When I was 18 (I’m now 20), I was diagnosed with RLS. I’ve had the same excruciating pain that lasts all night and has me in tears all night for as long as I can remember. I’m a student, and it’s been really hard to handle and manage the symptoms, I’ve tried the exercising, improving my sleep hygiene and improving my diet but just nothing seems to work; it feels like I’m just waiting for the pain to come with just gives me such anxiety.
I just wanted to know whether anyone had any tips for me? As I know it’s not just going to get better!
I’ve tried taking ibuprofen, paracetamol, paracetamol and codine, codine 30mg and 60mg, and I’ve just been prescribed pregaballin (let me know if that’s any good too?)
Sorry for the long post, but I greatly appreciate any replies I get!! Thank you x
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I am really very sorry to hear about how you are afflicted by this condition.
It's difficult to decide what to say to you because your suffering seems so extreme for someone so young.
Probably the first thing to consider is whether you actually have RLS at all. I understand that someone has given you this diagnosis, but unfortunately RLS is not well recognised by many doctors and a misdiagnosis is not uncommon.
I'm not saying you don't have RLS but think it worthwhile confirming it because you will only get the correct treatment if you get the correct diagnosis.
Although pain, the main and only symptom you describe, can be experienced as part of RLS, it is not the defining symptom.
There are five diagnostic criteria for RLS and the diagnosis is confirmed if your situation matches ALL 5. The first 4 criteria are symptoms
The criteria
1 You experience an unpleasant sensation in your legs which is accompanied by an urge to move them.
2 The urge to move occurs when you relax, sit still or lie down.
3 The sensation and urge to move disappears or lessens when you move your legs.
4 The symptoms occur at night or when you are falling asleep
5 All other possible explanations for symptoms have been excluded.
The "urge to move" is the defining symptom of RLS hence the "restless" and although "pain" can be part of it, without the urge to move it's not certain that you have RLS.
As regards treatments for RLS, there are recommended "first line" treatments. These are the medications that are first tried for it. If these first line treatments do not work, then other treatments will be tried.
The medicines you have tried so far are aimed at reducing pain, not RLS. None of them are first line treatments for RLS. Mild painkillers like paracetamol and ibuprofen will have no effect on RLS.
Opiates such as codeine can help reduce RLS symptoms, but are not first line treatments. Opiates are more often used if first line treatments have failed. Being given codeine i.e. what's used if other medications fail and it not working might suggest that you don't have RLS.
Really, you shouldn't have been first given codeine for RLS.
However, the failure of codeine to help still doesn't totally exclude the possibility of you having RLS, but it does lessen it. This is because the opiates prescribed for RLS are usually more potent.
This brings us to Pregabalin. Pregabalin IS a first line treatment for RLS. It is actually an anticonvulsive drug used to control epileptic seizures, but it is also used for other things including RLS, but also nerve pain and anxiety. There is also some evidence that for some people, Pregabalin may help with fibromyalgia.
If you do take Pregabalin and it works, then this doesn't necessarily mean you have RLS, it could be your pain is nerve or neuromuscular pain.
It does appear that not enough may have been done to demonstrate the fifth criteria for RLS, i.e. that all other explanations have been excluded.
Overall, it appears possible that RLS is not the correct explanation for your pain. If it is correct then it appears, to date. that you have not been give the recommended treatment for RLS.
I can only suggest that if you have not had the RLS diagnosis confirmed by a neurology specialist consultan, presuming you live in the UK, then you request a referral to a neurologist. Unfortunately this could take months, unless you're in a position to see one privately. This could cost you, depending on who it is up to probably no more than £200.
In the meantime you can try the Pregabalin and because of your anxiety and insomnia you could request a benzodiazepine or "Z" medication. Clonazepam is commonly prescribed for RLS, it aids sleep and also has muscle relaxant properties, but it has a very long lasting effect. Zopiclone is shorter acting.
Finally, I cannot say, from your description, whether you really have RLS or not. There are things you say that suggest it might not be, but I can't say you haven't.
Neither can I say with any certainty, but you may have Fibromyalgia rather than RLS, or some other neurological condition. If fibromyalgia, none of the treatments you mention are really appropriate.
I’ve always been certain that I do not fit entirely with the symptoms of RLS, however I feel like because I’m young many doctors are trying to dismiss my pain.
I went to the doctors again Wednesday and I’m having another X-ray on my knees and I’m having bloods so hopefully I’ll be a step closer! X
Hello, I'm sorry to but in but you mention having another xray on your knees. Does this mean you think there is a connection between your knees and the restless legs? I ask because I am in the same position as you at the moment.
Have the doctor do a serum ferritin when he orders blood work. If the doc says the result is normal, ask for the number. In RLS the ferritin needs to be above 100.
Ive had rls for over20 years but not the symptoms you have. I have no pain as such but an incredible horrible urge to move my legs. I was told by a pharmacologist to try no more than 6 to 8 mgs of codeine as for me too a larger dose didnt work. I buy boots paracetamol and codeine 500 and 12mgs and cut them in half. This however is not a solution as you are very young. See another doctor, maybe with more experience of rls. Try drinking a coffee when you start having symptoms.It works for me. Also the usual blood tests and magnesium. Good luck, I feel for you
Manerva has given you an excellent, detailed response. As he advises, you may not have RLS. The severe pain could be something else, like fybromyalgia or neuropathy.
However, the fact you only experience this pain at night is probably why your doctor has diagnosed RLS.
Pregabalin is used for nerve pain in the treatment of other neurological conditions so it may well provide you with relief. It takes about 2-3 weeks to be fully effective. Side effects ( if you experience any) like dizziness and increased appetite tend to settle after 2-3 months.
I hope it starts to work for you and you are able to get some relief from the pain and some much needed rest.
I am 58. Had it all my adult life but was live able til my kidneys failed due to spinal cord injury. I am on hemodialysis when is a even bigger cause. Both my parents had rls. I a fighting for help every day. Just stick with this site. It helps to talk to others that truly understand and have a lot of previous experience Just don’t give up and always remember this is a true medical condition. You are not crazy in any way. Make sure you do research also and educate every dr you come across. There are tons on drs that have no idea what rls is or how severe the symptoms can be.
Nightime Pain is something I would rather deal with than the heebies as I call them. My doctor was prescribing ms contin (morphine sulphate) for sciatica. He suggested trying that along with my ropinerole and together they work. Separate they don't. I get 5 to 7 hrs of sleep almost every night.
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