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I want to swear and hurt someone

Posted: Tue Oct 19, 2010 8:37 pm
by badnights
The last 3 years I've spent waiting, waiting to see a doctor get a test done get test results and none of those things take 3 months, it just takes 3 months for people to get around to doing them. There was the delightful 7 months I spent waiting for a replacement doctor while taking a suicide drug. Ten months to see a neurologist. Oh my god it's always waiting waiting.

Last April after 2 months of waiting to see if the hydromorphone solved all my problems (it didn't), I did a CPAP trial and waited 2 months for the results of that, which showed I needed one, so I got one (no waiting !) in June, and waited 2 months to confirm that it didn't solve my sleep problems, then I got my neurologist to make a referral to a sleep specialist, and I only had to wait one month before I saw the sleep dude, but really, since I still had a referral in to him from over 2 years previously, I can't get too excited by that.

When I saw the sleep specialist I told him everything and he said "you need another sleep study" so I started waiting another 3 months for that. MEANTIME my RLS is doing what my RLS does, which is get progressively worse at a faster rate than any of the books or papers says it should, madly wildly making a mockery of every drug I take, and I didn't know who to call about it, the neurologist who made the (second) referral to the sleep dude, or the sleep dude! But now I know the answer, it's no one! I'm not supposed to get any help from anyone until my sleep study at the end of November!!! I want so badly to throw things at them.

Until the referral, my neuro was kind enough to allow me to call his office, and he would get back to me the same day. This perhaps was in compensation for his unintentional act of evil when I first met him last Jan 27, taking me off the meds that only worked half-assed, putting me on something that didn't work at all, then vanishing for almost a month (WAIT for a month, in that state!!! Every neuron sang with the currents running through me, I danced and twisted arms and legs day and night, while crying grimacing moaning planning all my ways of dying). But now that he's referred me to the sleep specialist, he won't change my medication anymore! And the sleep specialist won't talk to me!!!!!!!!!!!!!!!!!!!!!!! His assistant/nurse/receptionsit says he says he can't do anything for me til he sees the results of my sleep study. Unf.kingbelievable! I told her "but I won't sleep! I am getting RLS every night, it's breaking through my drugs" and she said "I'll see what he says". Now I'll see if they bother to call me back.

I am supposed to be calm and rational but I can't seem to think.

Here's the story. If I can control my emotions I might call his office back? Should I? I started hydromorph contin (HM) at 9 mg last March. It was not enough so I used 9 or 12 as needed, by prescription, from Apr til Aug. But there was a clear progression going on, and by the end of Aug I was unable to get through the night with only 9 mg, and I was experiencing breakthrough RLS, which I was dealing with by either not sleeping or adding 2 leftover Percocet to my drugs. From Sep on, I have used 12 mg HM every night, used up the last of my Percocet, increased my dose to 15 mg HM 8 times (using up leftovers from when I only needed 9), plus I got through 2 and a half weeks by adding 0.125 mg of the zombie drug, pramipexole, to the 12 HM. That had to be stopped because it turned me into a zombie, so I am out of options and I have called my neuro who said to call my sleep guy who won't talk to me. Can I scream now? OK I admit it, I already did, over and over and over and it's still not enough. I want to have a life! I don't want to wait 3 months for every TINY USELESS STEP

and the sleep study is uselss because it's not going to tell him anything. The point of the SS was to see if I had anything besides RLS, to see if it was latent RLS that prevented me from getting a good sleep and made me unbearably sleepy during the day, or if there was another disorder in me. At the time I saw him, the RLS was fairly well controlled but I told him it was getting worse, and it has kept on getting worse, and now I am being overwhelmed by the symptoms and really they should be dealt with before the SS because the SS will not serve its intended purpose if not.

Sorry. I am trying to think of what I should say if I call back. And another thing that I wanted to ask him but of course I can't because he WONT TALK TO ME, how can I tell if the RLS is getting worse or if I'm getting tolerant to the HM? Can I stop the HM and use something else for a while? If my RLS is continuing to get bad fast (like how it got insanely worse over the first 2 years, so why should it stop now?) then wouldn't you think it's secondary to something, and we should find out what that something is?

