Metabolic Myopathies

Question: Is anyone familiar with Fibromyalgia? I've been diagnosed with severe Fibromyalgia but my primary diagnosis is Metabolic Myopathy. The problem that I have is this: They treat Fibro with muscle relaxers, which I am not able to take because of the Myopathy. This affects my whole life. I've been trying anything and everything but getting discouraged. Any info would be greatly appreciated!

Answer: speak to your dr about some other meds. i was put on zoloft to regulate the seratonin in my system really helped alot.

Question: Just don't know what to do....? I have Fibromyalgia and Metabolic Myopathy (a muscle weakness condition). I have been diagnosed 10 years ago. I have to force myself everyday to get out of bed. But I refuse to give in to this condition. I think I really suffer more from the Fibro than the myopathy. I can't really take anything other than Neurotin for the pain. Anything else will affect my myopathy. So I struggle everyday, as I'm sure everyone with this condition does. My kids are 15&17. But I think the problem is when I'm really down and need help from everyone, they just think I'll do it all on my own like I usually do. I tell them I'm having a really bad day (as they can tell by my moods). But now my hubby just doesn't seem to listen to me either, he just expects me to keep carrying on like I always do. But I can't. I am so run down I can't stand it. I tell them I can't do anything, but they still ask, and then I feel guilty if I tell them no. Any suggestions? Thank you for reading this ;)

Answer: You HAVE TO take care of you first. I KNOW from experience that it is hard to put yourself first and that you can't say no to the family that has depended on you for so long but what are they going to do if you were gone? They would have to take care of themselves then wouldn't they? You need to have a family meeting and put your foot down and tell them you are not in good health and that they need to start doing their share around the house. If you keep on doing what they say to do, they will keep telling you what to do. Your children are old enough to do their share and I know your husband can do more too. Taking the Neurontin is enough to bring you down. I had to get something else to take. I couldn't handle it. I now take Gabapentin which is the same drug but it is a tiny pill instead of the big capsules. I take it for back pain from 6 bulging disc. Good luck to you and God bless.

Question: Help for my Son....? My Son is 15 yrs old. He's 5' and weighs 76 lbs. This is all due to his medical conditions: Eosinophilic Esophogitis, Severe G.E.R.D. Lactose Intolerant Metabolic Myopathy (muscle weakness) with a Carnitine Defiency. Anorexia (due to not being able to eat right) His stomach takes 3 times longer to empty than normal. He has been like this all his life. But he is not growing properly. They said he's 1 1/2 yrs behind in growth - when they did a bone scan. He gets extremely weak and will just stay in bed for 48 hrs. Not being able to do anything. Every year he would try to go to school. It got to be too much for him and was always placed on home bound. Now we are enrolling him for Cyber School so he can just do it all from home. Hoping to eliminate his stress as he always worried about feeling good enough to get to school. Doctors have tried steroids, medicines to increase his appetite (which doesn't help due to his muscles being weak and not working properly). The last resort will be a feeding tube to try to get him the nutrients he needs. I DO NOT want this for him. It is breaking my heart seeing him in bed sometimes. He does good, will play with friends, and then it puts him in bed for 2 days. I'm wondering if there would be a good vitamin I could give him, that will help with his nutrients? He does drink Boost (similar to Ensure), 4 cans a day. That is the only way he has grown at all. His myopathy is from the family. I have it and so does 1 of my older brothers. We feel it came from our Mother, but she passed away after child birth with me. I have had 2 muscle biopsy's done to try to get some answers on what they can do for our problems. Both times it has come up inconclusive. We just have to live with it. They know what the body is doing but can't do anything to correct it. Any ideas on a good vitamin for my son? Thank you for taking the time to read my story. Sometimes good to get it out :) Yes, he has an Endocrinologist, Gastroenterologist, Neurologist, and our Family Physician. But thanks for your thoughts.

Answer: Wow that is alot to deal with and I hope this helps even a little. My son has a neuro-muscular disorder. Congenital myopathy possibly in the mitchondrial myopathies. His doctors still dont know which one. But it is in the family of metabolic myopathy. His neurologist put him on Co Enzyme Q10. It has really helped my son. My son is 9 and takes 200mg daily, sometimes up to 400mg if he has been more active. This supplement has made my son much more active better energy levels. It truly has worked wonders for him. Ask his neurologist about it. They have been doing trials and studies with co enzyme for quite awhile especially with Duchenes patients. I also wonder is he on a cartinine supplement? Digestive enzymes, so his stomach doesnt have to work so hard?? I hope this info helps I know how hard it is when your child is ill. And I hope you will be blessed with an improvement in your sons condition as I was. Its not a cure but for us any improvement is a Good Day!!! My Best Wishes for You and your Son.