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Old 02-21-2013, 04:42 PM   #1
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Limb Girdle 2a pain

Hi!
I was just wondering if anyone else with Limb Girdle MD has constant pain issues? My MD Dr has told me that most people with limb girdle do not have pain issues such as the ones I do, everything seems to hurt from my fingers to my ankles. I take pain meds a couple times a day to control it but on some days even that doesn't seem to help- the only other relief I get is from stretching when I can and warm baths. Exercise seems to cause more pain as does sitting around....I am absolutely miserable and wondering if anyone is going through this??

Thanks,
Ali

 
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Old 02-21-2013, 10:38 PM   #2
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Re: Limb Girdle 2a pain

Hi Ali

I have LGMD and also have pain issues but only my muscles and not in my limbs. (All my muscles from shoulders to legs) The worse is my back but since I'm using a wheelchair 90% of the time now the pain is basically to it's minimum.

I've tried all the pain medication known to man but the only thing working for me now is meditation and staying off my feet but still using my body (in a wheelchair you have to move your body to move)

It sounds horrible but you do start "live" with the pain and in my case it becomes so much part of my life that it becomes "bearable"

I hope you find a way to deal with your pain and although it sounds like uselesss words keep a positive attitude - it helps

Mandy

 
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Old 02-21-2013, 11:59 PM   #3
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Re: Limb Girdle 2a pain

Hi Ali

I have LGMD and also have pain issues but only my muscles and not in my limbs. (All my muscles from shoulders to legs) The worse is my back but since I'm using a wheelchair 90% of the time now the pain is basically to it's minimum.

I've tried all the pain medication known to man but the only thing working for me now is meditation and staying off my feet but still using my body (in a wheelchair you have to move your body to move)

It sounds horrible but you do start "live" with the pain and in my case it becomes so much part of my life that it becomes "bearable"

I hope you find a way to deal with your pain and although it sounds like uselesss words keep a positive attitude - it helps

Mandy

 
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Old 02-22-2013, 07:52 AM   #4
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Re: Limb Girdle 2a pain

Hi Mandy, Thanks for the reply! Maybe a wheelchair would help...I get around with a walker right now but holding myself up has been more difficult lately. I have never tried meditation, might be worth trying- I really have nothing to lose.

Positive attitude is really hard right now, I've had the pain for a long time and I've tried a million things for relief. I also get super frustrated at people who tell me that when they look online it says "pain is not associated with limb girdle MD". Anyway I appreciate the response and if anyone out there has some pain relief advice or just wants to vent about the issues you're having regarding your disease I'll listen- This is all very new to me and I don't know a single soul with MD so I'm very much learning as I go on this crazy twisted journey.

Ali

 
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Old 02-23-2013, 12:04 AM   #5
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Re: Limb Girdle 2a pain

Tha'ts my pleasure. I've had this for half my life now declining at a very slow rate from walking fine to limping to using a walker and now a wheelchair and every day has something that is a challenge. From taking a few steps without losing your balance till tryng to roll over in bed

Something that helps me when my pain get's to me is strong migrane tablets. Sounds like it makes no sense but well it works for me.

Staying off your feet (although you want to be mobile as long as possible) and now using an electronic wheelchair is a blessing for me.

I clean the house, cook, wash dishes etc from my chair that in the past would have been an extreme painful task.

I know a positive attitude is sooooo hard. Been there done that but for me remembering that I can still take care of myself for now gives me no choice but to know I'm still ok

Sometimes I do get down and cry and have a "I feel sorry for myself" moment but it passes and I watch a movie to cheer myself up

Only you can change things for yourself and yes listening to someone else helps but in the end you can only rely on yourself as to how you feel

Well here is a huge "HUG" from me

 
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Old 03-07-2013, 07:28 AM   #6
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Re: Limb Girdle 2a pain

I have been diagnosed with Lamberts Eaton Syndrome, and now they are going to test me for FSHD(facioscalpulohumeral Muscular dystrophy) and OPMD ( oculopharyngeal muscular dystrophy). My pain is constant now days, especially in my calves & thighs, shoulders, ears & eyes. I look forward to a morning I wake up and can get out of bed without straining or in pain. I too have problems turning over while I am in bed. It is such a struggle. And it seems to be getting worse. I am not with the aid of a walker , yet, but have noticed that feeling like my legs are giving out on me while I am walking.
I had a shingle of the eye, and am now being treated for glaucoma. I have times when it feels like something is choking me, and I will gag on water.
I have been learning a lot over the past few months about this illness that the doctor suspects I may now have. God bless all of you for all that you have to go through.

 
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