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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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@lacy2 you never know what will work so your bar of soap remedy would be worth a try for people. Harmless. You never know if there is some chemical in it that will do the trick. I'm very chemically sensitive so I'm afraid my lungs and head wouldn't survive a bar of soap in my bed, but I do appreciate the suggestion. 🙂
@3dogs -- sounds like you've already been on the prevention path. If your diary leads to any aha moments, please share. It might turn out to be a trigger for me too. If that bar of soap works for you, but your your RLS starts long before bed, maybe you can get those knee ice pack wraps and put soap shavings in the pocket instead of an ice pack and wrap those one your legs starting in the evening. Or maybe a pillow with a bar of soap inside the pillowcase and you rest your legs on the pillow if you're in a recliner. I'm guessing your RLS starts when you sit down after dinner for nightly TV or reading since RLS usually hits when the muscles are resting. Sugar is a thought. I'm always so focused on what other issues I have that are triggered by sugar, I haven't paid attention to a possible sugar/RLS connection. I eat some sugar every day, but I've cut back due to other issues. 🙂
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1 ReactionI'm so sorry. I know what you're going through. I've had RLS for 30 years,also have narcolepsy so getting sleep that isn't so fragmented is very important. I've been put on antidepressant/psych drugs too, I really hate it. I never know whats going to happen, some have been 36 hours of pure hell before I could finally sleep. Trazodone after a few years of being prescribed it for sleep I figured out after it stopped helping me sleep and stopped it had been making my RLS much worse. Who knows what other meds will aggravate it. Many of them are also addictive and can be difficult getting off of and can take months in addition to the known side effects and what they don't know I think makes them risky and dangerous, just as much as controlled meds for some patients. Providing relief these days is very low priority while preventing addicts from getting, using or selling meds like hydrocodone has taken top priority over patients with a real need for these meds. Patients are put through what can be horrible side effects trying one drug after another going on months if not years while addicts are provided with a different opiate so they won't use heroin or whatever. Makes zero sense. I find magnesium helps, so does this big massager I have, Kratom can help some. I haven't tried it but medical marijuana might help also. You'll just have to keep researching, asking questions and trying different things. I wouldn't count on getting much help from a Dr prescribing anything that will actually work without even worse side effects. They have those muscle stimulator things that might help too. I hope you can find something helpful.
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3 ReactionsI tried the foot massagers too without much luck. I got the heavy duty wand with heat massager and it does help being a more intense massage. It will numb an area for a short time. It is heavy and you have to move it around. I hold it between my feet and calves for awhile, that helps and will numb the area if left going too long, this isn't really good for you but it does give you a break maybe long enough to fall asleep. Just try not to fall asleep with it on, they can overheat and burn you.
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2 ReactionsTry a couple of Tylenols at bedtime
Try a couple of Tylenols at bedtime
Taking 2 Tylenol pills at bedtimes eases my RLS.
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1 ReactionThanks, I might try that early evening/late afternoon when my RLS starts. Years ago, someone said to try Aleve which I did and discovered that for me Aleve causes asthma type reactions. LOL I decided to stop taking tramadol and take the Aleve instead as the tramadol did not stop it just made it a little more bearable. I was coughing and wheezing so much it was affecting my work as could hardly run a meeting. My doctor could not figure out was causing the issue when she kept asking what I was taking that was different. I finally confessed I was taking Aleve daily and she said that for some people it can cause asthma type symptoms. With all the medications I have reactions to she thought that was it...I stopped the Aleve and within like 3 days all coughing and wheezing stopped.
I take 2 Tylenols at bedtime to ease my RLS.
Try 500 mg of magnesium glycinate. I came off of pramipexole due to augmentation and am taking this instead-it has helped as much as meds did. Also, have your iron levels checked, serum ferritin should be 75 or higher, well above the normal range. I joined RLS foundation, which has provided invaluable information, you might consider joining.
Best of luck - RLS is no fun, and people just don’t understand what agony it causes and how disruptive to your wellbeing it is.
Hi my iron has been checked and are good, I take magnesium but not the glycinate kind, which I will try. They didn't have that at the store the other day but next time I'm in another store will try as it was mentioned before.