Restless Legs Syndrome
10,370 members6,407 posts

Just diagnosed with RLS, Could you help please?

Hi Everyone, In new to the forum so please be gentle.. I'd just like to ask for some advice if possible please? I've just been referred to a Neuro after months of problems resulting in a neck x ray, bloods full MRI etc, all of which were clear except the neck x ray which showed mild spondylosis. I'm 48 so the neck issue is quite common I was told. Anyway, I saw a Neuroligist lats week and he thinks its RLS but I would like to canvass your thoughts. Shame on me for questioning a professional but I worry I didn't explain my symptoms to him properly. My main symptom is tingling/burning and sometimes a crawlings sensation in my whole legs and buttocks most noticeable during the day when I'm sat working. I However when I sit in my car, it's doesnt seem as bad and seems easier on soft comfy chairs. I've also noticed that if I sit on the side of my buttock, or lean back it seems to ease. As bizarre as this sounds, the most comfortable position is sat on the toilet and this was one of the reasons I saw spine specialist first as they were concerned about problems at the base of the spine.(The MRI was all clear though) I do get some tightness and burning in my arms but the spine specialist said that could be due to the mild spondylosis and if I drop and rest my arms, it eases. I've also noticed that the symptoms start almost as soon as I get out of bed in the morning (every day for months) and are worse when I'm sat down. However if I lie on my side, they ease and I'm sleeping pretty normal aside of a bit of anxiety about it all. I do get a bizarre tingling at the base of my spine and the tops of my buttocks get a burning sensation when I lie flat on my back but side lying is a relief. I sleep this way all the time. My symptoms seem to ease when I get home from work and whilst present during sitting, are not as bad. They also seem to ease when I go to bed although they may be there initially, they ease and then I'm sleeping normally. I also don't seem to have the urge to move my legs but obvioulsy moving them or rubbing them does ease the tingling. I may well be in denial over all of this but my Neuro asked me to visit a website which i did and I only seemed to answer a couple of the diagnosing criteria positively. I've had these symptoms daily and they are always there, just worse when sitting. The ease when I move but don't go away completely. The key thing I dont think I have is the overhwelming urge to move my legs and the evenings/nights are when I seem to get respite. Could this be something other than RLS? I'd really appreicate the thoughts of those who have been there seen it and done it if that makes sense? very grateful in advacne for any time you take to repsond. Many Thanks.

35 Replies
oldestnewest

Hi- and welcome.

What you describe does not sound like regular rls-- an unstoppable urge to move to ease sensation of tickling in the lower limb.

Your experience sounds more like some kind of nerve issue-especially in the way it is affected by the manner of your posture.

Unfortunately there is no specific test for rls- but you could look for the 5 signs that may point towards rls , on--

rls-uk.org

I hope this either reassures you or puts you in the right direction.

For myself , I would be looking at some sort of nerve damage in the lower spine- but I would have expected this to have been discovered in the MRI. But , then , they are very dependent on expert diagnosis - which - if you're in UK or Ireland, may not always occur.

Cheers.

5 likes
Reply

Hi Madlegs1 - really apppreciate you taking the time to reply. I'm just a bit confused about it all to be honest but this really helps. Thankyou

2 likes
Reply

Madlegs have you clicked on the link you posted. Takes you to a legal service.! LOL The link is rls-uk.org

2 likes
Reply

Bless you. Thanks for taking the time to reply.

Reply

Oooooooops- ! Thanks Elisse--- bloomin predictive text.!

Maybe they would be useful for suing ignorant medics??

Cheers.

1 like
Reply

Make a note of them for future reference. lol

Reply

It too me to the UK RLS site.

Reply

I was telling Madlegs to make a note of the link he posted.

1 like
Reply

I concur with Madlegs that your symptoms don't sound like RLS. RLS occurs with the majority of us when we are at rest, starting in the evenings and then disturbing our sleep. Your condition sounds like a nerve disorder that originates in your spine. I, too, am surprised that nothing of that sort has shown up on an MRI. I hope you find the correct diagnosis and get it straightened out. Blessings!

