First of all thank you for all of your replies to my posts. It really does make a difference knowing that you are not alone in this hell.
Well folks, hospital was a waste of time although I stood my ground and told them how bad things have been for me. Sadly I only saw a nurse practitioners who in her words is ‘not a prescriber’. Don’t get me wrong, she was lovely, took time to listen to me when I said how desperate I am but in the end there was nothing she could do.
However, I did cry a bit, which is totally not me, and I don’t know if it was that but I’ve got an appointment next Wednesday to see the head of the department so I’ll jxxx have to want and see.
With regard to other meds I have quite a complex medical history and am on all of the usual heavy hitters - gabapentin, pregabalin, tramadol, amitriptylline, you name it and I take it!
So, yet another night of no sleep. I don’t mind telling you that I’m getting ever so slightly desperate but I’m sure you all know how that feels.
Once again thanks for your replies, it means a lot ❤️
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bellalurcher
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Hi just very quickly as my battery is about to go. Amitriptyline will make things worse for the vast majority of us with RLS. Was it yesterday you said you had had ZERO sleep for 3 nights?
Have you has any sleep now ? I was hospitalised after 50 hours of no sleep. X
Although it may be of no help, a flat refusal to prescribe Zopiclone seems unreasonable. My GP had no hesitation in prescribing it, BUT would only give me 10 tabs, not to be taken every night and no repeat prescription.
Have you asked for Cloanazepam?
As regards your medication, as Pippins says, amitriptyline can make RLS worse and additionally, Tramadol can cause augmentation.
I appreciate that this information might not help, because you need something for the fibro and getting them to switch you from Tramadol to another opiate may be difficult.
There's several questions your post raises for me about which I'm not clear.
Are you on both gabapentin and pregabalin, you only need one of them. What dose are you on?
What was gabapentin/pregabalin prescribed for RLS, fibro or both?
Gabas can help with fibro, so if they're effective, amitriptyline is redundant.
Apart from medications what other treatment have you been offered for your fibro, e.g. physiotherapy? CBT?
My other questions are about the management of your condition(s). When you were at the hospital which actual department do you attend? Is this for your RLS or for your fibro. I would imagine the appropriate departments for the 2 conditions are different. RLS is a neurological condition. Have you seen a neurologist?
When you say "head of department" do you mean a doctor e.g. a consultant? You can ask to see a doctor if you are dissatisfied with a nurse. The nurse can ask a doctor to prescribe.
What should happen is that the hospital consultant. rather than giving you a prescription directly, should inform.the GP what to prescribe, thus giving the GP no reason to refuse it.
If you've not seen a neurologist it would be better if you did. A neurologist may be more knowledgeable about RLS and may agree to switching you to another opiate if necessary.
Hiya, I passed out at about 6am, woke up on the kitchen floor with my hubby in a complete panic. Once I said I was ok (I really was) he bundled me off to bed and I’ve had 3 hours sleep - I was beginning to think it only existed in fairy tales.
I actually attend a Parkinson Clinic as I also have an essential tremor (there’s nothing essential about it believe me) but they also look after people who have rls, pmld etc.
Me and a few of the younger patients ( who are all in our fifties) call it the Shuffle Club. Not in a horrible way, honestly, but most of us have some sort of difficulty getting around for whatever reason.
I’ll be seeing the consult next Wednesday and hopefully I will be having a total review of my meds but you know what it’s like. Interdepartmental communication seems to be non-existent, and I also go to a different hospital for other conditions. If I was a horse they would’ve shot me a long time ago!
I’ve got a lovely bruise on my hip after my acrobatics in the kitchen but I’ve had a couple of hours sleep so I feel a bit more human and less like an extra from the Walking Dead.
Thank for all of your advice and support. Having found this forum has helped so much. I was beginning to feel like I was the only person in the world who had rls like this.
Get off the Ami ASAP. If it is for mood for Fibro, then you are going to have to struggle to get an antidepressant to work and not effect RLS. If it is for pain then there are other drugs that will kill the pain, help RLS and not make things worse.
Tramadol may cause augmentation but not very likely compared to other drugs.
Unfortunately a nurse, no matter how good a practictioner, will not be able to prescribe the drugs you need and I wonder are you being seen as a neurotic patient - and will therefore be palmed off without getting the help you need.
Read as much as you can about RLS - go armed with info:
Be careful with tears, yes they can show the extent of the suffering but many clinicians will see you as a depressed and treat you as such. Its terrible that you can't express yourself fully at appointments but you need to look at yourself from the Dr/clinicians eyes and lack of education and time!!!
What are you taking now and have you tried gentle iron - on an empty stomach with some Vit C in the evening can bring a lot of ease as can avoiding alcohol, caffeine, sugar, dairy and gluten.
Hot baths, yoga stretching and sex are all also very helpful. I have stood in showers til the water ran cold for relief and waited patiently for the water to heat up again so I could have a bath - at one stage I was on 5/6 showers or baths a day! The sex is great - exercise, stretching and distraction. It has been known by many of us that orgasm helps so if you have no partner, you may take things into your own hands so to speak!!
Also, have a bitch on here - give me a shout via PM if things get very tough - troubles shared really helps. There are many of us who have contemplated suicide such is the horror of RLS - HOWEVER - it is treatable and an easier life is achievable.
Both been used by many on here with food effects. Take care to read up well and be aware that neither are legal in the UK but can be easily sourced. The Kratom thread has links to other info and has all the Kratom info you need so read up well.
Amitriptyline is known to make RLS worse. You can count on me for proof too. I took a small dose for unrelated nerve damage and it made my legs go crazy. Go to RLS help.org under Treatment and you will see all the meds that help and those which can cause worsening symptoms..
"Go the rls-help.org under Treatment...". I was going to suggest the same. Rls-help.org is not a slick website, but has top info from a top RLS specialist, Dr. Buchfuhrer. It has a long list of medicines, but have a look through it to get some idea and read more and in more detail about the meds you have been prescribed and their related meds, it may help to avoid getting new meds prescribed that also make your RLS symptoms worse.
If the medical route isn't helping, why not try the diet route? Some of us have had great success with anti inflammatory diets, most of which are low in carbs. Such a diet could help with many conditions like other neurological promlems (fibromyalgia, migraine, MS, Parkinson's and Alheimer's, epilepsy, depression and anxiety). Also the low carbs will help diabetes, obesity and cardiovascular problems. The diet route costs very little and the only side effects are good ones.
awww you're welcome. I was fast asleep & woke up about 2am with a terrible attack of RLS. Its ok during the day -but if I've got my feet up & my laptop balanced on me it start hurting
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Waste of my time again 
I can’t go on
Nothing works as good anymore! 
Am I right to be worried? 
