Neuro suspects Fibro, complicated because of whiplash/PCS from car accident

Lecroix

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Oct 18, 2020
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DX FIBRO
Diagnosis
10/2020
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PA
So I was in a car accident last December and suffered a neck sprain, bad concussion, whiplash, etc. I was doing vestibular therapy and concussion therapy. Fast forward to March and I get very sick, end up in the hospital needing an IV (maybe COVID, not sure), my legs went very weak and I could hardly walk. Then in April I hit my head again, and suffer a second concussion. After a bunch of tests, my neurologist suspects fibro may be the cause of some of my issues.

In May I started experiencing some burning pain in my extremities, very bad back pain, numbness and tingling pins and needles sensations throughout my boody, etc. I had a back MRI showed some bulging disc and mild disc degen but nothing too serious. Then my neck started hurting again (months after the accident). And my hands would sometimes go numb especially when laying down on them. And it wouldn't be like your typical falling to sleep either. At times, I feel tingling, burning, pin prick, type sensations throughout my body. My arms and legs will sometimes experience odd twitching/shaking sensation and my face will at times get tingly as well, with intermittent spasms and slight twitching. My joints will hurt often and get worse when I press on them (like elbow on the table). I will feel some facial pain as well on my worse 'flare up' days with some pretty bad head and neck aches. My neck feels like an ice pick is being pushed into it at times. Even my elbows feel at times burning especially if I put them down. When I touch my knees they are sore to the touch. I feel burning sensation. I'll feel the shaking really bad at times, like it flares up and then I feel completely exhausted. This hadn't happened for a while, like 2-3 months ago, and it just started picking back up again. I feel like I am having a "flare up" of sorts" Some of my symptoms could be explained by PCS (dizziness, vertigo, balance issues which have all improved). They don't think it is MS or ALS because 1. I never had these symptoms before all this happened and 2. Brain MRI, cervical MRI, back MRI show no lesions and I had an EMG/NCV test done .. clear.. all blood work for any mimic diseases clear .. I asked about ALS she said she does not suspect that. I have some pinched nerve in my right leg is all the EMG showed. No fasciculations were observed on the EMG. My PCP said MS would have shown up in the MRI's.

The only thing I haven't had done is have a spinal fluid test done. Not sure why all the tests are normal when I feel like at times I am getting worse, but other days I feel fine.

I take gabapentin (prescribed because of these issues), prilosec, pepcid, zrytec, medical marijuana. I was officially diagnosed with mild sleep apnea, GERD, IBS, post concussion syndrome, OCD, post traumatic neck arthritis, mild degenerative disc disease, PTSD and have allergies. I know brain trauma can mess you up but it just seems like this comes and goes, almost like a relapsing event. I would have thought it would have just been a straight forward path to recovery. At times, I feel like I am getting better, then worse, then better. I'm at the point now where I am coping and realize maybe I may just have to live like this with the pain and suffering. I am hopeful that I will get better. Sometimes my achiness/pain/soreness is so bad that it makes it harder to do things. My strength tests, reflex tests, etc. have also all been normal and all these tests have been fine. I can explain to myself the widespread body pain, numbness, tingly, etc feeling and IBS, trouble urinating on fibro but the facial pain/tingling/spasms I don't understand if that could be caused by fibro. Maybe some post traumatic whiplash/concussion effect? This is all perplexing to me. I just really hope I don't have some life threatening or degenerative disease! Tests seem promising though. I need to stay off Google!
 

sunkacola

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Dec 2, 2016
Messages
891
Reason
DX FIBRO
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Fibromyalgia is sometimes brought on by a traumatic physical event like an accident. But the truth is that you don't need to know for certain what caused the things you are experiencing in order to treat them and manage them so you can live a decent life. Obviously, it is best to find out for sure and get a diagnosis, but if you don't get one, you can still manage things yourself. I wish for you that it gets better.
 

Lecroix

New member
Joined
Oct 18, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
10/2020
Country
US
State
PA
Met with neuro today. Diagnosed me with "Functional neurological disorder" and instructed me to read up on it. Sounds like a lot of what I've been experiencing. Possible fibro as well as a byproduct of it
 

