April 13, 2023 at 8:31 pm #202865Reply To: Message Boards
Well I just turned 39 today! I was diagnosed when I was 34 I think. The only issues I had in my late 20s was painful shoulders and muscle spasms. I honestly didn’t think there was anything wrong when I was diagnosed. I used to do lots of heavy lifting and was normal to get very sore after! It’s only been the last year or two that I have noticed a change in my ability to keep going. Terrible fatigue and muscle pain mostly in my lower legs. I walk a lot slower now too. I can still walk 18 holes of golf but it’s not so fun after it for a couple days. The painful spasms are better but I think that’s because I do less than I used to. The muscle twitching drives me bananas though! Do you get them? My cks were also around the 3000 and now average 1000. Why do they get lower then do you know? I’m in central Scotland. Where abouts are you?
Happy Birthday to you 🎂 well done for managing the golf.
I was 36 when I first noticed I was so very tired and sore & knew it wasn’t right at that age. I don’t get the muscle twitching though.
I can really relate with the fatigue, it’s overwhelming sometimes, I feel more tired when I wake up than when I’m going to bed. I’ve been able to most things until the last couple of years by learning to pace myself, however my muscles aren’t really that strong now. It’s a bit scary facing the fact that I can’t do what I used to anymore. I’m in the north west England near the Lake District.
I met up with a girl who has LGMD 2A in Manchester a couple of weeks ago we first met at the MDUK meet up last July at Haydock.
I also went to the York MDUK conference & met up with a young man with 2L he’s the first person that I’ve met with 2L it was nice to see someone who knows how we actually feel.
H 🙂BeadybirdParticipantPosts: 0Joined: 26/07/2020April 13, 2023 at 8:54 pm #202866Reply To: Message Boards
Oh that’s cool, maybe I’ll pop along to one of the next conferences. Would be nice to discuss things we all relate too. I speak to people near my work most days and they ask what I have done to my leg as I’m hurting worse some days and I’ll make something up as I can’t bring myself to say there is something wrong with them! It’s been really nice talking with you though discussing all our similar aches and pains because as you say it’s so frustrating talking with people who don’t understand it like we do. That’s why this website is so great!Ems15ParticipantPosts: 0Joined: 31/07/2018April 13, 2023 at 9:35 pm #202867Reply To: Message Boards
I know what you mean, my family didn’t really accept that there was anything wrong with me because I look ok . I think they are accepting it a bit now, my husband is the only one who really understands my struggles.
Nice chatting with you , we may meet up at an event in the future .
H🙂BeadybirdParticipantPosts: 0Joined: 26/07/2020April 27, 2023 at 8:34 pm #202904Reply To: Message Boards
Hey Ranald. Mine was first found to be high when I was about 18. This was due to being in the institute of sport for Scotland. They do a medical each year for the athletes to test for muscle damage and all the other stuff. Can’t really remember what they did about it, I think nothing as there was a lot of weight training etc. 10 years later it was looked into again when I started suffering pain. Nowadays it’s only around 800-1000.Ems15ParticipantPosts: 0Joined: 31/07/2018
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