Visit to GP - Update

[Violet55]

Hi everyone,

I had my GP appt last week and unfortunately it didn't go well. First of all, as lots of you had advised me to go armed with plenty of information I wanted to print off allsorts from the Internet, but had problems with the printer, don't ask arrrggghhh!!!! But I thought I'd remember what I needed to anyway.

The appt went soemthing like this:

Having explained to GP how I wasn't sleeping most nights and certainly not getting a full night's sleep; that my legs were literally driving me crazy; that I paced the house night after night etc., etc.,

he said; ''... there's no cure for rls so there's really nothing I can do for you.'' (I'll just add that I had also asked him about my fibromyalgia problems too, to which he also replied that there was no cure for that either!) I said that I knew and realised their isn't a cure but thought that there was treatment for it.

To which he replied; ''...some people who take Ropinirole will tell you that it helps with their symptoms, but these drugs don't actually work at all.'' I said that I'd recently searched the Internet and come across RLSUK which I found extremely useful. That I'd joined the forum and along with reading the experiences of others, so many people with RLS had offered invaluable advice.

He almost smirked and said; ''...RLS is a common enough complaint that I know enough about it to know that there is no treatment for it.''

As you can imagine I was more than shocked/flaberghasted by this time, practically at the end of my tether with the man tbh. OK, I said, then what do you suggest I do because I can't carry on like this?

He replied; ''...well just looking at your current meds we could tweek those. The opiates won't be doing the RLS any good, but we don't want to stop those as they've stabilised other things, really there isn't anything else other than stopping the opiates.'' I told him that when I take Oramorph it actually helps to relieve some of the symptoms and by taking Tramadol it will do the same and sometimes allow me to get a couple of hours sleep.

I asked if a referral to a neurologist for RLS and a rheumatologist for Fibromyalgia would be possible please?

''.......not really, the first thing a neurologist would do would be to stop the opiates any way, and as I said, there isn't a cure.'' So what do I do then I asked?

''.....It's a matter of living with it and making lifestyle changes. But if there was a particular drug you wanted to try let me know.'' (Needless to say everything I'd gone armed with had completely left my mind and I couldn't remember the name of any of the drugs.)

To which he stood up, made his way to the door - end of consultation then, and I said; I may as well just go home and shoot myself then if that's the case because this isn't worth living with. He smiled, said ''....I've seen you in worse pain, so things are better. Nice to see you Val.''

When I reached the car I sat in it and sobbed, thinking where do I go from here, if my GP can't/won't help who will? As soon as I arrived home and 'gathered myself together' I called the surgery and said I'd like to be prescribed Pramipexole and also said that I was emailing 2 links for the doctors information; RLSUK and RLS.com. I received a 'phone call the following day to say the tablets were ready to collect.

I really think it's time to look for a new doctor. I cannot believe that any GP would treat any patient in that way, so dismissive it's untrue. God help him if he should ever suffer with this. Family and friends have always laughed and joked with me that having my birthday on Hallowe'en I must be a witch, a nice white witch of course!! Well honestly if I was, I'd cast a spell on him, and give him a nasty dose of RLS to try and see how he liked it. Maybe I'd not be a nice witch afterall. No, but all joking aside empathy, knowledge, understanding he had none. One thing he didn't suggest was that I should stop taking fluoxetine. I've recently read on here how this type of drug can make RLS worse or even cause it. I know that's not the case for me as I've had it since I was a child. I felt so desperate when I left his surgery, like I didn't know which way to turn. It wasn't as though I'd not lived with it for oh so many years as it was and hadn't bothered any health professionals with it. Not until I came across this forum did I think about seeing anyone about it; my symptoms were getting worse and I thought I had it in my arms, but worried that RLS was 'legs' not arms. I now know differnt. My mother had had it for as many years as I could remember, and now I had it, so.................

