Pain has become a much bigger symptom for me than the former agitation. In fact, if i take nothing at bedtime, i don't usually have terrible agitation and electricity like i did for 45 years. My major symptom now is pain in the back and legs...it starts up about 10:30pm and lasts until around 4am. It's intense! I have a stash of mirapex and took one a few nights ago, just to prove to myself that this really is RLS and sure enough, it worked, because i have not used it in so long.
Meantime, does anyone besides me find that a weather front moving in makes everything worse? For me, it is considerably worse starting about 36 hours before the rain starts...during the rain it is hideous...my legs simply throb. I have a lot of fasciculations in the calves and thighs. And then wide-spread pain throughout my body from all the clenching. Thunderstorms and tornado watches are even worse! The other time it is really bad is full moon....
Anyone else noticing these exacerbations?
Thanks,
J
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I don't get pain but, when my RLS wasn't fully controlled, it did worsen significantly at a full moon.My MS symptoms (pain, walking, tremors, spasms) all worsen in humidity, either rainy weather or hot humid weather.
thanks for your insights jools....gosh we are all in a pickle. I have been reading widely today....this condition is torture. I know there are other serious conditions people live with, but this one is so misunderstood by the average doctor. Take care, ok?
According to Google this says something like "Hello, I started having muscle pain above my knees, I thought it was also sc, but when I take Apex World, the pain does not go away"?
The Apex that I know of is a benzodiazepine used to treat anxiety: presumably this is not what you're referring to?
hi there. Yep, I am getting increasing amounts of pain in my legs. I am switching around Suboxone and oxycodone to see if it’s a result of the meds. Not done with my experiment yet, but that leg pain best described as thick and hard is no joke.
Yes, pain has become a major problem with my RLS. The pain and restlessness are centred in the same place, somewhere around or beneath my right sacroiliac joint. I have the feeling that I could almost ‘pick out’ the sore spot and I’d be fine. Weirdly, like you, my symptoms time themselves - the whole lot kicks off about 11.30 - 12.00 midnight and doesn’t stop until around 2am no matter what I do. Isn’t that weird? How do our bodies know the time so well?
you might find this talk helpful. It describes the classic symptoms and i know that i have all of them. It's from a few years ago, so this dr is still recommending DA as first line of treatment. And he mispronounces "parkinsons", which i found disconcerting. However, i still found the lecture, on the whole, to be helpful to me in understanding my condition.
and yes, about the SI joint..mine is the same, only it also spreads to the whole sacrum. I have a number of physical strategies that sometimes work. But most often it is a matter of enduring....10:30pm to about 4am.
Consider seeing a physical therapist. Hip muscles can constrict the sciatic nerve and cause pain down the back of one leg. It might be worse at night because you're laying on it, and then the whole mess triggers RLS.
thank you..i do see a physical therapist weekly. And i do agree that tight muscles contribute and play their role. The problem with chronic intense pain, is that it creates a chronic pattern of clenching that exacerbates it all...it's a vicious cycle isn't it?
no. For the last 6 years, i have spent about 6 months of each year seeing a PT...i have tried various experts around my area and they all have their doctorate in PT. Each has had a different approach but nothing has helped at all. And i do mean different! One said: no more extension. This current one says no flexion. Last year's model wanted me to do deep stretching and massage which made everything significantly worse. I am a former nurse and also former yoga therapist...so i pretty much have all these maneuvers down pat...but nope. I belief that the years of pain have created fibromyalgia in me and any excess activity, stretching, walking, muscle strengthening..all make the symptoms worse. I just try to do a fine balancing act of keeping my body strong and moving..but not overdoing it! I appreciate your taking an interest in "my case"! 😎
Thanks for your response. I've got a similar issue and have begun to wonder if therapy is helping or harming. The therapist is telling me to avoid the leg machines in the gym, but that's exactly why I joined the gym in the first place. I asked her how many patients fit into the textbook model that she was taught in school, and her answer was "10%." Not encouraging! But surely your years of activity has increased your overall strength, and maybe fibromyalgia was caused by genetics rather than activity.
i wish!! What is scary is how the scale just keeps creeping up. But 5lbs on the scale looks more like 15 on my body, so that tells me i am losing muscle and bone..and i'm over 70, so that is a problem for sure... here is a good podcast from the cleveland clinic about the genetic form of RLS...it's a bit dated: 2019, and the doc is still recommending DA, but the info on the condition is helpful. He mis-pronounces parkinson's which i found distracting..but it's still informative.
My RLS definitely gets worse when the weather gets warmer, though so far Gabapentin (on a low dose and have only been taking it for a couple of weeks) seems to have a positive effect.
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