I'm so tired!!! Such a simple complaint that has taken over my life. Over 18 months of mind numbing, life-disturbing fatigue. I am so tired I literally can't see straight, am clumsy, and frequently let my husband do all the driving- which I hate because I hate not driving.
I've had the thyroid tests, was on synthroid for low TSH and low FT4.... no other signs of hypopituitary so the doctor stopped the synthroid. I was tired on synthroid, continue to be tired not taking synthroid. Most labs are normal.... mag chronically low despite replacement. Hgb/hct low normal to high normal.... 12-16 for hgb. Low ferritin.... I suffered through iron for over half a year and my ferritin went from 39 to 40. WBC normal, occasional low lymphocytes, but just a point or two under normal range. Normal UA, normal 24hr UA except I drink alot, so I pee alot. Negative diabetes insipidus. Negative ANA, DS-ANA, and rheumatoid factor. Negative celiac. Normal head CT. I stopped working third shift- still tired. I take multivitimins, mag, b-complex and I've eaten a disgustingly healthy diet for years- even before the fatigue.... I'm still tired. In the past year I've gained weight despite said diet..... so now I'm tired AND fat. I have had depression- years ago.... I've not been depressed in a decade but this is going to cause depression if I don't start to have enough energy.
So... I saw a neurologist- my epworth scale was over 20. I've had restless legs/ PLMD my whole life. No snoring or sleep apnea-like symptoms per family and husband. I started taking Provigil a couple of months ago.... now I'm ok for a few hours and then back to the same old fatigue.
Now I'm scheduled for a sleep study, and more labs.... sed rate, EBV titer, and lyme just to complete the million-dollar workup. I'm frustrated, and would be angry except I don't have the energy to sustain the effort to be angry, lol.
SO... my question.....
Has anyone had RLS/PLMD... had it their whole life.... and suddenly started having problems? If my sleep study confirms the RLS, and I start mirapex or something similiar... please.... someone tell me it cured them. I love my job, my husband, and my kids.... I'm so afraid the fatigue is going to interfere with the poeple and things I love.
I have RLS/PLMD. Took Mirapex for several years, now on Requip. The meds have not cured me, but they do give me significant periods of time where I can get decent sleep and feel more rested. I also have sleep apnea, but the sleep studies didn't pick it up for several years because my legs moved so often I rarely slept enough for it to show up.
The meds do have side effects in some, so do your homework.
I think the sleep study is a good idea. It will tell you how many movements you have and how often they disturb your sleep stages.
When I read your post, I felt as though you wrote my situation almost verbatim. So tired that I'm not functioning normally (clumsy, etc.), being treated for hypothyroid but still feeling exhausted, low iron for a while, but still tired after treatment, neg diabetes, neg RA factor however positive for MCTD, neg celiac, gained weight despite good diet & supplements, Epworth scale = 20, had RLS my whole life with no snoring or sleep apnea and suddenly at age 42 I feel like someone is drugging me. I also took Provigil and was OK for a couple hours then back to complete exhaustion. After ditching Provigil, my doctor gave me amphetamines, and I took naps right through them.
I had a sleep study test done and got results yesterday. Before the test I thought this is just another test that we can get out of the way and move on to the real deal because I think I sleep OK, but turns out that I have severe PLMD. My PCP wants to send me to a pulmonologist??? Don't have sleep apnea... Anyway, if I take a medication for this I'll keep you posted. I heard Requip has a LOT of side effects, such as...dizziness, faintness, nausea, vomiting, unusual fatigue or drowsiness, indigestion, sweating, increased susceptibility to viral infection, headache. So I probably won't be experimenting with that one although it's supposed to be the first-line of treatment for RLS. The other most promising drug seems to be gabapentin
(Neurontin), but I am already taking Lyrica for Fibromyalgia and Lyrica is like gabapentin as an anti-seizure drug. And since I''m already taking it, it clearly isn't working for the PLMD. Shoot! Is anyone taking something (even alternative) that actually works?! Thanks!
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