Just surviving: Hi everyone, I am... - Restless Legs Syn...

Restless Legs Syndrome
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Just surviving

restlessstoz
restlessstoz
21 Replies

Hi everyone, I am writing this to try to get some order to the disorder that my brain has become. I'm feeling so sad, angry frustrated unloved, alone, 'oh what's the point', which bit can I hurt next. etc etc.

I'm so cross that after 15 years of RL I'm now at the stage where no one knows what to do next. I started with levodopa and that didn't do much so hey, let's add sifrol, and hey, that didn't work for long so lets add more of it, and then hey, if that didn't help much, lets add gabapentin and then more and more of that, and eventually when it becomes obvious- not by the neurologist but the support of the wonderful people on the forum, that I was augmenting on the sifrol/pramipexole, and possibly the tramadol and that the gabapentin was at such a high dose that over half that dose was probably not doing much good anyway except possibly wrecking my body; then lets remove all these drugs and see where we are then.

I tried fentanyl to no effect and the dose of Targin which gave some relief and some sleep my GP thought was too high (30 mg as suggested by Dr B) and therefore wasn't going to allow me to continue on it. Now he's prescribed clonazempam 2mg at bedtime which certainly has helped with sleep (I was going for 4 nights out of 5 or 6 with NO sleep at all and my job is on the line,) though now it's waking up that the difficulty!

Easier said than done! I've reduced the gabapentin to 400 mg, tramadol to 50 mg as required though not sustained release, no pramipexole, no baclofen (though what that was added for at all is beyond me (and Dr B!) ) In fact, I'm left high and dry with almost nothing/no-one to support the awfulness of life at the moment. I've taken the last dose of the SSRI I was on for 20 years and suffering from head-shocks but not intolerable, having decreased to 1 mg per day from 10 - 20 -over the years depending on circumstances and boy, there have been some hellish times that I've had to deal with.) I'm often in tears, feel very frustrated and angry, wanting to throw things, hopeless and wondering what the point of anything is. Usually, I'm very placid, the glass is always half full- at least, I'm kind and I'm thoughtful of others. I'm creative and love beauty and try to bring the same into other people's lives. Now though, I'm close to tears all the time, and wonder what the point of all this is.

I have my daughter who lives with me who suffers from Asperger's. severe OCD and eating disorder and has done for 20 years, and I want to protect her has much as possible from the roller coaster that my life seems to have become.

I need to be clear of the SSRI for a wash out period of ??? days/weeks before I can go back onto something else. goodness knows what that will/can be, I want to work out how much if any gabapentin I need if in fact it is helping my RL at all. I want to sleep but not at the expense of losing half the day. And I don't want to crying all the time or angry or wanting to throw things. and above all, I hate feeling sorry for myself like I seem to be doing.

I'm continuing with my meditation practice as that seems to bring some semblance of serenity to my life, even if it's just while I listen to the soothing voice of the presenter.

I'm on a waiting list to see a haematologist to try to increase my ferritin levels. I was on 75 and in spite of over 6 months of oral iron, am now only on 78. Given the public health system here, it could be a year before I actually get to see one, even if she agrees to support the request for an iron infusion.

I have read and re-read the info on the forum and wish I could magic some answers. I'd like to try methadone or try some cannabinoids but the chances of obtaining those are as likely as flying the moon.

Sorry to be so negative. I just had to let off some steam and I guess have some feedback that may offer some hope or understanding.. and maybe the feeling that I'm not as alone as I feel. :(

21 Replies
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blokie

I do feel so sorry for you it seems as if you are at your wits end with no where to go, please just hang in there at least you have told me and I will pray for you in anticipation that you are at your worst and things can only get better. Thinking of you all the very best.....Blokie.

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Manerva

I read from what you have written that you find yourself in a desperate and possibly hopeless situation.

RLS is one of your problems, but in perspective, I feel it's possibly not the main problem.

It seems that you are struggling with depression, struggling with your family situation as well as struggling with your RLS.

I read also that you are attempting to deal with these issues, but not getting the support you need from medical services and/or social support.

You ate right to seek out support from this, and other forums.

As regards your depression, it seems you need as much help with this as with your RLS and hopefully realise that medication is not the best or only solution, especially when it makes your RLS worse. Neither is meditation or mindfulness the only solution. Being part of a good community is also of great benefit. That's something I experienced in my twenties, but unfortunately lost. i have had numerous counsellors tell me that I need a social network since. I have struggled with it unsuccessfulky. I recently realised too, suffer from Aspergers. As does my daughter (who also has a severe eating disorder) and a nephew.

