Restless Legs Syndrome

one step forward, two back

For those of you who have seen my posts over the past 48 hours, you will know I was due to see my GP to get support for withdrawing from pramipexole, due to augmentation. A telephone consultation between the in-house pharmacist at the mental health centre where I am (very occasionally) seen to monitor my severe depression and anxiety disorder and this GP was arranged, for the pharmacist to discuss options for medication. I was told to arrange an appointment following this, for the GP to tell me the conclusions, and I thought, prescribe something to minimise the pain I might go through.

The GP invited me in, told me to sit, and looked at me and asked what I wanted. I referred to the phone conversation, and her response was, 'Who was that, anyway?' When told it was the mental health pharmacist, she grimaced and said 'Oh , a pharmacist. That makes sense', as though obviously a pharmacist was not qualified to advise on pharmacology to a GP. I asked if she had read the printout on augmentation I had sent yesterday, and she replied she didn't have time to read things brought in by patients and anyway, who was this so-called (her words) expert in RLS, just because he considered himself an expert didn't mean he was.... I was speechless. She then told me in her opinion, I probably don't even have RLS, she resisted making the diagnosis as the guidelines for doing so were too vague, and my problems are quite probably something else entirely. She declined to say what. She then told me, quite erroneously I believe, that there are no problems with pramipexole withdrawal, just take it slowly, reducing one tablet every two weeks, and that she would not under any circumstances consider offering me any pain relief. And that was that.

I am hoping there will be an opportunity to see a doctor at the mental health unit on Monday, as the pharmacist has recommended, in her opinion, the introduction of gabapentin alongside the slow reduction of pramipexole. However, there currently is no doctor there, and they are hoping a locum will be joining on Monday....or perhaps not.

At least I have the CBD oil, so perhaps I am worrying for nothing, but my care-co-ordinator has been informed by the pharmacist of certain things around withdrawal that need to be discussed with me, due to my history of psychosis. The GP was supposed to tell me all this. She didn't. My husband suggests maybe by this point in the week the doctor is suffering from compassion overload. This may be true...but not much help to me. In a ghastly way, I almost hope I do start to develop a psychosis, just so I can go back and shout 'I told you so' and break a few things.

Many apologies for this ranting essay, but I need to express all this to someone, and i know there are loads of you who will have experienced similar or worse with their GP.

33 Replies
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I am so sorry that you have a dick of a Dr, many of us here have to put up with them, and they don't like anyone advising them as their Egos are too fragile.

Please get a different Dr that quack will ultimately harm you. Your pharmacist is 100% right in my opinion and you need a Dr that knows what they are doing DAWS is a very real thing.

An ignorant Dr that 'hasn't time' to read information that will help them do their job are a disgrace and should be avoided like the plague.

I think your husband is being too generous to your Dr, the Dr is a f***ing fool and like all fools should neither be tolerated nor followed. Good to see the pharmacist and care co-ordinator are on your side. For a Dr to say you cannot get pain relief is terrible what about their duty of care?

I hope you get someone to help soon

Take care

PS Don't be afraid to complain:

nhs.uk/NHSEngland/complaint...

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when I have calmed down a bit, and see what the psych. will offer me, I shall carefully consider making a complaint. I came away feeling humiliated as well as distressed. But I do feel aggrieved that she refused to read the printout on augmentation, it is only a couple of sides and could be fully taken in in a couple of minutes. As you say, perhaps she felt threatened, that I was implicitly suggesting she was not up to speed on RLS treatment. But I have a sneaking suspicion that she doesn't fully acknowledge the existence of RLS, since she believes its main characteristic is inadvertent leg movement, (which I don't have), and was triumphant when saying 'there you are, then, you don't have RLS'. How can you counteract that? You are a great listener, thank you. I hope one day I will be able to offer other sufferers support in the way you do. x

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You may need to print this out and staple it to your GP's forehead:

ncbi.nlm.nih.gov/pubmed/236...

That Dr is a major liability to your physical and mental well being and as such you need to avoid them. She isn't following NICE guidelines and from my viewpoint what appears to be happening is you are being diagnosed on the back of your mental health.

I have seen many people with mental health problems, (from the more minor spectrum of depressions to those with chronic intractable schizophrenia) having their views totally ignored and a third class service because they had mental health problems.