Thursday night I took the first Pramipexole 0.088g around 7:45pm. Legs felt so much better, arms too but the nausea was awful as was the itchiness, well it was more like 'prickliness of my skin all over my body,' very slight dizziness and headache which I really didn't want (as I suffer badly with migraine). However, I did manage to get about 6hrs sleep............wonderful. The prickly skin lasted all the next day as did the nausea. We were out Friday night and I'd forgotten to take a tablet with me and resorted to taking a sleeping tablet (zopiclone 3.75mg) and tonight, as you can tell I completely forgot to take one until it was too late.......or was it really? I'd like to ask anyone who takes this med, and if they've had the 'strength' to read this far please, (lol), if you've had similar side effects, if so are they likely to take a while to disappear or are they ones which don't go with time?

I have an appointment at the pain clinic on Monday so I shall relate this then and who knows maybe I'll get some help or advice there. Until then I'll persevere with Pramipexole and keep my fingers crossed whilst looking for a new doctors surgery.

Hope not too many of you are up and about tonight or if your were that you've made your way back to bed to sleep as long as possible. Well it's Sunday...good for a lie-in.

Chin up everyone.

V xx

[beady3]

Morning Violet,I feel sorry for you with the Doc just change him quick we have docs I wouldn't go to,but by chance the one I am seeing now is great only because the other was on hol.i had Ropinarol they made me have head shakes when I told him he said nothing I can do about that well it was the tab and that is one of the side affects. I now take Tramodol which is working great for me. I think most tabs make me dizzy quite frightening at times. Well after another good nights sleep thank god will face the day differently to what I used to All the best with new doc.

[Violet55 in reply to beady3]

Hi Beady3, Sorry taken a while to reply, not had a good week with RLS and fibromyalgia. Am not sure about the Pramipexole, while it's definetely had a great impact on my legs and arms, the side effects are really bothering me. Itchy/prickly skin, very sleepy (you'd think that was a plus wouldn't you?!) all day long, nauseau and can't stop eating.

After appointment with pain clinic was advised to give GP another chance (he could've had a bad day!) see how that goes before going down road of changing docs.

Hoping you continue to have good nights of sleep.

V x

[beady3 in reply to Violet55]

Well Violet5 that's a joke hope I get some sleep soon. I had that itching with Pram. The Tramodol still going ok but they make me sleepy which I hate ,why don't you try my tabs i am very pleased how it's going I think they take my apatite away I don't seem to get hungry. Take care xx

[dickJones]

Change your GP, V. This kind of lazy, dismissive, clock-watching approach to dealing with patients in real distress makes you wonder why the individual in question ever considered general practice in the first place. You're protected under the Patients' Charter. Check it out & either switch to another doctor within the same practice or - trickier - change practices. My sympathies both for your physical distress, V, & having to take them to this particular wally. All the best, Dick.

[Violet55 in reply to dickJones]

Thank you very much Dick. Am on the verge of changing practices, was advised to give GP another chance - to tell him that I was both upset and very disappointed with previous visit and tell him this is the reason I'm here to see him now, in no uncertain terms, with printed matter if necessary. If his attitude is the same, I will take action and definitely change to another practice.

Thanks again, take care.

V x

[dickJones in reply to Violet55]

A very positive course of action, V. Good luck & keep us posted.

[Kaarina Administrator]

Good morning Violet, I read all your posting aghast. I cannot believe this doctors attitude. It would appear he is in the wrong profession. No wonder you were dreadfully upset. I would have been distraught and also very angry. If he has his own problems he should leave them at the door of the surgery. If it was me I would look into how to complain about him. He should not be allowed to treat his patients like this and get away with it. Good on you for emailing the RLS information to him and requesting a prescription for pramipexole.

I am sure your pain clinic appointment will go much better for you on Monday. Do let us know how you go on.

[Violet55 in reply to Kaarina]

Hi Kaarina, You're quite right - I wonder myself, just why he is a doctor, he has no 'bedside manner.' Was advised by pain clinic to give him another chance on the basis that, like all of us, he could have been having a bad day and to let him know that I was upset and very disappointed with the way the previous appointment went. But as you quite rightly say, any problems he may be having should be left at the surgery door.

I'm not sure how I'm getting on with the Pramipexole, it most vertainly does help with my arms and legs, in fact it's brilliant. However, the side effects aren't; nausea, itchy/prickly skin, constant sleepiness and I can't stop eating even though I'm not hungry - not good. Talk about being stuck between a rock and a hard place, ha!!

