Don’t know if this is the right place but thought I’d ask because i need help and NO dr. has been able to help me and I’m going INSANE and can’t function physically or mentally anymore…I feel like I’m not going to make it…
Several months ago, I started getting pains in my legs, like deep pains? Up and down legs, then REAL bad knee/joint pain, (which after 4 months of this now they think is unrelated to the rest of it), it felt like stiffness and weakness a bit…then the twitchingggg which started in one leg and quickly spread to both legs? Mostly lower legs and feet…like twitching BIG TIME, also like ‘popcorn popping’ feeling and bubbling…WHAT IS THIS?? No Dr. had been able to tell me…I’d also had searrring pains in lower legs all around with immense twitching too at same time…and seemed like muscle aches, and almost constant pain all up and down deep, not like cramping then it goes away…all this made it VERY difficult to even WALK all summer and I’ve been almost confined to a chair…and it has like ‘changed’ me, physically and mentally , like I can’t even function physically or mentally…it’s hard to explain but I am not myself how I was even 6 months ago…My a1c has gone up to 10.8 now, but this is also tough because the dr’s said eat more carbs and what u want, just take the insulin…my insulin has worked erratically for years so I never knew what to take…but with this torture going on, my sugars have gone up more like a vicious cycle…
Dr’s threw around fibromyalgia, cramping fasciculation syndrome, and they’re questioning neuropathy? Even though EMG was normal…I need help with this and how to get my sugars down too…anyone ever experience problems like this? I almost don’t even want to wake up anymore 
Your blood sugar is way too high. You need to get that down. You probably have the beginnings of some peripheral neuropathy. If you can get your blood sugar down into the 6s, you will probably feel hugely better. Do not do as the doctor said and eat more carbs. You need to eat fewer carbs and make some more sensible food choices—lean meats, lots of fresh and cooked vegetables. Skip the pasta, bread and cereal. Check your sugar often and make corrections as needed. Try to get a little exercise if you can. It’s a lot, I know. But small changes here and there can do great things.
Best of luck with it.
Did they do a MRI of your back? I had some similar issues with my legs and it turned out I had a cyst sitting on my spinal cord. Leg pain, cramping, aching, numbness, tingling, knee pain, foot pain, muscle weakness in legs. Inflammation will make your blood sugars go up although I never had my A1C go up.
You need to figure out your blood sugars though. It will potentially make everything get worse. And sometimes it helps to see a different Doctor, they might have some other ideas.
Pick up a copy of the Diabetes Solution by Richard Bernstein. If I was struggling this is what I would do.
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Your very high blood sugars are definitely not helping. I second scott about checking out Diabetes Solutions or even the lecture series on Utube - Diabetes University.
Has your thyroid been properly and thoroughly checked? Low thyroid can contribute to both unstable sugar levels and leg pains.
Since I was diagnosed with type 1 diabetes in 1966 and there were no home glucometers until around 20 years later, the first time my A1c was tested in the mid-1980s it was also 10, and the endocrinologist reassured me that most people he was testing were around 12. But I didn’t have the leg symptoms you report, nor did any of the other patients at the Joslin’s Clinic I used to see there during my week’s stay every five years. So hyperglycemia should not produce the symptoms you report as an acute effect, which will either appear or disappear as the blood sugar changes.
Of course, no one can diagnose you at a distance, but from what you report you might have what is called ‘restless legs syndrome’ as a result of diabetic neuropathy, which is produced by a number of long-term factors, including genetics, continuing autoimmunity, and hyperglycemia.
I have had Type 1 Diabetes for almost 25 years. Also, I have had a ton of issues with my joints throughout my body and legs for many years. My A1C has improved a lot over what it use to be but currently is right under 7. I have been able to keep mine around 7 since starting an insulin pump and Dexcom CGM. So I have had more control for almost 10 years now. It can be confusing to figure out things if you have had Diabetes for a while. A lot of doctors see Diabetes and think that is the issue. Well I found out last year that I also have Inflammatory Arthritis (Autoimmune). I have had X-rays done before and nothing showed up until last year. My Neurologist had to rule out a few other possibilities and then mentioned trying to see a Rheumatologist (which I had actually been seeing). I switched to a new Rheumatologist and they finally figured it out. Have you seen a Neurologist or maybe a specialist for your joint pain (Orthopedic or Rheumatologist)? You should probably think about that if you haven’t yet. If you have Type 1 then sometimes you can have other autoimmune diseases.
Also, think about seeing another doctor (Endocrinologist) if they aren’t able to lower your A1C. I actually started seeing a Nurse Practitioner at my Endocrinologist’s office and she was more helpful than the doctor.