I am absolutely raging that so called educated people are acting in such a stupid and harmful manner. If you don't know how to do your job or are unwilling to do it correctly then f**k off and let some one capable do it!

I do not believe you will have any success with this creature as she has her mind well and truly made up and the fact that she dismisses ALL her patients speaks volumes.

Stay strong and know your rights do not let that women bully you into substandard and indeed dangerous treatment.

If you are involved with any of the advocacy groups for MH it might be worth bringing it to them, God knows how many other poor souls are suffering due to her ineptitude/Ego!

Take care

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I shall try to stay safe. I hope and pray for another 'good' night's sleep tonight. Thank you for your concern. x

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I have thought about it all evening, and I am certain you are correct in your assumption: she sees me as a patient with chronic mental health issues exhibiting paranoia and hysteria, and assumes the pathology in my feet and legs, although fulfilling the criteria as I interpret them, is merely symptomatic of depression and anxiety, in other words a kind of hypochondria attached to my other problems. In my dark moments I start to doubt myself.

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@Raffs- you're shocking restrained at the treatment Tania has been receiving - I think you're getting soft in your old age 😅😆

Tania- hold strong and don't be getting into a swizzle over the dreaded prami withdrawal scare- going down by 1 tablet every week ( or even 2 weeks ) is extremely doable.

Take chewable vit C and multi vits - juices are great and be kind to yourself. Watch some good films or detective plays to distract yourself.

I've been through far worse ( coming off Fentanyl) and also Prami. I have no hesitation in saying I'd go for the Prami experience over the opiate one- it was pure hell.

You'll wonder what all the fuss was about. Some people have bad experiences because they go down too rapidly or mix meds or take triggers- alcohol, antihistamines etc.

I understand it's difficult to see clearly at the moment-- but believe me-- you will get through this ok.

Holding you in this - keep strong. We all love you.

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lol Madlegs1 - my poor wife would disagree after having to listen to me all evening. I figured with taniabacon being new I wouldn't post a page of expletives, but believe me I thought and said them.

My Mrs did calm me down by reminding me that Drs are brainwashed and she is right. They are trained as keepers of the sacred knowledge and us lesser mortals are unable to understand what they do. SO in the spirit of that I'll not complain about that b1tch poor taniabacon had to tolerate nor will I call that wretched excuse for a human any names :)

Some Drs are to be pitied they think they know a hell of a lot more than they do and much of what they learn becomes obsolete. I have 'spoken' with enough on here to know that there are many experts, genuine experts out there with no medical training.

GP's are not experts in everything they do know a lot but they cannot know all that is down to us to learn. That particular homunculus is also in the thrall of her Ego, (as many are) and the fact that she doesn't listen to patients should be a huge warning, (bit like a luminous pink tutu on a large man at 4am it should warn you to stay away :) ).

I had a run in with a so-called specialist who was just about the worst Dr I ever experienced a complete tosser, (that is being generous) and was in and out before I realised what had happened. I was so angry I complained, and the health trust arranged for me to see another one who was fantastic and I got great treatment. If I hadn't complained I would have been left to suffer - I will never suffer another fool like him again, (I can't wait til fate puts him in my path again).

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Going a bit off piste here, nothing really to do with tania's problems or even RLS - once went to a new GP (and why is this suddenly producing italics?), was so annoyed, I told him on leaving that I hoped his medicine was better than his manners, which were atrocious. Funnily enough, he was awfully polite to me after that ...

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If you hit CTRL & I you switch on/off italics - one mystery solved.

Fair play for calling the Dr on his manners. If we lie down and allow them to walk over us they will!

I am so blessed to have the GP I have, (even though I don't always agree with him). Health is meant to be a partnership, its a pity most in the health care field don't realise this.

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Thanks for the info, though can't think how I managed it!

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I don't ever drink, and the antihistamine I take is Fexofenadine, one of the newer kinds, and not thought to have the same problems. I take this earlier in the day, so that it shouldn't interfere.

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I wouldn't trust any antihistimine, try skipping it for a couple of days - if you can - and see how your legs react.

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I couldn't have said it better myself Raffs!

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Hi,

Shame sh*t different doctor :))

Just like Raffs said make an appointment with another GP.

I had similar experience and felt really down afterwards. But do not let this bad experience to put you off. Go back there till you get a understanding GP.

Don't worry about withdrawal symptoms, you will get through it... take one day at a time and try to sleep during a day if you can for the first few days..