5 likes
Reply

Bless you. Thanks for replying Lolly.

Reply

I agree with the others it doesnt sound like RLS but some other condition which they have stated. Hope you get some answers to whats going on.

4 likes
Reply

Thanks for replying. Very much appreciated!

1 like
Reply

The urge to move is the ABSOLUTE MUST for a RLS diagnosis so I would say no it doesn't sound like RLS .Good luck x

4 likes
Reply

Urge! It's more like you have no choice but to move! It also makes you really angry. i overcame my nightmare RLS with a good probiotic, digestive enzymes, b-complex, magnesium, vitamin c and turmeric daily and a gluten free diet :p Yes I had SIBO. It wasn't until I googled SIBO and RLS together that I seen that up to 65% of people with RLS have SIBO. That is when I focused on my gut and nothing but. No RLS for well over a year now..

Reply

I'm sorry for your troubles and for all the confusion! I'm not going to take sides here since some of your symptoms do ring true for those with RLS, but I would look deeper into that mild spondylosis to explain your symptoms.

I'm wondering, has your neuro test you for peripheral neuropathy?

Take care,

2 likes
Reply

This sounds like peripheral neuropathy I've been told I have nerve pain although I haven't had tests, the symptoms Are the same, mine results from a bulging disc in my spine pressing on a nerve .

2 likes
Reply

look on. This site. Neuropathy pain support uk.

2 likes
Reply

Doesn’t sound like RLS to me. Good luck getting to the bottom of this.

2 likes
Reply

Just a huge thanks for everyone for taking the time to reply. It really is appreciated.

Reply

I have RLS and your symptoms do not appear to be similar to mine. You seem to have pressure on some nerves. I get severe pain in my back and legs when sitting in certain types of chairs. It affects the sciatic nerve. I know of people that work at computers developing leg, back and neck problems from sitting in a position all day that stresses their neck and spine. RLS causes uncontrollable urge to move the legs. The meds for it can have lots of bad side effects and can actually augment the RLS making it worse, a vicious circle and living hell. I have experienced side effects on Mirapex, neurotin, ropinirole and now on Neupro patch. Your RLS diagnosis seems wrong which could be a blessing. Have you tried physical therapy and massage therapy?

Reply

Hi, I didn't read your whole post. I'm just giving you some info on what has helped me. Through some research I found it advised to take 65mg of (ferrous) iron a day. I am so happy this has made a real difference with my RLS. It's worth a try :)

Reply

I picked up on ONE word in your post. Tingling. Can you describe that further? And, to make a point here, one should NEVER take iron randomly unless you have been tested for your iron serum, ferritin and hemoglobin levels. IF you do not need iron, it can be dangerous for some people. The doctor who diagnosed you with RLS SHOULD have had this blood work done already. It is the first and only testing that can be done right now. Iron helps dopamine be transported to the brain. In RLS, we have enough dopamine, it just gets blocked at the neuroreceptors, D1 and D3. For example Parkinson's is a LACK of dopamine, and just using it as an example to show the difference. NEVER EVER be ashamed to question a "professional". They work for US, and if we have questions it is their job to answer them. You said the neurologist THINKS it is RLS, so I am guessing he did not do those blood tests. If he did, then he would tell you if he thought iron would help you or not. Iron is not for everyone. I had iron infusions done, because my ferritin protein count was so low. We got my level way up and it made no difference in my RLS. How LONG have you had symptoms that he thinks is RLS? The diagnostic criteria was designed and written by the International RLS Study Group, a group of physicians who specialize in RLS all over the world. The 5 listed criteria all include the URGE to move that you cannot ignore. Some of your symptoms sound like maybe mild RLS, and I think I asked how long you have been having these, and are you on any new meds for ANYTHING that could be a trigger? What site did you read for your information, and did the neuro suggest meds of any kind for this? RLS is a neurologically related sleep disorder, so it should be mostly at night, not during the day. IT would be helpful to know what meds you are on for anything, since many classes of meds can exacerbate RLS, if indeed it is what you have.

