Hi, I'm new to this forum my Mother read an article about Willis Ekbom Disease and thought it sounded like my symptoms, after reading it myself I had to agree. I'm not a person to self diagnose but after 15 years and more Consultants and Doctors than I can count on both hands and still no real diagnosis, and being told by both that there is nothing more they can do and the Consultant doesn't need to see me again I feel like I've been put on the scrap heap. So to my symptoms the Doctors call it "restless leg syndrome" which I've been told is a blanket term. The feeling I get is an incredibly sensitive sensation down one or other leg and foot or both I also now have started getting it in my hands and arms. The feeling is so intense I can't stop moving my legs I end up walking around the house and on more than one occasion I've hurt myself just to give my brain something else to focus on. I originally injured my back in an accident at work which meant I needed a Discectomy after the op I was in a lot more pain than before and haven't been able to work since. I'm not sure if this is connected or not but the restless legs didn't start straight away. I'm taking Pregabalin 300mg twice a day for the restless legs and Morphine patches every 3 days and Paracetamol as needed for pain, none of which seem to work. Any help would be much appreciated sorry about the long post but I just wanted to put all the facts.
Trev
Written by
PigzMightFly
To view profiles and participate in discussions please or .
Sorry to hear of your troubles. It sounds awful. Do the symptoms become more pronounced at night? Do they lessen when you walk about? It is surprising that they don’t improve with morphine. Has anyone prescribed mirapexin or ropinerole?
Sorry I had a bad night last night and can't take on everything everyone has written but has anyone asked what meds other than pain meds this poor man is taking? I'm wondering whether he might be taking something that's aggravating the RLS and wiping out helpful effects of Morphine...or maybe a change of Opiate might help? Just thinking out loud....
If this all started from the back operation- then could well be rls- a common phenomenon. As id says, your current medicine should be controlling it.
Have you seen a Neurologist, to eliminate Peripheral Neuropathy?
Adding Gabapentin to the mix may also help.
It's so difficult to be searching for answers from supposedly expert consultants- it would wear one out.
You're in good company here- a lot of experience, nuts and sympathy!
Cheers.
Like ID has said i am surprised the morphine patches are not helping as morphine should relief the RLS. Your symptoms do sound like RLS. Do you think you have all the criteria for RLS. ? This is the official criteria for RLS. It might help you. irlssg.org/diagnostic-crite...
I think you hit the nail on the head when you said blanket term. I have been diagnosed with RLS, Fibromygelia and Chronic Fatigue Syndrome as well as Perephinal Neuoropathy and I am an Insulin dependent Diabetic. I've had back operations from a bad parachute jump and going through the windscreen of a Land Rover plus other scrapes.
To me they don't really know what's wrong and Drs hate saying that so these labels have been invented. I think the first thing to do is to focus on the symptoms not the cause or why. The symptoms are the only thing we have any control over so that's were our efforts need to go.
Different drugs work on us differently and all our symptoms are slightly different so I can only tell you what works best for me.
I am on 40 mg of MST (slow release tablet morphine) twice daily. I also use Tramadol and co coydmol as needed every four hours during the day. I also have Oramorph for breakthrough pain. I usually save this for evening/night time use, it's very effective and helps me sleep. I am also on Duluxotine for the RLS/peripheral neuropathy. I also take Diazipam twice daily which I think helps best in calming down the tremors in my legs and relaxing the muscles around my spine. I also rub in magnesium oil in my calves, thighs and knees a couple of times a day which I find gives relief, the act of massaging it in probably helps. As does hydrotherapy.
Have you been referred to the pain team at your local hospital? They offer advice on pain killers, dealing with pain and physio therapy and psychotherapy of pain. I went on a very useful 2 hours for 8 weeks course on managing pain. Personally I prefer to talk to my GP about pain control as he is very supportive.
