So my Doc thinks I have restless leg syndrome now as well, which apparently
Is a sleep disorder. So another med to add into the mix. Arggh! Anyone
Else have this or have suggestions other than meds?
Seriously, a gin and tonic at bed time is VERY effective. You can leave out the Gin, its the Tonic water that works just make sure you use REAL tonic water (quinine)
There is also an herbal treatment sold at walgreens and most Drug stores called interesting enough "restless legs" but the biggest cause is a iron, magnesium or potassium deficiency all common with PsA.) The tonic water or "restless legs" worked for me but then my doc added a potassium supplement (OTC) and the problem went away
He had me take a potasium supe also when the Charley Horses start. They stop almost instantly.
I'd give some of it a try.... (Might be as simple as eating a banana before bed and taking an Iron pill......) beats the heck out of colonidine.
Did I mention a gin and tonic at bed time is also VERY effective (with or without the gin)
Hi, Kirsten
Restless legs are no fun! I don't have them, but my DH has PLMD(S) -- periodic limb movement disorder in sleep -- and he often gets the RL itchy-creepies in the evening. The two conditions are not the same, but related. He has tried pretty much all the meds, and they are used for both conditions, but they have been no help. He decided not to medicate with the newest one, can't remember its name, as it had some side-effects that he was concerned about. So he just lives with it (which, in the case of his disorder, means I put up with it).
Tnt's tonic water idea is interesting, and certainly worth a go. I adore a gin and tonic, but of course on MTX, mine is about 1 ppm gin.
I was having leg cramps -- of the charley horse kind -- at night at one point, and those went away when I started taking a magnesium supplement. FWIW ...
Good luck with this. How is work going?
Seenie
Work has been a challenge. I am only allowed to work four hours
a day with a day btw each work day, so M,W,F. Which has some coworkers
upset. I am doing ok with these hours but want to do more, my doctor says not yet.
I am impatient and that is nog helping me , so I am trying to change my mindset. So
instead of " I only worked four hours". To " I gave a 100% for four hours". I
am trying to have patience ; it is a work in progress.
Seenie said:
Hi, Kirsten
Restless legs are no fun! I don’t have them, but my DH has PLMD(S) – periodic limb movement disorder in sleep – and he often gets the RL itchy-creepies in the evening. The two conditions are not the same, but related. He has tried pretty much all the meds, and they are used for both conditions, but they have been no help. He decided not to medicate with the newest one, can’t remember its name, as it had some side-effects that he was concerned about. So he just lives with it (which, in the case of his disorder, means I put up with it).
Tnt’s tonic water idea is interesting, and certainly worth a go. I adore a gin and tonic, but of course on MTX, mine is about 1 ppm gin.
I was having leg cramps – of the charley horse kind – at night at one point, and those went away when I started taking a magnesium supplement. FWIW …
Good luck with this. How is work going?
Seenie
Hi Kirsten, sorry you are dealing with RLS. I have had it for many years. In addition to feeling symptoms in my legs, I also get them in my arms and, at times, my back. It gives me the willies just to think about it. AGGGH Some people say Vitamin E helps, but I didn't get any benefit from that. Tonic water is often advised, but I found I couldn't drink enough of it to keep up with my symptoms. Of course, walking or a warm bath may help with symptoms when they are active. I have a Pilates machine that exercises my legs when it is unbearable. I don't like to over do the Pilates machine because it eventually causes a PsA flare in my knees if I go at it too often.
I find that RLS is worst when I get over tired. If I think I might be getting sleepy, I go ahead and take that nap. If I have to pull of the road, I do it. If I have to leave class early, I do it. If I don't, it won't be long until the "creepies" take over and I will seriously want to jump out a window!! It is the most awful feeling; I'd rather have the pain of PsA. (No, I'm not exaggerating.)
Things to avoid: caffeine, most anti-histamines and most anti-depressants. Those are proven to exacerbate symptoms of RLS. I switched to caffeine-free soda and tea, which did help but has not sent my RLS packing. I can use Phenergan but must avoid Benadryl. I've never found an anti-depressant that didn't cause RLS to become much worse. (As is true with any illness, your response to individual drugs may be different from mine. )
Best drugs I know about are Requip and Mirapex. I use Mirapex with no side effects except drowsiness, which helps me fall asleep at night. No complaints there! The dosages of these drugs (which are actually used for Parkinson's Disease in much higher doses) are so low for RLS that side effects are quite rare. These meds are taken daily. Sinemet seems to provoke what is called "rebound" in RLS. This happens when your system "gets used to the drug" and it no longer works well. You have to keep increasing the dosage to get relief, until you get into the areas where side effects start to appear. Because of this, I, personally, would avoid Sinemet at all costs as a treatment for RLS.
Narcotic pain relievers will help RLS symptoms for most people, and can be used only when symptoms are active. So if you are taking hydrocodone (or another narcotic) for your PsA, you might get some benefit from it for the RLS, too.
If you haven't already, check out the RLS Foundation website. Great stuff there!
Hope this is helpful. I know how awful awful awful RLS is and am so sorry to hear of anyone suffering with this. Please feel free to message me if I can be of any help.
Byrd
Hi Kirsten, I have had RLS for many years. I take ropinerole every night.In fact I just ran out so tonight is going to be bad.Not much seems to help me except the pills. A calcium, magnesium, & zinc vitamin seem to help a little, but it must be this combo pill not individual pills. I am sorry you also now have this to deal with.