I do not know where to begin, but only what is on my mind at this point of the "Game". Being a white male of 58 years old, I have had "degenerative disc disease" (DDD) for about 35 years now, Stage 3. NO surgery on my spine. I had a Muscle biopsy in my upper leg was negative in 10-2011. Over the 35 years I can not tell you how many EMG's, MRI's, Cat Scans, and blood testing I have had done over the course of the years! And the number of Doctors OMG
I have been told I have Type 2 diabetes, Neuropathy, Fibromyalgia, On-Set of MS (what ever that is), Spinal stenosis in 11 areas, Permanent Nerve Damage in all legs and arms, Right Diaphragm paralyses and had a Diaphragm Placation done on 02-2012, my CPK blood level is 550 and as high as 1043 normal for me (normal level is 50-170), and NOW my "New" Nero (and I like him) thinks that illness has been missed or I have a mix of some, and I MAY that is MAY have Limb-girdle MD.
In 1999 the month of July with in 2 weeks I lost the use of my left arm. I could not even wipe my nose, touch me ear, hold a 16oz drink for very long and curl a 1# weight 5, yes 5 times. I was told it was from C5-C6 area by 2 surgeons and surgery will not help. THAT Made me very mad, so I started my own therapy with my weak left arm. I used rubber bands and 1# weights for a long time. I even used the hand grip unit you hold in your hand until I broke one from over use. My grip test at the hospital was 8#. After a year my grip strength was 51# and I could curl a 10# weight 30 times. Today it is stronger as if I was 25 again.
He ordered the LGMD blood test from Athena Diagnostics. I only have only Medicaid for insurance and on SSD. I got a letter from Athena stating that I owe them $3,618.75 BEFORE the test can be done.. LOL like I have that kind of money. SO the test will not be done, yet being optimistic as I am.
OK, NOW you have a over view of my health. And now for some questions from the GREAT GROUP here!!!!
Now my right arm is weak, standing up straight it is hard to lift my right arm up in front of me with NO weight over 8 times. The Deltoid aches all the time, down the out side of my arm to my thumb. I have been working on getting my strength back as I did with my left arm.
I go the Gym (Planet Fitness) 4-6 times a week and walk on the treadmill 1-2 miles and all types of the Exercise Units they have. I spend at least 2 1/2 hours in the gym. My legs are growing leaps and bounds on strength, I do not use a cane any more!
My upper body is slowly getting better too. Not like my legs, but I am happy.
OK the PAIN QUESTION I have, is important to me. Mind you I have had my share of pain over the years.... OH BOY!
This pain is like none other to me. Let me tell you I have had a bunch of types. This one is in my legs only, upper legs to lower legs. It is a very strange ache pain. Stand back this is going to sound NUTS! It feels not sharp, nor dull, but to the dull area of pain and grainy, yes I said grainy. Some days I can almost taste it in my mouth. OK OK call me crazy! This is why I have not told my Doctor.
I only take pain RX's a few times a week as needed. Pain to me is just another walk in the park.
With LGMD, do you have pain? Yes I know there are many types of LGMD, but do you feel pain and what kind?
IF I do in fact have LGMD, why has my legs improved a bunch. One unit at the gym I sit and use my lower legs to spread them to lift the weight, and the other I squeeze them to lift the weight. My first day on this unit I used 30# I am up to 190#, no typo, 190#. How can this be?
Is it safe to work out with weights (using common sense) If I do have LGMD?
Sorry for being long winded....
I am a fighter.... I will not give up and work my butt off to stay up right!
Give me your thoughts, I will read them all and thank you for them.
I have a combination of LGMD and FHSMD. (Great to be special for 2 to join my body). I'm a 40 year old white female and I've had MD for 21 years now.
Up until the age of about 30 I could still manage stairs, side paths etc. using a crutch. I've had mild pain during the years but the last 4 years I've deteriorated at a speed.
I had a scapula fusion done many years ago (to look nice) but it was a great flop and over the years my left arm became so weak that I cannot lift anything heavier than a feather with this arm
I cannot walk properly anymore and mostly use a wheelchair. I can still walk (only in my own house) but without shoes because my toes helps me to "grip" the floor when I do loose a bit of balance.
Now my pain scale. My arms start burning when I over use them like washing dishes or cooking. I also get a kind of numb feeling the same as when your leg “falls asleep” (sometimes this is to my benefit that my boys has no choice but to wash dishes for me)
My back is the worse. If I stand to long my back arches to a degree that the pain become unbearable and I have to sit. It is also like a burning sensation or a stabbing feeling.
My upper legs also feels numb when I stand too long and then that changes to a burning feeling.
I use to get muscle spasms in my legs if I overuse them that he muscles contract so badly it looks like an epileptic fit but that passed the more my MD progressed.
Now this is starting to look like a book I’m writing but the conclusion is that I think maybe all MD sufferers might have different kinds of pain with the same MD
My Muscular Dystrophy is still of unknown etiology, but at one point it was believed I have Limb-Girdle. The current "theory" is that I have a Mitochondrial Myopathy AND Myasthenic Syndrome.
Pain? You bet your sweet life I have it. My pain is mostly in my legs, probably because I was/continue to be somewhat stubborn about moving around when I should rest. I would be in tears at night from the aching in my legs.
I take 400 mg Ibuprofen, 600mg Gabapentin and 100mg Tramadol before bed, with additional Gabapentin during the day. This is EVERY day now, just to keep the leg aching at bay. I have started using my wheelchair full time, only moving around/walking to transfer to the bathroom, shower, get dressed and for things I MUST do (like get my lunch since I'm alone at lunch). If I over do it, I am allowed to take 50-100mg additional Tramadol, but taking that during the day just makes me sleepy, so I try to endure any additional pain rather than take the meds.
I was recently told that they think I have Limb Girdle MD. I am still waiting to go back in February to find out for sure but my symptoms are very similar to Mandy's. I am in my early 30s and up to about the last year or two I was able to climb stairs. Now I can walk up and down stairs but it is painful and the stairs need to have railing otherwise I am not able to climb them. I also use a cane when I walk to help with the pain and stability because my balance has gotten extremely bad.
I have a stabbing pain on my right low back when I walk and I can't stand for too long either. It is also a stabbing pain but can be sort of numbing. I can still lift my arms but I cannot lift anything above my chest and my arms do get that burning sensation that Mandy mentioned. My legs get that burning sensation as well. It is also difficult for me to grab things but I was told I have arthritis so it could be from that as well. What causes me more difficulty to lift are my legs. I have tried to do at least some sort of sitting exercises and when I lift my right leg especially it feels very heavy. But the pains I get are usually stabbing, burning sensations. Sometimes numb like.
Hope things continue to go well for you in the gym!