I asked my GP about getting tested for celiac because my guts have been bothering me lately and she says WAIT until the sleep dude fixes you up and see if it goes away because a lot of gut problems are caused by sleep loss. I didn't say anything, I should have, the other side of the coin is, if I have celiac and it's causing the RLS, nothing the sleep dude does will help and I could wait in vain a lifetime.

I am angry and not sure what I should do. Not about the celiac, about the whole nightmare of worsening RLS and no one will talk to me about it again. I feel like when my first doctor left me.

Posted: Tue Oct 19, 2010 9:05 pm
by Betty/WV
Oh, bethf, I feel so bad for you. I have heard that in Canada you have to wait so long for treatment. But I didn't know it was that bad. I don't know what to say, just that I'm sorry you are suffering so much and I hope at least one of those doctors will do something to help you. And if you have a sleep study, oh my. You read about my SS. It was one of the most miserable episodes of my RLS. I hope yours isn't like that, if you ever get to take one. :(

Please post and let us know how you are doing. I will be thinking of you and wishing you well.


Posted: Tue Oct 19, 2010 9:33 pm
by Polar Bear
I am not surprised you are angry and frustrated with the system. Actually, there would be something wrong if you were not angry. You are suffering and stuck between a rock and a hard place !!

I do not know your Canadian medical system - if it is 'free' or by your own private medical insurance.

If it is government medical treatment, i.e. 'free' is it possible to pay privately for the first consultation with the sleep guy, (here in UK a private appt can usually be obtained within a week) thus making official contact and be under the treatment of sleep guy, or at least speed up waiting time.

Sorry things are so tough at present.

Posted: Tue Oct 19, 2010 9:50 pm
by badnights
I already paid my own way for a sleep study that was a total waste of time because the clinic was full of morons who knew nothing about RLS. That's the Canadian Sleep Institute in Calgary, run by a Dr. Adam Moskovich who lists himself as an RLS specialist with the RLS Foundation, which is why I chose the place. DO NOT GO THERE. I did not get to see the man himself and later found out he was sick, which perhaps helps explain why the place was such a disorganized mess and they forgot to follow up with me and when they did 5 months later, they gave me no advice or recommendations about the RLS at all.

So this guy is pretty much it, he's the gov't guy, he's more or less free because I live in the NWT (other provinces are not so lucky), but he's super busy. I just found out I can send a fax, so I wrote one but it's way too long, like my posts here hah, and I've learned there's no better way to piss a doctor off than send a long email... or letter or fax. omg I think I'll go try to sleep this day is LOST

Posted: Tue Oct 19, 2010 9:55 pm
by ViewsAskew
Oh, Beth. I can't think of a thing to say - I'd be just as frustrated and angry as you.


I feel so impotent in all of this sometimes.

Posted: Tue Oct 19, 2010 11:21 pm
by SquirmingSusan
((((((((Beth)))))))) That is just so horrible. That kind of torture should be made illegal.

I don't know if you have the time or money, but could you fly to see one of the RLS experts in the US? I'm sure Dr. B would be able to see you quickly. And he wouldn't need you to have a sleep study to treat your RLS. Heck, we could meet you out there; my daughter and I are going there in a couple weeks.

Otherwise, you can email him and see what he has to say. About the celiac, could you try to eliminate gluten and see if it helps? It makes no sense why they can't test you that, though.

Keep emailing and calling and faxing the doctors and let them know how much you are suffering. Hang in there.

Posted: Tue Oct 19, 2010 11:45 pm
by badnights
thanks so much! i don't know
i just don't know

Posted: Wed Oct 20, 2010 7:28 am
by Polar Bear
Susan has something there...... email Dr B and see what he thinks... and then if at all possible consider an appointment with him.

Posted: Wed Oct 20, 2010 7:57 am
by ViewsAskew
Per the celiac, kindly tell your doctor that she CRAZY.

If your guts are bothering you, what the ^#%$%? I mean, duh. People with celiac have a HUGE risk for RLS.

It's just a blood test to start for Pete's sake. Yeesh.

