I have suffered with RLS for 20 years and have tried all sorts to manage this. My only medication was Fluoxetine which I know makes it worse, and I have been taking it for 30 years. My RLS has become intolerable especially during the last 3 years. I suddenly developed nerve damage 2 years ago and was put on Gabapentin which I take 3 times a day along with 1 amitryptaline. I take magnesium supplements and vitamin D daily. I often find myself going through the medicine cabinet trying to find something else that can help which is very frightening because its getting out of control. I'm 53 and struggling to cope I look after my grandson during the day and work during the evening. My legs constantly ache and also sometimes my arms too. I have considered coming off all my meds but am too scared because the nerve damage pain is absolutely excruciating. Does anyone have any other advice or help they could give I would be very grateful. Short of chopping off my legs I seriously have considered I don't know what else to do.
Desperate for some relief : I have... - Restless Legs Syn...
Desperate for some relief
Hi Katie sorry to hear this.
I can understand your desperation and why you might consider chopping your legs off.
There are four main things which need to be considered in the managment of RLS in order of priority
1) Iron therapy
2) avoidance of aggravating factors
3) medications
4) managing the mental, emotional, social and spiritual fsctors involved in RLS and its consequences.
Your doctor may be of some help with 1), 2) and 3).
1) Your doctor should do blood tests for serum iron, transferrin saturation (TSAT) ferritin and a "full blood count".
Note that a low serum iron and TSAT ( less than 16% ) indicates general iron deficiency. If haemoglobin is also low this indicates iron deficiency anaemia (IDA) a cause of RLS. This iron deficiency needs treating.
However in the absence of IDA or general iron deficiency it is recommended for people with RLS that if FERRITIN is less than 75 then an oral iron supplement be started. The aim being to raise ferritin to at least 100. This could take months, is no immediate solution, but should be enacted anyway.
You may need more information about taking oral iron. I'd advise against taking a prescribed iron unless you have IDA.
2) All aggravating factors should be identified and if possible avoided.
I'm afraid this a significant factor in your case and may cause you some problems
Aggravating factors includes dietary issues, gut health and inflammation. However the main factor is medications.
The main medications aggravating RLS are antidepressants.
Fluoxetine : this will be a factor in your RLS. How much is hard to say if you've been taking it 30 years. On a personal note, whatever the circumstances my opinion it is that it is appalling that anybody should be left taking an antidepressant for 30 years.
Amitriptyline : recommended for chronic pain is an anti- depressant and makes RLS worse. Neither, actually, is it a pain killer. I suggest you stop taking it. Don't stop suddenly, wean off it gradually.
3) Medications.
The recommended first medical treatment for RLS is an alpha 2 delta ligand. This is either pregabalin or gabapentin.
These are not effective for all cases of RLS, but are for the majority.
The effectivenes partly depends on the dose and WHEN it's taken. A typical effective dose for RLS is 900mg taken AT NIGHT.
I understand that for neuropathic pain it's taken 3 times a day. This is appropriate for nerve pain, but not for RLS.
For example if you were taking 900mg a day. A single dose of 900mg at night can help RLS, but 300mg isn't going to be as effective.
The maximum dose of gabapentin for RLS is 2700mg. For nerve pain 1600mg 3 times a day.
Depending on your current dose, this may leave scope for increasing the dose, if only for the evening dose .
An issue with gabapentin is it's inconsistent absorption properties. A way round that is to switch to pregabalin. This is, in effect, the same thing, but it's absorbed better.
In a small number of cases gabapentin can cause a phenomenon known as augmentation. If this were the case this could be a major problem for you, so look at other things first.
When RLS doesn't respond to the first treatment for RLS then it's accepted that an opioid can help. In fact some might say that an opioid should be the first treatment, it's only because of the issues associated with opioid use that really prevents this.
Some doctors will agree to prescribing codeine for RLS particularly if there is pain. Some will prescribe it for nerve pain. It's not however particularly good for either and its risks may outweigh it's benefits.
Better for RLS is a low dose of a more potent opioid, ( codeine is weak). Oxycodone or methadone are commonly used, more recently buprenorphine is becoming more accepted.
Although I'm no doctor and certainly no expert on opioids, based on reports I've read in this forum, buprenorphine seems a good option for you.
SUMMARY
Medical treatment -
Wean off amitriptyline.
If you can wean off fluoxetine
Blood tests for iron deficiency and iron therapy.
Review doses of gabapentin/switch to pregabalin.
Explore the possibility of an opioid.
In addition to the medical treatment I also suggest you seek psychological treatments for
Long term depression
Stress management
Coping strategies for pain and for RLS.
I hope this helps.
Wow thankyou very much that is an awful lot to take in! I appreciate your help and will explore all of these options. I forgot to mention that I am also going through the menopause and there are lots of aches pains etc which could be down to that as well which isn't helping. It's very difficult to get to see a go properly still with way things are at the moment but even if I were to it's hard trying to get enough time to go through all of these things. I shall start at the amitryptaline though because I am not really sure why I am taking them for. Thanks again for a listening ear it makes the situation a bit more bearable knowing there are so many others and also forum's to vent. I will check back soon and let you know how the journey is going. Thank you
Amitriptyline is often prescribed for nerve pain or joint pain. I don't think it has any actual pain killing properties.