Appointment with pain clinic was ok, concentrated more on fibromyalgia though but as the two are often linked it wasn't forgotten. I've had RLS much longer than fibromyalgia. Have started to practice 'mindfulness' with the help of the clinic, not easy to do but apparently it does have long term, lasting effects on the nerves and has evidence to show how it helps with pain etc. So, that's one thing I'm working with also some physio exercises. Back end of next week. Just want it all to stop and go away.

Hope you don't mind me asking, but what is that in your pic please? ;-/ V x

[Kaarina Administrator in reply to Violet55]

Hi Val,

You made me smile asking what it is in my photo. I do not mind you asking at all. It is a bowl of homemade cinnamon buns but as the pic comes out so small on here it only shows part of it.

That is often the problem with meds isn't it, they can work but it is often the side effects that one has to put up with that then becomes the problem or you have to take another med to ease nausea or stomach problems. I have heard that pramipexole makes one want to eat all the time, which I agree is not good is it?

I would find "mindfulness" rather a challenge too but I have heard it can be very beneficial and does take time to achieve. Do you receive a certain amount of these pain clinic appointments or can you continue indefinitely?

Keep up the good work, we can only try these things and then make up our own mind if it is for us or not.

Kaarina

[bedith6]

I'm so sorry you had to go through this trauma with your G.P. on top of everything else that's happening to you. I have had exactly the same sort of reaction from my G.P. and ended up in tears . Then he asked me to write him a note with my "feelings " listed . He did say he might speak to a neuro about my case but so far I have heard nothing more. All the other meds I have tried have made me quite ill so at the moment I am taking 20mg of Temazepam and have just begun to also take 50mg of Tramadol which was prescribed very reluctantly. The resuilts so far have been inconsistent. Last night wasn't too bad but the previous two I was up all night. Actually I share a birthday with you (Halloween) and if I could cast spells I'd give him RLS for 48 hrs and my goodness I think we'd see a difference in attitude. Best of luck

[Violet55 in reply to bedith6]

Belated birthday wishes Bedith6, wouldn't it be wonderful if we could cast spells on these rotten GP's and just let them have a taste of what we're going through, just for 48 hours as you say because we wouldn't wish this on our worst enemy would we?!

I'm sorry to hear that you've not got any further with a referral toa neuro, is it some time since you let your doc have the list of your feelings?

I too am struggling with meds, Pramipexole great for the legs and arms, but making me feet dreadful. Catch 22 situation.

Let me know how you get on with the neuro referral.

Vx

[bedith6 in reply to Violet55]

Hi again. Got a phone call from the surgery yesterday asking me to phone my G.P. on Thursday. Didn't say what about but I'm hoping it's about the referral. I'll let you know. CheersXX

[gingerman12]

Hi Violet, I just want to say that I have found Pramipexole works for me. If I forget to take it, I am soon reminded at bedtime by the twitches! I then take a slightly higher dose (hoping it will work quicker), and find myself a good film to watch as I know I won't stop twitching till 3am or so. I think 2 hours before bedtime is usually recommended but It takes about 4 hours for it to work for me so I take one and a half tablets about 6.30 -7pm.

I had not heard before that Fluoxetine makes RLS worse but I really did notice it myself when i took it with the Pramipexole. I have now stopped the Fluoxetine and my RLS is back to being controlled.

My GP was a lot better than yours, though he dismissed RLS as something made up by the drug companies to get sales! I then offered myself as a test case and said I would phone him at 3am when I was still awake with the twitches! He then prescribed Pramipexole for me! I do hope the Pramipexole works for you but keep trying - there will be something out there for you. And yes, if your GP can't be educated find another. Best wishes Pat

[Violet55 in reply to gingerman12]

Hi Pat, what a good idea, think I'll suggest 'phoning my GP at 3am when I'm up due to not being able to rest because of fidgety, irritable, uncomfortable legs!! I'm reducing Fluoxetine now in the hope that it will help, the Pramipexole is brilliant but the side effects aren't unfortunately, as I've said before. So I'll keep trying as you say, give GP another go, if that fails then I will change practices.