Posted: Thu Oct 21, 2010 1:14 pm
by dogeyed
Gosh, that HM med should have helped... I think in Canada they have a low-milligram codeine type over-the-counter medicine, Comodol or something like that. Go down and get a couple bottles of that, and gulp down a few of those with your HM and maybe that will take the edge off just enuff to get you to November.

I agree with the others, go to your regular doc and get the blood test for celiac, just in case, and while you're there, whine and cry (sob) to him about how the drugs they gave you ought to work, but they sure aren't, and who knows, maybe he'll offer SOMEthing to add in.

And I really know just how hard it is to wait around for these docs to tell you you're fine. I totally lost it on a gastro health issue when they were supposed to fast-track me and they didn't, had diarrhea half-dozen times a day for six months and wound up in hospital dehydrated, etc., and I called and complained when they had me for an appointment to see the specialist months away, and my doctor FIRED ME as a patient! Ye gads. I wound up getting a colonoscopy the day after Christmas. Oh, yeah, I was pissed!

And your whole repeat sleep test situation is ridiculous, cannot understand why docs won't do a little reading on RLS and understand it's NOT A SLEEP DISORDER, that's a misnomer on account of RLS disturbs the sleep, and not the other way around. And in the meantime, here you are with your legs and body on fire, and docs think it's perfectly okay for you to suffer until some result comes back next year. Yikes!

I agree with the others, I think it is a good idea to contact Dr. B and just see if he has any ideas of someone you can visit in Canada that is close by, and see if he'll contact that doc and explain what's going on, and he can put you on either methadone or a morphine drip! Ha! And I guess you could walk into the emergency room of the hospital and be screaming and drooling, not enough for a straight-jacket mind you, but enough to get you on a table and some tranquilizers going into your arm.

This make me think that you could visit a psychiatrist and THEY'LL give you tranqs and maybe some alternate pain killers, they're doctors and can prescribe what they want. One time I had back pain, an orthopedist and neurologist apparently overlooked that I broke my back in three places, and I came for my usual visit to psych and was crying all over the place, and I didn't ask for any help for meds, but lo and behold she offered Lyrica to me, pregabalin, and it stopped the back pain (but it really doesn't help RLS, altho you never know).

Well, kid, about the only other advice I can give you is, if the HM helped you AT ALL at the level 12 dose, you can consider cutting it way back for a couple days (stay drunk, I, and then start back with 12 and see if that'll buy you a couple more weeks. And I'm so glad you came here and vented, it always helps a little, and DO get some support hose or compression stockings at the drugstore, put them on those legs of yours, it will sometimes help you go to sleep.

Posted: Thu Oct 21, 2010 5:05 pm
by Neco

Posted: Sat Oct 23, 2010 2:24 am
by badnights
Ya, sucks.

Dogeyed, I can't take hypnotics, I mean they'll help me sleep if I have no symptoms of RLS but if the force is moving in me, I have to stay up and move around, and the hypnotics just make it more miserable.

Believe it or not, this guy I'm going to be seeing - just had my intake appt in Aug - is the most experienced in treating RLS in my region. I want to ask him what he thinks RLS is like, when I see him again; I can't belive he knows and still refused to talk to me. Apparently I'll see him the morning after the sleep study and before the MSLT.

The HM actually works, and it's better than anything else I've had so far, but problem is it's fading fast; over the last 6 months I've gone from taking 9 or 12 mg depending how I felt, to taking 12 all the time and that's not enough (cheating and taking 15 sometimes).

I feel wierd asking for codeine-bearing pills at the drugstore; if they even so much as looked at me funny I'd blush and look like I was doing something wrong. I would have to go to a different drugtore because the pharmacists at my regular one know me, and they would ask me about it, I'm sure... god,I just can't make myself do it, I would be mortified if they refused me.

Now, when I tell you this you'll think I'm nuts: I have extra HM because the drugstore screwed up (twice!). Maybe I should just raise the dose myself??? I've been avoiding that because I don't want him to think I'm addicted but Lord! it seems every new RLS doctor I get demands me to sacrifice a month or more of my life on his altar, and I'm starting to lose patience with it all, because I only have so much damn life left! and this is the 5th guy in 2 years. Not counting two GP's.