Hi to all, thanks for your response. I have had two sessions of hydro therapy and two of acupuncture neither of which gave any lasting relief to either pain or RLS, I've also been lucky enough to have had four sessions of pain management group which I found very helpful just being able to talk to people with pain and also Physiologists, OT's physio (although I don't have much faith in them) and other pain management professionals. At one session we had a talk by one of the top consultants on pain management and he had some very interesting things to say the most importantl of which was most consultants and Dr's do not understand pain or how it works and because of this they tend to jump to conclusions especially consultants who generally just want to use the knife. He spoke to me personally after the talk and I explained my worries and my symptoms and the fact that I'd been told by the consultant who was handling my claim against my company that In his opinion I had damaged nerves in my back,(of course this wouldn't go on my medical record. He gave me a quick examination and asked lots of questions and said although he didn't have access to my medical records he would tend to agree with the diagnosis of damaged nerves,and advised me to get a second opinion which I did the trouble is nobody seems to want to put a label on things so once again I get Chronic pain syndrome which is another blanket term for don't know or to scared to put a label on it. I think this American sue mentality has a lot to do with this. And it's the same with the RLS. They don't understand this thing has ruined my life my Wife left me because she couldn't take the mood swings I have no social life because I'm always in pain or suffering from RLS or both I've ended up living in Wales miles from my family and to be honest it's just to expensive to move back to the South Coast. I used to have a very active social life and was a keen Biker and we would be going somewhere most weekends or having visitors over. I can't face the friends I have because I guess I'm to proud, I hate people seeing me this way and I also hate being fussed over, you probably think I'm making my own bed so I should lie in it but that's me i'm afraid. I've tried to kill myself twice and the mental health service was useless I was even told by one of the MHT "well we can't stop you killing yourself" I guess if I did I would be know ones problem any more. I'm sorry to be morbid but that's how I feel, I wouldnt do it now because I've realised what it would do to my family but it doesn't stop me from thinking about it everyday. As for what pills and injections I've had to numerous to count I had one Consultant in Coventry who was brilliant used me like a pin cushion trying everything which of course I agreed to, unfortunately he had to retire due to back problems ironic I know the replacement consultant said my trouble was I'd been sitting on my backside to much, really helpful. So now as I've said I'm out to grass as they say. My doctor is no help just keeps feeding me the same old pills and if I ask him for something new he tells me there is nothing. I really appreciate the replies at least I finally feel I have people to talk to that understand. Thank you all once again.
Additionally. I've just looked at the link Elisse sent me and yes I fit all the published conditions. As for moving around I find this difficult due to pain but when I'm having a good day I do try but that usually ends up with a couple or more days in bed. Sorry if I sound like a hypochondriac (another of my fears). And sorry for any spelling mistakes I'm trying to do this on my phone lying in my bed 😂.
I have sent a private message regarding possible relief. Its a list of things that have worked for someone. Undoubtedly not complete but I think worth working your way through.
I can truly symphysis with your condition I suffer as you and the condition runs in families . I have. Regime that helps me considerably which is drug free no may help. I use a tens machine one evening for 30 mins and the next evening I do a series of exercises and then a 15 to 20 min walk. I still take my pramopexole but very gradually weaning off by reducing the dosage. At least I can now get some sleep which makes a big difference to my quality of life. Good luck.
Sounds very similar to my symptoms, which have been diagnosed as RLS by a neurologist. Not sure if you are in the UK, but if so there is a select handful of neurologists who are well attuned to the condition and can help. The RLS-UK organisation is the best source of help on this. Sorry to hear about the misery, and good luck.
Restless legs is impossible to describe to people who don’t have it because it is unlike any feeling that others experience. That awful, irritating, uncomfortable and intolerable sensation and the jerking and involuntary movements that accompany this disorder are a private and lonely misery. Feeling pain is a universal experience, but RLS must be puzzling to others. They just can't understand what we experience and fully empathize, it must seem completely odd to others .
Hopefully there will be a cure so that we can relax and sleep normally.
Until then, we are denied a very necessary respite from the demands of life.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Please help.. do I have RLS?
is there anyone out there with what I have?
Pretty certain i have RLS and PLMS. Advice? 
I thought my restless legs were a symptom of my Fibromyalgia, but could I have RLS as well?
