I was diagnosed with severe PLMD in 2018 (although, my symptoms have been present for as long as I can remember.)
I was diagnosed by a neurological sleep specialist and have followed EVERY recommendation. I take Gabapentin and iron supplements (my iron levels are not low, but was told elevated levels could help). I follow his sleep hygiene schedule, rarely (I mean rarely) drink coffee or consume caffeine and have almost completely eliminated chocolate (I admit that I have a sweet tooth, but am rather disciplined!) Also, I take magnesium before bed because my GP thought it would help.
However, I don't feel any more rested.
The fatigue and exhaustion is unbearable. The headaches occur almost daily and at times, I get lightheaded. When I push myself, eventually my heart starts to race (even while sitting) and I find it hard to get enough oxygen. I get very warm and ugh...sweaty...when I'm lightly active (even walking less than five minutes) too. And, any exercise, no matter how little, exhausts me further. At times, it seems that I need two days to recover. Is anyone experiencing these symptoms?
Anytime I meet with the sleep specialist for a follow-up, he tells me that my symptoms are caused by my shift work. But, I had these same symptoms when I had regular nine to five (cue Dolly song) hours.
I can't help but think that these symptoms are an indication of another problem (or maybe we're not treating the PLMD correctly?) However, my blood tests always come back normal and although I was diagnosed with a bundle branch block, have been told that would not cause my symptoms.
I need a bit of guidance. This has impacted every aspect of my life. I stopped exercising because I can't function afterwards, I've had to pause classes and volunteer work, I've missed team sport games, cancelled social events and worst of all, have missed so much work that it's impacting my reputation (not to mention any future employment opportunities).
I'm grasping at straws to find a solution. However, first I need to know the actual problem.
My neurologist thinks so. Eeg fi e, mri good, no plaques. Says unlikely seizures. Sleep study next but as people above said, my jerks don't happen in sleep. Anytime I am fatigued, lo g drives in passenger seat, had whole body myoclonic jerks after my first cardioversion. Noted by ER DOC. Started with legs, then arms hen involuntary situps. I've had them since about age 14, am 63 now and they seem to be getting worse. So very tired of being told it's RLS...IT'S NOT. Symptoms don't match. I believe it has somethi.g to do with my body's electrical system. I also have AFIB, familial. 2 ablations, now just medication. Luckily not in permanent AFIByet.
Connect
Connect
Like
Helpful
Hug
I was diagnosed with severe PLMD in 2018 (although, my symptoms have been present for as long as I can remember.)
I was diagnosed by a neurological sleep specialist and have followed EVERY recommendation. I take Gabapentin and iron supplements (my iron levels are not low, but was told elevated levels could help). I follow his sleep hygiene schedule, rarely (I mean rarely) drink coffee or consume caffeine and have almost completely eliminated chocolate (I admit that I have a sweet tooth, but am rather disciplined!) Also, I take magnesium before bed because my GP thought it would help.
However, I don't feel any more rested.
The fatigue and exhaustion is unbearable. The headaches occur almost daily and at times, I get lightheaded. When I push myself, eventually my heart starts to race (even while sitting) and I find it hard to get enough oxygen. I get very warm and ugh...sweaty...when I'm lightly active (even walking less than five minutes) too. And, any exercise, no matter how little, exhausts me further. At times, it seems that I need two days to recover. Is anyone experiencing these symptoms?
Anytime I meet with the sleep specialist for a follow-up, he tells me that my symptoms are caused by my shift work. But, I had these same symptoms when I had regular nine to five (cue Dolly song) hours.
I can't help but think that these symptoms are an indication of another problem (or maybe we're not treating the PLMD correctly?) However, my blood tests always come back normal and although I was diagnosed with a bundle branch block, have been told that would not cause my symptoms.
I need a bit of guidance. This has impacted every aspect of my life. I stopped exercising because I can't function afterwards, I've had to pause classes and volunteer work, I've missed team sport games, cancelled social events and worst of all, have missed so much work that it's impacting my reputation (not to mention any future employment opportunities).
I'm grasping at straws to find a solution. However, first I need to know the actual problem.
Please help!
My neurologist thinks so. Eeg fi e, mri good, no plaques. Says unlikely seizures. Sleep study next but as people above said, my jerks don't happen in sleep. Anytime I am fatigued, lo g drives in passenger seat, had whole body myoclonic jerks after my first cardioversion. Noted by ER DOC. Started with legs, then arms hen involuntary situps. I've had them since about age 14, am 63 now and they seem to be getting worse. So very tired of being told it's RLS...IT'S NOT. Symptoms don't match. I believe it has somethi.g to do with my body's electrical system. I also have AFIB, familial. 2 ablations, now just medication. Luckily not in permanent AFIByet.