Hey everyone! I hope you are all doing well. I am catching up on a lot of posts and having the best morning with my coffee and your comments. I have missed you all.
So let’s talk about RLS. I know there are LOTS of older threads about it and I am reading through them but my question is, what if it’s genetic? I guess at that point you just handle it and move on?
Or, is there a link between PsA (or any autoimmune) and your likelihood of developing RLS if you have a genetic link? Of course all this doesnt matter and you have to deal with the RLS anyway.
I havent told my doctor since I was keeping tabs on what my body was doing over the past few months so I can have more info at my next appointment. It’s very mild but starting to bother me. Little electric sparks in my hands and feet or lighting running down my leg making my feet kick. Tonic water with quinine helps a lot but it’s a sad drink without the gin (no alcohol due to MTX). Also a brisk walk, not bad. It makes it hard to rest my horrible knees when you can’t sit still.
I don’t think it’s medication related but that’s not 100% ruled out. BUT my mother’s father has RLS very bad! He’s in his 80’s.
So RLS people, what has helped you the most/least? I have googled a lot of at home methods and I would like to try some of those options before dealing with medications. Of course if it comes to meds thats fine too, I just prefer to start at the beginning.
I’ve had RLS forever. My grandmother had it, my mom has it, my sister and I have it. Just a little bit of a pattern going there. Out of the four of us half of us have arthritis, my mom and I.
Generally I do nothing, although recently I have been using magnesium oil most nice before I go to bed. I think it helps, but I wouldn’t swear to it.
After I posted this I thought, well autoimmunes are genetic too… guess that doesn’t change much. I have heard about magnesium. I might try Epsom salt baths since they would also help knees and feet.
How do you keep the twitching at bay in the evenings?
I don’t get twitching, but get the urge/need to move my legs. It’s not constant for me, even in the evenings. Honestly, sometimes getting my back scratched really helps settle me. I put the magnesium oil on my feet at bedtime, and it’s seeming to help.
So far I have had two different types of restless legs. One appears to have been as part of a constellation of mild neurological symptoms that were a reaction to Humira - completely stopped once the Humira was stopped.
More recently, I have had unusual restless legs that have eased with a stetoid taper. The unusual thing about these restless legs was that it was really at the hip joint that needed to be moved - unlike the more-often described feet and calves. The fact that it has gone with the steroids makes me think maybe it was inflammation of a nerve in my hip?
The one thing I found useful when I had the normal version in my feet and legs was to use a heat-generating arthritis spray on the soles of my feet and lower leg. That seemed to just distract the brain enough to replace the crawling sensation with pleasant warmth, which allowed me to go to sleep most of the time.
I have never heard of the heat spray! Sounds like something I need to look into.
Yes, the second form sounds like a pitched nerve. I had a massage the other day and she really worked on my butt, thighs, and feet. I am hoping that a pinched nerve has been causing the RLS to be more at the for front. So far so good. Not as jumpy.
Try a magnesuim spray on the restless part of you legs. The cheap soap amazingly does help too. And if that fails try taking magnesium as a supplement. That has helped me a lot to include the burning feet only in bed scenario.
I have seen yes, but have never tried it. Honestly, this is my first time trying anything, with the magnesium oil spray. It does seem to work. You can expect some healing in the first few weeks of the soles of your feet
I will look into a spray. Maybe my grandfather would benefit from some of that as well. I guess the soap works just like the epsom salt baths? That is fascinating.
The heat spray was born of sheer desperation! Mine were so bad there was not much sleeping happening, I read about it on a peripheral neuropathy site (which was another thing I was getting), fools the nerves.
I’ve been getting that need to move the legs, or fidgety legs as I describe them to my husband too. I’m not on any meds at present, but was putting it down to permanent side effects of all the drugs I have tried, particularly the biologics. Or is it part of the PsA or associated with it? I also get a mild burning feeling in my hands and lower legs and feet, mainly when I very first wake up, like the nerves are all waking up too. Not sure what that’s about? I’ve been trying magnesium supplements and also some CBD oil, but really, getting up and moving about helps the most. I’ve recently had my B12 checked in case of neuropathy (all good) and also wondered about side effects of long term use of omeprazole? Don’t know what is the disease and what is side effects. Hence being off all meds - want to see what I’m left with.
I agree. It’s hard to know if its something new or a side effect of medication. I do know that when I take zyrtec (allergy meds) it is worse. I looked it up and it does say that zyrtec can trigger it. Taking tonic water with quinine in the evening helps a lot too.
I know for me its genetic. I plan on doing what I can now with out meds but i’m sure meds are in my future. I hope you find relief to the burning feeling in the morning. I know I have stiffness but not burning. I wonder what that could be?
Since this also happens in people who are unmedicated for PsA the likelihood that it’s PsA is more probable. When you hear of the symptoms those waiting for a diagnosis talk of - it’s these type of things they complain about plus cramps plus of course painful joints and tendons/ligaments.
Interesting, I’m currently taking 2 types of antihistamines for hayfever, though I get the burning when I’m not taking them too. As it most often happens just as I’m waking, it’s hard to keep track of when it does and doesn’t happen to see if anything makes it worse/better.
I’m seeing the rheumy in a couple of months, want them to see me completely unmedicated to ensure they’re still happy with the PsA diagnosis, as none of the treatments have helped at all. I’m lucky that I have only a mild case of whatever it is so can go unmedicated and just have morning stiffness, sore achilles and some sore joints (hands, feet, left elbow, shoulders and hips a bit). I can still work full time and as long as I walk daily, can cope okay most of the time.
I would try magnesium supplements if you haven’t already, I do think they are working a bit for me.
Yes, I agree with @Poo_therapy thats it’s most likely PsA related - it’s definitely the pattern we see on here. It’s very rare to see it as a side effect.
Yes I was, I’ve been on sulfasalazine, MTX, Benepali, Humira and Xeljanz. None of them particularly worked, all of them affected my neutrophils badly and I’m sure led to a hospital admission with suspected encephalitis. So I decided to try without and see how I got on (this was prior to COVID). I’ve also tried a steroid injection into my wrist (made me manic) and more recently NSAIDS including Meloxicam, also didn’t work and needed yet more omeprazole to stop side effects. Thought the burning was possibly worse with this too. I thought it was worth checking the diagnosis was still right given the medication ineffectiveness for me, got to wait til end of August for that. We’ll see.