Take care

V x

[Sue777]

Hi Violet you poor thing - definitely time to change your GP.

I would advise to carry on with the medication for a while to see if the side effects calm down, take them after you have eaten as this can reduce the nausea sensation. I have my tablets with me at all times so If I go out I have them ready. I find it best to take mine about half an hour before my RLS normally starts. If I take them after it has started it takes at least an hour for them to kick in. xxx

[Violet55 in reply to Sue777]

Hi Sue777, Apologies for taking so long to reply, not a good week. Good idea to carry tablets with you, should've thought of that. I have allsorts of other meds in my bag, why not those as they've to be taken so early in the evening. I have taken them with food but the nausea is still there. Other awful side effects too, was hoping that after this length of time they'd start to fade but they're not.

V x

[Sue777 in reply to Violet55]

Have u had your thyrpid function tested? RLS and fibro are often linked to hypothyroidism. Pips has given good advice about ferritin levels, if u decide u need iron supplements take them last thing at night leaving at least an hour away from food and anything containing dairy including tea as this can block absorption. X

[funnyfennel]

Poor thing, we all know the desperation. After years my first Ropinorole pill gave me a nights sleep and waking up in the morning was such a surprise!! I had always seen the dawn before....

Since then of course have changed meds, and like others, take a pill early evening at the same time and then every x2 hours til bedtime. (3 pramipexole). Best of luck with it all. We have to be our own health experts with this particular ailment. But we do have this forum and other help on the internet.

[Violet55 in reply to funnyfennel]

Hi Funnyfennel, again, sorry taken so long to reply. I was lost until I came across this forum. You're so right we do have to be our own health experts. I too was surprised after taking the first Pramipexole to find that I'd slept the entire night without getting up, not even to visit the bathroom!! Gosh I wish I was able to take 3 tablets like you but the side effects I'm getting from just 1 tablet are quite unbearable. I'm not sure I'll be able to keep taking the Pramipexole which is a shame as they control the legs.

V xx

[Eileenk]

Hi Violet55

My jaw almost dropped to the floor after reading this!!! Either I would a) Change medical practice or b) ask for a second opinion/ change your GP. If it were me I would put in a formal complaint to the Practice Manager! It makes me mad as hell when I hear how some GP's shrug off RLS, and tell us "there is nothing I can do" that's utter rubbish!

There are many kinds of meds out there, you just have to find the one that works for you.

Find a GP who understands! Hope you get some sleep tonight and please let us know how you get on at the Pain Clinic?

[Violet55 in reply to Eileenk]

Hi Eileenk, Taken ages to reply, sorry! Your commentssound just how I felt. I do feel like complaing to the Practice Manager, we've recently just got a new one, not had an official one before - only small village practice (3500 approx patients). You'd think GP's shouldn't shrug off any patient's complaint and tell them that they can't do anything; it's not right to send any patient out of the surgery when they have an obvious problem.

I have slept on and off since taking Pramipexole, but the side effects aren't nice, well not for me.

The appt at the pain clinic was good, although it was concentrated more around fibromyalgia, but as RLS is associated with fibromyalgia this was covered too. I'm learning to practice Mindfulness, not easy, which apparently has a very good long term, long lasting effect on the nervous system. And was given some physio exercises. Next appt end of next week. It's very early days yet, but they seem very knowledgable and understanding, which is something.

Thanks

V xx

[Eileenk in reply to Violet55]

Ahhh...Mindfulness!! Been down that road, hope you have better luck than me (it lasted all of 10mins) lol!

At least it sounds like you're going in the right direction at the pain clinic, maybe they will be more helpful than your GP.xx

[Avosyl]

Hi Violet55 I have just finished reading your horror story for thats what it is. That condescending blockhead is a disgrace to his oath. There are many illnesses and diseases out there that cannot be cured but to my knowledge not one that cannot be eased in some way. Change your doc and put in a complaint on this guy. I have had doctors brush aside what i tried to tell them about RLS but none reacted in that way. In the end i printed off everything i could find walked into the surgery slapped them down in front of the doctor and said read that and you might just see what i am talking about. After years i was getting mad at brush offs and he took one look at the stack another at my determined face and picked up the phone and called a neurologist for an appointment for me. So my advice is get determined and get angry till they do something for you. It is your right to get treatment its not their right to deny you a reasonable chance to get that treatment. Go for it girl and the very best of luck to you.

