Degenerative Disc Disease

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

For close to eight years I have been a facilitator for two in-person mental health peer to peer groups a week. Since April attendance to the groups have steadily declined for various reasons. Then since the beginning of September, no one came to the meetings, not a single soul. I knew the meetings would have to stop so I made the announcement on our Facebook page what the last day would be. I got a few objections which I thought odd since no one was attending. I arrived yesterday at the building where the meetings had been held and it was being closed up, the owners were moving. So that is that. The groups were intended as support for those having mental health issues, to share ideas on how to cope with day to day life. It was very successful for eight years, then it wasn't. I wish I knew why. In the beginning the groups were established under a national mental health organization. We broke from them due to disagreements over policy. Unfortunately, that took away our ability to get the word out about us. Today I feel sad and lost. And like I let people down even though that isn't rational. I'm going to try and be good to myself today and enjoy the little things… like my cat on my lap and my dog at my feet. Thanks for letting me express my feelings.

I just can't seem to find people on this forum who have muscular dystrophy. There is a group with two members but no one has posted in a long time. I have a rare form but still does anyone have muscular dystrophy here? I just feel isolated and I am able to discuss mental health here and it's beneficial.#ObsessiveCompulsiveDisorder #MDD #MuscularDystrophy #lonely #DegenerativeDiscDisease #PeripheralNeuropathy #RareDisease #ChronicPain

I was never one for vanity trying to look my best for the world around me. I do wear clean clothes and shower daily hygiene being the goal. Now my hands and feet are contorting as my muscle disease attacks the intrinsic muscles as well. I don't like the way my foot is shrinking and my toes point in different directions and I'm sad because I don't remember what it used to look like. Deformity that effects your daily tasks and activity is disheartening I don't even remember what my hands look like.##ChronicIllness #ChronicPain #OCD #MDD #DegenerativeDiscDisease #Anxiety #PeripheralNeuropathy #Disabled #RareDisease

Hi, my name is dreamer86
When I was 32, it started with just eye pain then went completely blind in my left eye. I was sent to an eye doctor which diagnosed me with Optic Neuritis, then sent to palmetto infusion for steroids, but after time my vision came back but not all the way. They then sent me to a neurologist that said I had swelling on the brain and to be careful and watch for signs of a stroke. I thought the worst of everything what if something was to happen to me what would my baby girl do with out her mom then, I thought that was the end of it but it was really just the beginning. A year later I was at work and noticed my right leg was dragging behind me but I didn’t let it stop me I kept going, later that day I also realized I didn’t have feelings in my leg and I’m so glad a month before that I had switched neurologist, and she had me go for a MRI ,blood work. That’s when everything changed. They found a golf ball size lesions on my brain and I was diagnosed with MS August 2019.

I was a hard working single mom, And in one moment I felt that everything was over and everything I use to do, I would not be able to do. I had to come to how to live in constant pain, how to function while completely exhausted. How to accept that some days, I need help — mobility aids, support, and rest.

MS affects me every single day, even if you can’t see it. Behind the smiles, I carry the quiet weight of knowing that at any moment, I could lose so much. But even with all of that, MS didn’t break me. It made me stronger. It made me grateful. It made me a fighter. It showed me who my true friends are. It revealed the strength of my family and the love that surrounds me. No, my life will never be the same. But it’s still mine. And I’m still here — living it with courage, heart, and purpose.

Now here I am 7 years later getting diagnosed with osteoarthritis that will soon turn to rheumatoid arthritis, and degenerative disc disease at the age of 39. I was told I have to walk with a cane are walker and have braces on my legs. I’m thinking oh my at such a young age why me, but I know I’m strong and will always keep going and keep pushing through. The nurse that day asked my pain level and I told her, and she said you don’t look like it, I said that cause I’ve learned to smile through the pain and discomfort, that I have had for the past 3years.
#MightyTogether #Depression #MultipleSclerosis #ADHD #Anxiety #Migraine #Osteoarthritis

Some mornings the pain is so bad I just want it to end but I know the only way it will end is when I die. Rare disease with no cure or treatment a genetic mutation that slowly takes out all your muscles. You don't think every muscle in your body can be affected it's sometimes unbelievable but this gene MYH7 is responsible for instructing muscle structure for skeletal muscles and cardiac muscle. I feel so trapped in 58 so who cares I guess they are finally noticing congenital heart failure in the genetic sense in adults. If they do find a cure it will be too late especially since funding for research is being taken away .#OCD #BPD #RareDisease #ChronicPain #MuscularDystrophy ##MDD #DegenerativeDiscDisease #PeripheralNeuropathy #

Feeling defeated again. As usual my health has the final say always winning. I have to take another semester off from school. My dad has to help me get dressed, in the bathroom, and every time I get up. I’m also using a walker and 38yrs old. My back is way worse. I’m very still with limited range of motion due to severe sharp shooting stabbing pain. Doc called in a steroid for me. If not helping I’m suppose to go to the ER.

I couldn’t take this class in the summer and can’t take it this fall. I have this class and 1 more to finish my program in child development online. Then I will finally have my bachelors degree. In 2010 I had to drop out for having emergency back surgery due to Cauda Equina Syndrome. Then 10 months later in 2011 I had a 2nd back surgery due to severe congenital #SpinalStenosis . 2013 went back to school at the local community college for early childhood education. Graduated with associates degree 2016 going part time and another medical leave. 2022 decided to finish my bachelors degree online. Now that I’m this close with only 2 classes left I have to take more medical leaves. If I can’t do these practicums I will need to switch majors again. I was looking so forward to graduating May 2026.

Now I’m not sure when I’ll be done with my bachelors degree. It’s been a long road. Even if I can complete these 2 practicums I’m not sure what I’ll be able to do in this field. Not only is my spinal stenosis worse, I have #DegenerativeDiscDisease #Arthritis and now #Scoliosis all in my lumbar region. My cervical spine is bad also but not as bad.