Hi, I’m wondering if anyone with RLS also has really excessive pain? Also has anyone had RLS since childhood? When I was a young child I had extremely bad aching pain in my legs. I was always told it was growing pains, but it’s never stopped. It was only at random times and about one to two times a month. Since I’ve gotten older and have more health issues my RLS and pain in my legs have gotten worse and is now almost every single night. I take medication for the RLS and it helps with my constant movement but doesn’t touch the aching in my legs that has become almost unbearable, even on pain medication. Thank you in advance.
Mitzi
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mitziblue
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I take Ropinirole for RLS and I take oxymorphone for pain. As I said the pain is aching and really bad because I have a high tolerance for pain. I have been diagnosed for RLS and as for peripheral neuropathy I haven’t been checked. How do the doctors check for this? Thank you so much for your help.
hi the pain is so bad the tears stream down my face my arm aches also and my feet are burning but cold i am always cold when RLs start i find it so hopeless
There are 2 types of RLS - one without pain and one with, although it does sound like your pain is more extreme. And answer Madlegs1's question so we can possibly help.
When I first discussed RLS with the Professor of Neurology he said that pain was not a feature of RLS. It transpired that I also suffer from Small Fibre Neuropathy so I can attribute the pain to that. Very convenient. It may be that there is something else for you
Your neurologist is wrong because some people with RLS have pain with it. Go to RLS.org and pay $35/year for a membership. It will be worth every penny!!
Yes, I believe I’m experiencing the same type of RLS as you. For me it started when I was 7 and my mom would rub my legs and tell me it hurt because my bones are growing. By the time I was in high school I also developed restlessness and thought it might have something to do with not getting enough exercise.
By the time I was 45 the RLS was unbearable and still it was accompanied by pain, sometimes deep throbbing in the muscle but more often stabbing pain.
I took ropinirole then pramipexole but these made it worse and I strongly urge you to get off ropinirole asap if your doctor advises it. Be prepared for hellish withdrawal, but after that is over you will feel better.
Also, you should consider whether you have diabetic neuropathy, or damage to a spinal nerve due to disc herniation. I have RLS, probably diabetic neuropathy (I’m pre diabetic) and I had a disc herniation which probably caused damage to my L4/L5 nerve which innervates a section of my left leg.
Wow, my leg pain started when I was little, I don’t remember my age but I would cry myself to sleep. I was always told it was growing pains. It happened randomly maybe once or twice a month. As I got older it never left me, at about 55 years of age it became a nightly occurrence. It’s gotten worse and worse. I have fibromyalgia and ruptured disc’s plus degenerative disc disease. So I guess all of these are compounding the pain. I’m going to go back to the doctor and see what she thinks. I’m not diabetic because I was checked for it last month. Thank you for your help!
Res, but the pain is the pain from RLS, the miserable sense of shock or seizure or uncontrollable movements that has me curled up on the floor hugging my knees.
I have extreme/severe RLS. I can remember back to at least age 14. So bad. I was just ignored about it. I couldn’t ride in cars, I couldn’t watch movies, couldn’t play table games…. Sometimes I have it so bad it’s even when I’m walking, trying to avoid it. And in my arms. It’s torture. I take gabapentin, mirapex, and Trazadone to sleep. If I’m able to fall asleep I can be awake by 2 and up for the day at 3 or 4. And RLS is such a catch 22. The more tired you are the worse it is and the worse it is the more tired you are. I was diagnosed by a neurologist. I failed ropinerole. I did use the patch awhile. I would not survive without mirapex and gabapentin. I know how much extra I can take if needed but sometimes I have bad nights. Especially I’ve found like the night before starting a period? (Sorry) will be a worst night. And it is a brain iron deficiency. I do have diagnosed iron deficiency anemia and have had iron infusions over the months. I have atrophic autoimmune gastritis and I don’t absorb b12 or iron so I’m also b12 deficient. RLS is awful. My 13 year old niece is showing signs and my sister is putting her off. I asked her to please take her complaints seriously. I wouldn’t wish it on my worst enemy.