2 likes
Reply

Good reply, nightdancer! Yes, "tingling" ( and "crawling sensations" ) is what I picked up on as well.

1 like
Reply

Hi Nightdancer. Firstly, my sincere thanks for you taking the time for such a detailed reply. It really is appreciated. The sensations I get range from a general burning sensation sometimes all over my body, legs, back and arms to a crawling sensation in my legs when sat down. I've even felt strange prickling on my face and nose at times. My right arm is always worse when using a computer mouse and then I stop and rest the arm and it seems to ease. I just put that down to a bit of repetitive strain initially. When I'm driving, I seem to get a burning sensation in the arches of my feet and moving them does ease it but I had a long 2 hour drive yesterday and actually didn't want to get out of the car when I got to my destination because I knew it would start as soon as I got out. I had routine bloods from a GP but the Neuro said my levels were normal but to go away and buy some over the counter iron tabs, take them for three months then go back to see him.

I'm just not sure that I get the urge to move the legs, there are certain positions that are more comfortable than others but I've always been a fidgety person and never stay in the same position for long anyway.

I suppose what I'm most confused about is the whole night time thing. This has been going on for about 12 weeks now but my evenings and bed time are the only thing I look forward to. I do get a burning sensation in bed on occasion but I'me sleeping so well that I almost dread getting up in the morning because I feel it as soon as I get out of bed. However, there have been the odd occasion when I've woken up and felt a bit of burning so I rubbed some Deep Freeze cool gel on my legs and arms and fell alseep again. I did think that could just be night time anxiety.

Could it just be that the night time problems haven't started yet? I also worry that my anxiety over all of this is making it so much worse. I've been obsessed about this for months and completely focussed on it. I cant deny how anxious and stressed about it all I am and I wonder if this is contributing to symptoms. Im sat here now cross legs typing this and aside of a few tingles in my toes, I'm comfortable.

I feel ashamed to question a professional but I did feel I was in and out of there very quick with a diagnosis and a come back in three months response...

Thank you again and bless you.

Reply

Sorry Night dancer, I forgot to say that Ive taken Lanzoprazole Photon Pump Inhibitors for 12 years for hiatus hernia and acid reflux but I'm 5ft 10, 74kg and was very fit and active until this started (Judo Instructor for 12 years). I did have someone tell me that PPI drugs can inhibit the absorption of B12 and Magnesium but my bloods were all normal apparently.

Reply

RLS usually ALWAYS starts at night. I wonder if your are understanding the URGE to move, that you cannot possibly ignore. Did you say you have only had symptoms for 12 weeks? That is odd. Will go back and re-read

1 like
Reply

ok, o only having symptoms for about 12 weeks is ODD, and this is what makes it so confusing. AND any stomach med should be taken 2 hours before or after ANY other med or supplement. IT interferes with how the meds break down in your system, I am waffling, some sentences sound like RLS,. and some make it sound like something else. I know one thing for sure, BURNING pain is not part of RLS, and is probably neuropathy. You can have more than one thing going on, but only having it for 12 weeks, make me wonder what has changed for you, Are you taking ANY other meds for anything else?? Many meds can trigger RLS symptoms, and I mean over the counter or prescription.

1 like
Reply

NEVER be ashamed to question a "professional". NEVER. They work FOR US.

