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Restless Legs - Any suggestions as seen many doctors and medications
Hi, I’m new to Mayo Connect but here goes…I have had RLS (Restless Leg) for about 40 years and it started with just occasional problems to now it’s daily at 66 yrs old. I had an unacceptable reaction to a few different meds like Gabapentin and also other meds used to also treat Parkinson’s and the last one they wanted to try had so many BAD side effects that I said no as I have reactions to many types of prescription medications including over the counter Antihistamines, Aleve etc. I do take extra B-complex, Vitamin D, Magnesium, Potassium, tried Iron etc. I often get leg cramps or ankle and foot cramps and remember my mother having them all the time. It doesn’t seem to make a difference if I exercise or not and mine will start late afternoon or evening. I toss and turn at night and I’ve actually made a hole in my sheets before because of moving my legs/feet so much. Occasionally my arms will also bother me. Heat, support stockings, warm shower or bath can help sometimes, but have noticed what works today will not work tomorrow so it’s what do I want to try tonight as again its rare if I skip a day. Just adding to my leg issues … 8 years ago I had an extreme 3 disc fusion in my lower back that was successful, but I woke up in the hospital with both legs and feet numb, which is common, but mine did not go away. About a year after surgery a neurologist said I had some nerve damage in my legs which might or might not go away, plus ankles very tender. Numbness is now mainly in lower calf (so much better) and feet plus ankle tenderness. Told I had neuropathy probably from the back surgery. I can live with sore/numb but the RLS is bothering and need to find relief. I recently moved to another state and my new doctor (after he touched my ankle and I nearly jumped off the table on him) had me go to a neurologist. With his testing he said I did not have neuropathy and he ordered spine CT which was fine, blood work including for RA etc. and all fine. Anyone, have suggestions? Again, I can live with the numbness, but the restless legs are what bother me. Not only is it uncomfortable/ache for me, but I start bouncing my legs, feet, Stand up/down, walk around and back to tapping my feet etc. so I annoy everyone.
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Hi Dragonfly Lady here, my heart goes out to all of my fellow RLS sufferers! I’m 69 and I don’t remember a time I didn’t have RLS ( or my whole family). I also started having symptoms in my arms about 15+ years ago. There’s not a single night that I’m not jerking hurting and so over whelmed by RLS. I often wonder if there’s some nerve doctors could burn out of my brain or spine! If so I’d fight to be first in line. Recently my Pramipexole 1mg stopped working due to the fact I’d been on it for so long( P.S. DO NOT TAKE MORE THINKING IT’LL HELP. IT WILL ONLY MAKE RLS WORSE!). Well before my doctor would believe iron infusions was my only option, I had to try meds that I had tried before without success: Gabapentin and Pregabalin. They are now on my allergy meds list due to terrible reactions along with Clonazepam and Tramadol.
I just had my second iron infusion and I feel like a new person. I don’t hurt all over. I’m back on my Pramipexol 1mg every night along with SloMag and Vitamin D gummies. I pray this will keep me from having anymore severe episodes forever! Ha It doesn’t hurt to dream :).
Oh yeah I also tried the Neupro 2mg/24 HR patches. I was so excited. Here was something new and boy was it EXPENSIVE. Sad to say due to terrible headaches it was just another let down.
I’m sending my love to all of you and pray that one day they will find peace for us suffering with RLS
Thank you so much for the recommendation. I will check them out.
I agree that sleep deprivation is torture. Add RLS and well...you know!
@dragonflylady
Glad to hear the iron infusion has helped. Like you I'm 69 and have had this my whole life with it getting worse as I age to the point it is now every single day/night. Unfortunately, I have an allergic reaction to all of the medications that I've tried including gabapentin and pregabalin. I can take tramadol, but that doesn't stop...just kind of makes it more manageable. I live in a state where CBD is legal, so I take CBD with very little THC, heat wrap on my back and tramadol around 5 or 6 pm as mine started late afternoon. Like you it also effects my arms some nights. That combo has been life changing. some nights it doesn't help, but its 100 times better than before. I've been to many doctors and neurologist over this but other than the meds that I have a reaction too they have not been much help as they just don't know that much about RLS. I did have one neurologist say that while all my iron, D, Mag etc were good there was a chance that my brain was not getting the notice that I had good iron levels or that I was taking extra iron. Guess that's a thing, but we moved so didn't see him again and have an appointment with a new neurologist so will see what they say. FYI I have been told that the medication can make RLS worse, so you do need to be careful. Kind of glad I cannot take the meds as I would hate to make this worse than it already is...I've worn holes in sheets, cannot sit still in meetings etc. I'm a nightmare to travel with....I wear support socks, heat wrap loose clothes, pay for more leg room or 1st class all trying to make a trip easier. Sometimes it's ok, but most of the time it's a horrible trip for me....I get up all the time to use the restroom just to move. LOL
@drwass2 Hi, for me compression stockings help or rather work one day but not the next. I still use them as they help...sometimes they just bug me so take them off and don't wear them for a few days or weeks, but they do help. My problem is my RLS starts early in the day. Sometimes my arms will bother me but not daily like my legs. Have discovered that if you don't move enough, it can trigger RLS, but you can move too much. Support socks work one day but not the next. Heat helps sometimes etc...so far, I've tried most everything that I have read in the forum here other than iron infusion and Nidra device. I have tried many medications over the years but have a reaction to them all.