i guess i've had this my whole life. i was just reading on the board some info that says summertime can make it worse. the dr has me on requip and he did that like i didn't have a choice of anything else. it seemed to help for a bit, but now he's having to increase the dosage. i stopped taking my wellbutrin but that hasn't seemed to help. i have noticed that if i take a phenergan it gets much worse.
what do ya'll think of the requip? it makes me a bit sleepy during the day but i can handle that. that seems to be the major side effect, but i wonder what all these drugs are doing to us.....
now it starts about 4:30 in the afternoon and i'm having tremendous leg pain. it's actually cooled off here a little too. so it seems it would be getting a bit better if the weather is having an effect on it. i'm no wimp. i had babies with no pain meds. but this is making me mentally wacko. i keep my own little supply of hydrocodone - i don't buy it off the streets - but it's given to me by a reliable person. and i take it but i'm worried about getting addicted too. i took one about 8 tonight and a requip and it helped for a bit, but here i am at 2:00am hurting again. is pain normal with rls??? an added benefit maybe????? hahahahaha
i also have a supply of ultracet - does that work or is it safer than the hydrocodone? i haven't told the dr i'm taking the hydrocodone. i will tell him next time i go.
personally i like the old pain drugs better than the new stuff like requip. i don't like new drugs period. my dad suffered from the inflammatories that were taken off the market a few years back. that stuff scares me, but i gotta get some help here. plus, i think sometimes my family thinks i'm just being lazy cuz i have to go lay down with the pain once the requip kicks in and the fidgeting subsides. i was in tears from the pain last night and tonight too.
i was also told last fall that i have fibro. i'm not sure - it seems that i have those symptoms, but i'm not sure where all these lines between symptoms get blurred, kwim???
any suggestions? i know i've covered a lot here, but ya know the drs can only spend about 10 minutes with ya and you guys have the syndrome and the experience. thanks so much!!!!!!!
Hi ab- Your symptoms and even the 4:30pm start are very similar to mine. When I took Requip and Mirapex-they made my legs feel less inclined to move but my leg pain was not affected at all! I also experienced "augmentation" after only one week- where my symptoms actually worsened during the day. The fact that hydrocodone works for you is not a suprise... I had a "stash" of that too and took it for months. Just so you're aware, one vicoden a night will not make you addicted. Despite it's bad rap, hydrocodone in very small amounts (1 tab), is not habit-forming. The problem with vicoden is that it only lasts 6 hrs-- so if your symptoms last longer then that, you will need to take a second one. (thus the 2am issue you are experiencing). I solved that problem by getting put on oxycontin. I take it at 4-5pm every night. It lasts for 12 hours and gets me through the evening and until the next morning. The problem is finding a doctor who will prescribe it. ps.. ultracet contains a "narcotic-like" substance which is less habit-forming then other narcotics. But it is also weaker which means it doesn't work for everyone. I'll let others step in and write more-- since I'm fairly new here! I hope you feel better soon.
my leg pain starts in the morning and last all day and night without pain meds. like FB the sinemet takes away the urge to move my legs but it doesn't take away the pain. i can't complain about my doc giving me pain med, he is giving me the strongest pain pill you can give. but like everyone else says i don't want to get addicted. but i guess if there is no cure, how can you be addicted if you can never quit taking the medicine? so i take them, get through work during the day and sleep at night with a little help from sleep meds too. i wish i didn't have to take any pills at all, but i believe i have resigned myself to the fact that i have no choice, either that or be a friggin basket case. i have hurt so bad, and been ignored by other drs, i think you do what you have to do to be somewhat pain free and able to function in your daily life for yourself and your family.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Hello to all and Welcome to Arobinson,
I have always had pain, ok, well 23 yrs mild and managable with a hot bath, out of my 42 right now. I did take Mirapex for almost 3 yrs, and not once did it take care of the pain. It did help in the begining, and just after the dose would be raised....but again it seems never helped the pain.
I think we are on a lucky streak with this one, only becasue, even though the docs rarely talk about it. Some of the experts finally gave in and added it to the list of ways to describe RLS to. In better words, it can be painful, and is for more than half of us. This is awesome ya'll, when I started around here, pain alwasy meant Fibro. And my pain is not Fibro, it's RLS.
Ok so on to thr topic, I think many oldtimers here would say that pain meds work, however! You really should try the Dopamines first.
1. it's a good test for the doc to see if any relief is come from taking them. And that is information to them, because dopamine drugs do work for so many of us, even if we still have pain.