The theory I believe, is that it tackles some of the psychological issues associated with chronic pain.
The recently issued UK national guidelines for chronic pain now say that drugs like gabapentin, opioids, muscle relaxants and others should not be used for primary chronic pain only antidepressants.
Don't worry, this doesn't apply to nerve pain or RLS.
Let us know how you get on.
I like the way you laid this out.
Oh Katie, you have been badly let down by your doctors.As Manerva has advised, the fluoxetine should have been reviewed decades ago. It makes RLS worse, as does the Amitriptyline.
There are antidepressants that are RLS safe.
You should try to see a knowledgeable neurologist who can review all your meds and your bloods and prescribe alternatives.
It is going to take some time to reduce the meds that worsen RLS and find meds that will control your symptoms.
Follow Manerva's excellent advice.
Thankyou Jools I would be happy to see a neurologist to have a proper chat. Unfortunately because of the pandemic I waited a whole year to be spoken to not seen by a consultant by which time my nerve pain had subsided and she released me from her care. However I can still contact her if symptoms reoccur so first thing Monday I will be contacting her. Thankyou for your advice
Hi Katie,
It is so debilitating isn’t it. I have found not too many medical people understand RLS (and I’m medical).
For me Sifrol was an initial game changer. I’ve tried absolutely everything. I finally saw a pain specialist and was put on Buprenorphine - that changed my life. I’ve had bad RLS for 28 years. Worse in pregnancy and menopause!! I also find diet is do important too.
I hope this helps.
That's some really positive news Aussie I'm glad you have found a solution and makes me feel better knowing that there may be some help put there. It's very debilitating and very very frustrating.
Thankyou for your response there is a light at the end of the tunnel 😊
Hi, can I ask what dose of sifrol helped and are you still taking it without any side effects?
Hi Katie, I’m sorry to hear that things are not going well for you. I totally understand everything you are saying. I have tried everything too. Last year I saw a geriatrician with a special interest in RLS, he suggested Temgesic. I was totally against that as it’s an opioid. But after years of trying everything else my GP suggested I give it a go. Honestly it’s been life changing. It’s fast acting and short lasting . The weight I had put on being on lots of other meds just fell off. I feel 100% perfect on it. It’s 0.2 mg daily I usually take it about 6 pm. Well worth giving it a try. I’ve had RLS for 38 yrs… I’m 51 yrs old. I feel great now, thankfully
Hi Poppip, I'm envious that you have a GP knowledgeable enough to suggest Temgesic. I have now approached two GP's, both are against prescribing it, on the basic that it isn't licensed for RLS. I will keep trying!
Not prescribing something something for RLS because it's not licensed for RLS is, in my opinion a pathetic and implausible excuse
The first treatments recommended for RLS and recommended in UK national guidelines, i.e. pregabalin and gabapentin aren't licensed for RLS either. They can be prescribed "off label". They are frequently prescribed for that.
It is quite legal to prescribe drugs off lavel as long as they're licensed for something.
Your doctor knows this!
That's amazing news Poppit. So glad for you. I think I shall need to take these responses to my GP because I honestly don't think of the awful impact it has on day to day life. Good luck to you and thankyou
Further to some other replies. Your Dr WILL also be able to help with the emotional etc aspects of RLS, mainly by referring you on to someone else likely these days to be in their team, if you both think it is appropriate.Amitryptine IS a sort of pain killer or at least an adjunct to other pain killers, as well as its other actions. It is particularly useful for nerve pain.
But sadly it does make RLS worse.
You need medical advice to stop a tablet, not forum advice.
There are other medicines nowadays which might have a beneficial effect without the downsides.
I would suggest you raise all this with your Dr as well as whether it might help you to alter timing of doses.
Hi AlisonThanks for your advice I would never just stop taking medicine unless I spoke to my Dr first anyway. Getting an appt is hard work these days but I'll get on the case tomorrow
I know it’s so hard getting appointments these days but they do keep saying the nhs is still there for us all so hope the practices can find a way to accommodate us all.Also hope you are able to be found a decent alternative to amitryptiline.
I have nerve damage too and am sure it makes RLS worse.
Wishing you all the best
Just as an extra note to the more important advice from manerva and others I have been trying a low glutamate diet and it definitely helps. You will have to look it up as it’s a bit complicated but cutting out all free glutamate for good and cutting down on bound glutamate at night really helps lessen rls symptoms. Red rice and courgettes my mainstays!
Hi Blue that's something else I need to look into as I'm not a great eater, I skip meals because sometimes I'm not hungry never eat breakfast etc, I substitute some meals with bananas or grapes lol. I have a gut condition which means skipping meals flares it up so its swings and roundabouts. I'm glad this has helped you
Well I’m currently having coffee only when I get up, scrambled eggs in butter with peppers and cucumber for brunch, red rice and seafood with courgettes for evening meal. Two small glasses white wine. It really helps although rls still there. I take magnesium (lots) and over the counter cocodamol at midnight then sleep through to 8. Not sure how long I can keep this going but it is definitely better.
