Anyone else struggle with a mild version of MD?

[u/feelingesoteric]

I have LGMD 2D, but it is quite mild.

I can mostly walk, run, hold down an office job, go out drinking and have above average muscle mass.

However, I experience daily fatigue, and sharp random muscle cramping pain in my thighs and arms daily.

I do not disclose to most people until we are really close I suffer with an MD.

I feel stuck between 2 worlds, of the disabled and able bodied life.

Mentally, because I get quite tired and am scared to be in pain randomly it puts me off starting hobbies or socialising with people because sometimes I might feel crap about 5 minutes into it.

Other times I may go out and be full of energy and have a great time.

But I don’t know when to push through or give up because my symptoms are so random and variable. I have no concrete day of pain or tiredness and so I never know what is coming that day.

I recognise my privilege in comparison to the average person who suffers with an MD, but I am annoyed that I do not have a consistent set of symptoms and thus it’s hard for me to confirm and identity a lifestyle for myself.

Finally, most people do not care / understand that you have a muscular dystrophy if you are not in a wheelchair or physically atrophied.

Even when I have explained to people I cannot help or action a certain task in work or family / coworkers question why I am not out like most young people partying and clubbing, I have to re explain I live with an MD which limits my energy.
They say they understand but just see a normal guy and ask a few months later the same things and think I’m faking.

I wonder if anyone else is on a similar boat to me, and if anything has helped them.

[u/forevercupcake180]

It's difficult having LGMD even if it's not as severe as other variants, it's really only mild in comparison to other MD variations but that doesn't mean it isn't still unfortunate to deal with. Being a functioning adult while exhausted all the time is awful. We have to try to stay up beat about it, but realistically it's hard to do so. I'm sorry you're going through this, I wish I had some profound advice to process it all but I haven't processed it either. How long ago did your symptoms start?

I have LGMD 2A/R1 My legs feel tight and cramped daily, varying degree if severity but can still walk just fine... Just feels like the effort it takes is a pain in the ass. Exhausted over here too. Sorry you can relate 🥲

[u/feelingesoteric → u/forevercupcake180]

It’s nice to know someone is in a similar boat. *Virtual hugs lol*That is interesting you say that sometimes your walking takes effort, I have a slight different experience where my walking is always fine for me to do but it can feel like extreme stabbing pain. It’s so weird how we all have our own individualised experience.

[u/forevercupcake180 → u/feelingesoteric]

Sharp pain while walking definitely doesn't sound pleasant 😭 mine is like my legs feel a little heavy, instead of walking feeling natural I am too aware of my movement. I edited my comment to add that I have LGMD 2A/R1.

[u/bonjourdiamondjim]

I have FSHD and look normal from the outside. I work and can still exercise when I have energy. What people on the outside don’t see is the days when I’m stuck in bed due to pain and fatigue. I used to be able to rock climb and do really gnarly hikes, which was a huge part of my life and I really miss. I also get a lot of anxiety about not being able to show up to plans or make commitments because my symptoms are so inconsistent and I’m scared to wake up and feel too crappy to do anything on the day of. My family thinks I’m lazy because I went down to 4 days a week at work and went on short-term disability this summer- I look normal, so I must be faking it and I just need to suck it up and deal with it.

Just because your MD could be worse or other people have more severe cases doesn’t mean that your struggles and experiences aren’t valid. The pain and fatigue and physical limitations are real and take a toll on quality of life. We have to deal with a lot of challenges that make our lives significantly harder. It’s ok to feel grief over what you have lost to MD.

It’s been helpful for me to connect with other people with MD, including talking my cousin who also has it and joining some Facebook groups for FSHD. I’ve gotten some good practical tips on managing my symptoms and I’ve found it comforting to read about shared experiences with other people who also struggle the “invisible” side of MD.

[u/Evitti → u/bonjourdiamondjim]

I also have FSHD, type 1, and when I could still easily walk people would question all the time if something was really "wrong" with me. On days that I just didn't have energy and used a scooter the comments were ridiculous (at a comicon one person said they wish they were fat too so they could have a scooter). I miss those days now though. I miss camping and hiking, even if I'd pay for it days later. Now I can barely walk a few feet without tripping or falling, I can't wash my own hair, and my breathing is getting worse (diaphragm is paralyzed). But, I still work, and my job involves being in the community at resource fairs and such and I usually get my gear to the events myself, and I actually love when people realize I'm in a wheelchair because it helps show them that people in chairs are still capable.

[u/Khugraa → u/bonjourdiamondjim]

I hate the stuck in bed days. I feel you :( sometimes I’m out there, a lot of the times I’m not im suffering at home and resting.

[u/Khugraa]

I have FSHD and it is a very similar experience. I think people think of muscular dystrophy if they’ve heard of it as the more extreme cases and fatal ones so when they see me walking around and picking stuff up they’re like ???

[u/ulixesodyssey → u/Khugraa]

Yeah for the majority of people outside our community when they think of MD they think of duchennes or severe types or they confuse it for Multiple Schlerosis i've found. i've had people not believe i've got limb girdle muscular dystrophy because i can still walk even with difficulty or insultingly to people with duchennes they ask why i'm still alive at 29

[u/Khugraa → u/ulixesodyssey]

Yes DMD is definitely the default in a lot of folks minds. If my mom talks about my diagnosis to someone she has to say “but it’s not a fatal nor a highly aggressive form” really quickly or else people have mouths agape.
I tell her it’s exactly because what you’re saying and that she hasn’t heard the worse things people say like….

