I only get RLS in my right leg. Its worse in my big toe especially where the toenail is and in the back area of my pelvis right where that little dimple is near to your spine above the buttocks. About 6 years ago I was diagnosed with Narrowing of the spine, Dehydrated discs and Bulging discs. Im sure it is related to my condition as I also get nerve pain in the back of my right leg down to my knee and in the back right hand side of my pelvis, again right where the little dimple is. The pain although bad sometimes isnt so much of a problem as to a degree I can control that. When I was on Tramadol, I became addicted and my RLS was really bad. On occasions I would feel it in my genitals. One of the other problems I have is that my husband is Military so we move around alot. So I am not with the same Docs who diagnosed my original problem. Does everyone on here suffer in both legs or is there anyone that only has it in one leg?
Only one leg!: I only get RLS in my... - Restless Legs Syn...
Only one leg!
Like Madlegs, I wonder whether you do really have RLS. For it to definitely be RLS you need to meet the following 5 criteria (as agreed by the IRLSSG). Do you meet all of these?:
1. An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.
2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.
3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
4. The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.
5. The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).
Meant to include the web address - irlssg.org/diagnostic-criteria
I definitly fit all the above criteria but I only get it one leg. I think sometimes the pain in pelvis is a result of the RLS, The contant fidgeting and sticking my leg in the air. Swirling my foot round in a circle or constantly flexing my foot. I also have the urge to squeeze my big toe and have on a few occasions put a clothes peg on my big toe as pressure gives a temporary slight relief. I wasnt orescribed Tramadol for the RLS but for the pain and I had much worse sypmtoms whilst on the Tramadol. I was actually prescribed Amitryptaline for the RLS but this made it worse too. I did try Gabapenten but again I think this was prescribed for the pain and was given to me instead of methacarbomol.
OOOOps
I just read this. Sorry again.
I agree, this doesn't sound like RLS.
"Fidgeting" is not RLS. Neither is the need to squeeze your toe.
The principal defining characteristic of RLS is the urge to move, which from your description doesn't appear to be what you have.
In which case, you don't have RLS.
Gabapentin isn't just prescribed for pain, it's also prescribed for RLS.
Amitriptyline isn't prescribed for RLS, it's prescribed for nerve pain.
Hello again Joanne
I notice you posted this information before in another post and I hadn't got round to responding. Sorry about that.
You can get RLS symptoms in one leg, or arm or shoulder, neck or even abdomen. That is, usually parts of the body which have large muscles.
I'd say it's not typical to have RLS symptoms in toes and I'd say highly unlikely to have them in genitals or pelvis.
I think then perhaps when you say you have RLS in these places the symptoms you are calling RLS are not the symptoms of RLS at all.
Considering the other issues you identify, in this post and others, the probablity is that the symptoms you are experiencing are symptoms of your neuropathy NOT RLS.
It's even less likely that the things you have been trying for your "RLS" will have worked for you since they may have no effect on neuropathy even if they do on RLS.
If you have been given a RLS diagnosis by a doctor, a GP or even a neurologist, it appears to me they have given you a misdiagnosis or at least not clarified with you what exactly RLS is, what neuropathy is and how they differ.
Yodadog has kindly given you information about the RLS diagnostic criteria. Hopefully you can see the the symptoms you have described don't match. I can't imagine for example how you can get the urge to move in your pelvis and relieve it by moving.
It is possible, but dubious, that you have both neuropathy and mild RLS in which case you need to differentiate between the two sets of symptoms.
It seems to me, that although you didn't say this, that the tramadol, Methacarbamol and amitrityline you were originally prescribed were NOT for RLS but for neuropathy.
You said that these made your "RLS" worse, but it's difficult for me to confirm this, since there is some doubt about what you mean by "RLS".
It's also seems, that at the moment your neuropathy is not being treated, hence you will be experiencing some unpleasant symptoms. If this is the case then I would imagine if you seek some effective treatment for the neuropathy, then you may find the symptoms you identify will improve.
I can say that I have both RLS and neuropathy, the latter due to spinal degeneration. My RLS symptoms occur mainly down my right side. My neuropathy mainly down my left side. Whether these conditions affect one side or both is not a reliable way of telling the difference between the two.
However it is common to get neuropathy symptoms in toes, pelvis genitals etc it's not in RLS, Furthermore since my spinal problem is lower down, I only get neuropathy symptoms in my lower back or lower. I get RLS symptoms in arms, shoulders or neck, i.e. above the spinal issue.
The treatments for spinal neuropathy can be oral non-steroidal anti-inflammatory agents e.g. Naproxen or if worse steroid injections or ultimately surgery.