Oh jeez that’s awful. I’ve been dealing with it since childhood but thankfully it’s only happened twice in my arms. I’m allergic to so many medications that I’m at a disadvantage to whatever I take take that doesn’t blister my skin. I really hope your niece is taken seriously because it’s a horrible condition and she needs help. Hopefully they will find something that works for us that helps the pain and the constant movement. I really hope you and your niece get some help that works. I guess I’m fortunate that I don’t have it during the day.
Hello mitziblue,I can relate, had the childhood 'growing pains' which continued until my late 50's at which time it turned to RLS. I have some arthritis in my back and I am fairly active at age 71. I have tried all the meds approved in the US for RLS and have had all the tests for everything. For now I take 0.75 mg of ropinirole and one Norco tablet (5mg hydrocodone/325mg acetaminophen) at 9:00 PM. I keep the meds as low dose as possible. This works for sleep through the night. If I experience the pain and RLS earlier in the eveninģ I have found the best remedy for both is one or two hits of cannabis. No pain, no RLS. I take 25 mg of iron bisglycinate and a vitamin C tab an hour before my evening meal to keep my iron up. Overexercising tends to increase the pain in my legs which is prevalent daily. This regimen has allowed me a tolerable existence. I wish you the best and suggest you try the cannabis for your pain.
I wonder if you are suffering from augmentation from the mirapex since you mention you have it in your arms. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I’m no expert on this condition as I’m in the early phase of treatment myself but in my experience jumpy legs can turn into achy legs or sore legs but the outcome is much the same. Disturbed sleep or rest and extreme fatigue.
I have just started to take Pregabalin and take it only at night to help with nocturnal RLS. I am finding that this medication is really effective but it’s not a magic pill. I’m still dealing with insomnia and, whilst my legs behave themselves for much of the night, I’m still awake at 3 / 4 am, sometimes with aches and pains in my legs or just awake.
From what I have read on this excellent forum, dopamine agonists are not the way to go. I’ve also had my iron levels checked which turned out to be lower than recommended but here in UK you cannot get an infusion so easily.
Could it be a form of fibromyalgia or something that mimics fibro? There is a connection between fibro and RLS. I suffer with pain and tension in my legs and have to do a lot of work out every day to relieve it. I can’t go out of the house until I’ve done it. But I also have that tension and pain elsewhere. The Buprenorphine I take at night helps a bit with that, too. I also lie on a spiky mat to relieve it.
Well I do have fibromyalgia so I’m going to do some research so I can see what might be the reason and the best way to deal with it. Everyone reacts differently to medication and some people are helped with certain medications while others aren’t. Thank you, I hope you get relief.
RLS is a symptom of fibromyalgia! I was given a book on fibromyalgia years ago. I had already started having RLS episodes and thought I was going crazy!! This was way back in early 2000s when no one was talking about it etc. I was diagnosed by Dr Arthur Walters. Although I don’t remember him telling me I had fibromyalgia!! 30 year later and I’m still having episodes!! There was a time for about 4/5 years I had no episodes I actually forgot I had RLs!! I was on a high dose of extended and immediate release opiates. Unfortunately that was then and this is now!! I am no longer on those dosages!! So I went backwards and now suffer. The more activity I have the more chance of getting an episode!! Ugggh it’s no way to live!! For me the opioids were a Godsend 🙏 unfortunately the USA regulations on doctors prescribing them are ridiculous!!! Even if you had surgery & need them for pain. The opioid police say no you can’t prescribe them for your patients that need them! They think they’re doctors and that they know what a patient needs!! Even if you have cancer they are monitoring each RX prescription for opioids that a doctor writes!!! I digress…. Does anyone know of a medicine similar to opioids that can help and that the doctor doesn’t need to be afraid??? Please post answers here…
wow. Reading all these responses, I am stunned that RLS isn’t automatically considered a disability. We’re hurting, extremely fatigued, taking med cocktails, and dealing with all manner of side effects and daily withdrawals!