YOU CAN DO THIS!

Lots of love,

Bx

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It is so great reading all your wise words, and absorbing the concern and care you seem to have about my current situation. Last night was not great, even with the CBD oil, only 2 hours sleep, then a valium, nothing, and finally some more CBD oil at 5, followed by another couple of hours sleep as the RLS symptoms subsided in their usual early morning way. However, I am certain that this is not the fault of the oil not working, rather the start of proper withdrawal symptoms due to it being the second night of tapering off the pramipexole. Tonight I will take the full dose of 4 again, down to three again tomorrow, much as Raffs sensibly suggested. The problem last night was more panic, aches, shortness of breath and strange thoughts, coupled with a kind of thick numbness and fizzing in my feet (not exactly the sensations I have become accustomed to, but requiring me to get up and walk nonetheless). I constantly tell myself, 'distract, distract', but due to cataract surgery 3 weeks ago, and having now very 'unequal' eyes, my options are limited. My distraction of choice would be work, but this for me is close, detailed craft work, and I can't focus to do it. Reading is possible, I have a pair of reading glasses that help the now good eye to see writing clearly, but the other eye has to be covered up! That means I have no depth of field, and can't make the visual adjustment necessary to do my needlefelting, sadly. I shall need the other eye done before my sight settles down, and may have a very long wait. So what else? I could watch tv during the day/evening, but I feel so tired when it is 'sleep time' that i can't concentrate. I do listen to the radio, but I feel my anxiety rising as time passes and I still have not drifted off.

I am going to the health food shop this morning when I have walked the dogs, to stock up on Gentle Iron, get some good multivitamins, as you suggested. It does seem easier in the daylight to cope, doesn't it? Those long night hours of darkness seem to be interminable.

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"Will you have Restless legs syndrome with Fexofenadine hydrochloride ...

ehealthme.com › fexofenadine hyd...

Restless legs syndrome is found among people who take Fexofenadine hydrochloride, especially for people who are male, 60+ old , have been taking the drug for 2 - 5 years, also take medication Famotidine, and have Gastroesophageal reflux disease. "

Everyone reacts differently.

Does your recent worsening of rls coincide with the Fexo?

Just wondering!?

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I don't think so... but it could be, because I have been getting worse since the spring, when of course the hay fever season started! So you may have a point. OK, that's another one to drop :-(

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Decorate :))) Raffs is the expert on this :))

Binge watching helps too. Or just give up trying to sleep. It gets frustrating! And try to sleep during a day perhaps?

Stay strong.

Bx

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hahaha. Raffs can come and help me with a bit of painting anytime!

I think there is something in what you say: my circadian rhythm is shot to pieces, but I can't sleep during the day, as I have symptoms all the time now. Originally, when the condition first started, I found it very strange that I didn't have any problems during the day, but little by little, the period of remission has diminished to almost nothing, so I am rather stymied.

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You will feel a lot better once that evil stuff out of your system!

I promise you there is a light at the end of the tunnel.

Bx

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Know that you are safe and that the withdrawal will end and you will feel better and the RLS is likely to become less severe. Huge good luck and a big cwtch! Could you let me know the name of your CBD oil and where you purchase it? xx

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I'm not sure I hit 'submit' when I replied, so just in case, I got it from CBD Brothers, who will send free samples on request. They are wonderful and compassionate.

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Cheers for that.That's where I get mine too Just wondered if you had a different supplier who had different strains.Which do you find the most helpful?

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Have literally only just started using it, so I am trying out all the samples first. But the first night, when I was so terribly exhausted and distressed, I took 2 drops of the red one, and slept like a baby for 4 whole hours, the longest consecutive period of sleep I have enjoyed for at least 7 or 8 months. However, last night was not so good, only 2 hours or so before the RLS/ withdrawal symptoms from the pramipexole became unbearable again. Then I took 2 blue capsules, and had another couple of hours. Have just had the tiniest grain of green paste, and i can feel it working a tiny bit... or else that's just fatigue from the withdrawal. Hard to say

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Guided meditations or breath meditations if possible, this can be difficult if the legs are at you.

Mindfulness, focus on the sensations as if you are an explorer investigating them, see how many words you can find to describe them to someone who doesn't know. This might sound counter-intuitive as you are focusing on what you want away from but the detached mindfulness that comes from the investigation can ease things.

