Hi! So I’ve struggled with very bad leg pain for as long as I can remember (probably starting around 5 years old). Based on my symptoms, my doctor recently (as in about 6 months ago) said that it’s probably RLS. I do meet the “Do I Have RLS” questions on the FAQs page. It’s just that I haven’t seen people with similar pain as me (or maybe I just haven’t happened across those posts), so I wanted to ask if anyone experiences something similar?
It’s always been so incredibly difficult to describe what the pain is like to my family and doctors. It’s like this deep-set, aching pain that runs down my leg, sometimes starting at my hip or lower back. It’s easier to describe what it’s NOT: it’s not an external pain, not a muscle cramp, no involuntary twitching or moving of any sort, not a stinging or a burning. It’s just this horrible, painful aching.
The other thing is that it does get relieved when I move my leg—-but ONLY for a split second, after which the aching resumes again. I find that the more long term ways to stop the aching are: 1) cutting off blood circulation to my leg, especially by sitting on it, 2) just keeping my leg still through the agonizing aching until it cools off, or 3) taking ibuprofen.
One other thing to note: my RLS is not an every night occurrence. It always predictably flairs up after: 1) I’ve done a lot more exercise than usual, or 2) when I’ve been sitting in a position for extended periods of time (flights are an absolute nightmare). Also, I’ve tended to notice it flairs up sometimes after a lack of sleep for a few days. And, while it is worse at night most of the times, there are days where I feel almost equally as bad pain during the day.
Phew! Long post! Thanks for bearing with me, and please let me know if anyone experiences anything similar to me, or if it sounds like I might have something that’s NOT RLS (this diagnosis is very new to me)!
Thanks in advance!!
PS: I took Slow FE for about 5 months after this diagnosis because my iron levels were slightly low before I came off of it. I want to say I started experiencing less flair ups, but it is still reliably there when I exercise more than usual or else sit for extended periods for of time. No avoiding it.