Amitriptyline can be used for neuropathic pain, but gabapentin or pregabalin are more effective and less liable to cause RLS.
Iv tried naproxen but it gives me bad stomach pains. Im currently taking an over the counter Brufen/codiene combo which I started yesterday. Its slightly less strength than the prescribed codiene but since I dont find the codiene that effective I dont feel I have anything to lose. I think maybe a trip to the Doctors is in order to discuss my syptoms. I dont think I have explained myself properly though. I get all the sypmtoms of the RLS in my right leg but I also get the odd feeling that I have described in my big toe and my pelvis. I will speak to the Doctor though and see what my options are. I am really trying to get away from opiates and hard core pain killers. I had no quality of life when I was on the Tramadol, Amitryptaline and Gabapenten. I was like a walking Zombe and after a period of time they were inaffective and I became addicted to Tramadol.
I get it in the arch of my left foot never my right foot .Like you i use pressure usually dozens of elastic bands around the arch and i move my foot around in circles .I get it in both legs but left leg worst .My foot is the place i hate the most !x
I could take a sledghammer to my big toe sometimes. I guess its because its such a small insignificant part of your body but I have a high concentration of feelings in that one small area. If I havent got a peg on my toe I am scrunching it up and pressing it into the ground. Also the little dimple above my right buttock where I get the pain and the odd RLS feeling, I can get some relief if I press really hard into it but its such an uncomfortable position to hold.
Good idea to see your doctor and discuss your treatment options for your neuropathy.
Since I'm not convinced you have RLS, I'm not sure this forum can be of help.
My experience with the opiates has been different. I take both Methadone twice daily and Oxycodone 5mg for breakthrough RLS up to 4 times a day. I have no symptoms of drowsiness or "logyness" from it at all. They just manage the symptoms of the RLS, nothing more. I have only after several years have needed to increase the methadone because I am a rapid opiate metabolizer and was taking the minimum dose for pain management. I have an appointment with my physician next month to iron this out. I found Tramadol did nothing for me at all.
I was terrified to take these medications as I have an eating disorder I manage through Overeaters Anonymous and am an alcoholic (I was always a huge lightweight when it comes to alcohol and would have a blackout on 3 beers with no other medications on board. I have 40 years continuous sobriety from alcohol and any recreational or non-prescribed drugs. They have turned out to provide me the best relief of any of the medications I have taken.
One thing that I did find from some of the medications was that I did develop some compulsive side effects due to the medications. I was taking Neupro patches 3 mg daily and did fine. My RLS still was worsening and when they increased me to 4 mg daily, it "tipped" something in my brain and I developed a shopping and porn addiction. I realized something was not right and this may be due to the medications. I made an emergency appointment and when moved back to 3 mg daily, it went away as quickly as it came on. My doctor and I have a sense of humor with this disease (it helps, believe it or not). He laughed because he said he had little old ladies taking 15 mg Neupro patches with no side-effects, but me as a grizzly bear sort of guy, was kicked to my knees on just 4 mg. We all react differently, I guess.
Tramadol is the only opioid that can cause Augmentation and a few people on here have mentioned they experienced RLS in their genitals whilst augmenting. Back and spine problems are linked to RLS.
Amitriptyline exacerbates RLS. Stress also triggers it.
What meds are you currently taking, including over the counter meds like anti histamines and cough meds ?
I take Nexium for heartburn and I am on 15mg codiene taking 4 of these twice a day. I do have tramadol from when I was on it but because I became addicted I was loathed to use it again. I actually took 2 x 200mg of tramadol last night and slept really well. I dont really want to go down that road again but I am pretty desperated for some relief at the moment. Im not sure my Doc will prescribe Tramadol so my other worry is that if I self medicate and I come to the end of it and I cant another prescription.
Perhaps you should have a long discussion about alternative meds. If in the UK, Targinact is licensed for RLS so you could consider that or Gabapentin or pregabalin. You appear to have been on very, very high doses of tramadol in the past so the alpha2delta ligands are probably most suitable for you. As you move around the UK a lot, it may be best to see a neurologist to discuss the meds and the neurologist will confirm this to any GP.
The Tramadol and Methacarbomol where for severe back pain. Up until this point my RLS was only very occasional. AFter about 6 months on the pain meds my RLS was quite severe and this is when I experienced it in my genitals. At this point the Doctor prescribed the Amaltryptaline. I then moved away from the area and my Doctor didnt agree with the Methacarbomol and so I was prescribed Gabapenten. I really didnt get on with it and made me feel really low and I gained weight. At the same time as being on all these meds I was prescribed Fluoxatine for my depression but I felt like the Gabapenten just counteracted that so I weaned my self off that aswell.
