Hi
I’m 14 months off amitriptyline and struggling with a raft of psychological and physiology symptoms. One of the worst is an inner agitation/edge/restlessness. It starts with a horrible nervy sensation in the shins or calves of both legs. It then then generates the horrible restless and edgy feelings.
I don’t have the need for constant moment of the legs, but the restlessness feeling is still ghastly.
Is this a common variation?
Thank you.
Hello,
Sorry you having a horrible time of it. I get those edgy, 'you want to shake your limbs' sensations in my arms when my RLS is not under control. I call it a 'fizzing' sensation as it's really hard to explain. Does moving help relieve that sensation? Are you taking anything to control the RLS at the moment?
Hi
No, nothing at the moment. The restlessness thing is only of withdrawal symptoms I’m dealing with.
Physical
Shakes
Nerve pain in legs
Horrible flatulence
Insomnia
Mental
Depression
Agitation
Restlessness
Anxiety/Confusion
Hi Steve, have you been to see your GP to get help?
Hi,
Sorry you’ve got a lot to deal with. Your leg symptoms seem more related to nerve issues than RLS in my limited experience. Coming off any drug which has protected you from pain or anxiety can be a difficult time but my advice is to take it slowly and don’t panic. Meditation can be very effective at allowing you to get some separation from the worrying things you are feeling and help you understand more about them, which can help to keep them in their place while you adjust. There are good online apps like HeadSpace.
Hi again.
My case is v complicated. 61 years old, chronic use of ADs etc. I stopped amitriptyline Sept 19, then nothing for 8 months. Tried to reinstate another AD May 20 (venlafaxine-one I had used previously with some success) Unfortunately this didn’t work either so now my CNS and neurotransmitters all over the place. Seeing Doc on 17th to review.
Sorry for my ignorance, but what's an AD?
Anti Depressant
Thanks Lottte.
Hi Steve, I'm not clear whether you have RLS. Or you are asking for help with the things you've listed but you don't have RLS.
If you do have RLS, are you aware of the issues with ADs and RLS worsening? I don't want to waste your time with stuff you already know about. Also, RLS is made worse by stress and anxiety and it seems that these aren't quite under control at the moment. Munroist's suggestion of meditation and Head Space is a great one, as is Mindfulness, for helping calm your nervous system down. Could you discuss this with your GP and whether you need ADs? If you do, there are only a few that might not aggravate RLS. Trazadone is one of them but it's not a definite.
I think your doctor would like to know about the shakes, nerve pain etc. in order to help there. It's good that you have an appointment Tuesday as I think a qualified professional will offer much better advice on this than me.
In the meantime, perhaps you could try taking something that doesn't aggravate RLS for the pain, and maybe some herbal remedy for the anxiety and restlessness, and distract yourself with things that you enjoy to get you through until your appointment.
Sampsie's reply is helpful, thank you. I've experienced some of what you have talked about but nothing like as intense. However my experience is that some of it is what you might call organic or real (in fact all pain is real!) and some may be escalation of worries and fear about what the pains and symptoms mean and how you will cope which can create a vicious cycle of more anxiety and hyper sensitivity making things worse. Only you can really identify which is which and it's very hard not to project into the future. I can only say what's worked for me which is to focus on where I am now, and watch for a while how things can change, both for the better and the worse occasionally, but try to cope with what's happening now and forget the rest. Be realistic .. if it hurts it hurts and you shouldn't deny that .. but also watch it and see if it moves and changes. Sorry if this sounds vague and wishy-washy but the mind is incredibly powerful and can either make things much worse or can also help to recover steadily or cope better with what you have. I also stopped taking medication recently, albeit very carefully with lots of pauses, but I am glad I did and I would hope it's the right thing for you. Best wishes and good luck with the doctor.
Hi Steve,
Did you reduce the Amitriptyline slowly over months? What you’re describing sounds like withdrawal symptoms from the AD. Severe restlessness is the main one. The NHS advice says this can last months.
I suggest you speak to your GP to discuss whether there’s anything you can take to help the withdrawal symptoms- maybe clonidine?
Thanks Both. Very helpful and empathetic. I’m sure I’m having AD withdrawal symptoms. (Two withdrawals in two years) Amitriptyline- one it for a year, but was a disaster. Came off on 25mg with GP advice, but obviously too high a dose. RLS-get very confused by relationship between RLS, akathasia and restlessness. The inner agitation/restlessness I have is probably typical of AD withdrawal, but get these awful nervy sensations emanating from both legs, and these seem to start ball rolling with the restlessness/edgy feelings.
Venlafaxine (Effexor) is a nasty drug with a particularly hard discontinuation syndrome. I had one friend that came off it using a "Prozac Bridge". My depressive episode was so many years ago - none of these drugs were even invented yet! It was a black hole - I never sought help but I remember reading a Natural Health Book and they recommended a large dose of B Vitamins. The depression lifted after 4-5 months. I still look over my shoulder to see if it could return. I still take the B Vitamins - daily.
It sounds like the symptoms you describe got worse when you withdrew from amitriptyline. If this were RLS, it should have improved not got worse. Hence they are probably withdrawal effects.
If you don't have an "urge to move" then that also suggests this is not RLS.
You may find this link helpful
irlssg.org/diagnostic-criteria
Thanks again. Am I right in thinking that akathasia in general is distinct from RLS? It’s a funny one, as RLS seems to be associated with use of c certain ADs, while akathasia one of the many symptoms linked to AD withdrawal.
Akathisia is an aspect of RLS, but there's more to RLS than akathisia.
Simple akathisia is more often associated as a side effect of some drugs e.g. older anti-psychotic drugs and some ADs such as sertraline.
"Restlessness" is listed as a withdrawal effect from amitriptyline, but this isn't necessarily the same as akathisia. It may be nervous restlessness, along with irritability and anxiety.
The principal defining characteristic of RLS is the "urge to move" which is difficult to describe. There are also other things that make people feel they need to move such as shifting position to ease a discomfort or nervous restlessness or even habits such as foot tapping.
Having expereunced all of these, I can tell which is which, but I can only describe the RLS urge to move as being just that.
The other distinctions between simple akathisa and RLS are as the RLS diagnostic criteria describe.
SO
Even if the urge to move is felt in the arms, it usually starts first in the legs and/or is worse in the legs.
It can occur earlier in the day, but usually occurs at night or is worse at night. If it does happen in the day, it usually will have started only at night.
The urge starts when relaxing, sitting or lying down and it is relieved by moving.
ALL of these criteria have to apply for the diagnosis of RLS to be confirmed.
Thanks. I don’t have the “urge to move” as such. I’ve had a combo of paresthesia, numbness and nervy sensations in both lower legs for years. I guess it’s more in the area of agitation, restless and akathasia. It’s difficult to describe it, but it’s the “nerves on edge” type feeling if that makes sense. In my case, the sensations are also mirrored in the head. This then seems to create the edginess, restlessness. Hope that makes sense.
Yes that does make sense.
The sensations in your legs may be a neuropathy
Unfortunately not. I say unfortunately as that would be something specific, treatable. I went to a neurologist about two years ago with these symptoms and he found no evidence of that. Didn’t dispute the feelings, but no evidence that nerves were not functioning etc
RLS AND ANTIHISTAMINES
NO RLS last night puzzling
Is this RLS? 
How To Become An RLS Expert Yourself
