I have a lot of health problems. None fatal -so far- but many of them very painful. It's a long list.
The worst of all is undoubtedly RLS.
I prefer the pains -which at the least I can keep under control with pain killers- to the unpleasant sensation of RLS.
I wonder if anyone else feels like this.
As I said, I am just venting.
You can vent as much as you like, in fact that wasn't much of a vent at all. When I read the heading I expected much more than that.
Seriously, it really is OK to vent here, quite a few do it. I have the occasional rant myself. Not necessarily about RLS either.
Misunderstanding, ignorance and injustice are my crumple buttons, as well as the powerlessness that people , (including myself), sometimes feel when trying to deal with their health issues - including the way some health professionals steal your power from you.
As you say, the symptoms of RLS make you feel powerless because sometimes they make you do things you don't realky want to be doing.
I absolutely agree. I have MS and have had every possible symptom including trigeminal & occipital neuralgia & severe MS Hug, all of which cause excruciating pain. I can honestly say that MS is a walk in the park compared to RLS and that's why I get so irate that neurologists don't take RLS more seriously.
Vent away. The louder we become, the more we may be listened to by doctors and researchers.
Yes nobody understands how awful RLS is unless they suffer from it. It's that dreadful feeling at night or early evening after a busy day and you just want to relax...and can't because your legs just won't stop twitching....I've tried tapping the legs, as suggested, and it does help, but but just too exhausting.
TESTIFY!
Yeah - Bloody fools telling us to use soap or that they have RLS too as sometimes during a long journey they feel uncomfortable. SURE that is comparable to spending 12+ hours a day writhing in agony and unable to sit still
We need a little tasteless and odourless pill that could give the symptoms of RLS for 24 hours (and the extended release formulation that lasts for 4 days). A few well placed tabs and we would find a lot more research into RLS and a lot more help.
Don't kid yourself that RLS isn't fatal - chronic pain and insomnia along with possible isolation, poor diet, poor exercise and whatever all that does to the other systems of the body - anxiety, depression, hypertension, poor immune functioning, etc will shorten our lives. None of us who suffer regularly and severely with RLS are going to live near as long as we would if we were healthy!
"Oh yeah, I get that too! Have you tried...?" Worst thing is having RLS and not knowing what it is - thinking it is this or that. It took me many weeks to figure it out - doctors were no help at all. When I did tell them what I thought I had they brought out outdated treatment info.
Someone once told me that they suffered from RLS but the symptoms disappeared as soon as they went to bed .... really!! 😠🤔. I just gave them a condescending smile and sat on my hands!
I have spinal scoliosis for which I've had a large section of spine fused, osteoarthritis in knees, hips and feet to the extent that I've had toes amputated because they started growing in strange directions and I couldn't get any shoes on (I was a runner and keen walker) and lifelong RLS which is by far the worst of the lot.
I recently had such a bad experience, writhing and kicking on the floor for hours in the night, that I eventually took a Stanley knife from my tool box and cut my arm several times purely to divert attention to a 'real' pain - it worked, but I have no intention of repeating such extreme behaviour or recommending it as a temporary relief. | told my GP what I'd done and having ascertained that I had no intention of killing myself he suggested changing my medication from Gabapentin to Pregabalin, but there's no miracle out there and we all know how each of us suffers.
I'm so grateful for this Forum and for the many well informed, knowledgeable and helpful contributors who really do make this dreadful condition easier to bear. Just knowing others are out there who understand and get what it's about is a comfort in itself.
I can totally understand your actions which were presumably, from sheer desperation. You just want some respite from the symptoms. When I was at my worst and withdrawing from ropinirole, I used to hit my legs hard with a rolling pin (sounds daft, I know), just to distract myself from my RLS. I also used to tell my partner that I didn't care if I didn't wake up the next day, which is ironic because I couldn't even lie down to get to sleep! I agree with your sentiments about this forum. It really is a godsend for RLS sufferers.
So good to know that people understand - the rolling pin option sounds a little safer than the knife, I'll give it a try! Thank you for your comments.
I can appreciate that the symptoms of RLS can cause distress. I myself have experienced writhing and kicking for hours on end through the night.
