I have had this dreaded RLS for many years. Twice it went away but this time when it came back about four years ago it was like gang busters. I am a very severe case, in the legs, arms, and torso. And now I am starting to twitch in various places. 1mg 4x a day of requip and lyrica twice a day helps but I still have symptoms.
So the big question that keeps running thru my head anymore is how bad will this get? What is the long term outlook to expect? If this is suppose to get worse as a person gets older what do I (or any of us) have to look forward to when I'm already a very severe case?
Anybody have any Ideas as to what this can turn into?
symptoms are getting worse
For what it's worth, from what I've read here over the past few years, it seems like there comes a point at which the bodily system that normally protects a person from RLS becomes completely broken. Once that happens, it's as bad as it gets.
There are some pretty severe cases discussed here on the forums, but there does seem to be an upper limit on how bad they get. Yours sounds pretty bad. I don't know if it's as bad as it gets, but, from what you said, it may not be far off of the mark.
It's pretty cold comfort to know that the torturer doesn't have any any tools he hasn't already used on you, though.
On the bright side, if you're already at or near the worst point, there's nowhere to go but up, as science improves and new treatments evolve. I have to think the next few years will see much better drugs than Requip and Mirapex. I think Requip and Mirapex are as primitive in comparison to the future of RLS meds/treatment as lobotomies and electroshock were in comparison to Prozac for the treatment of psychological problems.
By the way, if you haven't previously, you might want to consider looking over the Maya Clinic treatment algorithm (http://www.mayoclinicproceedings.com/pdf/7907/7907Crc.pdf) with your doctor. It may be that there's a better option for you, now that your case is more advanced.
There are some pretty severe cases discussed here on the forums, but there does seem to be an upper limit on how bad they get. Yours sounds pretty bad. I don't know if it's as bad as it gets, but, from what you said, it may not be far off of the mark.
It's pretty cold comfort to know that the torturer doesn't have any any tools he hasn't already used on you, though.
On the bright side, if you're already at or near the worst point, there's nowhere to go but up, as science improves and new treatments evolve. I have to think the next few years will see much better drugs than Requip and Mirapex. I think Requip and Mirapex are as primitive in comparison to the future of RLS meds/treatment as lobotomies and electroshock were in comparison to Prozac for the treatment of psychological problems.
By the way, if you haven't previously, you might want to consider looking over the Maya Clinic treatment algorithm (http://www.mayoclinicproceedings.com/pdf/7907/7907Crc.pdf) with your doctor. It may be that there's a better option for you, now that your case is more advanced.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
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SquirmingSusan
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Hello and welcome to the forum. RLS is a scary thing to live with, especially when you're not getting good relief from the medications you're taking. It's hard not to project current misery onto the future and get depressed about it. But I do agree with Aiken that, now that RLS is being taken more seriously by researchers and doctors, new and better treatments will be developed.
In the meantime there is a lot you can do to improve your situation right now. It sounds like the Requip and Lyrica aren't giving you great symptom control, but there are lots of other options for treatment. Do go to the "New to RLS" section of the message board and read through the stickies at the top. There is a lot of information on treatment options and also information on things that you can do to lessen your symptoms without medication.
One thing that needs to be checked is your ferritin level. This is not the same as checking your iron or hemoglobin levels. It's a measure of the iron stores in your body. Many people with RLS find that raising the ferritin level above 50 can lessen symptoms. Always get tested, though, before taking supplemental iron because it can be toxic if you take too much. Sometimes something as simple as eating iron-fortified cereal once a day can really help.
Also, a lot of medications and even foods can aggravate RLS. Most antihistamines and antidepressants can make things worse. Also things like caffeine or alcohol, or even ice cream can aggravate symptoms in some people.
One more thing I thought of is that it seems like you're at about the maximum dose of Requip that's used for RLS. It seems like people usually top out at about 3 mg a day, so you're a bit above that. And if your symptoms seem like they're getting rapidly worse, you might want to read about augmentation, which is when the medication itself causes a worsening of symptoms.
Best wishes to you, and keep us posted. It can seem horrible at times living with RLS, but eventually you'll likely get to a more comfortable place.
In the meantime there is a lot you can do to improve your situation right now. It sounds like the Requip and Lyrica aren't giving you great symptom control, but there are lots of other options for treatment. Do go to the "New to RLS" section of the message board and read through the stickies at the top. There is a lot of information on treatment options and also information on things that you can do to lessen your symptoms without medication.
One thing that needs to be checked is your ferritin level. This is not the same as checking your iron or hemoglobin levels. It's a measure of the iron stores in your body. Many people with RLS find that raising the ferritin level above 50 can lessen symptoms. Always get tested, though, before taking supplemental iron because it can be toxic if you take too much. Sometimes something as simple as eating iron-fortified cereal once a day can really help.
Also, a lot of medications and even foods can aggravate RLS. Most antihistamines and antidepressants can make things worse. Also things like caffeine or alcohol, or even ice cream can aggravate symptoms in some people.
One more thing I thought of is that it seems like you're at about the maximum dose of Requip that's used for RLS. It seems like people usually top out at about 3 mg a day, so you're a bit above that. And if your symptoms seem like they're getting rapidly worse, you might want to read about augmentation, which is when the medication itself causes a worsening of symptoms.
Best wishes to you, and keep us posted. It can seem horrible at times living with RLS, but eventually you'll likely get to a more comfortable place.
Susan
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Polar Bear
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Hi CNash
Sounds like you need your meds sorted, the Mayo Algorithm is excellent to show your doc. (Folk will be getting tired of me singing its praises).