[Violet55 in reply to Avosyl]

Hi Avosyl, Blockhead is a great description, love it. Might just use that next time I see him, just kidding!!

Pain Clinic adce was to give GP another chance, go in with determination, take printed matter in want to, tell him in no uncertain terms how upset and very disappoint I was at previous appt and then let him know, on my term, what I've come to see him about at this appt.

If that fails to be successful I will then change practices, I will in the meantime complain I think, he shouldn't be trating patients in this way.

I will go for it, after all who else is going to stand up for us if we don't??

Thanks Avosyl,

V xx

[Lindy14]

Hi Val,

Welcome to the RLS Champions Club! As for your GP, what a lovely example of empathy and professionalism!!!

He should be struck off. While I appreciate that they can't know everythiing about every physical and mental condition, they have numerous outlets to access such information.

I do like the way the surgery "jumped to attention" and got the Pramipexole for you. Your GP must have had a look for something after you left and, so as not to lose face, prescribed the Pramipexole. I do think you might consider changing GPs as it's not as thouogh you are up at the surgery every day for something to do with your RLS.

One question. Did the GP give instructions as to how to what dose to take and/or how to gradually increase from a minute amount to one that works? If not I'd go back and check with him, AND ALSO, what to do if you get to the large amount with any satisfactory results e.g. peaceful sleep.

Another query. Do your legs get hot (particlularly the thighs)? Wearing cool trousers or skirts to keep them cool can keep symptoms at bay.

I have trouble with mine. I'm taking effective medication (Pramipexole) but last week I was taking part in an Amateur production of a musical and had a long period of sitting down between time on stage. The first night I wore tights with my trousers and lo and behold I felt the twinges starting halfway through! I took the tights off but it didn't take effect quickly enough and I had to go on singing with a twinge although when standing they stopped. The next night I wore knee legs and had no problems! Singing like a lark I was!!

I have found that warm thighs do affect my symptoms as do sitting for any great length of time e.g. if a passenger in a car.

Anyway, make sure your GP lhas given you info re. the doses to take and if you don't get any satisfaction ask for another opinion. Don't forget, we're paying their wages!!

[Violet55 in reply to Lindy14]

Hi Nurse-14, Thank you for the lovely welcome. It's certainly a great Club!

Well my GP told me that '...........rls was a common enough complaint,..........that he knew enough about it to know that nothing worked to make it any better..........' Well good for him hey, he clearly hasn't ever suffererd with it or known anyone close to him who has.

The only dosing info I received was that on the 'prescibed label' take one tablet 2-3 hours before bedtime. That was all, nothing about increasing the dose, although I'm not sure I'd be able to given the side effects I'm getting; nausea, itchy/prickly skin, overeating even though not hungry (?), so, so sleepy all day long but not alway able to sleep thru the night.

As for 'hot legs' and I don't mean 'sexy legs', hahaha!! Yes my thighs do get hot sometimes, hot to the touch too. I can't bear to wear tights for long periods of time, like all day. Can't remember the last time I could. Always remember that the first thing I did when coiming home was to take of my tights, my Mum was the same, sometimes even knee-highs are a problem and I have to wear just ankle-highs or fold down long socks. what a palaver, hey?

Sitting for long periods are a nightmare, haven't been to the cinema for such a long time for fear of disturbing others. Need to book back row seats away from everyone else, what a to-do.

Hope your musical production's going well and your still singing like a lark!!

