I just wanted to find out if anyone can relate to my symptoms.
About 13 months ago, I received an infusion of iron sucrose.
Before then, I was dealing with RLS 24/7. I felt like I was vibrating all the time, sleep was horrible. I stopped DA's cold turkey, because... about 6 months? earlier.
I did oral supplement during the year and I just got tested yesterday. The results may take awhile I am told.
So, how am I doing now?
The feeling of being plugged into an electrical outlet is still there every night when I get into bed. The intensity is way down. I know that if I let the feelings run, my RLS can get bad. So I try to breath and work through it. Yes, I tap and fidget almost every night for at least 10 to 20 minutes. Some nights, and lately more frequently I have to get out of bed.
First, I also get involuntary jerks now. Sure of course in my legs, my kicks and stuff and mostly quick and really fast. I get quick jerks in my shoulders and arms. However, I also get jerks in my abdomen that are intense, completely out of nowhere and completely involuntary. I will be laying in bed with no RLS symptoms. Falling asleep quite nicely and WHAM. If I am laying on my side, I will do an on my side sit up, without warning and instantaneously. If I am laying on my back, which I no longer do, I will do a sit up with out bracing my neck, this is NOT a good thing.
Second, sometimes these jerks become intense contractions. Not cramps but contractions. This is really hard to explain, because it is hard for me to understand. It is like the default is to contract, i have to tell my stomach to stop contracting and even then it is difficult. These stomach contractions more than anything has gotten me out of bed. The contractions even hurt physically a couple nights ago I walked around for 20 minutes for the pain to go away, it didn't. The next morning I was still a bit sore. Again, this is not a cramp. Trust me, I know cramps. Cramps are much more painful and I have no control over them.
Finally, does anyone feel the electricity/buzzing/vibrating stop. Almost every night. I have to start on my own. Sometimes I go to the hard floor with a blanket, it seems to help. Anyway, I feel the buzzing stop, then I can hug my wife. It started with the Gabapentin. At first it was a strongly feeling of flushing or washing in my hands and extremities. I then knew the rest of the night would be ok, unless there was a loud noise or I had to get out of bed. The feeling still happens but it less defined. I just have a feeling it is gone. Not 100% accurate, but it is significantly less.
So does anyone get jerks, contractions AND feel RLS turn off or at least turn down?
BTW, I know a good Neurologist can help. Finding a good Neurologist has been difficult.