Restless Legs Syndrome

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Restless Legs Syndrome
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    My Experience With Restless Legs Syndrome

    If you have Restless Legs Syndrome, or RLS for short, you know what a debilitating disease it can be. Long nights without sleep, difficulty doing simple tasks such as walking up and down stairs, the endless uncomfortable sensation that worms are crawling in my legs… the name is cruelly misleading. Restless. That’s what I feel when the toddler on the bus seat next to me pokes me for the third time.

    I’ve had RLS for approximately 11 years. The first few years it was mild and I didn’t think much of it. My father has it too, and he never seemed particularly bothered. However, my diagnosis now falls in the ‘severe’ category. I have symptoms 24/7. I’m only in my 30’s. Since RLS can worsen over time, the likelihood of me making it to 50 without further decline… well, that’s pretty unlikely.

    I have tried a number of pharmaceutical drugs, over-the-counter drugs, herbal remedies, and home remedies in the last decade. The most popular class of drugs for this disease, dopamine agonists, actually cause a worsening of symptoms over time. (This is called augmentation.) Yet they are prescribed by thousands of uneducated providers every day. Hot baths, melatonin, leg massages, iron tablets, epsom salts, you name it, I’ve tried it.

    Then I moved to a state with medical marijuana. I contacted a doctor after reading someone’s story online where they swore this was the secret I had been looking for. The doctor told me he had a number of RLS patients and it did indeed help them. He wrote me the prescription and I got the medical card. (This costs a total of $250 since it is not covered by insurance.) I went to the dispensary where the helpful people told me what forms and strains would be best for my condition, after giving them a bit of insight into what RLS actually is and what causes it.

    Prior to this, I had been running on 2 hours of sleep a night for so long I was truly losing my mind. I felt 5 seconds away from a psychotic break. I couldn’t imagine living the rest of my life this way. I was starting to seriously wonder what it would be like if I chopped my legs off.

    But then I slept. Longer and deeper than I had in years. I felt like a person again. With this medicine, I am able to consistently get at least 6–8 hours of quality sleep a night. This was a drastic improvement that allowed me to enjoy my life again.

    #RestlessLegsSyndrome needs to be taken more seriously in the medical community. There is a reason that having this condition drastically increases your risk for depression. It is a special type of misery that only sufferers can understand. We also understand that treatment is not one size fits all. What works for me, might not work for someone else. That makes it all the more difficult to deal with.


    RLS exhaustion

    My spoons were all spent by the time I got home from work. By 7 pm, I was in bed, icing my head and spine. First in area where there was pain-my temple, my cervical spine, lumbar region and hips. I did this hoping the body jerking, twitching would be less. At first it causes more jerking, but I am finally able to sleep. I slept on and off from 7-9. Turned on some relaxing music for the night and then after 9 pm I was able to stayed asleep until 3:30.
    Now I have been wide awake for an hour. Took my usual trip to the bathroom at 3:30 am. My EDS flairs, my right knee, left shoulder, lower back and left hip is in pain. I lay on my back, support my neck with a cervical pillow, prop my knees, surround myself in pillows and hope to sleep until 6:30, hoping my body does not jerk.
    The medication for RLS sedates me, but doesn't stop the jerking and tossing and turning. I don't have an iron or B vitamin deficency. Are there any natural solutions to RLS? Anything that has worked for you? #RestlessLegsSyndrome #EhlersDanlosSyndrome #ChronicPain

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    Barely asleep barely awake # tired #Insomnia #delayedsleepphase #Fibromyalgia #inflammatoryjointdisease #RestlessLegsSyndrome

    Anyone else go through this on a regular basis ?


    ANOTHER UPDATE... neurology appointment today #TardiveDyskinesia #TicDisorders #RestlessLegsSyndrome

    I hope this message finds you all well... and if it doesn't... sending good vibes your way!

    I just got back from a neurology appointment. It turns out I was misdiagnosed with Restless Legs Syndrome (I do not have it, but have been taking unnecessary medication for it) but I DO have a childhood tic disorder that is mostly in remission along with the more bothersome Tardive Dyskinesia.

    TD, for those that don't know, is caused by taking antipsychotic medications for long periods of time. It's relatively rare so if you're on antipsychotics please do not worry-- but I seem to be having symptoms of it.

    Luckily my TD is relatively mild but still bothersome regardless.... I am grateful to have found some answers and that I will be coming off the RLS medication. As for the TD, we are waiting for now on whether or not to add medication for that.

    Does anyone else here have Tardive Dyskinesia?

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    Deep worthlessness most of my life #depression #ptsd #hypotension #chronicpelvicpain #chronicpain #childabuse #metoo #sexualabusesurvivors #endometri

    I was diagnosed with severe depression at 16. I took myself to a GP at 15 yrs old as I knew something was wrong. I didn’t understand how are knew something wasn’t right my thoughts were not good.
    Unfortunately I was told by my parents I was over dramatic / being silly / seeking attention when I did build the courage to talk about how I actually felt. ( I’m realllt thankful to that doctor as I learnt It wasn’t my ‘ fault ‘ these feelings.