Betty
Sounds like you need your meds sorted, the Mayo Algorithm is excellent to show your doc. (Folk will be getting tired of me singing its praises).
Betty
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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maxietobias
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My symptoms are getting worse also. I have the same severe RLS in legs, arms and trunk--every day. I am at the maximum dose of Mirapex-1mg 3 times a day. I can't get in to see the Neurologist until May 8th and then I will see his nurse practitioner. I am considered a new patient because I haven't been in to the office since 2004!! I also have arthritis and lymphedema in my legs and am a diabetic. This is very hard to tolerate! My ferritin level is only 20 and I have been taking iron but no improvement yet. I see my family doc Thurs. Anything to ask him to do or to check? He has given me an Rx for Vicodin and I take 2 at a time without relief! Anybody found relief with complimentary medicine? I'm trying to figure out how I can wait it out for a whole month!!! 
Ruth
Ruth
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SquirmingSusan
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Ruth, have you read anything around this forum on augmentation? That is when the medication, the dopamine agonists, make the RLS worse. There has been a lot written on the topic, as a lot of us have suffered through that. Augmentation happens relatively quickly, much more quickly than the normal worsening of RLS over time. If that's what is causing the worsened RLS, then you're going to want to talk to the doctor ASAP about getting off the Mirapex.
As for the iron, it can be difficult to absorb enough iron to raise the ferritin levels. Do you take any heartburn/GERD medications like Prilosec? Those medications pretty much block any absorption of oral iron. You may need to get IV iron infusions to raise your ferritin levels up above 50. I had a series of 4 iron infusions last summer and they were pretty painless. Please ask your doctor about them.
Best wishes with it all.
As for the iron, it can be difficult to absorb enough iron to raise the ferritin levels. Do you take any heartburn/GERD medications like Prilosec? Those medications pretty much block any absorption of oral iron. You may need to get IV iron infusions to raise your ferritin levels up above 50. I had a series of 4 iron infusions last summer and they were pretty painless. Please ask your doctor about them.
Best wishes with it all.
Susan
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maxietobias
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Hi Susan-
Yes I've read about augmentation and I think that is what has happened. That's why I wanted to see my neurologist. He's the one who put me on Mirapex and told me how to increase as needed and not to go further than 1 mg 3 times a day. I'll mention this to my doctor but I don't know how much he knows about RLS. I've been on Mirapex for at least 5 years and it worked until now. I started out on just .5 mg once a day at bedtime.
What kind of doctor administers iron infusuons? Yes, I take Prevacid for GERD. I've taken it for more than 5 years and I know that is what is causing the problem. My sleep study doctor ordered the ferritin lab work along with magnesium. It was low also , so I'm taking Slo-Mag.
I hope my doctor can help me--otherwise I don't know how I'll be able to wait a month!!
Ruth
Yes I've read about augmentation and I think that is what has happened. That's why I wanted to see my neurologist. He's the one who put me on Mirapex and told me how to increase as needed and not to go further than 1 mg 3 times a day. I'll mention this to my doctor but I don't know how much he knows about RLS. I've been on Mirapex for at least 5 years and it worked until now. I started out on just .5 mg once a day at bedtime.
What kind of doctor administers iron infusuons? Yes, I take Prevacid for GERD. I've taken it for more than 5 years and I know that is what is causing the problem. My sleep study doctor ordered the ferritin lab work along with magnesium. It was low also , so I'm taking Slo-Mag.
I hope my doctor can help me--otherwise I don't know how I'll be able to wait a month!!
Ruth
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SquirmingSusan
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Hi Ruth. Maybe you can put in a phone call to your neuro and talk to a nurse? Hopefully you can get off the Mirapex and let your brain chemistry start settling down a bit. Usually it requires going on opioids for a time after quitting the dopamine agonists, and hopefully your neuro will be up on what to do when augmentation happens...
As for the iron infusions, I asked a family doctor to write me an order for them, and he did. Sometimes they're not covered by insurance, though. I had the infusions at the hospital in the outpatient chemo center. I have to imagine that if you have to pay for them yourself, that they're expensive. I had another doctor who had me take iron shots, in the butt. Probably not as expensive, because they were administered in the doctors office. Ouch, those hurt.
Good luck with it, and keep us posted.
As for the iron infusions, I asked a family doctor to write me an order for them, and he did. Sometimes they're not covered by insurance, though. I had the infusions at the hospital in the outpatient chemo center. I have to imagine that if you have to pay for them yourself, that they're expensive. I had another doctor who had me take iron shots, in the butt. Probably not as expensive, because they were administered in the doctors office. Ouch, those hurt.
Good luck with it, and keep us posted.
Susan
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maxietobias
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Thank you Susan for suggestions. I really appreciate just having you listen! Today I saw my family doctor and he listened to all my concerns without interruption. He took notes and he looked at and kept the algorithm from Mayo Clinic and a pamphlet for physicians put out by the RLS Org. I joined this org. recently. He put me on generic Neurontin and added another diabetes medicine after testing my feet and I could not feel the pin pricks in some areas---neuropothy. He took me off Mirapex and I already have Vicodin 2 tabs 4 times a day. He also took me off Lipitor for awhile. AND he will call my Neuro tomorrow and then call me back. I'm to return in two weeks.
I'm going to watch what I eat and take my blood sugar as instructed but haven't done and keep a pain diary. Thought I'd write some good news about doctors for a change--LOL--
Thanks again Susan for listening and for your advice---it helped !!
Ruth
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SquirmingSusan
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