Maybe you can discover why you suffer depression, that may not be straightforward or obvious. It may be genetic, it may be an allergy, or it may be your situation, you may also suffer some degree of Aspergers. It may be all of these or any combination.

As regards the RLS, I hope this does improve. There are better experts than myself on this forum.

Certainly wean off the SSRI, perhaps you could increase the Gabapentin. Others may tell you a suggested dose.

It's paradoxical that my GP flatly refuses opiates for RLS, but last year willingly prescribed an opiate for nerve pain.

Clonazepam could cause you further problems. i have used it in the past but strictly told not to use it for more than 4 weeks and no more than 1mg. Please be careful with that.

I hope this helps, you are alone in what you're experiencing. i have been there, I can sympathasise with what you must be experiencing

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restlessstoz

Thnaks Manerva,

You're right in that RL isn't the only problem. I've suffered from depression since my teens exacerbated by low self esteem and the lack of nurturing as a baby/infant/child, then as a 'just' teenager being thrust into a different country at a time when I needed to fit it to the one I was born into and felt I belonged. (My uncle also suicided when I was 10 so I never have found out if there is a familial element there, my two nieces also suffer from periods of profound depression and my nephew from bipolar!!!) I've done heaps of work on this over many years and now have come to a great place in terms of self awareness and confidence able to work and support others, including my daughter. I am aware though that I have always struggled when not being supported by an anti depressant and suspect it's something I will need always. I do need thought to find one that doesn't exacerbate RL.

Having chosen a sociopath as a husband, (now where did that come from.... probably because he 'loved me'! after feeling unloved throughout my childhood) that was the icing on the cake both for me leaving me with PTSD and my three children with emotional issues, we all still struggle with this though we have been divorced for 32 years,

I have become generally remarkably resilient and strong and think that this 'glitch' is due partly to prolonged nights/weeks without sleep, lack of understanding by my GP and no support from neurologists locally. Dr B has been amazing but there isnt' much more he can do without actually seeing me in consultation which isn't possible due to financial restraints and the gP is reluctant to go out on a limb to treat 'out of the box! Now I need to find a replacement for the antidepressant and hopefully gain some stability there. Meanwhile I will contact my psychologist for some extra support. Also finding out about an iron infusion and continuing with meditation which although may not be the only answer, has some aspects that i'm finding useful. To continue to 'fight' in my corner without giving in to self harm and especially on my legs which are the source of my frustrations, is a challenge which I do not want to fail.

To cap it off, my son has serious drug and alcohol issues which relate to financial issues, which have an impact on how often I seem my four year old grand-daughter and of course this weekend being easter it was hard to have no contact with her . To be feeling 'unreal' due to the reduction in meds' really doesn't help at all but I a so grateful for feedback from people who post on this forum. Thankyou so much, :)

P.S. Aware of the dangers of clonazepam and will make sure I don't' get too reliant. I will take min holidays evrey week so that i'm not totally dependant every day. Thank you for the time you've taken to reply o my cry for help

1 like
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Manerva

It does seem as if you're one of those unfortunate to have a genetic element to your depression and as you recognise, may need a little chemical help.

I believe Wellbutrin or Trazodone are RLS friendly. Others may confirm this.

You certainly have and have had a lot on your plate psychologically. I'm glad you mention resilience and self awareness, these are words I'd only expect to hear from someone who has these qualities.

As you say, sleep deprivation is very damaging. So you're suffering a glitch. Who doesn't have them. You have resilience, you will bounce back.

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Madlegs1

As you realise, you are on so many medications, that it is virtually impossible to see what is doing what.

Many are actually interfering with each other.

It would be advisable to attempt to get off all medications, so as to he able to start from a clean sheet, -- but I appreciate that is a big, if impossible ask. Certainly getting off the ssri, and any antidepressants woukd be a start .

I'm troubled that Fentanyl had no effect-- it is the strongest opiate out there.

I'm wondering is it basic rls you have, or just reactions to the varied medications you've been subjected to.

Getting ferritin up is a start, but no guarantees, .

Avoiding triggers- impossible to define at present, would be an option. Avoid sugar, sweeteners, all processed foods, alcohol, msg in all its forms ( there are over a 100 names - enhancer is a dead give away.) Many more.

Sorry my answer is a bit rambly, but your case really needs hands on attention from an experienced practitioner.