V xx

[Lindy14 in reply to Violet55]

Hi Violet55,

I agree this is a great club. One thing it has shown me is how differently we are all affectted by the "dreaded lurgy". Your GP can't know that much about it. True, it is not a condition that there is "cure" for, and we're all affected differently, although some having similar symptoms in different combinations. There are different types of medications that can work for some time and will need to be replaced when they stop being effective. I find that using some things that work just on specific symptoms help me. Like you I have "sexy legs" hahaha!! I find by help keep them cool I reduce the frequency of my jerks when I sit down. I've often sat down felt my legs getting hot (i.e., RLSSexy!). If I run upstairs and put on a pair of shorts, a thinner pair of slacks, or a skirt, they get cooler and don't start jumping around so soon.

I don't like taking tablets so soon but seeing how long the Pramipexole I'm on takes to kick in this can help to keep the jerks at bay until the medicine starts to work. I also find the exercise ball good for keeping the jerks and twinges at bay. I haven't had the guts to use the ball outside my home, but I'm getting there.

The musical production went well. Just a few mishaps.

Again, keep in touch and let us know how you get on with the GP. But also consider getting someone else's opinion.

Nurse-14XXX

[Hidden]

Violet how absolutely awful for you. I can only echo what everyone else has said to you. Have you started the Pramipexole yet, You should start at the lowest dose first. which is 0.088mg or .125mg. depending on what country you are in. If that isnt enough then you can take two of them. BUT do not go any higher, if the doses do not work for you then going higher will just result in having augmentation sooner or later. Lower dose does not mean you wont have augmentation but it should delay it longer. Its also harder to get off a high dose of any dopamine agonist. The new recommended dose for Pramipexole is to take no more that 2 pills of the lowest dose. I hope it works for you.

[Hidden]

Val, like the others, I am appalled. Some mention registering a complaint with a practice manager. Here in the US, the system is different, and thought I'd mention the possibility of finding sites where you can leave reviews of doctors online. Don't know if there are sites like that in the UK; they are very useful here when you go looking for a new one, and for reporting unacceptable behavior experienced by one you are dumping.

[Cynicgirl24]

My experience wasn't nearly as bad as yours, but my doctor (gp) really didn't know about RLS/PLMD. She said it usually goes away on its own, there was no reason to run special blood tests, no reason to stop takimg antihistamines, etc. She was very sympathetic and helped schedule an appt. with a neurologist, but between the time my symptoms started and i got imto see her, i think i knew more than she did. This really is a specialty field amd it is completely fristratimg thay GPs don't recognize.

Excuse my typos. I can't seem to get this to correct

[Hidden]

Hi Violet, so sorry you had such a dreadful time with your GP.Think everyone has said all I would say but I am soooo glad you found this site to help give you the confidence to fight your corner.Well done for emailing the info and telling him which med you want to try first.I didnt get those side effects with mirapex (pramipexole) but hopefully they will ease off for you, In general Requip seems to cause the most nausea but it varies person to person, Good luck ..pipps x

[Windwalker]

The drug you got is sold here and also sold as Requip. I take two caplets that are time released. One at noon and 0ne at 9 PM. I also take 900mg of gabapentin at 9 pm. At 5 PM i take a 5 mg pill of methadone. The time of your meds is very important. The dizziness, nausea and itching will subside.

Look, if I could find some simple way as your GP suggests, I'd jump on it because I fear that what is hepling me in the short run is destroying me in the long run, but a long run with no sleep and suicidal thoughts, is not for me. I am 78 and have had restless legs, arms and body for close to 40 yrs and have had treatment that worked since 2002.

I was twice addicted to opiates, Vicodin and tylenol 3 twice and quit them cold turkey. The RLS was worse after each bought. The Parkinsons meds are my salvation and I will take one or another until the end.

Find a neurolagist who specializes in sleep disorders, but stop them when the want to give you a cpap or a vpap for ''sleep apnea'', that is not what we have or if we do it is a side issue. We can't go to sleep because we are moving too much to go to sleep without an opiate or a dopamine enhancing drug and that is the long and short of it......it's a genetic trait passed on the x chromasome from your mother.( or father if you are female) Check if she has it or if her mom had it. It is almost a hundred percent certain she did.

Good luck, i am in the U.S.A. and we still have some medical freedom but it is disappearing fast.