cielsbleus

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Nov 9, 2020
Messages
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Reason
DX CFS
Diagnosis
03/2000
Country
US
I can totally relate to your story and your symptoms. I was hit from behind while stopped at a light in 2016. Concussion, whiplash, Post Concussion Syndrome, vestibular disorder, lumbar sprain. My brain MRI came back "unremarkable" as well, but fortunately I have a very compassionate and knowledgeable PCP who knows how PCS and the accident impact can affect someone in the long term. I was actually diagnosed with Chronic Fatigue Syndrome (now called ME/CFS) many years ago, but with regular exercise, stress modification, changes in diet, meditation, supplements, good sleep and various therapies had that to what I would consider to be "under control." In other words, I felt functional and productive at least 75% of the time. After this accident, however, and a subsequent one in 2019 where I was hit head on in a multi-car pileup (I know! Crazy, huh? Both were caused by distracted drivers) the CFS and now fibromyalgia have flared. I also have tingling in my hands, tinnitus in my ears, and neuropathy and numbness in my left leg. I have neck pain most days too whicg can also cause radiating headaches. This is after several rounds of physical and vestibular therapy. It is very possible for you that the accident is to blame for your widespread pain. The impact on your brain, neck, and spine can have this outcome, I have found. I was on gabapentin for a while, but that just made my PCS headaches worse, so I stopped that. My physician put me on a very low dose of amitryptyline (25 mg) which he prescribed off label for the nerve pain, sleep and headache prevention. It has worked very well, to the point that I felt SO much better that I weaned off it for two weeks because I thought I didn't need it anymore...and then well, the pain came rushing back to me. I restarted it recently. I also take a couple of natural anti-inflammatories which I suspect are helping too (Omega 3,6,9 and tart cherry great newer research on that). I feel for you, because it's natural to want to search for the cause and get a label for it, but at the same time, you just need to find a way to feel better! Meditation helps me immensely too because it positively frames my day. Light exercise as well. Gives me a sense of accomplishment. And Sunkacola is right, the pandemic isn't helping matters much for any of us. Hope you start to feel better soon!
 

cielsbleus

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Nov 9, 2020
Messages
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Would've helped if I would have proofread more carefully. I apologize for the typos! Impulse control is now also an issue. :)
 

Lecroix

New member
Joined
Oct 18, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
10/2020
Country
US
State
PA
Yeah I've had all sorts of tests and second opinions. All stems from that accident ...what's odd is I also have some pain and spasms/tics in my face too. It's so annoying. The muscle jerking too can get on my nerves no pun intended
 

humordopey

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Nov 23, 2020
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Undiagnosed
Diagnosis
01/2019
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State
CA
Kind of similar to what my friend was complaining about, but I think, she hasn't had a diagnosis just yet. It's true that it doesn't matter what the cause was as it's most likely irrelevant to the treatment. Wish you well and stay safe!
 

toni086

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Joined
Nov 25, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
07/2020
Country
IE
State
WX
Kind of similar to what my friend was complaining about, but I think, she hasn't had a diagnosis just yet. It's true that it doesn't matter what the cause was as it's most likely irrelevant to the treatment. Wish you well and stay safe!
Yeah I've had all sorts of tests and second opinions. All stems from that accident ...what's odd is I also have some pain and spasms/tics in my face too. It's so annoying. The muscle jerking too can get on my nerves no pun intended
I was diagnosed in July 2020,
As I had constant pain in my back and neck across my shoulders and from time to time I had lower body pains.
I had an incident @ work in 2017, which led to me been in a very vulnerable position, I was assaulted by a Autistic Boy who appeared to be having a out of body experience, which led to him losing total control and was attempting to bite my face and breasts.
Due to his behaviour and he wasn't making any contact with me from my previous training for times like this, he attempted to assault another 2 children close by me and he attempted to break away from me as I was holding both his hands and trying to calm him down.
We both ended up on the ground and we were rolling around for several minutes .
He eventually calmed and was back to his normal self and no harm or damage to him,nded up having 2 surgeries on one of my shoulders. I am to date still attending physio rehab classes weekly which get me through the week.
due to covid-19 I had no access to physio in early March onwards to July, so my body suffered big time with no meds for pain just antiinflammatories which were of no help, exhausted from lack of sleep and mobility was in locked down mode.
my GP did a full blood Count and eliminated other possible condition s,
he then did exercise test with me and diagnosed me with fibromyalgia, I hadn't a clue as long as he could get rid of my pains.
he announced that he couldn't get rid of the pains but he would do his best to manage the pain for me.
I'm moving better and working everyday, with the help of Codipar 2x 4 times a day max, and 25mg of Amitriptyline for night time, treating the spasms.
my GP believes that this incident has triggered Fibromyalgia, there's no history of Fibromyalgia in my family medical history.
Can anyone enlighten me, on the treatment and their experience.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
891
Reason
DX FIBRO
Diagnosis
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Country
Uni
State
Somewhere
Hi Toni,

It seems possible to me that you are simply still recovering from the injury.

Do you have widespread pain throughout your body? Or only in your affected shoulders?

If it is only the shoulders, then it is probably not fibromyalgia. Shoulder injuries can take a very long time to heal especially if it involves surgery.
Physiotherapy could be very helpful to you.

If you have more widespread pain and are often fatigued then that is different. but I can't tell from your post what exactly you are experiencing.
 
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