allodynia

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Ketamine Infusions for CRPS

Hello friends!

I’ve suffered from CRPS for 3 years now in my left arm. Since I’ve had it, it’s only gotten worse. It only affected the top of my wrist at the start, now it’s claimed my entire upper extremity (fingers and palm included). This past Christmas caused it to spread to my shoulder, the front of my chest, and up the side of my neck. The allodynia is, by far, my worst symptom, absolutely unbearable. I’m only 24 and the thought of having this for my entire life is… daunting.

I’ve done all the basic treatments: OT/PT, chiro, anti-inflammatory diets, TENS therapy, about 20 stellate ganglions, amniotic tissue (stem cell) injections & two different spinal cord stimulators with little to no relief. :/

I’ve tried every medication out there, including ERs and opioids. I was taking Gabapentin extended release (Gralise) 1200mg daily with some good relief. Until the only manufacturer of the drug made a 30 day supply cost $2000. So, now I am medication-less & in need of treatment recommendations.

My specialist recently discussed Ketamine Infusion therapy and I’m not sure how to feel about it. I’ve done quite a bit of research and can’t find too many success stories.

Anyone have any positive results from ketamine infusion?

Thank you all for providing a safe haven to share!

7 reactions 9 comments
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No diagnosis yet

New here. I have most of the fibromyalgia symptoms but I don't experience pain with light touch.

Still I am hypersensitive to light touch which causes immediate spasms and cramping in various muscles. Specifically my jaw/ear area and back.

I also don't believe I have hyperalgesia.

What I do have is terrible TMJ pains. chronic deep muscle pain all over my body. Feeling of exhaustion all the time. Waking up every few hours when I try to sleep. Not waking up refreshed. Mostly waking up with severe stiffness and aches. Having a hard time to do much of anything physically within a 8 hour timespan after waking up. (I don't have sleep apnea).

Hypersensitive to select muffled sounds. Hypersensitive to visual triggers. IE when someone is standing fairly close to me and engaging me.

I am just wondering if there are people who were diagnosed with fibromyalgia but who don't have hyperalgesia and where allodynia does not give pain signals.

14 reactions 10 comments
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I'm new here!

Hi, my name is CantDance. I'm here because I found a post I could totally relate to and I would like to gain more insight into how I can improve my days, relationships, and chronic illnesses in any way possible. I was diagnosed with IBS-D in 2006, PTSD, generalized anxiety and depression in 2008, and in 2019, I finally went to Mayo Clinic and saw 5 specialists including an Interdisciplinary MD and was diagnosed with myalgic encephalomyelitis(ME/CFS), fibromyalgia, autonomic, autonomic nervous system disorders, centralized sensitivity syndrome (CSS), and allodynia on top of all of my previous diagnoses. My chronic conditions had flared after a kidney stone surgery at Mayo’s hospital. I came to recognize other times in my life when I was having a flare but didn’t know what it was. Things got worse after having Covid-19 in Dec. 2020. I was once an active involved parent & grandmother and a ballroom dance instructor/choreographer/performer and social dancer. Life is not the same! I’m lucky to have a loving husband and four understanding adult children. although it’s hard for them to understand the scope of my illnesses, they do their best to get educated. I still struggle with limiting my energy expenditure, guilt over not contributing financially to the household as I once could, incurring medical expenses, and missing my old life. Thanks for letting me join in.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #ChronicOrthostaticIntolerance #ChronicPain #MyalgicEncephalomyelitis

12 reactions 4 comments
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Words I never thought I'd say

I think I would rather go to the dentist than go shopping for pants. With Fibromyalgia (particularly allodynia) and spinal osteoarthritis, shopping has become a much-dreaded activity. Yesterday I braved the mall to find a pair of pants that would be suitable for hanging out and work while being most importantly comfortable! Two and a half hours later and I did walk out with pants, but only after 5 trips to the change room to find the right comfort level (as little pressure as possible) and many pictures to my sister to confirm the right fit (not too baggie). Uff let me tell you, it was an ordeal. One good hack, if you'd call it that, was shopping with a slight flare. It kept me in check so that I didn't get too ambitious with what I could handle!

Does anyone else have a similar experience clothing shopping? Please feel free to share tips or adaptative clothing brands that you would recommend.

#Fibromyalgia #Osteoarthritis #AdaptiveClothing #Allodynia

1 reaction 2 comments
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How do I know if my pain is Fibromyalgia?

Fibromyalgia has so many physical symptoms. Headaches. Joint pain. Tummy trouble. Rashes and stuffy noses.

This makes a diagnosis difficult because it can emulate other illnesses.

So is the pain you're experiencing Fibromyalgia? My latest blog post explains 3 ways you can test yourself for Fibro at home.

#fibromyalgia #Allodynia #Hyperalgesia

How Do I Know If My Pain Is Fibromyalgia? 3 Quick And Simple...

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#Fibromyalgia Fibromyalgia and anxiety

Tonight I am at the end of my rope. I am having anxiety surrounding my fibro. I believe either allergies or a sinus infection is lingering and its making feel like sh*t. I am exhausted so my mind is on overdrive. Im experiencing allodynia. I just want it to stop . I hate when it gets this discouraging, would appreciate words of encouragement #Fibromyalgia #ChronicIllness #Anxiety

2 comments
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Allodynia

Does anyone have the symptoms of allodynia? I had a fibromyalgia flare up recently that was so uncomfortable and frustrating that it led to tears.

Everything bothered me constantly for a couple of days. Here’s a list of what I experienced: All tags from my clothing, elastic from bras and panties, wrinkles in anything touching my skin, (clothing, sheets, etc.), all seams, (on furniture, clothing, etc.), and vulvadynia, (the vaginal area of my body was so painful that I couldn’t sit).

I was constantly shifting around to get comfortable. Very anxiety provoking.

5 comments
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Fibromyalgia getting worse?

Fibromyalgia isn't supposed to get worse but I've started experiencing horrible itching, buzzing, and allodynia on top of the tremors, fatigue, and general pain. I'm covered in bruises now. Any thoughts or similar experiences? #Fibromyalgia

fibromyalgia

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17 comments
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Sensory Assistance

For people with touch sensory disorders, what materials are painful for you to handle? What helps?

One thing that I experience: touching anything metal feels like I'm being electrically shocked. So I use wooden flatware instead of metal utensils.

I'm curious what others experience with different materials and what you do to accommodate yourself.

#Allodynia #SensoryProcessingDisorder #Sensoryfriendly #ChronicPain #Fibromyalgia #CentralPainSyndrome