    I was a good student skipped a
    Year level , taught dancing after school and competed it brought me joy. I Paid for my own school trips, my dance classes and food even . I left school early due to my home situation, working many jobs along the way to look aftermyself and rented a room. (Still under 18) had to quit dancing and focus on basic survival - roof over my head and food in the tummy )
    I became sick in 2019 - I worked my way up through collections temp to a full time employee as assistant to the sales manager corporate bank team. I didn’t know I wouldn’t get to return to to work, a proper goodbye to my mentor and colleagues. I peaked and didn’t know it. At 19.

    Since then the deep Lonelyness has gotten worse year by year. I’m 32 now.
    I’m not sure what I can do to help myself I feel like I’m not treading water more drowning.

    I know I feel unloved . Im still learning self love. I’ve lost so many ppl over the years my 20s I felt it as 95% of the people in my life left. I understand why doesn’t make it hurt any less . 13 years of pain and trying everything the doctors suggested no matter my reservations…….
    I’m forced to do things that make me more ill as there is no one to turn to. I faint at home bymyself and wake up on the ground it’s scary.
    Before covid I had finally got my name down and arranged some help in the way of - career few hours a week, transportation or taxis paid , and to get out of the house with the carer . It all shut down tho , I understand it was no longer on top the list so to speak….. global crisis covid 19.
    I feel like I’m driving my body into the ground. I have a broken shoulder ( humerus ) right arm. how bad does it need to get before it’s too much?? Much appreciated any advice ( I live in Vic , Australia ) Thankyou
    Thankyou for reading 📖 this far. It has been therapeutic and help changed my #badthoughts I was having tonight.
    Good vibes and happiness your way mighty warriors 💗🙏🏼 good morning or good night depending where you are in our beautiful world x
    #cannabiscorner #writingthroughit #restlesslegssyndrome #suicidalthoughts #arttherapy #purpose #mentalabuse #medicarecbdrhcoil #medicareaustralia #stopprofittingmedicinalcannabis #nomoneynotreatment #arttherapy #cptsd

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    Happy Friday! #CheckInWithMe How are we doing?

    How is everybody doing? Please let me know! I like to hear from The Mighty community.

    I am doing well so far today; I have a fun weekend ahead and feel I am doing the best I have in a long while with my #MentalHealth as well as coping with #Trauma and invisible #Disability

    Sending good vibes your way if you're reading this! (also enjoy this rainbow I saw last weekend!!!!)

    #GeneralizedAnxietyDisorder #Bipolar1Disorder #ObsessiveCompulsiveDisorder #Dermatillomania #ADHD #LearningDisabilities #IrritableBowelSyndromeIBS #RestlessLegsSyndrome #AuditoryProcessingDisorder #TicDisorders #EatingDisorders #GenderDysphoria #BorderlinePersonalityDisorder #PTSD

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    Cookie time! #CheckInWithMe

    How’s your Friday night going? I’ve been exhausted and feeling a little low, but tonight was a good night with my sister. Check out these cookies we got!
    #Bipolar1Disorder #Anxiety #ObsessiveCompulsiveDisorder #ComplexPosttraumaticStressDisorder #BorderlinePersonalityDisorder #ADHD #LearningDisabilities #RestlessLegsSyndrome #IrritableBowelSyndromeIBS #TouretteSyndrome #EatingDisorders

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    My health is getting in the way of life #Scleroderma #RestlessLegsSyndrome #Fibromyalgia #RaynaudsDisease #sickandtiredofbeingsickand tired.

    My thoughts are that this sucks. Health is getting in the way. My heart is ok according to the cardiologist. But there's something definitely wrong and his opinion is that it's my #Scleroderma . Tried to make dinner and lil to med spasms started. My husband had to totally take over. I feel bad because he was relaxing from taking care of the kids after getting home from work and all I did was sleep with a beagle on my lap. He actually senses when I am not doing good. Especially these spasms. But has no official service dog training. Sometimes these spasms remind me of contractions as they build...peak...and then come down. Pain levels vary. But usually at a 8-10 during the peak. I can feel it build...peak...and let go. Sets in my ankles for a minute sometimes. But is always painful. I eat bananas and drink the electrolyte propel. So it's not that. Nothing is broken. Last time I went to the ER cause of it they didn't help. They gave me Norco but I was still in pain and having the spasms. Plus with all the meds I'm on that are supposed to help with spasms....aren't. Kinda depressing #Depression 😕 hating life right now. But what can I do but continue the best I can. I have people and animals to live for.

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    No bed too big? Or cozy little twin.

    I have to have room to stretch and move around at night, especially when restless leg rears it’s head and fibromyalgia is in full flare. My hubby and I sleep in a Queen size bed with a 1 inch thick mattress topper. It’s very comfy and plenty of room to move around. But don’t get me wrong, I wouldn’t complain if somebody offered me a King size for free! 🤩 What size bed is just right for you? #ChronicIllness #ChronicDepression #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicPain #BackPain #Pain #Gastroparesis #PeripheralNeuropathy #Disability #RestlessLegsSyndrome #TheMighty #GastrointestinalDiscomfort #ChronicDepression #DistractMe #Anxiety