Hello community. This is my first post, and while I have not been officially diagnosed, I am looking for some support. I swear I feel crazy as my family and friends do not understand how this affects me. I remember having an RLS attack while watching Harry Potter and the Order of the Phoenix in the theater, so 2007. I finally talked to my doc and I was prescribed quinine to use as needed and found it quite helpful. I went into a remission period in about 2011. In early 2013 I went to my doctor to discuss some tingling and numbness in my hands and feet, thinking Reynaud's, and he believed I had peripheral neuropathy (the symptoms were different, so I did not associate them with RLS, I also did not know that RLS was a lifetime, progressive illness). I also had low B12 and started on monthly injections which I still do. I also had been dealing with chronic headaches for years, but thought it was stress related from my job. A neurologist appointment and some MRI's later that year revealed nothing, just that I had RLS with no further discussion on it. By then I had constant tingling in my hands, feet, lower legs and arms. Some blood testing for things like lyme disease, and such yielded nothing.. In 2014, I had a second opinion at another neurologist who didn't even discuss RLS with me. By then, the tingling was all over, and constant. It wasn't until I came across a post here that led me to believe RLS was my issue. A sleep study was done in Feb of this year, with that doctor touching on my RLS, but again, nothing except to increase my iron intake (I was low normal) and go off my elavil (amitriptyline) which my regular doctor prescribed for my fatigue (it helped my headaches as well for a bit until I adjusted to the dose). I was waking up on average 22 times per hour in the study. I am now waiting for a second sleep clinic for a referral to someone who has more experience with RLS as my doctor does not. I've been to many websites, including the Southern California one and there is so much info, but I know that it is different for each individual.
I'll list my symptoms as I do believe most are related to RLS and poor sleep quality.
1) Constant tingling all over my body. 2) Wake up with headaches most days, fatigued, tired-like I've run a marathon in my sleep, body aches. 3) Twitching of feet, legs, hands, fingers, sides, worsens as the day progresses, though can be present in the morning. Alcohol does tend to worsen this. If I concentrate, I can stop them, but not for long. 4) Slow speaking. Like what I want to say is in my brain, but the word does not come to the surface, so I pause a lot. 5) Forgetfulness. If I don't write it down, it could be gone. 6) Anxiety and Depression. 7) Difficulty staying asleep as I wake up twitching sometimes, or I become too aware of the tingling. 8) Weight gain, from poor sleep and depression, or I'm just lazy :). 9) Cardio exercise such as jogging increases the tingling for a few hours afterwards. 10) Low tolerance for cold. I get hot and sweat really easily now too.
What I've tried.
Tylenol, Advil, Aleve, Excederin, baths (I can't sit still long enough to enjoy them but they do occasionally help, exercise, magnesium, herbal sleep supplements (helps to get me to sleep, does not mean I stay asleep), ativan which was prescribed for my anxiety but no affect on my RLS symptoms, stopped amytriptyline, increased iron intake, B12 injections, massage, acupuncture. Marijuana will be tried very shortly.
Basically, I just needed to let all of this out. I need people who understand, who can sympathize, and help me. Thank you for reading my journey so far and any help and support is immensely appreciated.