What is it with some doctors that cannot understand that rls is not depression? What is it about this new "coping medicine" prescriptions? They tell us that we are doing everything right according to all that they know about RLS and that the usual medicines "should" be working so if they don't, then we have to start playing around with "head" medicines traditionally used for patients that have psych conditions that we do not have.. Give me a narcotic and I will show you in 2 days that I am not the least bit depressed, It's not anxiety keeping me awake...better yet, give me 2 weeks worth of
pain medicine and I will show you a new side of me that you haven't seen before because all that I need is S-L-E-E-P to get my usual good girl, no complaint, happy self back. If I told you that anti-anxiety medicines are not working or coping medicines are changing who I am - doing other evil things to my body, then why are you still prescribing them to me? Arent those side effects just as harmful as addiction? I noticed that I am starting to do weird stuff that my family doesn't take kindly to on the most recent "head" medicine that you gave me.. its called "Bisprone" and though it's supposed to bring up serotonin levels, it's been making my rls worse..and it's making these crazy thoughts happen to me...my family took notice and hates it.. THAT causes anxiety...I know that you looked at the list of medicines but just because it's on that list and you know that it will knock me out for a few hours doesn't mean that it's the right choice for me... look at me, look what it's doing to me.. see me, hear me.!!! I cannot keep switching over "coping" medicines and mixing them to get the right balance.. it's been a couple years and it's not helping me.. My body is showing big signs of stress, you have exactly what I need and just because a few bad eggs spoiled it for all, doesn't mean that I am one of those.. I have a real problem, my legs need me to be in an upright position all day, all night without rest.. either find me a way to keep that going or you need to give me a narcotic because we both know that it works very well for even 6 hours a night.. so give me a pain contract...and I will stick to it, not pressure you to give me more, not run out of it before my month is done and lets get me out of here!!! I want 2 light pain killers and one heavier one for bedtime. I promise to save the last for bedtime. I will sign any paper that you need signed and adhere to it if the FEDS come round - Oh and I won't be complaining of daytime drowsiness, I can live with that but I can't live without sleep. Thank you.
Our GP's, nurses & pharmacists need to be educated about RLS.
Oh, my dear! I feel so sorry for you! It is well known that people with pain and we with WED/RLS does not become addicted with opiods, we become normal and in high social function again. We do not get high, we get well working in life.
Do you have the possibility to see a pain specialist? they know that opiods works for us.
Have you shown your doctor some science text where opioids for WED/RLS is metioned as a working alternative when dopamin agonists is no longer?
Have you told him/her that here in Sweden does we get infusion pumps with intrathekal morphine?
Ditto. I truly understand how you feel, my heart and thoughts are with you. I'v been through this for years, but they are insistant, so for months now the boxes of anxiety and depresent meds are acumilating in a draw cos I'm tired of arguing the point. My family say i was behaving weird but am with it again now I'm off them. Still really bad RLS and fibro. Just been prescribed small amounts of morpheme for the nights. Still struggling, think I need larger dose. If ever you need to chat I'll be here for you. Missymaz.
I have pain management councilor, pain specialist...for treatment of coping with my condition. Both keep waiting for me to arrive in a better medical condition to be able to do some physical exercise..I may be laid up for another 4 weeks or so due to injury and wound.. they offer nothing but anti-anxiety medicines to cope with this. I have to ride out being bedridden for 80% of my awake time. Speaking of sleep, I have not had any good quality sleep for weeks..it's the position that I have to lay in. I can't even sneak a sleep with my legs not elevated...having the foot of my bed up drives me mad. I require a flat sleeping surface. lol. Yes, I am venting some steam.. RLS didn't creep back in the picture just yet.. but I do believe that I have it in my back and my neck again. XX Karen
Missymaz, I have an agreement with my Doctor that he never prescribes me any antidepressants or the like because they all contain some sort of 'relaxant' and that triggers my RLS!!!
Oh Yikes my heart goes out to you, I'm lucky to be prescribed strong pain meds (for spinal stenosis & PN) but I'm in the UK otherwise I would happily share mine with you
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You have the other two conditions that I have - exactly. PN is the most painful thing- I scale it a 8/10 at my usual bedtime Sometimes it's a 10 and I have to remove my shoes no matter where I am. I do get oxycodone but it's limited supply for the month. The doctor is getting stingy since the FEDS are watching ever so closely. He wants most of his patients off of the drugs.
For some reason only a bit of my reply has appeared - weird or what !?
Anyway to continue but more briefly - by the way - I DO know sharing meds is really frowned upon to say the least !!
The pain clinic I attend has also treated 2 ladies I met there who have RLS and have gone down all other drug routes all which eventually became unsuccessful, they are now on the strong pain meds I'm on & both report much improvement in RLS & sleep.
Can you send a copy of your wonderfully descriptive & emotive letter to your health care provider ?
Is there anyone in higher authority you can appeal to ?
We can go to our primary care giver GP and ask for a second opinion Specialist/Consultant through our NHS - although often a long waiting list
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yes, I live in the USA so I can go most anywhere but the label follows me wherever I go that I was at X-clinic, x-clinic..it doesn't help me to get pain killers if I do
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Thank you Booklover, I do see a specialist.. the specialist referred me to a pain clinic because he no longer wants the responsiblity of prescribing pain killers. The FEDS are looking on too closely and there are certain criteria for when stronger drugs are prescribed.. I am not in that category. I do not have a cancer and expect to die soon nor did I have a big surgery in the past 2 months.. Now that doesn't mean that he cannot prescribe for someone who's broken their back 2 times and has severe pain from it.. but it doesn't fit for someone like me with some back pain and RLS or what I have going on now... not long term pain medicine anyway... so I guess only time will tell. The Bisporone is the start of the weaning process of strong narcotics...I was put on it last visit and was told that I will gradually cut down on pain medicines.. Why? It's not good to be on them for any extended period of time... that is so bullcrap. (usa word) Again,
as is, I get very limited supply for the month..so it won't be so hard to go
through the withdraw but it will be bad at night for RLS to start up again.
No.3 reply Again cut me off- definitely weird
although often a long waiting list
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Good, it gives me a chance to say more quickly.. the pain specialist wants me to take 3 different anti-depressants at the same time to change my attitude about pain. It's part of that push pain away from my body program that they want me to learn..it will be mind over matter.. Now don't think that he's a quack just yet.. 3 of my other doctors think that it's a great thing and I will do super well with the newest craze...I will sit alone often and have to visualize, breathe correctly and meditate.. try that on your work break once and by the way, that's going to happen to me several times a day or whenever I feel pain or rls - nuts, I say...and It's all getting approved by the insurance company as we speak..
I know what u are saying one Dr. told me that the dna that doesn't look right , they check on just about ever narcotic that they write andwe know that is the only thing that works and that has to be changed ever few months
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