Brachial Plexus Injuries

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Hey, I’m Emily Eileen of Fever Dream Boutique!

Hi, my name is Emily Eileen. I am 27 years old. I was born with a brachial plexus injury, so disability has always been a part of my life. I have had several corrective surgeries at 11 and 25 years old. I was diagnosed with my first autoimmune disease, Crohn's disease, at 10 years old. I do monthly infusions to manage my Crohn’s. I have several diagnoses under my belt such as Fibromyalgia and am in the diagnosis process for several more now. I had a late diagnosis of ADHD at 24 years old. I have hypermobile joints and am exploring the avenues of EDS and POTS currently. Mental illness is also important to me as a Bipolar gal working my way through a PTSD journey. I believe much of chronic and mental illness goes hand in hand since they often come intertwined with one another. I am interested in the role trauma has in the development of chronic illness and vise versa.
Chronic illness has characterized every aspect of my life whether I wanted it to or not, and it has allowed for a more empathetic and slowly lived life for me. I am a fashion designer and use creativity as my prime outlet for coping. My handmade and upcycled clothing business is called Fever Dream Boutique. You can find me online on Instagram and Tiktok @FeverDreamBoutique

#CrohnsDisease #Fibromyalgia #BrachialPlexusInjuries #BipolarDisorder #PTSD #HEDS

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How do you feel about “that happens to everyone?” #ADHD #neurodivergent

I was recently in an ADHD Facebook group and venting about how tough things have been lately.

I got a lot of messages from well-meaning people saying “oh, it’s ok, it happens to your neurotypical coworkers too.”

I know these comments come from a good place, but they make me feel awful.

For me, the way it makes me feel is “well, if everyone else struggles with this too and they’re staying afloat, what’s my excuse?”

Similarly, I have a #BrachialPlexusInjuries that causes my left hand to not work well. I don’t expect myself to type as well as I did before. I don’t think anyone would. For me, it helps to remind myself “hey, of course I’m struggling, I’ve got these wonky things wrong with me, I can’t compare to others.”

It’s the same with my #ADHD as well. I like reminding myself “hey, I’m playing with one hand tied behind my back, of course I’m struggling sometimes.”

How do others feel about this?

#ADHDInGirls #Neurodiversity #Disability

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Just need to vent a little #ChronicPain

Why am I like this?

My #nervepain is flared up. It’s not horrible, but it’s distracting and at the point where it’s affecting me.

But in a way I did it to myself. It had been getting worse anyway, but I pushed myself too hard at the gym and now it’s bad.

The thing is, it wasn’t an accident. I knew I was pushing myself too hard. I knew the smart thing would be to stop and rest. But I forced myself to do it. In part because I was having a good time. I like seeing how strong I’m becoming. But part of it was that I don’t want to use my chronic pain/permanent injury as an excuse. I would feel like a quitter if I let myself stop. I would feel like I was taking the easy way out and like my arm was a limitation.

I wish I could learn to accept myself and my limitations. I wish I could learn to see myself as just as worthy even if I let myself quit when it’s beneficial to me.

I also wish I could take a sick day without feeling weak.

#BrachialPlexusInjuries #Chronicpainwarrior #MentalHealth

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What to call my #ChronicPain issue?

I have a chronic pain issue with my left arm. The gist of it is that my shoulder is very tight. That sends #nervepain down my hand. There isn’t really a diagnosis on it, but it’s a form of a #BrachialPlexusInjuries

Anyway, I don’t know how to describe it. It’s not really an injury. That gives the implication that it was caused by one specific thing and that it’s temporary.

But it’s not truly a #Disability . It slows me down. My typing is a little slower. It’s tough to grip something too long. I work out a lot and my left side is measurably worse than my right. But there’s nothing I can’t do because of it. So I feel like I can’t use the term disability to describe it. I also know people who know me would be floored if I called myself disabled by it because again I’m not. There’s nothing I can’t do.

So what is it? It’s not even a fully diagnosed condition.

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#nervepain advice? #ChronicPain

What advice do you have for nerve pain? I get some nerve pain in my hand because of a #BrachialPlexusInjuries It’s not very bad pain, but it sure is distracting.

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Does anyone else have a “ranking” of what kind of pain is worse? #ChronicPain

I have both muscle pain and nerve pain, and, personally, the nerve pain is worse even though the muscle pain is more severe. I just find nerve pain so distracting.

Anyone else like this? #BackPain #BrachialPlexusInjuries

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How do I know if I have Ehlers-Danlos Syndrome? From reading your stories it sounds like I do. #EhlersDanlosSyndrome #JointHypermobilitySyndrome

My brother used to pull my shoulders and elbows out of socket when I was a tween and being bratty on road trips. The parents would just pull off the road, yank it back into socket and drive on.

Has anyone else had experience with not receiving treatment for joint injuries when they were children, still developing?

Most of my joints are still easily sprain/strained. I have had : Spinal Meningitis, chronic migraines, have a fused L4-5 from a freak fall, and my neck fused by itself. I have chronicI’m a lifelong headache sufferer, studying corporate health/fitness, acupressure and had a thriving therapeutic massage therapy practice in a past life.

I’m now disabled permanently, yet I don’t look sick! I can still dance and wiggle like a whirling dervish , only now it can take days to recover. I’ve lived with chronic muscular skeletal pain all my life. I’m wondering if it even matters at this age to pursue a diagnosis?!

I was on literally hundreds of different meds these last 30 years and got myself off 95% with my neurologists guidance ie: fentanyl patches, anti nausea meds, muscle relaxers, anti depressants, antipsychotics, you name it... they made me feel ill and my personality changed.

I’m not interested in taking anti inflammatory meds- - I would rather take Turmeric and Collagen protein powder in green tea. I’d rather manage pain without pharmaceuticals that constipate and have happy bowel health!

Eliminating sugar has helped, a ton. What are your experiences around sugar and GMO foods? Do they make the pain in your joints worse?

I finally found relatively few side effects using CBD, thc, ancient, ayuervedic blends of herbs and of course ice, heat, compression, elevation, mucho rest, acupuncture and tons of water when I am bedridden.

I’m praying y’all can share/shed some light on my questions Please help me out here.

#EhlersDanlosSyndrome
#ThoracicOutletSyndrome
#BrachialPlexusInjuries
#CarpalTunnelSyndrome
#ChronicMigraineSyndrome
#hypermobile #JointHypermobilitySyndrome

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My older brother used to pull my elbows + shoulders out of socket when I was young+ being bratty. Did anyone else have this happen? #jointhypermobil

#BrachialPlexusInjuries
#JointHypermobilitySyndrome

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Anyone else lazy about #Selfcare

I have #ChronicPain (#SpineProblem #BrachialPlexusInjuries and related stuff). For me, those things are made better by physical therapy exercises. Like, a lot better if I do it regularly over a long period of time.

I just can’t get in the habit of doing it. I almost wish my bad hand were my right. If my bad hand were my dominant hand, it would motivate me to actually stop being so lazy.

Anyone else struggle to do self care even if they know how important it is? I do have #ADHD so I know habits can be challenging. But maybe I’m just lazy?

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How do you describe your health conditions?

Between my #SpeechImpediment my #Scoliosis (technically it’s not that but similar) my #ADHD and other related stuff, I describe myself as “God did a science experiment when He made me and got interesting results.”

When I describe my musculoskeletal system (wonky #SpineProblem #BrachialPlexusInjuries and #Nerve and joint pain #Jointpain ) I just say “my musculoskeletal system is a series of unfortunate events.”

Anyone else have a fun/creative way to describe their wonky body/brain?

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