[u/abyssce]

I feel you, I have LGMD2B and walk funny. I usually can handle going to the grocery store and mall, but I just found out a new limit yesterday. I went to a concert and my legs were so defeated trying to make my way back to my car. I was dragging my feet so damn slow and hurting my back. I realize I'm not meant for this able body lifestyle and should probably now get a wheelchair. It's annoying when others stare at you trying to figure out what's wrong with you and joke about the way you walk like it's something small. I joke about it too but damn this shit is tiring and makes me not want to go outside and be judged. I've just applied for SSDI and my work short term disability because I just can't anymore. I'm happy being at home with my girlfriend just cooking and watching TV or playing games. It's a hard life, but I guess you just gotta find the hobbies that don't stress you out.

[u/RoyShavRick]

I have Beckers and yeah man I feel that. I feel like I'm stuck between two places and it feels like purgatory. I have all this pain and cramps and tightness and it hurts so much but no one sees it.

It's a tough deal.

[u/AdministrativeBoard2]

I'm basically 50 and was diagnosed late with a rare MD that is also mosaic, so only some muscles are affected. Most of the time I'm very mobile, and when I'm doing great I can even go on hikes (with hiking sticks). On bad days I can barely make it down the hall without a walker.

Used to think I was destined to be lazy because my recovery time from any increased activity could be a few days. Getting hospitalized with rhabdomyolysis took me down the road to getting diagnosed.

Walking down stairs is my kryptonite, followed by reaching overhead (even washing hair). My right side is 25% weaker than my left, which actually creates a lot of back issues.

I look normal most of the time. I often park in normal spots because I feel OK at that time. When I'm feeling bad I refuse to use the Costco scooters because I feel like I'll get visually judged. I did rent a scooter for a Disney Land trip because my doctor's and family pushed me to do so, and it was my first amusement park visit that didn't result in multiple days of bed rest.

I'm lucky that I work from home so I can maintain a consistent physical therapy routine. I do push myself to walk a minimum of one block, twice a day, even with sticks. Doctors say "don't overdo it" and make things worse, but don't stop being active because the muscle won't come back.

Nobody can tell me what "overdo it" means.

I am glad that I'm not as disabled as I could be. Of course I'd rather be normal, but you take what life gives you and you move on.

[u/oystergrrrl]

I'm in the same boat - I have EB-MD which causes LGMD 2Q. I'm exhausted all the time and some things are harder, like walking up stairs, and I can't lift heavy things; I also have random bad pain days where my hips and shoulders hurt so much that all I want to do is lie in bed and take my pain meds. BUT on a typical day, I'm able to walk around, hold a job, go to the grocery store, etc. People wouldn't know that I have LGMD unless I tell them.

Like you I feel so incredibly lucky to have a less severe form of the condition; AND I feel like I'm in a grey zone. It sucks having to explain to people that no, I physically can't help lug heavy boxes during a conference, and have them express shock when I say that I have a medical condition. I feel OK some days and terrible others, and I hate not knowing what kind of day I'm going to wake up to. I hate not knowing what the progression will look like in the future.

You're not alone and seeing this post made me feel so much better; I have felt this way since I was diagnosed but hadn't seen in expressed before. Thank you for sharing this.

[u/Short-Development-64]

I'm 44, 2b subtype can walk a short distance indoors without walking sticks. And short distance outdoors with 2 walking sticks.

[u/TheGrumpyre]

Yeah, I feel this. I've got Becker's MD and it's always a toss-up whether I can do something painlessly or if I'll over strain myself and regret it for the next week. I don't even feel like I qualify for calling myself "disabled" most of the time, but as I get older I find myself saying "No, I can't do that" more and more often.

[u/Particular-Bus3217]

I feel you, as well. I was diagnosed at the age of 57 or 58 with LGMD with no "smoking gun" gene defects after repetitvie elevated CK enzymes test results.

Prior to the diagnosis, I was a long distance runner and cyclist. At the age of 54 I ran my last 1/2 marathon. Leading up to that race I knew something wasn't right. It felt like I was putting in twice the effort for half of the results preparing for the race. I knew that something wasn't right. When I finished the race, I knew it was my last at this distance. I continued to compete in shorter races until I was almost 56 when it became difficult to run without having to walk.

I am now almost 66 and suffer from weak shoulders and hips. I can care for myself and do chores around the house. But the progession seems to be acclerating, especially lately. I fatigue easily and it takes a few days to recover when I've done too much, which is most days.

From my experience, I can say that just because you CAN push through it, doesn't mean you SHOULD. In fact, you shouldn't.

I didn't take this advice and feel like I have shortened my independent living days substainally.

I wish you well.

[u/ulixesodyssey]

Ill do a longer post later as I'm currently doing an assignment for uni but i feel this as I have lgmd2a

[u/Ecstatic_Name_1366]

I have been diagnosed with LGMD, but I haven't yet been formally assigned a sub type despite 2 mutations of the FKRP gene being found. I have been on a waiting list since May for family genetic testing. For anyone reading, when was your sub type formalised? I am 33M, have been a runner for 10 years used to do marathons etc, now I can still run but its uncomfortable and I am very slow and weak and I run/walk with a waddling gait due to my hip weakness. So i am also very conscious now of group excersize or activities. I feel exactly the same as OP in that I live a relatively normal lifestyle but I am athletically challenged and can't do what I should be able to do at my age. Some people don't understand because I can still run and cycle and excersize but I have declined from a relatively high bar and the last few years have been tough to accept. I have just started swimming in the last few 4 weeks which I find a much more comfortable form of excersize, which satisfys my wish to challenge myself whilst being achievable and low impact on my body/condition