Hi guys. I was recently diagnosed with RLS just under 12months ago. I also suffer with long-standing mental health difficulties. After reading many posts on here it seems people suffer with this for years. I was under the assumption that this condition would not last long. However it seems people have been living with it for years. Am i wrong to believe there will be a quick fix? My sleep is non-existent and the restless in my legs is so bad I actually feel like chopping them off. I cry most nights due to not being able to sleep. Thank you for listening.
For RLS I have been given ropinorole, however ever having to keep increase dose due to tolerance. I find it does help with RLS but not sleep.
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Freegaza786
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Hello Freegaza, welcome to this forum and I hope you find it helpful.
I'm sorry to say there is no quick fix for RLS.
Some people suffer from RLS symptoms caused by some other underlying health problem. This is called "secondary" RLS. If it's possible to fix the underlying condition then the RLS may be fixed. However it's not always possible.
However, a lot of people suffer from "primary" RLS, which is inherited. Some things can make this worse, and some things can make it better.
It is a terrible condition then, that it is lifelong.
What's worse, I'm afraid, is that most doctors are very ignorant on how to manage it.
The good news is there's lots of useful information and good advice on this site so you can learn how to manage yourself, (and your doctor) with the RLS.
The very first thing your doctor should have done is a blood test for ferritin. Simply put, if your ferritin is below 75ug/L then you should start on an oral iron supplement.
Secondly, your doctor should have discussed if you're taking any medications which might be making your RLS worse. The main drugs which make RLS worse are antidepressants and sedating antihistamines. There are many others however.
Third : things you eat or drink can make RLS worse alcohol, sugar added to drinks, sugary drinks and foods with sugar in them should be avoided, e.g. cakes, biscuits, chocolate etc.
The drug your foctor has prescribed, ropinirole, is a dopamine agonist (DA). The DAs are one of two kinds of medicine recommended for RLS in the UK. Your Dr doesn't appear to know about the others. The others are called "alpha 2 delta ligands". (A2Ds).
The DA s are quite good at relieving symptoms, that is at first. They don't help so much with sleep
The A2Ds can be effective for symptoms, but are much better at helping sleep. They are called pregabalin and gabapentin.
I'm not sure if you are gaining tolerance to the ropinirole, but it's very important not to keep increasing the dose. This is because of a very common major complication caused by the DAs and the higher the dose the greater the risk. The main complication is called "dopaminergic augmentation". Another is called "Impulse Control Disorder".
I suspect your doctor doesn't know of this.
Internationally, DAs are no longer recommended as a first treatment for RLS. Pregabalin or gabapentin are. They do not cause these complications.
There is some very detailed evidence based information published to guide GPs in managing RLS. It is published by the National Institute for Health and Care Excellence (NICE) which you doctor will find useful if you refer them to it.
That is a lot of information, more ever provided by any health professionals.
By what you have said it looks like I have secondary RLS.
I was taking Venaflaxine, Mitazipine, Pregabalin, and Lorazepam. All to manage my severe anxiety PTSD.
I had a prodoxical reaction to Lorazepam, which basically turned me into the Incredible Hulk. I come off them, then Pregabalin, then Mitazipine.. however stayed on the venaflaxine.
Basically after years of listening to health care professionals about my anxiety, I learned research and learning to be proactive and managing it yourself improved my condition enormously. On top of gardening. Medication helped but wasn’t the answer.
However this is when the RLS started. I already had issues sleeping but on top of the restless legs my sleep is now non exist.
I agree you, and hoping being in this forum and being proactive may relive my symptoms. Better then any health care professional. All I know is I wouldn’t wish RLS on my worst enemy. I am at a point where I’m crying because I cannot sleep. I bet most on here have already been through this beginning stage. On top of my anxiety it’s a real struggle.
Thank you so much for talking time out and sharing that information with me. Thank you
Manerva provides some pretty good advice. My recommendation is to check each medication or supplement that you ingest to see if it might make rls worse. Antihistimines and antidepressants seem to increase RLS. Also keep a journal to see if you can identify what might make it worse or better. You might want to check out the restless legs foundation. rls.org/ I have periodic limb movement disorder which is a sibling (as far as I can tell) to RLS. I just joined the foundation and there is alot of good info. Do alot of your own reading. Most doctors, even sleep specialists don't seem all that up to speed on this awful thing.
You have been given excellent advice for your RLS. I just wanted to give you hope.
You will find a way to manage it and have a good quality of life.Hang on in there .Most of us have been where you are now and have come through. Another alternative to Alpha 2 Delta Ligands is opioids. I successfully useTramadol.
Also I would suggest some psychotherapy for your anxiety and PTSD. If you get help for these you will be much better equipped to deal with your RLS.Good luck. X
Good that you came off mirtazepine, it does make RLS worse. I suspect venlafaxine does too. Trazodone may be a better alternative, it's known to be safe for RLS.
Pregabalin however is known to promote sleep and can be effective for RLS, it might have been better to stay on that. It won't be fully effective whilst still taking mirtazepine and also you would need a sufficient dose i.e. at least 150mg.
Please do get tested for ferritin, also vitamin B12 and vitamin D. Correcting any deficiencies in these can improve RLS.
I’m sorry to hear that. I know how you feel. I’ve been suffering with RLS for year. Try sleeping with a pillow between your knees while keeping the legs slightly straight. Massaging the calfs with heat rub lotion helped me to relieve the symptoms enough to go to sleep. Try this and see how it goes. Also found that massaging the calfs with the vibration plate, eased the symptoms and did not returned over night.
The only "quick fix" could be Iron supplements if you have a Ferritin level below 50. It was for me - dramatic change in a week supplementing with ferrous bis glycinate chelate. My Ferritin level was 49 (docs said normal - get an actual number!).
If you have trouble getting off the Effexor (venaflaxine) - ask about a strategy called the Prozac Bridge. Essentially take both together - get off the Effexor then getting off the Prozac is an easier chore.
One more bit - just additional info on anxiety treatment...
Thank you everyone for you information, truly a lot to taken in. From my previous experience and listening to many on here, the way forward seems to be myself being proactive and not relying on the health professionals to ease my symptoms. I am yet to be reviewed again by the Neurology Team which has been delayed due to covid. Symptoms did get worse once coming off Pregabalin100mg in July 2020 however was having severe side affects to the drug just like the Lorazepam.
I really thought I was on my own and nobody understood what I was going through, the mental torture of the RLS and effecting My sleep. This group has gave me more hope and determination to pick myself up, more then any health care professionals. The advice of keeping a journal is good, I started that 2months a go and was advised against it by the consultant as ‘it would not achieve anything’. Thank you for the reassurance it was the right thing to do.
I will update you guys when I have made further progress.
I know everyone says it. But sincerely I think this group has mentally saved my life so thank you .
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