Muscular Dystrophy

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I'm not allowed to comment

When I see a post on my feed several times I will make a comment and it will say comments turned off when the post was just presented.Then I will see someone else comment and it wasn't turned off for them. I mean I get it maybe people don't want to hear my comments maybe because there are not too many men on here maybe I just don't belong here. #MentalHealth #MDD #MuscularDystrophy #etc

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Sensory overload

Hi I am not new to the mighty but new to this group and joined to see how other people deal with sensory problems. I can't even touch my own body without it feeling like a stranger is touching me.#Fibromyalgia #MuscularDystrophy #MDD #Allodynia #Disability #FootDrop #CervicalRadiculopathy

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Understanding rejection

Sometimes I look back on some of my relationships, the ones where they already had another boyfriend before they ended up dumping meeven my ex wife, and I think how cruel that actually is. My last relationship i gave it my all she had five kids and I helped her with Dr appointments taking the kids to school helping around her house and even in my condition but I did it for her kids it gave me a sense of purpose . Before I met her I was already disabled with 6 of the eight back surgeries already done she said had no problem with that

The relationship lasted eight months she was only using me until her supposed ex husband got out of jail. All the romance she threw my way and I reciprocated I was in heaven.

Long boring story but I am really starting to question who I am how could I let this woman walk all over me e and not see it coming. I consider myself not to be a dumbass but it wasn't only her i have let people do this to me for a long time even supposed good friends . What makes a human being be so stupid when it comes to being able to detect someone is hurting you? Maybe it's my low self esteem humble people are easy to con but I don't understand why I let it go so far 💙 #MDD #PeripheralNeuropathy #allidynia #dd d#Diabetes #Disability #hyperalges ia#MuscularDystrophy #RareDisease

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My mobility aids.

It's been awhile since I walked without the assistance of my leg braces so long I almost forgot but you don't really. Fifteen years and counting and I am very aware that without them my life would be much worse. At first it's the appearance that bothers you but it soon gives way to being practical I mean am I not going to leave my house without them. I saw a post about mobility aids and how if you need them use them. Don't worry about how it looks or how people stare at you their opinions have nothing to do with your health so when a medical professional tells you it will make your life easier then use them.#MentalHealth #MuscularDystrophy #DegenerativeDiscDisease #Disability #PeripheralNeuropathy #Allodynia #hyperalges ia#MDD #Anxiety

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Feeling like a fraud

I can barely remember the day it started or maybe I have evolved into some kind of numb punching bag. After 15 years of chronic pain and immobility I am forced to take pain pills ever day. If you can ride this journey without it changing the chemical make up of your brain my hat is off to you. The stigma of taking antidepressants and being on pain pills is something you never shake when we live in a society of ableism any deformities are considered a handicap.

This is why I feel like a fraud my mental and physical wellness are being propped up by medications the real me is probably lost and always will be. However if I don't take the antidepressants my agoraphobia and depression comes back like a freight train. If I don't take the pain medication I can't walk even with braces and my blood pressure (more pills) will go through the roof. I'm stuck on this ride until my last breath because there is no cure for my rare muscle disease each day counts as being upright and not bed ridden my worst fear.#MentalHealth #MDD #OCD #MuscularDystrophy #PeripheralNeuropathy #Disability #alodynia #Hyperalgesia #DegenerativeDiscDisease

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Brocken dreams

When your young you have a idealistic vision of what life should be, go to work and do a good job and you will be rewarded. Then one day you become disabled and now you find yourself fighting for a small stipend and prove to the SSA that you are disabled enough not to work. I had all those dreams of a pain free life even if I have to wear the full leg braces it's better to be just disabled and not in constant pain. I miss the person I used to be ready to explore the mountains with my dogs and go for a swim in the lake. I miss having friends although friendships are hard when society looks down on my disability and I have to cancel plans because of the muscular dystrophy. So I decided to reshape my dreams so I'm not heartbroken when I look into the past and I'm 58 and became disabled at 40 so I have lived 40yrs without major pain so I'm happy I got to spend those years .

So if you find yourself thinking about brocken dreams then it's time to change your dreams 🙂#Anxiety #DegenerativeDiscDisease #MajorDepressiveDisorder #MuscularDystrophy #RareDisease #OCD #disabilty #Allodynia #hyperalgesua

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Trying to hang on chronic pain

Another morning waking up in debilitating pain forced to take pain meds if I want to walk today. I've been at this for so long I can't remember what a normal life looks like a day when I didn't have to take meds or be able to walk with out full leg braces. I'm 58 had seven spine fusions and at the beginning of the year diagnosed with a rare muscular dystrophy which is taking out all my muscle slowly. I write these posts because I have no one to talk to and unfortunately there is nobody on the muscular dystrophy forum and I am frustrated because there is no cure or even treatment to slow it down. I don't think it's all dismal I find happiness when I can and let my brain be distracted from the pain by healthy conversation or doing what I can do gardening with my mom.#Anxiety ##Chro nicpain#RareDisease #MuscularDystrophy #DegenerativeDiscDisease #BorderlinePersonalityDisorder #Disability #OCD #PeripheralNeuropathy #alldynia #hyperalsesia #MDD

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Last flowers

Just wanted to share something that brings me joy planted flowers with my mom on the patio. Life is so rough sometimes it brings sunshine in both our lives. Have a great Sunday 🙂#Anxiety #DDD #OCD #RareDisease #ChronicPain #MuscularDystrophy #etc

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The patio still full of colors

Just sharing some pictures of our colorful patio seems to just keep going rose bush gave out 50 plus this summer and is still going and these other flowers will give us flowers for awhile. Fun gardening is the only gardening #ObsessiveCompulsiveDisorder #BorderlinePersonalityDisorder #MajorDepressiveDisorder #RareDisease #ChronicPain #MuscularDystrophy #PeripheralNeuropathy #DegenerativeDiscDisease #Disability

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