it's crucial.
"Two out of three ain't bad" - but it's not enough for fibro.
Like @sunkacola I'm still wondering what other symptoms you may have to have got a 'positive' result from 'our' test.

I was recently diagnosed with fibromyalgia by a neurologist after seeing tens of different MDs in the last 20 months

All of these MDs for the pain, and no one before the neurologist suggested fibro? What about rheumatologists?

and the idea of an incurable disease preventing me from doing what I love the most at 22 yo hasn’t been easy on my mind.

Independently of diagnosis @sunkacola's advice post here (and sticking around) I believe can very much help you on your journey, for instance how to adapt to that new life, at least whilst you've found nothing to help you get closer to your old one, learn to love new things etc.

Yep, it's a tough one, but it's good to look it straight in the eye and tackle it on all levels, not just physical & diagnostic. Asking us here in this situation is excellent - I hope our ideas are helpful. They can be better the more your reveal.

 

[Drewmc]

You have been very helpful, thank you for your replies!

All of these MDs for the pain, and no one before the neurologist suggested fibro? What about rheumatologists?

An orthopedic surgeon suggested CRPS, which makes a lot more sense (since it’s literally “regional”) but honestly the treatment is so similar to fibro’s that whatever they call it I’m just eager to find some relief.
I was given Cymbalta 60 mg and the pain improved, but two months in I started noticing symptoms coming back so I have a visit scheduled with my neurologist to change the treatment plan.
I won’t even get into how much this has affected me personally, losing my job and the ability to go for a jog or a walk with my dog, I just hope to eventually be able to manage my pain and have a conclusive diagnosis, it would give me closure in some sense.

Like @sunkacola I'm still wondering what other symptoms you may have to have got a 'positive' result from 'our' test.

In the widespread pain index part, I checked lower and upper right leg and right hip.
Waking refreshed and fatigue I checked moderate.
Cognitive issues I checked mild, they haven’t happened very often (like once a fortnight) but when they do they kick me hard.
As for duration, I’m well over 3 months, going strong for 2 years now.
I then checked dizziness, headache, nervousness, muscle weakness, insomnia and thinking and remembering problems.
The test turns out positive for “Scenario B”.

 

[JayCS]

An orthopedic surgeon suggested CRPS, which makes a lot more sense (since it’s literally “regional”)

Definitely.

but honestly the treatment is so similar to fibro’s that whatever they call it I’m just eager to find some relief.

You mean similar meds? Dunno if the overlap is enough. Hard to find something that helps even a bit, and doesn't harm too much for fibro, it's very individual.

hope to eventually be able to manage my pain and have a conclusive diagnosis, it would give me closure in some sense.

Yeah, that's very understandable, even tho a fibro diagnosis turns out a pretty vague 'open' thing.

In the widespread pain index part, I checked lower and upper right leg and right hip.
Waking refreshed and fatigue I checked moderate.
Cognitive issues I checked mild, they haven’t happened very often (like once a fortnight) but when they do they kick me hard.
As for duration, I’m well over 3 months, going strong for 2 years now.
I then checked dizziness, headache, nervousness, muscle weakness, insomnia and thinking and remembering problems.
The test turns out positive for “Scenario B”.

Scenario B means that you're scoring more on the "symptom severity", so you then only need 4 pain spots - but 4 not 3, so the 3 right leg spots shouldn't be enough. And I'm starting to assume this test may have omitted the 4 of 5 area criterion, whether deliberately, as it's only a pointer of course, or by mistake.
So the bit of closure you're looking for will likely be easier to find in CRPS than in FM....
But I agree the amount of overlap in your symptoms still justifies looking at fibro treatment and advice as mentioned, so will help your eagerness to find some relief a little...

 

[Chrs8gar]

My rheumatologist diagnosed me but sent me to a neurologist to make sure I didn’t have any problems there. If any of your neurologist tests showed anything I’d dig deeper . Honestly I feel like my diagnosis is a waiting room because my symptoms are just all over the place and my ANA was positive at 1:320 my sle test said low likelihood while the other tests said criteria doesn’t match. I don’t bring up my symptoms for pity I bring them up so you can see if your symptom line up or not. Be blessed and I hope the good lord performs miracles in your life.

 

[JayCS]

Honestly I feel like my diagnosis is a waiting room because my symptoms are just all over the place and my ANA was positive at 1:320 my sle test said low likelihood while the other tests said criteria doesn’t match. I don’t bring up my symptoms for pity I bring them up so you can see if your symptom line up or not.

"Waiting room" is a good one.... I think most of us have sometimes felt that way... and then there are some small results, like ANA, but turn out inconclusive, so we still fit in no other box.
In the meantime it's good to concentrate on tackling symptom triggers ourselves, cos that's usually where it ends up anyway, unless we want to become dependent on docs that have no idea where to put us. And a way of combining the two is to say it's fibro, so do the many fibro treatments (trying to avoid meds) but still carry on looking if it's something else too. The current 2016 fibro criteria do allow for that.

 

[Auriel]

Hi drewmc! Welcome! , my pain actual started in my legs first (it felt like something was digging through the bone and tearing the tendons from inside) I genuinely thought I might have bone cancer! (It did spread to other areas after that (even today my legs get the strongest amount of the pain) some people don't have all the "usual" criteria, theres an interesting youtube video by a californian dr titled fibromyalgia, it's real it's manageable, what you can do (that states that) and also a video by Dan neuffer (I think hes German?) he talks about fibro and its co- morbiditys, theres a lot on there (but you've might have noticed already : ) anyway welcome we have members joining quite regularly (it just shows how common this really is!) ️️

 

[JayCS]

Dan neuffer (I think hes German?

Likely, as - unusually - German fibro expert Kati Thieme is one of the first doc praise comment on his page.
But it's not possible to detect if it's German that's mixed with his Australian English. He works in AU.
I've had another look at his ANS Rewire - nice basics, but do/done it all. What is it that helps you?