I've given you some pointers, I hope they are a help to you.

Cheers.

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restlessstoz

Thnks Madlegs. YOu can rule out he diet aspects as I'm very careful Following FODMAP, gluten free, dairy free, nightshades free, I've avoided sugars, salts, alcohol, processed foods etc for years and had not much success though i'm sure the nightshades avoidance is helping my arthritis which in tern helps my RL. I don't really use any msg and make all food from scrtatch

I do wonder if the lack of response from fentynyl was due to the total overwhelemedness of weeks without sleep. I did try rotigotine which did knock it on the head for a week before starting to augment with arms and legs. consequently, no more rotigotine! Next was Targine which did work except that my GP felt that 30 mg /day wasn't safe and so wouldn't let me continue on it though it did work. Now its' clonazepam which I don't' want to become dependent on. Now I feel as if I can not see what to do next if this doesn't work. I can't seem to get an answer to methadone though I would like to try as it has such positive reviews and cannabinoids get such a bad rap here in Australia and it seems harder than gold to get hold of.

anyway. My plan is to get off everything... SSRIs. gabapentin, tramadol, and see what the RL level is like and then go from there. It seems like everyngin has been just added onto everything else without judging whether it even needs to be kept on or has any value.

Thnks for your support Madlegs!. I do appreciarte it.

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Madlegs1

Sounds like a good course.

All the very best.

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Hidden
Hidden

I'm glad you felt comfortable enough to get all that out! Has it helped somewhat? I'm so sorry that you are in a bad place. I'm glad that you have a psychologist and that you will contact him/her for more support; that's a great move on your part! Manerva is correct in saying that Wellbutrin is one of the RLS-friendly anti-depressants. I'm actually on this for depression and find that it is a good drug (for me).

Do you have a psychiatrist (or is your GP experienced enough to deal depressed patients)? It sounds like you need a doctor who is able to treat both the physical and psychological aspects of your life. Unfortunately, this is not easy. Every time I see my neurologist he is kind enough (being facetious) to remind me of how complex my situation is due to my psychiatric history. If I were you, my first step would be to have my doctor do an in-depth investigation into the medicines I'm on. The physical and the psychological are so closely related that this would be beneficial to everyone -- and even more so to those with depression and other psychiatric disorders.

If you click on my username and scroll down to my post "My Offer", you might get some more ideas in there of how to deal with the psychological side of things. In this post (which will actually pop up near the top of the feed soon since I'm just about to reply to someone), I include parts of my coping plan that my psychiatrist and I came up with. Maybe you are familiar with some of the techniques in there (or can at least benefit from some of the suggestions)?

All the best to you! Hang in there!

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restlessstoz
restlessstoz
in reply to Hidden

Thank you Sails. It's a wonderful thing to be able to 'let it all hang out' and get such responses from people who can understand what it's like. you know the more I think about it the less it makes sense that if a drug doesn't work...let's just add another one; and another one, until who knows what the interactions are and what is helping or not helping what. I am so relieved that now I am off the SSRIs and can at last, in between bouts of crying and despair, try to work out how my legs actually are! I will make an appointment with my GP to discuss where to from here and hope he can either work out something himself or refer me to a psychiatrist who can. I see a great psychologist who supports me in a very compassionate and yet practical way and understands the pressures I am under with a daughter with such problems and ex husband who's very complicated and demanding in spite of the 30 + years since we were married.

I will look up your link and get what I ca from that. :)

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smilingjane

Hi there

I completely understand your situation. And know the desperateness it causes.

I have had RL for 40 years and after many dubious meds , causng augmentation, have been given Longtec, (Oxycodone). I researched this Opiod and asked for it and was given it, and it has changed my life. I take 15 mls (sustained released every 12 hours and it has completely stopped the RL. I was started on the lowest dose 5ms then 10 ml (not enough didn't work) Then 15 mls which works.

It might be for you that if you take other meds they might not be compatible but I will say that I have found Longtec works on its on without anything like Gabapentin.

Let me know how you get on. You might find some GPs are resistant to providing Opiods. Refer them to the RL website where there is a report which endorses Oxycodone.

Good luck and I wish you love and care

jane

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Jumpey

Others have given you excellent advice so I will simply send you love to help you on your journey. Getting extra theraputic support sounds like a great plan.Good luck.xx

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Joolsg

So sorry to hear you are in such a down place. Lack of sleep, all those drugs & the awful withdrawal symptoms will make you feel terrible.