2. It is and probably will be for a while the first line of defense against RLS.
3. THIS IS A RULE: stay at the lowest dose, of the cleanest form, of the lowest class of medication ,for the longest time possible. RLS is chronic and progressive for most of us, so we have plenty of time to go through a ton of meds. Sad, but until they cure us of it , it is true.
Ok, now for "IT's Just My Opinion" message.
Pain meds = Quality of Life for me. (which by the way still taking those statements) Starting at noon on a tipocal day my muscles start to pull in my thighs. It just keeps going until 5-7 am the next morning. Yes, even if I do walk a mile and half a night. It's just horrible some days, most this summer here in Dallas. Before I was FINALLY allowed pain meds, there were days I simply could not walk normal, well, or even close to useful.
Yes, my husband, doctor, and myself decided after years of trying many many combinations that pain meds were in order, simply for pain. What happened in the week to follow that first few days was like a healing for me. To be pain free, well almost total, and to a point that I could manage what was left, felt like a Blessing from God. A miracle after 9+ yrs at that time. Yes, I've had to up the dose, but remain steady most of the time for the past couple of years. Pain meds, changed my life as much as finding this board and these people, whom I love.
i am no more addicted to my meds, than my husband his heart meds. I might take acception to the sleeping pills, that I just cringe to be without. But the pain meds, if I dont' need them I don't take them and there are days I don't need all that I'm allowed or maybe it's just later in the day.
I no longer live my life on the sidelines, I'm living in my life. Quality of Life counts and chronic pain will just run you down emotionally and phsyically.
We've said it so much here, but I'll say again. Unless, you already show a lifetime or personal problem with addiction, studies show that RLSers do very well with pain meds, and most often do not become addicted. Pain meds are in order for many of us. They are hard to get only because the doctor giving them to you must know and trust you. Why? The DEA makes sure that docs are warned (often) about writing prescriptions for pain meds too often. Most docs will not write for pain meds until after they know you better and some never will. They will likely refer you to a pain clinic.
God Bless Dr. B. for going against the grain here. He truely understands that RLS is a disorder of variables. What is today, may not be tomorrow and he makes sure his RLSers have their own bag of tricks, like the RLS Rebel, Jill Gunzell, just it's in medication form. I'd walk miles for this man and do anything to get his thought process going across the community.
He also recommends that if you take pain meds..... start out with the lowest form in the lowest class of medications, in the cleanest form.
EX: Darvon, instead of Darvocet....which is Darvon with tylenol. The tylenol is not likely to help your RLS.
sorry this was so long, but it's a topic that pushes my buttons.
Hugs love and the moon to you all.
Lynne
thanks for all the info. i am on requip - started low and the doc has had to increase it jsut a few weeks ago and the symptoms start earlier in the day and now the pain has started, i've been having it for the last couple of weeks. i just didn't know pain was part of this syndrome. i've been taking hydrocodone (self medicating) and it seems to do the trick. problem is i can't function well on it. thank God the pain comes at night when i can be home, but it'd be nice if i could get out and do stuff. plus the requip makes my legs weak and unsteady and makes me dizzy too. i literally fall sometimes when i stand up after taking it. and the hydrocodone added to it makes for a trip!!!!! (literally and figuratively!!!) i tried a trip to wal mart after i took it last night - big mistake!!! i shouldn't have been driving. won't do that again!!!
anyhoo, i'm seeing a neurologist on thursday as referred by my primary care dr. hopefully we can establish a good relationship and he can recommend some things.
unless its a really bad weekend, especially if the weather has changed, i usually don't have to take as much pain med as i do during the week when i am sitting in my office chair all week. weekends i am up running around and legs just don't hurt as bad. sitting at work is what makes my RLS rage.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
arobinson, if the pain wasn't there before you started it, it maybe the Requip causing it. There have been several people on the boards (this and others) who have had pain in their legs from Requip.
Also, if the symptoms are starting earlier in the day, this is augmentation - a condition where the drug causes the RLS to become worse, more intense, or more frequent.
Glad you are seeing a neuro. One little word of caution - not all neuros know as much as others. The more you know, the better you can evaluate if he or she is doing the right things. According to the Mayo Clinic Algorithm (which describes how people with RLS should be treated with which meds), since you have augmentation, you should be taken off Requip and try Mirapex (another dopamine agonist). If you have no problems, great. If you also have augmentation on it, you should try a different class of medication and not try any more of the DAs.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
