Viewing 11 posts - 1 through 11 (of 11 total)
  • #185086
    LGMD2i

    Anyone on here with LGMD2i? I’ve had the official label for less than a year after many years of suspected MD.theres very little information out there.
    I’m 35 And have felt the weakness in my thighs and hips for quite some time- occasional falls, struggling up from the floor, mostly one step at a time on the stairs but can still do alternate legs. Cant run now. Still working and walking though. Biggest symptoms are tiredness, tiredness and tiredness. Ive recently developed neck pain and drs feel its bursitis. It’s not going. Had it 8 months. It’s hard to lift full kettle without pain because of it. What I’m noticing is that it feels as though the neck pain may actually be a symptom of shoulders being weaker and me finally noticing it?! As in- perhaps I’m using different muscles to compensate and that’s straining my neck?!
    Another thing- and please tell me if this is not acceptable here- sex is hard sodding work now! Legs are just stupid and I have to use my hands to put them where i want them. If I’m lying on my side my hips are agony and anything g involving my hands now is exhausting for my shoulder, even if I’m supporting the weight of my arm being raised.
    Anyone know what I’m talking about?? No one would know I was struggling really to look at me- it’s all very subtle. :oops:

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
    #185097
    Reply To: LGMD2i

    Hello Pips. I am sure someone with LGMD2i will come along to chat with you soon. But let me say that we can all relate to all of the problems you are having in one way or another. I have FHSD and find tiredness is a major problem now (of course I am old now so that doesn’t help). May I ask are you getting regular physiotherapy. i know for me that has helped keep many symptoms at bay, or reduced, by making sure what I have left that works, works to its best ability. Are you thinking about OT help now as well. Like with your kettle problem you can get special kettles which you do not need to lift. I have the same difficulty but I only put in enough for one cup full, and as I only mainly drink cold drinks anyway I can manage now.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185105
    Reply To: LGMD2i

    Hi! I’m not unable to lift kettle, it’s just harder now. Weird to see the little changes. I may look in to further gadgets i could try though. Did you progress in these small ways too, always wondering if it was MD related or just tiredness or injury? I have been told I don’t need physio?!?! I do chair based yoga that helps keep me moving though. I have done physio in the past too. So far the only aids I use are grab rails up the stairway and on wall by shower and bath.

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
    #185107
    Reply To: LGMD2i

    Hiya Pips, sorry you are experiencing these difficulties. I’m afraid I can’t advise on the sex though, as I’ve forgotten what that is!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185114
    Reply To: LGMD2i

    I have certainly had those moments when i do not know if it is the MD or something else. I have lots to choose from including old age!! I am really surprised that someone has said you do not need physio. I am so hoping it was not a neurologist. It has helped me not only to be mobile for longer, but also helped me to look at all the interactions of the various bits of my body in relation to MD. That is an important understanding and surpasses that that I learned in college, which was about what the parts do and how they do it.
    The equipment you have is important. Did you put them in yourself or was it OT?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185121
    Reply To: LGMD2i

    Mike I put the rails up myself. Neuro specialist physio said I don’t need physio! I was seen in Newcastle specialist centre and they gave me a physio program years and years ago. Thats it. I do seated yoga run by a physio, but this is a private thing I pay for and I don’t actually do physio.

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
    #185124
    Reply To: LGMD2i

    Have you seen Brevil hot cup kettle that does not need lifting while hot and can be filled with a jug.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #185133
    Reply To: LGMD2i

    I am a big believer in physio. I have been having a regular physio visit for 7 years now and I am certain that this has helped maintain mobility and function.

    I was once told by community physio services that I wouldn’t qualify because there was unlikely to be any improvement. I think this is quite short-sighted – what about stopping things from getting worse as quickly?

    I paid privately for 6 years but eventually got it built into my care package last year. It took a long time to convince them a you might imagine. You may sense this is a subject’s I feel strongly about lol. I think it is all part of keeping me well and out of hospital – hope spiral admission would cost a whole lot more!!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #185193
    Reply To: LGMD2i

    Well done! So frustrating to have to push for something so obviously needed. I did have some local physio for a bit but they didn’t grasp MD at all. They were determined I could build muscles where they were just dead. The specialist physio in neurology did give me a program a long time ago which genuinely helped loosen me up a lot. Maybe I’ll revisit that. Thanks!

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
    #187485
    Reply To: LGMD2i

    I don’t have your MD but I totally understand where your coming from, mine is very discrete. The tiredness, I can have a full nights sleep, then sleep for a couple hours during the day.

    I did a diary with my physio and on average slept 16 hours per day.

    It’s so annoying!! :bang:

    Lifting heavy kettles causes spillage haha.

    I can walk but people always think I’m fine, so I have to be careful because it’s easy to be knocked over!

    Mded89
    Participant
    Posts: 28
    Joined: 10/03/2014
    #187496
    Reply To: LGMD2i

    My local physios only offered one treatment and then I was given a leaflet to carry on after that. I did the best I could rubbing the leaflet all over my body, but, no change. On a serious not I have been going to the Neuromuscular Centre in Winsford for years after a referral by my then Neurologist. They have made such a huge difference, not just to my mobility and pain, but also to my self esteem. It is like being with family. Sadly, a few weeks after my last appointment, which had to be cancelled because of the virus, I am certainly feeling the difference. Mobility much reduced, pain much increased. FOr m it is a key factor of my treatment, and should be recognised as such for all types of MD. If we are in as good a fitness as we can be then we can fight this MD so much better.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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