That's amazing hope it lasts for you
The only thing I can suggest is to keep your legs and feet as cold as possible. I go bare foot at home and only wear sandals when I go out. I find it helps for me if I put my feet in ice water for 45 mins before bed, get them painfully cold. I sleep with my feet and lower legs uncovered and with ice packs between my feet. I use puppy training pads under the ice packs as the condensation makes a wet patch. I keep a bowl of cold water in the bathroom so i can paddle when my feet get hot or ache and i sit with my feet on a pet cooling pad. I am on Gabapentin and steroids for another autoimmune condition. I'm not sure whether things would be worse if I didn't take those or not. I also have hot feet syndrome. My feet burn terribly. The RLS and the hot feet are connected. The cold treatment works for me and it might possibly work for you. You could try it and see?
Wow Carlette your so similar to me I have hot feet and don't wear anything on them when in the house and find myself looking for cold spots tiled floors etc and also I go outside in the wee early hours and just stand on bare concrete and it does help! I haven't however tried the ice packs but will certainly give it a go. My husband also suffered with hot feet and we never have anything over our feet and legs at night and also we have a fan on all night (now my husband can't sleep without it on lol) thanks for your advice I will certainly try these
Yes, we are similar. I'm sure soaking your feet in ice water would be really beneficial. When I do it I can almost hear the sizzle😊. Paddling in cold water during the day help a too. Good luck.
I'm deffo giving it a try thanks again
Hi Katie,
You have some amazing advice on here already. I just wanted to quickly chime in to say that magnesium can counteract the effects of Gabapentin. I’ve been doing an elimination diet for a year now and am finding that sugar and caffeine are my big triggers which makes me the most sad. But if I avoid those two things I’m finding a balance. Hang in there. The people on this site will help you find your path forward. ❤️
I have added 3 grams a day of skullcap with the most success I've ever found. I also take 50 mg-150mg per night. The skullcap is a sedative and may be worth a try.
Hi Roy, that's something new to me I shall look into it though I'll try anything lol thankyou
Hi Jimbo you're certainly right the advice I have had so far is amazing and I am so very grateful to everyone for helping. I really am at the end of my rope my poor husband has to tolerate me but also is very worried about the impact this is having on my life. However it's impossible to find a balance with medication and natural supplements everything seems to counteract in one way or another 😔 it's hard work! Lol. I'm happy that you're getting some relief. Stupid as it may sound sometimes when I'm up in the night a cup of coffee and some Paracetamol or Ibuprofen helps but not all the time. Good wishes to you and thanks for your advice
The fact that your arms ache and you probabley have movements also could raise a red flago. Look at Fragmented Myoclonic Movement Disorders as a different direction
Thankyou Bill I will havw a look at that
Have you tried Ropinerol I've been having it for 5 years and with great success
No not yet I'm trying to get a gp appt but it's still awkward at my surgery. Plus my GP told me that I couldn't have any med for RLS because I was taking Fluoxetine? So yeah am on the case with this
Katielove53 - In addition to the excellent suggestions by other posters, you may want to consider kratom if it is available in your area. It has been massively helpful to me and others in mitigating RLS symptoms. You'll find a number of postings about it on this site, or you are welcome to message me and I'd be happy to share my experience.
Best wishes for sleep-filled nights and calm days.
Thankyou Doug I will have a look see
Katie, just one last thought.
If you choose to stop taking amitriptyline, this is your choice and nobody should attempt to coerce you into continuing it.
However, it would he sensible to discuss it with your doctor as they may be able to give you good reasons for not stopping it.
Do bear in kind that doctors can't be omniscient and it's not uncommon for a doctor to have no idea that antidepressants can make RLS worse. It's not necessarily their fault.
It's always a good idea to acquire some a knowledge about any condition you have and its treatment for yourself.
That's my experience as a patient. Doctors aren't always necessarily trustworthy. I'm sure that a doctor might disagree with me, but then a doctor probably would.
I can only say that if I had entirely trusted some of the doctors I've encountered, it's quite likely I would be dead now.
Manerva I don't have much trust in doctors my 6 month old baby died during open heart surgery 29 years ago and and to this day my husband blames himself for putting our faith in them. Saying that my GP is pretty good however getting to see said gp is difficult. I think I am taking the amitryptaline for my nerve pain but only when it flares up. Plus I don't think I need to be taking it so I have missed taking it tonight and will do a gradual withdrawal and see what happens. Will keep you posted on the progress
OK, I hope that goes well.
Well I didn't take my amitryptaline last night and can't believe that my legs were not a problem at all! I'm. Stunned lol. BUT instead I had really hot feet and legs so was still wandering around the garden trying to cool down lol but was a relief not having to deal with RLS for one night
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