Restless Legs Syndrome

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Restless Legs Syndrome
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Restless leg syndrome increased in severity

Has anyone taken mirapex for RLS? Does it even help ? What are the side effects you experienced? Pls let me know as I just started on it idk how I feel about it # ##CheckInWithMe #RestlessLegsSyndrome

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"It's Okay"

I was listening to music today and this song came up by Imagine Dragons. I've been having a very rough time feeling unmotivated and have been down on myself. This song really helped me to put in perspective that we all have bad doesn't mean we give up, it means we allow them to happen then get back to where we are at peace again. Here is a portion of the lyrics:

"....It's okay to be not okay
It's just fine to be out of your mind
Breathe in deep, just a day at a time
'Cause it's okay to be out of your mind

I don't want this body, I don't want this voice
I don't want to be here, but I guess I have no choice
Just let me live my truth, that's all I wanna do
Baby, you're not broken, just a little bit confused.

My birthday is Saturday and I am feeling a bit sad that due to all of my illnesses, my life hasn't been what I thought it would be. I've lost out on so much. And then I give myself a shake and remember everything I have to be thankful for. On Saturday I need to celebrate me, who I am now, not who I was, or the things I used to be able to do. I hope I can wake up and tell myself "Wow! I made it another year. Way to go!" And then face the day with a smile and a sense of adventure for the upcoming year. I hopefully can say " I'm okay!" #Fibromyalgia #BipolarII #Retinal Vein Occlusion #Pre -Parkisons #RestlessLegsSyndrome #OccipitalNeuralgia #ChronicDepression #intractablechronicmigrains

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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.

My Experience with Restless Legs Syndrome

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…

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


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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