It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Muscular Dystrophy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-13-2008, 05:26 PM   #1
Newbie
(male)
 
Join Date: Dec 2007
Location: St Johns, FL USA
Posts: 6
HoppyGator HB User
Pain?

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

 
Sponsors Lightbulb
   
Old 08-14-2008, 05:25 AM   #2
Senior Member
(female)
 
Madalot's Avatar
 
Join Date: Mar 2003
Location: Virginia
Posts: 263
Madalot HB User
Re: Pain?

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?

 
Sponsors Lightbulb
   
Old 08-14-2008, 03:49 PM   #3
Member
(female)
 
Join Date: Oct 2007
Location: USA
Posts: 63
SHANTACLARE61 HB User
Re: Pain?

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

 
Old 08-14-2008, 07:06 PM   #4
Newbie
(male)
 
Join Date: Dec 2007
Location: St Johns, FL USA
Posts: 6
HoppyGator HB User
Re: Pain?

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...

 
Old 08-15-2008, 12:52 PM   #5
Member
(female)
 
Join Date: Oct 2007
Location: USA
Posts: 63
SHANTACLARE61 HB User
Re: Pain?

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?

Last edited by SHANTACLARE61; 08-15-2008 at 12:54 PM. Reason: sp.

 
Old 08-16-2008, 10:10 AM   #6
Newbie
(male)
 
Join Date: Dec 2007
Location: St Johns, FL USA
Posts: 6
HoppyGator HB User
Re: Pain?

Shantaclare, No one is positive yet about what type of LGMD I have...Sound familiar?

 
Old 08-16-2008, 04:44 PM   #7
Senior Veteran
(male)
 
michigani's Avatar
 
Join Date: Dec 2004
Location: Michigan
Posts: 538
michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
Re: Pain?

I've been getting Charley horses mostly in my calves but sometimes in my quadriceps. Usually 3-4 times a week. No chronic pain to think of....I'm fortunate
in that regard.

 
Old 09-12-2008, 08:58 AM   #8
Junior Member
(female)
 
Join Date: Sep 2008
Location: COLORADO,USA
Posts: 23
COLOGAL HB User
Re: Pain?

Quote:
Originally Posted by HoppyGator View Post
Is anyone here with LGMD having pain in the legs and hips?
I HAVE LGMD, AM STILL WALKING (LIMPING) UNASSISTED AND I GET TERRIBLE LOWER BACK (POSSIBLY ITS IN THE HIPS) PAIN. ITS NOT JUST WHEN I AM STANDING OR WALKING EITHER, SITTING UPRIGHT ALSO FEELS LIKE THE WEIGHT OF MY BODY IS TO MUCH FOR MY BACK/HIP AREA TO HOLD. I ALSO FIND WHEN I OVER DO IT, THAT NIGHT WHEN I AM RESTING, I GET TERRIBLE MUSCLE TWITCHS (MORE LIKE SPASMS) I CAN'T GET TO STOP. SOMETIMES IT GOES ON SO LONG I CAN'T SLEEP.

 
Old 09-12-2008, 05:35 PM   #9
Senior Member
(female)
 
Join Date: Jan 2005
Location: Canada
Posts: 113
casinogal HB User
Re: Pain?

I, too, am having pain in the legs and hips. I had pain all down my left leg last night and couldn't get to sleep. I am newly diagnosed, and the pain was the main reason I went to my doctor, who in turn sent me to neurologist. I am not confirmed yet, though he is fairly certain I have LGMD. I'm waiting for results from blood tests and go for CT scan on Monday. If diagnosis is still in doubt, he will send me for muscle biopsy. Also, have difficulty with stairs and getting up from chairs.

 
Old 09-22-2008, 11:03 AM   #10
Member
(female)
 
Join Date: Oct 2007
Location: USA
Posts: 63
SHANTACLARE61 HB User
Re: Pain?

Quote:
Originally Posted by michigani View Post
I've been getting Charley horses mostly in my calves but sometimes in my quadriceps. Usually 3-4 times a week. No chronic pain to think of....I'm fortunate
in that regard.
Mark,

I have been getting Charley horses in my feet. It happens mostly when I'm lying down to rest and at bed time. I also get this tightness across the bottom of my feet. I'm guessing it is just another "perk" that goes along with having MD. Anyway, I try to do mild stretching but so far it hasn't really helped.

 
Old 09-25-2008, 11:06 AM   #11
Member
(female)
 
Join Date: Oct 2007
Location: USA
Posts: 63
SHANTACLARE61 HB User
Re: Pain?

Quote:
Originally Posted by SHANTACLARE61 View Post
Mark,

I have been getting Charley horses in my feet. It happens mostly when I'm lying down to rest and at bed time. I also get this tightness across the bottom of my feet. I'm guessing it is just another "perk" that goes along with having MD. Anyway, I try to do mild stretching but so far it hasn't really helped.
Does anyone Else have this tightness (and sort of tingly too) feeling in the bottom of their feet? It's not painful just really annoying.

 
Old 11-30-2008, 11:58 PM   #12
Junior Member
(female)
 
Join Date: Nov 2008
Location: Edinburgh, IN
Posts: 10
peachiemom HB User
Re: Pain?

I went to PT for the exact same problem. In a nutshell. . . your muscles in your back overcompensate for your legs so much that they are in a continual flex position, even when you lay down. They finally gave me a tens unit (it gives off little pulses) to relax the muscles.

I have Miyoshi Miopathy or Limb Girdle 2 - the sequel (whatever they are calling it now) I was diagnosed back in the 90's way before MM became cool. :-) when there were only 50 diagnosed cases in the US.

Jodie

Last edited by moderator2; 12-03-2008 at 07:12 AM. Reason: posted contact info

 
Old 12-26-2008, 10:45 PM   #13
Newbie
(female)
 
Join Date: Dec 2008
Location: San Francisco
Posts: 4
MMG1 HB User
Re: Pain?

When i was about 6 or 7 i can remember getting up in the middle of the night because my legs would be in pain and i couldnt sleep until my dad came in and massaged my legs with Absorbine Jr. The pain wouldnt go away but the coolness of the absorbine distracted from it. I didnt hurt real bad but was rather an annoying feeling that seems to be a small pain that lasts long. Recently i can remember having that now when i overdo activity. I guess when i was younger, i would run around more and is why my legs hurt. Also only when i point my big toe only and hold it, i feel the bottom of my feet cramping like a nerve from my toe to deep into the middle of my foot but i always let it go when i feel the charlie horse coming. Also, lower back pain, especially when i am lying down, i feel everything aching. I usually try to stretch when i feel them cramping up and it helps to ease the pain. hope that helps.

 
Old 12-30-2008, 10:38 AM   #14
Member
(female)
 
Join Date: Oct 2007
Location: USA
Posts: 63
SHANTACLARE61 HB User
Re: Pain?

I have a friend that is a PT and she told me it sounds like plantar fasciitis, which I guess is a result of MD's

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Blinded Pain test Nerve blocks horrendous Torley Pain Management 6 02-21-2012 12:12 PM
Back pain marilisa Back Problems 2 05-31-2010 12:07 PM
Chest pain for a year, new symptoms. acdc554 General Health 4 04-24-2010 11:33 PM
stump pain eldered Amputation / Prosthetic 5 04-23-2010 07:28 AM
Reasons for chronic pain LilMomma Pain Management 11 05-05-2005 10:43 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:31 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!