It's also recommemded in various quite authoritative places that distraction is a useful strategy in dealing with RLS symptoms.
It's also recognised that the experience of RLS as well as physical consequences can lead to mental health issues such as depression, suicide and self harm.
My own daughter suffers severe mental health problems which manifest in various forms of self harm. It's quite disconcerting to be woken in the middle of the night to the announcement, "I want to cut myself" and to see the scarring on both arms. She doesn't have RLS!
I don't know how your Dr reacted, but it is an indication of how badly your RLS is affecting you. I also don't know what help he/she offered other than medication.
Managing with RLS, like managing some other chronic health issues can benefit from psychological and behavioural strategies. For example I note the new UK guidance for the management of primary chronic pain explicitly states this.
I confess, it took me a while but I discovered that rather than lying down writhing and kicking all night it's simply better to get up and do something positive. I recognise this prevents sleep, but it was obvious I wasn't going to sleep anyway.
Obviously whatever you do needs to be fairly quiet, not too strenuous and distracting.
This also sound like a useful strategy
healthunlocked.com/rlsuk/po...
It's becoming apparent to me that an actual treatment for RLS, rather than just medications that unsatisfactorily reduce sumptoms, is iron therapy.
Perhaps your Dr had misunderstood this Blood tests for iron deficiency would help indicate if you might benefit. This incudes a blood test for serum iron, transferrin and ferritin.
In simple terms if your ferritin level is below 75ug/L then you could take an oral iron supplement. Raising ferritin to 100ug/L can benefit 50% of cases of RLS. If your ferritin is already 100 then you may benefit from raising it to 200 - 300ug/L. However, this would require an IV iron infusion.
sciencedirect.com/science/a...
Unfortunately as you have health conditions that might cause inflammation, this may be a factor in your RLS. It may also affect ypur ferritin level.
If you take any anti-inflammatory medicine then that could actually help, but otherwise you might consider looking up dietary ways of reducing inflammation.
If you take any other medications these may be making your RLS worse, e.g. if you're taking an antidepressant for pain, either an SSRI or a tricyclic antidepressant like amitriptyline this could be adding to your RLS especially as you have involuntary movements.
I have recently read that amitriptyline is "safe" for somebody with RLS, some sources even say it's benefial, (for sleep). However, although it's said it doesn't make the sensory symptoms of RLS worse, it does make PLMD worse. This assumes you only get involuntary movements when as.leep, which don't wake you.
I hope this helps.
Thank you for such a comprehensive response. I know that engaging in an activity is a good distraction and I actually take in someone else's ironing (they have a guest house) which I do during those nights when I need an alternative focus which helps to some extent, but on that particular night things had gone beyond my usual coping strategies. I frequently stay awake the whole night, not even bothering to go to bed, it seems 'acceptance' is easier than fighting it. My GP offered a talking therapy but I've tried it before and found I didn't have a rapport with the local therapist.
I do take a small (10mg) dose of Amitriptyline at night and now, with Pregabalin and a couple of Co-dydramol, I get through more nights. I take Pregabalin 150mg at noon, and 150mg at 8pm - this follows the pattern of Gabapentin I was taking previously but I'm not sure if this is the best regime as I believe it behaves differently.
Strangely I'm not depressed, more angry I suppose, and I have a telephone appointment coming up shortly with my rheumatologist who is very sympathetic and I will bring up the question of ferritin level with him.
I always read your lengthy replies with great interest. I'm very sorry about your daughter's condition and hope her management is positive. She is very lucky to have you on side.
I believe you're right about acceptance, althlough this doesn't have to be passive. The particular therapies identified for primary chronic pain are Acceptance and Commitment Therapy (ACT) and Cognitive Behaviour Therapy (CBT).
One of these could be beneficial for RLS, talking therapy isn't appropriate even if you did get a rapport!
Unfortunately the opportunities for these are quite limited.
Pregabalin, unlike gabapentin is best taken in a single dose for RLS. They have different absorption properties and the split dose for gabapention helps absorption. This isn't necessarty for pregabalin.