Telling yourself not to focus on it is like saying - Don't focus on a 6' 9" muscled Jamaican man singing Dancing in the Rain while dressed in a luminous green leotard and pink tutu! You bring more focus on the inability to escape and that makes it worse.

Stretching, this is my current fav as I haven't the energy for a physical work out or long walks but the stretching I can manage and it gives relief. Having to listen and focus on moving helps distract too.

Take a pack of cards, face down and try and see how many you can guess the colour of. Settle the mind try and see the card and guess. When you have done 52 note your score and try and beat it. It is a famous technique to help increase esp, but whether you believe in that or not it can be distracting without taxing an over worked mind. I usually follow one of this lady's routines:

If you are doing nothing much today - sleep. At times like this it is the same advice as to a new mum, take it when you get it, (that advice also works for a married man and sex :) ).

Puzzle games, computer games anything can be utilised to distract if given good attention. How would you describe your garden to a blind person? ( a quick explanation might mention colour and smell, but bring in sounds, feeling and bring it to life).

I learned the alphabet in sign language one night, well it took a few nights for it to sink in, as I could look at the screen while squating and pacing :)

Irish:

en.wikipedia.org/wiki/Irish...

British

british-sign.co.uk/fingersp...

American:

lifeprint.com/asl101/finger...

After that you can sit in your Drs office and tell here what a F****r she is under the table :)

Take care.

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you make me smile Raffs. :-)

I went to Waterstone's this morning while staggering around trying to find vitamins and iron, to buy an easy crossword book, but there was not a single Guardian one in the whole of the shop, WH Smith's, perhaps nowhere in the whole of the town.... Their quick crosswords are the only ones I can do. Got myself a little notebook though, and intend to start using it to record how many pramipexole I take each night, and the effects I am feeling. That way I will be able to keep track of the withdrawal. Tonight it will be back to 4, as per your urging, then for the next three nights I shall take 3, then one more 4, then four nights of 3 etc. etc. After a week of taking 3 each night, I will endeavour to reduce to 2 in the same way. Whatcha think??

I might try stretching etc. I can feel in my bones that might offer some relief. I have been trying to rest this afternoon, but the fizzing in my feet is so uncomfortable it is hard, as you will know all to well. Have bought a paper to read cover to cover this evening. May try to stay up watching tv tonight, instead of trying and failing to fall asleep. Perhaps I might drift off on the couch...

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Sounds to me as though you need to put in a formal complaint to the BMA. And maybe if more people did that, more doctors would realise that RLS is not merely a figment of hypochondriac patients' imagination.

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I am considering it. Just knowing that she deliberately did not pass on the information she had received from the pharmacist regarding withdrawal symptoms from dopamine agonists seems negligent, even if I do not become psychotic or dangerously unwell. It says everywhere I've looked that the risks must be spelled out to patients, more or less in words of one syllable, from the time they start taking the tablets. I was never warned of anything.

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Amen to the complaints, not until we let them know we wont take a substandard service will we get a decent one.

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Just discovered something else relating to this Dr's treatment of me this week. When I saw her at the beginning of the week, in a terrible state from total lack of sleep, RLS pain, and a persistent cough that woke me every time I did drift off, I asked if it could be connected to Ramipril, a BP med., she said 20 years ago it was always considered, these days not so much, but she said yes, she'd take me off it, and just to double up my other BP med....amlodipine. Turns out, this is EXACTLY the same kind of ACE inhibitor as the Ramipril, so the cough will not go away after all! What is this Dr thinking? These days, with access to the internet, it is so easy to find out about these things, from proper professional documents as well as peer group evaluation. I am starting to think I need to make a complaint about her, even though I am never happy being involved in confrontation. And she is actually a nice woman, sometimes....when you aren't ill, that is, and just have something in your eye or need thrush cream....

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Incidentally, have just purchased chewable Vit.C, multi vits, and Gentle Iron. What is the dose of the Iron Bisglycinate that others have found beneficial? I think someone suggested taking Vit C at the same time. I could only get Holland and Barrett's own, which is 20mg, and the recommended dose is one capsule a day. Should I take more, or is this a good starting point?

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I take mine with and orange juice. Start with 20mg and rest in bed. Watch news or film? It works best on an empty stomach.

If nothing changes then maybe take another tablet.

But please check with your doctor in case your ferritin isn't low.

B. X

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Right, I will start with that tonight. Thanks so much

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