Has anybody else started to get RLS very suddenly?

Has anybody else started to get RLS symptoms very suddenly? mine started about 2 months ago. It is pretty bad I think , went straight to 7 days a week with unbearable urge to move legs from early evening to the morning, and al day every day, pain and stiffness also muscle jerks every where, even my face! every day I seem to be getting more weird and wonderful lol! symptoms. now i keep forgetting what i am doing, bad head aches blurred vision, loss of balance the list goes on. Its been a bit of a shock to say the least. How some of you have had this all your lives and somehow coped! I admire you all so much for your bravery and am so glad that this site is here. Good luck to you all best wishes Caz.

19 Replies

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  • Are you taking any medication the last 2 months which might have made the RLS become worse...?

  • My GP put me on Pramipexole 0.088mg, x 2 at night. the leg moving only started about a week before he prescribed it, and within 2 weeks that part had calmed down thankfully, it was agony and no amount of movement stopped it. I had originally gone to my GP a couple of weeks previously with bad head aches and pains in my head combined with blurred vision, especially on waking at night. I do suffer from migraines but this felt quite different, although he said it could still be that, at the time. I also suffer very bad back pain since an accident 3 years ago, so am on other meds for that, Tramadol 50mgs x 8 a day when required and Diazepam 2mgs x 3 a day for muscular spasms. the Tramadol is quite new I used to take co/ codamol 500/30, which really didn't do it for my back pain. I had to stop my antidepressants to do this, as Tramadol did not mix. I felt ready to come off the anti ds, and did it even slower than he said to. I also was on Amytriptaline for a couple of weeks only, low dose, but stopped them as they made me feel really ill. All this before RLS symptoms started.

  • Well, all of that mixed up together sounds really familiar. Tramadol is

    one med I was on for a while, but it did not help my back pain(broke my back when I was 14 and that was when my RLS started) Does the Tramadol make a difference with your RLS? It really used to help mine, but had to get on something stronger for the pain. Stopping and starting meds can bring on RLS, but you are saying that you did not have RLS when you took Amitryptiline? How long after that med, even if for a couple of wks, before the RLS started. So, we have another person with back problems with RLS, too.

  • Tramadol is better than the co/codamol. but not by much. I need to see doc about better pain relief, and I have made the appointment. what pain relief helps you? Tramadol helps a bit with the RLS, But the only thing that really helps is Pramipexole. I have increased my dose but still feel I need more. The head aches started about 2 weeks after coming off Amytriptiline, and the RLS started about 2 weeks after that. It has occurred to me that my spinal probs could be involved because some of the symptoms have been around for a long time, especially water running up legs, pins and needles, burning feet and finger tremors, I had nerve conduction studies done and they said that the nerve impulses were normal. they only did the lower spine, and I have a lot of problems with Cervicle spine also, so the studies did not tell me the answer I asked for, ie fingers trembling and numb hand. I have great difficulty in walking have gone from a limp to dragging my feet. I suppose I will have to wait untill I see the neuro, and hope for the best. thank you so much for answering , I was beginning to think I was going mad! caz

  • have you had any pictures taken of your spine? MRI or xrays to see if you have anything pressing on the sciatic nerve? Dragging your feet, or walking with a limp were my exact symptoms when I had cracked vertebrae and herniated discs. I am 56, broke my back at the age of 14 and my RLS started in soon after that. I have always FELT that my RLS starts in my back, but cannot prove it. There are studies that say that people wth RLS show "excitability" in the cerebral spinal fluid, but they do not really know what that means yet.

    But, my RLS starts up with a twinge in my lower back or hip, and then boom, it feels like elctricity is building up and it has to explode out through my legs, sometimes my arms. I stretch a lot and get in all kinds of weird positions to get that awful feeling to go away, plus am on a "cocktail" of meds for RLS, pain issues, and other things. I have had 3 back surgeries and 2 neck surgeries, plus several nerve ablations (burning off of the nerve endings) would not wish my wrst enemy the pain that occurs during that last procedure. so, I have learned to distinguish between nerve pain, RLS pain, and Fibromyalgia pain. Dragging a leg or two legs screams nerve damage to me, but that is my opinion and my experience. :o)

    The pain meds I take are hard core. I know you cannot get Vicodin in the UK, if I understand that right. That is my main RLS med, plus I take 60 mgs of slow release morphine every 12 hrs. Not easy meds to get in the UK, I hear, and it is getting harder in the US. But, I am on disability (in the US), so it is harder for them to cut off those pain meds. I have been taking the same dose for years. I think you need to get that dragging leg thing checked out, because, to me, that part does not sound like RLS, having been thru that myself. So, that is what I take for pain, and it controls my RLS most of the time, which is good because I cannot take any of the regular RLS meds. They either made me too sick or just plain did not work.....my personal story goes with the regular disclaimer. :o)

  • Hi Nightdancer, yes I have had several MRIs over the last few years even before my accident, they show damaged discs, 3 bulging and one torn,all very worn, in L2,3,4,5 the neuro' said it was like looking at the spine of an 85 year old.

    He said partly damage, and also a genetic link with the DDD,

    I agree with you about how the RLS starts, def. in the small of my spine, and also in my neck, I also have damaged discs there.

    The Mirapex is rapidly not working now, I have been on it since April, and am now taking 1gm a day, so I think I am already getting augmentation.

    I do find the Tramadol help the RLS, but nothing I have tried so far relieves the pain which I now have widespread, most of the time.

    He is sending me for more tests as he suspects another diagnoses as well as spine and RLS. and has said we will continue until we are both satisfied I have the best quality of life as possible, It's pretty miserable now, although I do my very best to keep smiling!

