Pain? - Muscular Dystrophy Message Board

HoppyGator · 08-13-2008, 05:26 PM

Is anyone here with LGMD having pain in the legs and hips?

Madalot · 08-14-2008, 05:25 AM

Hi Hoppy!!

Yes, I definitely have pain, especially in my legs. Sometimes its worse than others. I have found that in recent weeks, I have severe muscle pain in my thighs (left one especially) when I'm trying to fix dinner. I am having to sit down and let my daughter and husband do much of the work that I would usually do.

When I saw my neurologist in 2007 for my yearly checkup, I told him about the pain and he put me on gabapentin. I took it for 6-9 months and it seemed to help. But I take so many mediations for different things and with Medicare as my only insurance, taking prescriptions that aren't absolutely necessary is costly. So I stopped taking it about 3 months ago and seemed okay up until a couple weeks ago with this new severe muscle thing. I hate to start taking the gabapentin again because of the costs involved.

If I remember correctly from my doctor and talking to people here, the pain is not from the LGMD per se, but more from the use of the muscles.

I assume you're having some pain now. Have you talked to your doctor about it?

SHANTACLARE61 · 08-14-2008, 03:49 PM

Hello Hoppy,

I too have pain. It's mostly in the later part of the day. In my thighs just from using my legs in a normal day, in my hips when I do alot of walking or standing, and across the back of my neck and upper back and upper arms also just as a result of normal daily activities.
I take 4 advil at a time when needed. It seems to help but I don't want to take too much of any thing if I don't have to.

Share more if you like, we are here to listen.

Mary

HoppyGator · 08-14-2008, 07:06 PM

Thanks for the replies.. I am using a cane, but I think a wheelchair is getting close. I've had pain in my legs when I over-do- like walking too far or when I do some chores around the house. I think I pulled a hamstring a few days ago and that pain was so much worse. I guess it's easier for things like that to happen when the muscles are already so weak.
My wife and I had a good cry last night when we sat down and looked this thing square in the face. My Dad had this and my Mom was his helper while his muscles went away. He died in '93 at 83 years old. His wasn't diagnosed until he was around 72. And he had other complications causing his death. I'm 62 and I was diagnosed about 18 months ago. But I was getting really weak before I even checked it out. I started noticing the weakness about 5 years ago. Just thought I was old and out of shape.
Getting back to the pain, The hamstring feels better today, so I'll just have to do less-- which really bothers me. But you all feel the same, I'm sure.
I'm rambling, I know, but it helps to vent a little.
Thanks again...

SHANTACLARE61 · 08-15-2008, 12:52 PM

This is the place to vent!

I'm frustrated right now because my legs are really sore and I have so much to do to get my 9&10 yr. olds ready for school next week.
I was trying to remember what I did yesterday to feel like this and then it hit me, I went DOWN three set of stairs (took the elavator up) with my kids At there dentist appt. I realized I don't normally do that so I guess I hurt those muscles that I don't use so much.

I hate when things like this happen because it means I have to put more on my husband and 'God love him' he does so much already.

Mark, I'm glad you have found some peace of mind in your need to use a scooter. It sounds like a good one!

Hoppy, What type of LGMD do you have?