1 like
Reply

Thanks again Nightdancer. Would it be OK if I explain how this all started. I will make some real confessions here also so please be gentle. I was on holiday in August and one day noticed a strange sensation in my left side. Almost like my hair standing on edge or mild electricity. I put it down to a trapped nerve or something and just ignored it. I do have terrible health anxiety and have learned to ignore symptoms because I know my mind can magnify them etc. However I noticed it again a few times in the next week or so and then it seemed to be there every day. I made the classic mistake of using Google and became worried it may be MS or something wrong with the spine. My GP carried out some random bloods and a neck X Ray showed "marked narrowing of the disc space and moderate discopathy" my GP thought that could be the problem but couldn't explain the issues with my legs. I subsequently saw a spine specialist and had a full MRI which was clear. He was unconcerned about my neck and said it was just my age. He thought it was a neuritis? And refered me to the Neuro. I think the Neuro diagnosed RLS on the basis of me saying that I do feel it the most when sitting and that standing up and stretching or rubbing my legs helps. However I get confused with the urge to move because when I feel it, I can ignore it for quite a period of time. I also find its worse on hard seats and yet on soft seats the symptoms seem easier but they are still there. When I sit, I feel the tingling almost like spots of cold water all over my legs particularly the inside of my groin and inside my lower legs and also my shins and the top of my feet to my toes. I feel it pretty much all day even when standing still. When I walk, I don't notice it as much but it's still there at times even when walking. I also get a sensation in my right thigh like someone is tightening something around it.

I've always found it odd that when I lie in bed flat on my back, my buttocks and legs start to burn and I get a tingle at the base of my spine like low voltage electricity, then I move to my side and it eases. I sleep on my side all night and every night no problem. (God I hope that continues) When I lie on my back and the burning starts, moving to my side does ease it but I can lay there ignoring it. In fact when I had the MRI, I was flat on my back for over and hour and by the end my legs and buttocks felt on fire but I managed to ignore it and wait until the MRI was finished. I suppose that is why I get confused about the urge to move. Does it have to be relatively instant? There's no doubt moving does ease my symptoms but I can sit through them for quite some time if that makes sense?

What I am a bit confused about is that I still look forward to each evening because I sleep well at the moment and actually don't want to get up in the morning. It's like the evenings and nights are my only respite. I do worry that it's early days and the night time problems may be yet to come. I'm sure that worrying isn't helping the other symptoms.

As soon as I get out of bed, I immediately start to feel as if someone is lightly tickling my legs with a feather and then over the first couple of hours the burning, tightness and tingling start. When symptoms are at their worst my arms and right thigh feel like they are sun burned and feel prickly and tight, so much so I often put cold water on them. I also get a feeling of pressure in my hands as if I want to puncture the skin to release the pressure.

I'm sorry I've really offloaded there and bless you again for taking the time and interest.

I am trying hard at the moment to just get on with things because I am worried that my constant obsessing and focus could be making symptoms worse than they are. I also can't deny that having now researched the syndrome, it's pretty scary and it's hard to find any strories of people finding ways to live with it. My wife said to me today that she thinks I may be suffering a little depression and whilst sympathetic, I know she's frustrated and my total focus on this. I have so much respect and empathy for people affected.

Honestly can't thank you enough for taking the time with me here.

Reply

We all live with it. Be careful what you read, though. A VERY common mistake in googling is that people come up with MS, and it is, of course, not related technically. But, I still cannot figure out why it has only been 12 weeks that you have had symptoms, and it does not bother you at night when our dopamine drops, and bothers you as soon as you get out of bed. Some of what you say sounds like RLS, and some does not. I really have nowhere else to go with advice, like I said it is odd that it has only been 12 weeks. Normally that would be a new med was started that could set it off, and you are not young enough to be pregnant, I assume?

1 like
Reply

Oh sorry Night Dancer, I forgot to say then only thing meds wise that has changed in the last 12 weeks is that I stopped using a beconase nasal spray that I use in the summer for hay fever. Other than that I have had no changes to meds or anything. The only thing I have changed is not training in the gym as much as I've been so worried about all of this. I was regularly in the gym 4-5 times per week but in the last 12 weeks have barely managed much exercise at all which I'm sure hasn't helped.

Reply

Kempojj I am leaving this to Nightdancer but only thing I will tell you about the urge to move sensations is that they can be so strong that you would literally feel as if you are going insane if you couldn't move your legs x

1 like
Reply

Could someone please put up a link to my old post entitled What does Restless legs feel like? " as I am a complete technophobe

It may help Kempojj ,thankyou x

1 like
Reply

Link to: What does RLS feel like by Pippins2

healthunlocked.com/rlsuk/po...

1 like
Reply

Thankyou Kaarina x

1 like
Reply

You may also like...