Amitriptyline, fluoxetine and all anti depressants ( except Wellbutrin and Trazodone) cause or exacerbate RLS. Gabapentin does have side effects, but they usually subside after 2/3 months. Gabapentin and pregabalin increase appetite and can cause fluid retention, however, if you are strict and avoid carbs , you’ll find the weight gain levels at about 7 pounds.
I think you could try pregabalin as it has fewer side effects.
Your RLS may disappear again if you get off the fluoxetine/Amitriptyline and use only the safe anti depressants.
I weaned myself of both of these about 18 months ago. Im only on codiene at the moment but that is manage my pain rather than my RLS.
Codeine is also prescribed for RLS
Im not having much luck with it but I am on a low dose for my back pain.
I have restless leg predominately in one leg. I believe mine is also involved with nerve in my back & hip. I take a 1/2 a sleeping pill (ingredient ends with succinate). I also rub either icy hot or thermaheat on my hip and a couple drops of CBD oil under my tongue. It works pretty well
Iv tried CBD supplements and even vaping CBD oil. I didnt like it as I am not a smoker and I didnt notice any difference in my syptoms. I even tried vaping a Valarian oil but again no relief.
The 'criteria' is kind of a joke, the periodic nature of symptoms is the key indicator. I have a count of around 45 between mine, but there are other more constant symptoms.
One leg worse or mostly, is common. Symptoms in feet are a pain to deal with, I find ice is always a successful last resort.
I will also get the same feelings in my genitals as well from time to time. There is nothing sexual about it If I have an orgasm during this time from masturbating as it is such an unpleasant feeling, it will send my RLS through the roof. They say that "Restless Genitals Syndrome" or "Persistent Genital Arousal Syndrome" and RLS are related or may be different manifestations of the same disease. From what I have read on this, a lot of physicians will mention self-stimulation as a way of relieving the symptoms. Does not work for me at all. Also, when I am having this, I also have horrible urinary frequency and urgency at the same time, urinating every 2-3 minutes. I have a neurostimulator that a urologist implanted a year ago for urgency and urge incontinence which has been a lifelong problem. It has helped with the urgency a great, but when my RLS manifestes in this area, it does no good whatsoever.
My guess is that fibromyalgia and RLS are at least cousin conditions as more of a 'potential' to produce unnatural symptoms due to some state of nerves or muscles. So your version comes as no surprise. What is interesting is that for both, oxalates for some play a part, and is a key to a mechanism for these types of conditions.
Your range of symptoms although terrifying to think of, is also facinating in its complex manifestation. My RLS is from oxalates, and based on the likely process, could explain how some have vanilla RLS like me, while others get a real bad and complex deal.
All the best with your situation.
About 4 years ago I had a horrible experience with Restless Genitals. I felt so ashamed and almost had a breakdown. The self relief made it worse and it ruined my sex life. At this point in time I was taking 1600mg of tramadol a day 6000mg of methacarbomol and 20mg of Amaltriptyline. I feel all these meds made the whole thing worse and I was like a walking zombie. I weaned myself off all these meds gradually myself and stated taking magnesium and I used salponas pain patches to help me through the withdrawel. Once I had gone though withdrawel I managed my condition fine and my RLS would only appear occasionally. Until about 5 months ago when my RLS is every night and late afternoon.
I have had to adopt the philosophy of "what cannot be cured, must be endured" It is part of my philosophy with my twelve step programs as well. It helps me get through lots of things one day at a time
Joanne - it is not uncommon to get RLS in only one area such as your leg. It may be related to a back issue. My physician tells that some sort of spinal issue can exacerbate existing a minor RLS attach and make it a big deal.
Personally, I do not get it the same in each limb with each episode. I have a running joke with my husband when I get the first twinges of an RLS attack. I will say "We have a winner. Tonight's festivities go to my R arm and my L leg. " We laugh about it,
Jeff will have RLS every once in a while. He had commented to me "How do you stand it, day after day?"
Again, I use the axiom "What cannot be cured, must be endured." and from OA and AA "One day at a time" Sometimes it is one hour or minute at a time. Thankfully he is extremely supportive and understands when I refuse to go out in the evening or ride long distances in the car.
We all experience it differently and please ignore the people in your life that do not understand it. You have a right to your feelings and what may be a minor issue to one person can be a big deal to someone else.
Bless you and your husband. I think I read somewhere that your husband was deployed. I really appreciate his service to me and our country.
Thank you. He has been home for just over a month now and luckily he only has to do the long overseas deployments about every 4 to 5 years.
I get it in only one leg at a time--usually, but not always, the left leg.
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