Add in family problems & it’s too much to bear alone.

You need lots of virtual hugs and positivity.

I really hope your doctors listen to you. I hope they listen to what Dr B has advised- he is a world RLS expert.

I think you would benefit from low dose opioids, as Dr B has advised.

Stay strong- you have done brilliantly to get off so many drugs. Withdrawal can cause mental anxiety as well as physical symptoms and it may be some weeks before they settle down.

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Hoochybaby

Dear restljessstoz

I can sympathise with you I was walking the floorboards at 4am for the 5th consecutive nights am at war and not evening winning the battle I've gathered my airforce experience and launched the V Bombers -Vulcans, Vailiants and Victors but the problems I'm fighting with Cold War machinery against cruise missilies and air to air technology.

I don't understand half of what the gps and neurologist shove down my neck I'm old school and obey my commandingl officer but coming back from the brink of suicude a year ago I'm still fighting the battle mainly due to the good folk of this forum. I feel sorry for myself but when I hear stories such as yours I realise people are worse off than myself keep up the battle and I'll try to get reinforcements

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Syvxdhkoy

I didn't get a chance to read all of the other responses so maybe the following has already been suggested but it might be worth taking the oral iron only every OTHER night. I switched to this regimen and it has worked wonders for me. I wish you good luck!

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RLSdaily
RLSdaily
in reply to Syvxdhkoy

Yes I was told this as well. Levels went up for me

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Bat3353

You got to hang in there I’m in a similar situation in my experience I wasted so many years with doctors that didn’t have a clue on how to properly treat rls now thanks to this forum and advising me about augmentation that I went to the rls foundation I’ve found a doctor on the site that know how to treat this condition he says it’s going to take 6 to 18 months to get off the dopamine I tried cutting back on my own and almost went crazy got back on my dose and now following his advise I’m at the doctors office for results on a sleep study a meg test and a lower back mri I will report on results

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restlessstoz

Has anyone had restless arms on Clonazepam? I've woken up twice tonight with bad RL in my upper arms!!!! Madness!!!!

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Hoochybaby

Hi resltlesstoz

I wish I could offer some advice but I have none only words of comfort I too know the debilitating effect of rls I'm on my sixth night without sleep trying to reduce my dependence of pramipexole I don't know which way to turn I read all the advice on the forum but my heads in a spin due to lack of sleep I can't assimilate the words. Even the sleeping tablets don't work anymore . At 4am I look at my dog fast asleep on the settee without a care in the world and if there is a life after this one I'd like to be like him.

Best wishes.

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restlessstoz

Hi Hoochybaby, I truly feel for you and appreciate what hell you must be going through. I can't imagine what we will all chose in the next life!!!! I think maybe something that either sleeps ALL the time - like a cat or dog, or something that doesn't have any legs like a worm!!! :) Keep up the wonderful job you're doing and from the posts here, you will read that it will be worth it in the end to be off this awful drug.4

I only wish that there was a recipe for RL that we can ALL take- take one of these twice a day, do 10 minutes of this, sit in a manure heap for five hours once a week and your legs will be cured. Instead we all seem to be blindly following a map that has some signposts on it like 'increase ferritin immediately ', 'dopamine top up this way', 'avoid stimulants- take this route', take a hot/cold bath; etc etc. and they seem to be different things for different people! It seems to be one of the most confusing conditions and one of the most debilitating and robs us of sleep and joy and life and jobs. Keep up your struggle and you'll be one step closer to the 'treasure'. Even if it is to be reincarnated as a worm!!!! :) :) :) and don't lose your sense of humour! :)

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RLSdaily

I am late to your post,I hope you are feeling amdaleeping better.

When all else fails take a few moments and do something for you that you enjoy. Some people say take a quite moment.( We all know that still and quite for RLS is not a thing.) Take a long shower or a nice walk or just a deep breathe. Take one thing , within your control at a time. Easter can be celebrated any day and any day can be special with your Granddaughter.

Slow down give yourself credit for all you do and how far you have come from divorce, raising kids and surviving all life throws your way. Hugs

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restlessstoz

… and thank you for caring! I know everyone on the forum cares and understands which is why it's such a lifesaver. Even if there's no one cure, at least shared understanding is a powerful thing.

I am hatching some thoughts/beliefs about the way forward for me but not yet ready to put them into print. When I do, I'll be interested to hear what people think about them... if I actually get there that is. At least the forum gives us a place where we can air out thoughts and get some feedback from likeminded people. :)

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