hi all, I have what I can only describe as chronic leg pain and I’ve had it since I was about 12. It’s very strange, sensations come and go primarily in my legs but sometimes my arms, and can be very very painful. I’ve never had any resolution or indication of what it might be, but my partner asked about RLS. I relate to some of the symptoms but it is more pain than a need to move. When I’m still in one position, the pain builds and builds until I move, which offers momentary relief but then can build again. I don’t have any sleep issues, I only waken if the pain is bad enough to wake me. I’m not sure I fully relate to RLS but there is definitely some cross over. My blood panels are fine with good iron and no inflammation markers. Always described as ‘growing pains’ growing up, but I am 25 now and it feels like it has gotten worse over the past 5 years. I would more closely label myself as fibro but that doesn’t answer questions either, I just want to be able to manage this and maybe even find out why. Any ideas would be great, if this sounds like you or if you think this could be/is not RLS. Thanks!
is it RLS?: hi all, I have what I can... - Restless Legs Syn...
is it RLS?
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
hi
I’m sorry to hear you have this pain , I have chronic RLS however I would not describe it as pain, I think it’s very hard to describe, it’s the most uncomfortable, annoying feeling of not being able to keep my limbs in my case my legs and sometimes arms, it’s feels like something inside just making me have to move the limbs constantly and keeps me awake all night to the point of delirium, it also happens to me through in the day especially if I am still, I have to be doing something all the time, It is so tiring! I would say it’s torturous as it causes sleep deprivation on a regular basis, I’m on the highest Rotigotine patch of 3mg and it’s still happening at least 2-3 nights a week ! I’ ve had pregablin, Ropinerol and gabapentin to name a few!! Im at my whits end, maybe your using the word pain as there is really no other words to describe it really but in my case I wouldn’t say it’s pain !! It’s really an indescribable jerking movement inside my limbs! I wish you well and hope you can set some relief.
Please read all you can about Augmentation. Sounds as though your severe RLS is caused by the Rotigitone patch. I presume you were on Ropinirole or Pramipexole before the patch and then they stopped working and made RLS more severe.
Are you also on Nortryptiline? That triggers worsening of RLS.
Most people on this site joined because of augmentation which means severe worsening of RLS caused by dopamine agonists. The only solution is to slowly reduce, go through withdrawal and then new meds will cover the RLS.
Read any reply by Sue Johnson and you'll see you need to reduce the patch by a quarter (0.25mg) every 2 weeks and ensure your serum ferritin is above 100 and replace meds that worsen RLS like Nortryptiline.
Gabapentin and pregabalin don't help until you're off all dopamine agonists
thank you so much for this , my daughter sent me link to this site and it’s great reading ! I’m going to show my doctor this because yes I was on Ropinerol first then 1mg patch then 2 mg now 3 mg and yes I’ve recently been put on nortyptiline
Kindest Regards Sheila
As you've only recently been put on Nortryptiline, stop it. Anti depressants worsen RLS.
Sadly, RLS is not taught to UK doctors so they have no idea how to treat it.
It's very common for them to increase the dose of Ropinirole and then prescribe the patch and then Increase the dose. Dopamine agonists over excite the D1 receptors and that drives the intense, worsening RLS. Increasing the dose is 'pouring gasoline on the fire' and just makes RLS more intense, more unbearable
The ONLY solution is to withdraw slowly
Show your GP the latest, most up to date treatment advice by the world's top experts. The Mayo algorithm. Dopamine agonists are no longer first line treatment. NHS and NICE guidelines are outdated and RLS UK is trying to push for their amendment
Links attached for you to read and discuss with GP.
mayoclinicproceedings.org/a...
To add to what Joolsg said: get the 1 mg patch and cut it in quarters so you can reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. I assume you were on the gabapentin and pregabalin while you were on either ropinirole or the patch and as Joolsg said, they don't work well then. On the gabapentin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Do check out the Mayo Clinic Updated Algorithm on RLS that Joolsg gave you a link to. and refer your doctor to it if needed since s/he is obviously not uptodate on RLS or s/he would never have prescribed a dopamine agonist.
Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Actually Nortryptiline does not make RLS for many people. The only way you can know is to stop it for a few days and see. If it does make your RLS worse, a safe antidepressant is Wellbutrin or Trazodone.
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, estrogen, 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, 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, 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, using a standing desk, listening to music and yoga.
Curious - I had "growing pains" as a child - 9, 10 years old. I recall that it was painful and eventually was treated for iron deficiency anemia. It eventually cleared up. Fast forward 50 years or so - severe RLS (probably after a ski accident concussion). I had all the criteria - no pain - but that intense urge to move was paramount. Iron supplements totally resolved the severe RLS, but alas still not the insomnia. Double check all the parameters of your iron panel. My ferritin was 49 with raging RLS.
RLS. is not painful, it's constant urge by your legs to jump. Can't sit or lie Down. Have to keep moving. I have walked around and around my longest was 6pm evening until 6am following morning . I have suffered for 50 years. Seen every specialist throughout the years. They don't seem to have any answers. I have RLS free for 7 months for the first time of my life. I swap back and fore my tablets pramipexole and ropinerole. Been taking these tablets for years and years. A few months ago my pharmacy could not not get ropinerole so I had to have pramipexole. And I am sure that swapping is the reason for my non jumping legs. Amazing
I really feel for you. I also have RLS and cannot understand why, occasionally, it seems to stop. Thinking hard about this, I am wondering two things: 1) whether doing gentle stretching as in Pilates helps (I just started doing it again, tho am not regular yet, but intend to be) OR re-taking a very low dose of HRT (half a 2.5 mg tab of Tibolone) might be the reason, as I have recently tried this to see, after a fairly long period without. I suspect both affect it, in truth, so I intend to keep them up and see. Suddenly not having ANY RL for a bit has been incredible, after many many years of it. Also, as is known, sitting still for longish almost always produces it, in the evening. I have always thought Hormones affect it and have tried to research this, but without success, as not enough research has been done it seems. Good Luck 
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