I have severe aches Mitzi and it’s grown worse in my wrists above all. Oxy is only lasting four hours, so I’m up with pain, take another and thrash and wait for the drug to hit so I can finish the night. Last night it was 3:30. I’m exhausted and just about to start my day.
I’m so sorry. I do understand what you’re going through. I’ve not had it in my wrists. I can only imagine the pain and discomfort. Do you have other health issues too?
I do now. Chronic pain due to disc degeneration primarily but now a whole host of drug related stuff. Ugh. I lived such a clean life and was always so athletic and healthy. I don’t like having to take drugs to perform a basic function of life: sleep!
Yes, I’ve had RLS since I was a small child. They said it was growing pains. I used to cry at night and my dad would scoop me up and sit me by the bathroom sink while rubbing warm water on my legs. Then put a towel under me in bed and rub alcohol on my legs. Something about the warm and cool (and the comfort of my dad rubbing my legs) put me to sleep.
Sometimes if he didn’t hear me cry, I would stagger into my parents room pleading for help.
It was awful my whole life. I got hooked on painkillers for 15 years. Weaned off myself with the help of suboxone. Then I finally found Tramadol. A “shit” painkiller for any real pain but it goes something to help with RLS neurological pain.
I stumbled upon it on another forum. Some RLS suffers were suicidal and Tramadol saved them. I’ve been taking it for 10 years. My doctor gladly write me a script off label because she knows the hell I’ve been through.
Do a search on RLS and tramadol. Even this site has others who agree. Also, the side effects I’ve had on other neurological drugs were horrible. I have no side effects from tramadol. I also have taken less rather than more. I take 4-5 50 mg per day. Started taking 8 per day (max dose) but realized I didn’t need that much.
Oh I totally get it, I’ve suffered since childhood too. I’ve been put on tramadol and some others. They never helped me. Actually nothing has helped the pain. Even the pain medicine doesn’t touch it. It’s as though it’s got a mind of its own. I really am glad you have found something that makes you somewhat comfortable.
hi, yes I’ve had RLS since a child and I remember my mum taking me to the drs due to pain in my legs
I have peripheral neuropathy with a lot of burning type pain, it used to feel like I’d been plugged into an electric socket . Gabapentin has helped greatly with this. I had nerve conduction tests to confirm.
However if I have a very bad time with RLS I can also get pain which is different. They hurt all over with a very strong ache. I have alternate hot and cold showers then my husband massages them very hard which relieves it somewhat. It’s so bad sometimes it reduces me to tears and bad thoughts
I know it’s awful. It’s like it’s bone deep aching pain. I’ve tried all kinds of different medications mentioned above and nothing has worked, but my body doesn’t seem to react well with medication anymore. I used to be able to take anything, now I’m extremely limited to what I can take. It’s so frustrating.
I get pain with my RLS. I used to get the creepy crawling feelings then it changed to the pain. My calves when i massaged them mostly my right leg feels like it’s my muscles are lumpy it’s a deep ache. If my meds are working then no pain.
Mine has always been a deep aching pain and as a child I would move my legs to try to get away from it or take my mind off it. At least that’s what I think. It only happened randomly once or twice a month in childhood. As I’ve gotten older it’s every single night. It’s become really difficult to sleep and I just want to cry myself to sleep, yet I know if I do then I’ll have aching legs and a thundering headache as well.
My doctor is in Northern Virginia but he does televideo appointments. In fact I have never seen him in person. The only caveat I have is whether the pain you are having might be neurological so you should see a neurologist. Also I don't know if he prescribes opioids. His name is Dr.Lawrence Stein and his phone number is 703-521-6662. I will also check and see if there is a neurologist close to where you live later today.
Thank you so much for your help. I see a pain specialist where I live. I don’t react well to medication. I used to be able to take everything. Then I started not being able tolerate medication I’ve taken my entire life. I tried the lowest dose and then it was increased to the highest dose. For some reason my body rejects so many types of medication and it’s gotten so bad I’m only able to take one type of pain medicine and I’m really limited on antibiotics as well. I also can’t take any anti-inflammatory medications. It’s extremely frustrating because it limits my ability to take something that might actually help me feel better.