Windwalker

[connie50]

hi violet 55 your DR is an arse (excuse my language) but he/she is so wrong, I feel for you, hope you find a GP that understands RLS you will get plenty of advice & info from this web site, I had the same experience with my GP you never get to see the same GP (group practice) so along with loads of info what I printed of I posted it to a certain GP within the practice & now he is the only GP I see, if I have a problem with my legs, because he actually told me he sat down and read all the bumf, I had sent him, which was quite a surprise to here

[annakalia]

Hi v

i take pramipexole and take 3 tablets a night i dont have any side affects like you do other than feeling rather sleepy the next day i dont take mine until about 10 bedore bed. Good luck i hope that you find tablets that can help you. different durgs affect people in different ways its all try and error im sorry but YES you need to change your G.P.!

[nparks]

Firstly can I say, god love you.... Been there and done that, my GP is the exact same. It would send you mental. I tried Pramipexole and I am sorry to say even with taking Valoid, the nausea was unbearable, I couldn't sleep for trying not to be sick. I am attending a Neurologist who is testing me for everything under the sun but nothing as yet. I had a nerve conduction test and it confirmed I had peripheral neuropathy. But the RLS is sometimes unbearable. Keep pushing the GP and I hope things get better for you. X Noreen

[Portia5658]

Grrrrr.... Makes my blood boil when I hear of experiences like yours. Just what sort of expert does he think he is? He is obviously totally oblivious to your obvious distress. I truly feel for you. I have also received similar treatment from one of the doctors at my practice. He said to me ' it won't kill you '. Well he is wrong. The effects of months and months of sleep deprivation, physical exhaustion, anxiety and pain had left me in despair. I am being treated for RLS, fybromyalgia (chronic pain) depression, sleep apnea ( lie on my side ) and anxiety. I'm treated in bits.

As though every symptom is a stand alone entity. I am a whole person. The symptoms are all intertwined, yet I'm treated like a machine with parts. I don't want one department treating me for one symptom and another for something else. The sleep clinic treats the apnea, but not the pain, depression and anxiety. The depression has been treated with drugs that make the RLS worse. I only found this out on this site. Not through my GP. The depression and anxiety are related to the sleep deprivation. I get so frustrated just thinking about it.

If my Doc is fed up seeing me then I'm even more fed up with going around in circles with the treatment. One flipping drug after the next. I'm now on Trazodone for the depression and anxiety. ( Definitely helping so far ). Ropinorole for the RLS ( working ok ) and nothing for the pain. I take paracetamol and ibrufen but still have a terrible time at night with it. I also still only sleep for about two hours then wake up, go back to sleep, then wake up. If I get four hours on the trot I consider it a good nights sleep.

I would definitely change my doc if I was you. Nobody should be treated in such a patronizing off hand manner. In fact I'd go so far as to make a complaint about him. It is a total abuse of power. His attitude is arrogant, antiquated and downright dangerous. He clearly thinks he has nothing left to learn. Not a good attribute in a medical 'professional'. I wouldn't waste my time trying to tell him otherwise, he won't listen.

I truly wish you the best. You are not alone.

Lea

[Hopeless100]

gosh! I would ask for another doc, one who is more familiar with RLS, you are entitled to this

[denise072]

Hi violet,

My doc wasn't quite so bad, when I was 1st diagnosed i got a leaflet !!! I recently returned asking for a blood test for iron serum level. He looked rather blank wondering why i asked until i told him its part of the NICE guidelines and that for RLS these need to be above 50mg. He said he'd never heard of it.

Unfortunately doctors are not up to date on all conditions, so for anything i'd always investigate yourself, you have a much greater interest in the subject!! I have a few 'wierd' things and am often bemused by dr reading what treatment to give from an nhs leaflet displayed on his computer!

These NICE guidelines are for medical profession & shows the treatment you should expect to receive when presented with RLS. They also show the various drug treatments. You can find it here cks.nice.org.uk/restless-le.... It might be handy to look through or take with you next time.

Good luck x

[Hidden in reply to denise072]

Make sure it is your serum ferratin that is measured and most RLS experts now consider a level over 70 best for sufferers