Not Alone

When you're battling a chronic illness it's very important to learn that you're not alone. I recently joined a Myopathy Support Group online. Many people in the world struggle just like I do with something not so cut and dry to diagnose and that has no real treatment. 

Here's a sample of what I found relatable and helpful when it comes to myopathy.

"I’m similar to you, acquired myopathy due to steroids and/or cyclosporine for another medical condition but other extras sprinkled on top to keep life interesting"

"After reading your story you have my admiration. Mine seems to be through having RA. I'm in the same situation concerning work.. still waiting for some sort of help off the medical profession."

"My doc claims mitochondrial also and put me on coq10. Now i am a bit freaked. My ins refuses to pay for dna testing. What now?"

"Lyrica is my life saver as well! No idea what I have either; many strange, wrong diagnoses. I've come to accept that I'll never know. I don't care anymore."

"I’m going through a similar situation but doctors keep passing me around. At first I had mitochondrial myopathy. Then it’s fibromyalgia. Then it’s all three. Mitochondrial myopathy, fibromyalgia and ddd with herniated discs and spine tumors with stenosis."

"I've first was diagnosed with myopathy in 2012, the doctors couldn't quite determined which kind of myopathy i have, i started going to different doctors and it really got a toll from me and i felt really down... for such an optimistic person like me being down was the worst thing i could think of, so i decided to just stop! I said to myself if i get into a sick person state of mind and let my disease define me that's a terrible situation, worse than the actual disease...so i lived my life regularly on some kind of deny, some kind of a lie i tell myself...for about 5 years... but with recent changes in my life and in my mind, now i feel strong enough to deal with anything life will throw at me, and do it with a smile on my face and thankful for the things i have in my life, not thinking about what i don't...  sooo, bottom line... this is the tip of my story... nice to meet you all, I'm taking my genetic tests hopefully really soon...if you have any tips for me regarding life style nutrition or tips in general i'd love to hear them."

"...So I'm ready to just be done. I'd like to get back to my life and as of October 6th I'll only be seeing my docs for yearly progression checks and that's just fine with me. It was just getting so daunting to try to live my life in between doctor visits so I'm just going to NOT do it anymore."

"So if your dna testing came back unrevealing, does that necessarily mean you don’t have myopathy?"

"OK I have been posting about food. And at this point in time I am taking guesses as I cant afford the DNA testing. But my doc suspects its animal proteins..."

"Hi. How does everyone cope with the leg muscle pain. Can't believe how bad it gets... The pain can cause you to question your sanity"

"After 41 years and getting a diagnosis of what was causing my muscle weakness (myopathy); my doctor told me there’s nothing he could do for me. He did explain that my body doesn’t process ATP, the final breakdown of carbohydrates into all the cells in your body. Also, I had severe exercise intolerance, no endurance or energy and extreme fatigue."

"Anybody see the Netflix show Diagnosis? First episode was a girl with Myopathy. I knew it almost immediately it was a metobolic myopathy. No dr had ever mentioned it or offered genetic testing... NOTHING. Breaks my heart people with rare disorders have to get picked for a show for help. I have had to do my own work and know more than most drs about all these disorders now. That is just sad to me. I know they can't know every disorder off the top of their heads, but she suffered for years and years... Like most of us, I suppose."

"I was originally referred to a neurologist because my gp wanted me to have a muscle biopsy. I had been having severe muscle cramping and severe leg and arm weakness...I don’t know what to do and I almost feel hopeless."

"out with family but legs feel weak have hard time walking even with sitting for a but feel like legs could give way (but some how they keep me up)"

"-it never stops going to appointments, I like my weekends, I take them seriously, September 3rd I see the surgeon to schedule muscle biopsy but my neuromuscular doctor also wants me to see a dietician, i also see 11 other doctors for other issues but I'm exhausted, you all must be exhausted, I am.."

"I've quit chasing answers. I was able to retire on disability. My wife is a teacher and works but I still have kids at home. One in college. I was chasing answers from Ohio then on to University of Michigan, a VA Hospital in Michigan, to John's Hopkins in Maryland and they sent me to a Mitochondrial Specialist at University Hospital in NY City. (there are others) 
I've been miss-diagnosed several times like some of you, ALS, MS, and then Mitochondria Myopathy. I do have Myopathy and Neuropathy confirmed from two different muscle biopsies and other test. I'm a diabetic as well. Whatever I have I quit chasing it. Too much money in medical bills. 
My family doctor and I just treat symptoms. I take coq10, vitamin D, Tramadol, magnesium etc. I've tried many creams and other remedies for muscle pain and cramps. I do feel better than I did 7 years ago but I have to pace myself and plan activities ahead of time.
I have to have my sleep and rest or I won't make it through the day.
I am exercise intolerant and very heat sensitive.
I use a cane for short walking and a scooter or power wheelchair for longer distances.
I'm just sharing so everyone knows your not alone."