    I wondered if you have heard of Mirapex causing chest congestion? It is getting a bit scary, I hate making a fuss, but I am waking at night barely able to breathe sometimes, more and more regularly, My chest feels so tight and painful, and I have to sit up to calm it, my heart is tripping all over the place and pounding like mad! And I am getting breathless in the day now.

    You really have been through the mill, I am so sorry, I can sympathise, I can rarely remember not having some level of pain even as a small child, my mum said I was constantly in pain with my legs, she blames a fall from a swing on my bottom onto hard concrete when I was just about 2, who knows!

    I am glad you have some control over the pain now, I wish we could get these pain killers here.

    I have been told that my body fights any drug, such as Painkillers anaesthetic muscle relaxants etc.

    I was taking 3 x 0.088 mirapex, at night, and even with 4mg diazepam 100mg Tramadol and a couple of paracetamol cannot get more than 3-4 broken hours sleep a night, so have cut down to just one tramadol 50mg and the Mirapex.

    Sorry, I have gone on a bit! good luck, Cazx

  • Hi, I'm new to this site, but your comment has semi-answered my question! I damaged my back in December, I think running a pub finally finished me off on top of years of care work & have had an mri which showed two prolapsed discs (L4&5). It caused severe sciatica, but in the past two months has got a lot better, am just very stiff now.

    However, about a month ago the restless legs started at night. Am I noticing it because I'm on a lot less painkillers or is it a symptom of back injury? Any ideas? Am going to mention it to the Dr when I next go as, not only does it disrupt my sleep, but that of my poor Fiance who then has to go to work the next day!

  • What kind of pain meds were you on for the sciatica? qand, you never had RLS before this? How long were you taking Amitriptyline?

  • That is my question , too. have you started any new meds in the last couple of months. SSRI and tricyclic antidepressants can "wake it up" if you are carrying the gene, or it can make it worse if you already have RLS that is active. Many over the coounter meds can cause RLS, or trigger it is a better word. Anything with Diphenhydramine or Pseudoephedrine will most likely make RLS worse. Unfortunately Diphenhydramine is found in many ovar the counter sleep meds, and that is where some people get into trouble. And, also think allergy meds and cold meds. Or, withdrawal from certain drugs can trigger it also.

  • As to the meds please see above, I do not take any kind of over the counter meds apart from paracetamol (caffein free). Do you think that the Amytriptilene, could have kicked it off, I was on the lowest possible dose for only 2 weeks. I was on the same antidepressant meds moclobemide, years ago, it is an maoi type, I was put on that one as nothing else worked. I had no probs coming off it then and i did it exactly the same way.

  • all I can say is that we are all different in how we react to meds, but, Amitriptyline could most likely be the most "evil" drug when it comes to RLS, along with a couple fo others. You never know what is going to trigger it off. Coming off the MAOI inhibiter that you were on would not affect RLS one way or the other. Thatb calss of anti-d's do not seem to bother RLS. SSRI's and the tricyclics are the one sto stay away from for most of us, like 99.9% of us.

  • sorry for typos. Amitrptyline is a tricyclic antidepressant, and it is well known that it can actually trigger RLS, even after being on it a short time. We all react differently when it comes to meds, and there are always exceptions, BUT, it is one of the drugs that are high on the general "no-no list. See the teatment page on rlshelp.org Look for Drugs and Foods to Avoid on the treatment page. ;o)

  • My first reaction is.... why rls at 7 days a week from the start ? and would echo what previous posters have said.

    But headaches, blurred vision and loss of balance - haven't heard of that within the realms of rls.

    What does your doc say, and what tests have been done.

  • I don't know why, wish I did, it just came out of the blue, and I had no idea what was happening. My GP has now reffered me to a neurologist, I have had no tests done. I have been awake for ages with what feels like sunburn on my head and face, weird, def not been in the sun! I keep dropping things too, and my muscles feel so stiff, they are so painful I could cry.

  • Excellent point. I totally glossed over that because I was so zeroed in on the sudden onset of cazbaz's RLS. More testing is needed. Could be side effects from the meds.

  • when my RLS started I got exactly that, headaches, dizzy spells etc. but these have eased off in recent months. It was these that prompted the neurologist to get me CAT and MRI to rule out Neurological Degenerative Disorders which display similar symptoms (no expert, just quoting the doc)

  • i'd have thought that GP would at least have done blood tests for inflammatory markers, i.e. do an ESR to see if there is infection anywhere. Two years ago I had a headache that would not go away and nothing relieved the pain. After a week we got emergency doc and bloods showed very high ESR and I had Temporal Artritis/Giant Cell Artritis. Immediate high dose steroid resolved the pain in two days tho I was on them for over a year.

    Can't understand doc not checking the bloods or trigger points for fibro etc.

    Sounds like some of your troubles are at least as bad as your rls symptoms and certainly need investigation. How long will it take to get appt with neurologist.

  • I was suffering from muscular pain and fatigue, just plain feeling ill about a year ago, and he did blood tests then, which showed no inflammation, although I was on High dose Celebrex which is known to give false readings with blood tests. All the doctors say is that it is my back probs, and cant seem to see past that, Maybe they are right , I don't know, but things are progressing so fast,and I feel so very poorly and weak all the time. Hopefully the neurologist might look at things differently. I should be seeing him in about 6 weeks if I am lucky! Thank you for answering ,it has been a great help to talk to somebody, caz

  • I have now been to the neurologist who said no brain tumour, I had not even thought of that!

    He has recommended more tests so we shall see!

    Thank you all for your replies, they have been very interesting, especially the possible connection with spinal problems, Cazx

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