Maybe I will just start taking 15 every night, and on Nov 23 when I see him, I will just casually tell him that I increased my dose without his help, thanks for nothing. If I do that tho, I will burn through my fortuitously acquired stash and have NO BACKUP.

You know what happened, is that I got used to being almost human and was audacious enough to expect to be allowed to continue that way. Foolish me. Since he refused to talk to me, I am gradually returning to my previous frame of mind, thinking I don't deserve to have a life - to be able to study, to work a full day, to stop goals with the reflexes I was born with - I'm just becoming a typical inadequately treated RLSer again, thinking I can't have those things. When a small medication change is all I need.

That's it. I'm burning through my stash and hoping for the best.

And next time I see my GP, I'm getting that blood test for celiac.

Note: I got tolerant or my RLS got worse?? insanely fast. Am I scared? Very.

Posted: Sat Oct 23, 2010 5:13 am
by badnights
omg I've been repeating myself badly. Sorry. :oops:

Posted: Sat Oct 23, 2010 2:00 pm
by dogeyed
Hello Beth,
Awwww, you're too sweet, but I think you're talking just like a normal person, as far as I can tell. Of course, I love talking forever whether anyone is listening or not! Ha! And I think you ARE worth having a normal life, it's just sometimes health issues can be hard to get straight, that's for sure. But not to worry, it WILL eventually work out, even tho it sometimes takes years. :cry:

Hmmmm. I suppose what you COULD do, on increasing the HM situation, is if you work and your week is shot anyway, drop down to nine for the week, and Friday after work go up to twelve, and Saturday and Sunday, go on up to fifteen. That way you'll still have some left over by the time you see the doc. Of course, this would make Monday or Tues the worst day of your life! But really, some variation of cutting back, of your own choosing, because when you cut back on a dosage, even for just a couple days, and then up it later, it increases the effect of the drug.

It's only natural that people develop a tolerance for a drug. I think in your case, you weren't getting enough of it to start with. The doc may just be looking for how much you DO need to feel comfortable. After all, he gives you 9 to 12 and that suggests he's checking where you go with it. Usually with drugs, you reach a plateau of comfort at a certain level... even heroin addicts, they have a certain "habit" they get to and they stay there, and it differs for each person. You'll hear about people who have a $100 a week habit, and others who have a $100 a DAY habit.

But I'm no expert. I think the best thing with your doc is just be honest with what is happening with you, and he will either give you more medicine or he won't. I don't think he's going to be upset with you; rather he's going to want to know what DOES work, at least in a pefect world. At which point I imagine next visit he'll wind up putting you on a higher milligram kind, like instead of 30mg, he'll want to give you pills that are, say, 100mg. Over the years, I've gone up slowly, too, after getting the beginning straight, and I think you're at the beginning, as opiates go.

Actually, for me, I have to take medicine every four hours or I go nuts. But one of my pills is a high milligram but I just get three a day. So, I wrangled with that a while, took too many a few days, and finally I got the bright idea of cutting one of them in half. It's a capsule, but I have a pill cutter that divided it for the most part and then I tore it in half with my fingers, gripping hard so the powder wouldn't fly out.

And like you, I'M SORRY I've gone on so much! But I guess I just wanted to chat with you concerning your dilemma and what has worked for me, in case some little thing I say might help. Well, we're all interested in your situation, and how things go with your "battle of the pills," and will hope for a good doc visit for you in November.

Posted: Sun Oct 24, 2010 11:27 am
by sugbrendas
Beth,I feel so sorry for you. Have you tried Klonopin yet? After years of suffering and no sleep it was the one drug that helped me..My daughter who also has RLS was put on it too.

I also understand the mental exhaustion and anguish that comes from no sleep. Sleep deprivation is horrible.

WHat I did, remind the Dr how he/she felt while in medical school when they didn't get any sleep. You must keep advocating for sleep.

Dr Early @ Hopkins Bayview is our RLS specialist here on the east coast,
I do know Hopkins treats people from around the world and maybe you could e-mail him. Start printing out some real studies on RLS, hand them to your provider. Tell them to read it!