I'm currently on 150 around lunch time, and 150 about 9pm. Taking 300 at once seems quite high, and when would be the best time to take? I have trouble usually starting early afternoon then continuing and worsening as the evening and night progress - but much relieved with the Pregabalin.
I do have trouble at other times if I decide to go out early in the car, or have a meal out (which I don't do any more as I've lost count of the number of times I've had to leave a half-eaten dinner suddenly and dash out of the restaurant, very embarrassing) so I stay at home.
I'm trying to reduce Ropinirole, now on 0.5mg twice a day, and planning with trepidation to halve this once the Pregabalin is stable. Your thoughts on this would be appreciated. Thanks.
The pregabalin may not reach its full effectiveness until you've stopped the ropinirole completely. Even then, it may take a while for the withdrawal effects to settle and subside. If you need more to handle the symptoms during this phase of reducing and stopping the ropinirole, ask your doctor to temporally prescribe a strong painkiller like tramadol. That helped me and very many others in a similar situation. Or oxycodon, if necessary. Some people get by on otc co-codamol.
Thank you so much for your suggestions on progressing forwards with the reduction of Ropinirole - I have a telephone appointment with my rheumatologist next week who is always open to any suggestions I make regarding ongoing treatment and I will put that to him. I am experiencing weight gain as a side effect of the Pregabalin (which had already started with Gabapentin) and this isn't good given osteoarthritis in my feet which have been operated on several times, back likewise, and now knees and hips beginning. The saying "stuck between a rock and a hard place" often comes to mind! Again, thank you for your kind thoughts and suggestions on my situation, very much appreciated.
Hi oldfidgetlegs, tou seem to be in a somewhat similar position as Joolsg, who relies on her ms-neurologist for her RLS treatment. I am happy that you have a helpful and open-minded rheumatologist. And - I can relate to the weight gain. It is a known side effect of the alpha2delta ligands, to which both gabapentin and pregabalin belong.
As you appear to be getting symptoms earlier in the day, not just in the evenings, this suggests you have augmentation caused by the ropinirole. People often start splitting the dose of their medication or take it earlier becasue of this. However, reducing the ropinirole and stopping it is the best way to deal with augmentation.
You should find that as you reduce the ropinirole, symptoms during the day should become less.
Pregabalin (or gabapentin) can be effective if combined with a dopamine agonist (ropinirole) and some RLS experts recommend it.
However, pregabalin won't be fully effective if you're suffering augmentation. and additionally if you're reducing the ropinirole you may be experiencing withdrawal effects which will also limit the effect of the pregabalin.
Therefore, as Lotte says, pregabalin may not reach its full effectiveness until you've stopped the ropinirole completely.
600mg pregabalin is the maximum dose, but this is usually for other conditions, not RLS, but it does suggest that taking 300mg in one dose is not too high. However, an option is to continue splitting the dose as you do if it helps with the symptoms during the day whilst you still have them.
It's possible that once you've withdrawn from ropinirole you may even be able to reduce the dose.
To minimise the withdrawal effects of reducing ropinirole there are several options.
1) make smaller reductions. It seems you're currently planning to cut the dose from 1mg (2 X 0.5mg) to 0.5mg (2 X 0,25mg). Instead, you could cut the earlier dose to 0.25mg and not cut the later dose. How you carry on from there is what best suits you, but if overall you don't cut the dose more than 0.25mg at a time it should be easier.
2) make reductions less often, i.e. let withdrawal effects settled down after each reduction before making the next reduction. This may be as little as 2 weeks. If longer make the next reduction after 4 weeks.
3) as Lotte says an opiate like tramadol or even cocodamol can help reduce withdrawal effects
You can try any one of these, a combination of any two or all three.
That is so very helpful - I'm going to print off your suggestion to keep it fresh in my mind and give it a try. It certainly makes very good sense to me and is more than any of my doctors have come up with. Thank you so much for your depth of interest and care shown in your responses, not just to my own problems but to everyone who posts here - we're so lucky.
Just joined 
RLS caused by trapped gas...no mess needed...just don't eat gassy foods
Just one glass=no sleep!
JUST WONDERING 
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