YES I suffered since childhood, my pain in 2019 was to the point I could no longer eat and was heading to Switzwerland for assisted dying. I am grateful to a doctor in NY who emailed me to say that buprenorphine would work for me. So I checked out of hospital in Australia flew to NY 3 days later started 2 mg buprenorphine. Dr Glen brooks is most compassionate doctor I have ever met and only prescribes buprenorphine without naloxone for RLS
I have 3 young grandchildren who suffered from a young age from RLS and leg pain.
There are over 10 people in our family now with this vile disease.
A few months ago I helped a 28 years old male who’s pain was 10 out 10 and had been hospitalised twice for attempted suicide.He had not driven a car for a year, gave up a top job in border security.
I took him to my doctor who referred him to the drug clinic I go to to be prescribed buprenorphine .He now has no pain back at the gym enjoying life with his wife and two very young children and able to plan a future.
I am currently helping a lady in Tasmania she is extremely suicidal from pain from RLS neurologists yes multiple have treated her badly . She spent last week vomiting from being prescribed tegretol because he does not believe in RLS.
Okay so this is going to sound like I have turned into a salad and I will do a post on it .I was not ready to bring it to the forum as I wanted to test it on more people as it is something very new I stumbled on in my research for pain. I am in need of a triple spinal fusion and suffer from a neck injury.So from my neck right down though my spine to sciatic nerves and legs 🦵 if I’m on my feet too long. So I read a study on black sesame oil being comparable to MORPHINE for pain relief .DONT take it orally as it makes RLS worseYES I tried it . HOWEVER I bought organic liquid form and decanted into dropped bottle so as to limit the amount.Mind blowing success so I bought 2 bottles and sent it to the lady in Tasmania she has just started it and got over 6half hours sleep straight from 10 to 4.30 them went back to sleep . She had NO PAIN during her waking hours . During the day she still had that pulling of wanting to move her legs however I am awaiting to her how she goes as the days go on.
The study I read they improved over 10 days down to a 1 with pain as for urge to move I have not tested this on anyone yet.
I have just done 24 hour longhall flight and I got through it by applying the sesame oil .
I have found in the morning when I have pain I put it one it relieves the pain instantly but the deep grinding in my bones is still noticeable and is gone within an hour.
So yes I smell like a salad I will take that over pain any day.
I hate to say this on the hole I have found neurologists to be very dangerous , they can write to all your health professionals telling them you are a drug seeker and then you can never be prescribed buprenorphine which I might add has a 98 percent success rate .
That sounds amazing! Thank you for sharing it with me and others here. I’ll have to try this. You aren’t a salad sweetheart, you do whatever you have to in order to get some relief. Thank you so much.
yes, I have pain as well, mostly in my right leg. I’ve had so many doctors tell me it’s not rls related but also, no one could figure out what the issue is. They’ve done all sorts of imaging but nothing shows up. I finally asked for an EMG (nerve conduction test) and it seems that it’s a nerve issue for me.
My pain management doctor recently put me on Pregabalin for a different issue - pinched nerves in neck- and that has allowed me to sleep fairly well. I was dealing with major insomnia because my legs hurt, my neck hurt and I have RLS. At first the Pregabalin knocked me out right away and I slept soundly all night which gave me so much hope but now I’ve been on it for about a month and I feel like it’s not helping the pain or RLS as much.l so I’m worried.
I’m only 45 and I sometimes feel like I can’t live Ike this if it continues. Lack of sleep and constant pain is unbearable. I’m working on lowering my weight because that may be part of the issue but it’s hard to do.
I may try marijuana to help and see if I can get off the Pregabalin.
I tried Pregabalin but it didn’t do anything for me. I also have fibromyalgia and you might ask your doctor to test you for it. The reason I mention it is because my neck and shoulders and sometimes even the back of my head hurts so bad that I can’t lay my head down on my pillow. I do and before I know it it’s lifted up and is extremely painful and tight. My muscles won’t relax at all. I’ve tried everything and nothing helps. With pain medication I can sleep but it doesn’t change the stiffness and tightness in my neck and shoulders.
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