Hello All RLS Sufferers,
I have a question... I have an appointment with a doc tomorrow and was wondering what he is likely to put me on. My husband and I have been trying to conceive for 6 years now and I have had 2 losses. Everything that I have read about the presciptions such as Mirapex etc said do not take if pregnant or intend on becoming pregnant. We will start fertility trreaments again in a few weeks. But, this pain and not being able to sleep is killing me.
Any suggestions anyone on how to approach this with the doc. I don't want to come over as if I only want narcotics but I am going insane. I have had to quit my job and have 2 adopted children I can't even spend time witrh b/c I am so sleepy and ill all the time.
I need help and suggestions... PLEASE!!
Thank and God Bless!!
Prescription pain meds for rls (reposted my Sojourner)
Prescription pain meds for rls (reposted my Sojourner)
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
HI SORRY TO HEAR OF THE PREAGNACY PROBLEMS. I ALWAYS TELL MY DOCTOR THAT I AM NOT ADDICTED TO PAIN KILLERS, I'M ADDICTED TO SLEEP!!!! UNFORTUNATLY, I DON'T THINK THERE IS ANYTHING YOU CAN TAKE THAT WOULD NOT AFFECT THE BABY AND ALSO HELP. I HAVE IT PRETTY BAD AND NONE OF THE OTHER DRUGS WORKS LIKE MIRAPEX AND ALL THOSE OTHER ONES. THE OMLY THING THAT WORKS FOR ME IS PERCOCET AND OTHER PAIN KILLERS. ALSO WHEN YOU ARE PREGGERS, I HEAR THAT IT CAN HAPPEN THEN ALSO ...THE RLS BUT SINCE U ALREADY HAVE IT I GUESS IT DOESN'T MATTER. SORRY FOR THE BLEEK ADVICE OR OPINION. RLS SUCKS. AFTER YOUR DONE WITH THE BABY TRY THE PAIN KILLERS. I KNOW IT SOUNDS BAD BUT IF IT WEREN'T FOR THEM I PROBABLY WOULD HAVE KILLED SOMEONE BY NOW.... YOU KNOW NO SLEEP!!!
JOHN
JOHN
-
Polar Bear
- Moderator
- Posts: 8816
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hi Sojourner,
You must be having an awful time at the moment. Trying for a baby, looking after two little ones, 2 losses, and on top of all that coping with rls, feeling ill and needing sleep.
What I'd suggest is an email to Dr B, just as you have posted here, and I reckon he would be happy for you to show his reply to your doc.
Dr B will know you are not just seeking narcotics, but need them for quality of life. He has previously given me permission to show his reply to my doc, and my doc was happy to take heed.
Best wishes
You must be having an awful time at the moment. Trying for a baby, looking after two little ones, 2 losses, and on top of all that coping with rls, feeling ill and needing sleep.
What I'd suggest is an email to Dr B, just as you have posted here, and I reckon he would be happy for you to show his reply to your doc.
Dr B will know you are not just seeking narcotics, but need them for quality of life. He has previously given me permission to show his reply to my doc, and my doc was happy to take heed.
Best wishes
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
Most pain meds of any kind are dangerous to take during different stages of pregnancy, either dangerous for the mother, or fetus, or both..
I'm, pretty sure the only medication you could take for the near entire length of your pregnancy, and -possibly- up through child-birth is most likely going to be Methadone.
I'm, pretty sure the only medication you could take for the near entire length of your pregnancy, and -possibly- up through child-birth is most likely going to be Methadone.
Welcome to the board.
All have given you some good things to think about and I wanted to add something from the Foundation.
The link below is to a page that is really a PDF file about pregnancy and RLS, but you can print it off for your doctor.
http://www.rls.org/Document.Doc?&id=183
If that link does not work, then go to the link below and scroll down til you see the topic or header for this download.
http://www.rls.org/Page.aspx?pid=524
Not all docs understand RLS and pregnancy, but this information comes from our community's experts, so it has a bit more credibilty to it.
I'm sure your doing everything right, hot baths, heating pads, walking around, but with two little ones at home and hopefully one to come, you need your healing sleep and peace of mind.
There are choices out there and some docs are more educated than others. If you and your present doc have a good working relationship, then just think about educating him or her. You might be helping someone in the future.
I hope your dreams of a baby come true, but I also hope that you get the right treatment to make it through pregnancy, as well.
Wishing you well and again welcome.
Lynne
All have given you some good things to think about and I wanted to add something from the Foundation.
The link below is to a page that is really a PDF file about pregnancy and RLS, but you can print it off for your doctor.
http://www.rls.org/Document.Doc?&id=183
If that link does not work, then go to the link below and scroll down til you see the topic or header for this download.
http://www.rls.org/Page.aspx?pid=524
Not all docs understand RLS and pregnancy, but this information comes from our community's experts, so it has a bit more credibilty to it.
I'm sure your doing everything right, hot baths, heating pads, walking around, but with two little ones at home and hopefully one to come, you need your healing sleep and peace of mind.
There are choices out there and some docs are more educated than others. If you and your present doc have a good working relationship, then just think about educating him or her. You might be helping someone in the future.
I hope your dreams of a baby come true, but I also hope that you get the right treatment to make it through pregnancy, as well.
Wishing you well and again welcome.
Lynne
-
mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Pregnancy and RLS information
if you go to www.rlshelp.org and click on RLS treatments and then scroll down to "Other RLS/plmd Treatments" Then scroll down to number 7 "Pregnancy and RLS. you will find this info..
______________________________________________________
copied/pasted from www.rlshelp.org
_______________________________________
7) Pregnancy and RLS
Pregnancy can cause a worsening of RLS (in at least 50% of patients who have RLS and become pregnant) or be the first time that a patient experiences RLS symptoms. It usually occurs in the third trimester and has been reported in up to 12% of all pregnancies. 10% of women will have their first experience with RLS during pregnancy. The RLS symptoms will usually go away after the pregnancy, then often come back later in life. Various problems such as iron or folate deficiency have been postulated as causes, but the real reason why RLS worsens with pregnancy is unknown.
If the symptoms are severe enough to warrant drug therapy, then the sedative category of medication has been used for treatment (with the approval of the patient's obstetrician). Many RLS specialists will prescribe the opioid category of medication during pregnancy, due to their safety in pregnancy.
The risk of RLS medication in pregnancy is as follows (Category A,B,C,D,X, where A is the best and X is the worst and should never be taken during pregnancy; Category A drugs are quite safe and have a proven track record in pregnancy, Category B drugs have limited data and experience and should be used only if clearly needed, Category C drugs generally have no adequate or well controlled studies in pregnant women and should be used only if the potential benefit justifies the potential risk to the fetus):
Pregnancy Risk Category
Drug Name
A
None
B
Pergolide (but limited data), Ambien, Percodan (short term use), Dostinex, Ambien, methadone (low dose), Percocet, Percodan, OxyContin
C
Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Vicodin or Lortab (for short term use), Sonata, Lunesta, Tegretol, Neurontin, Catapress
D
Xanax, Klonopin (and most benzodiazepine sedatives),
Darvon, codeine, Vicodin, Percodan, all for long term use, methadone (higher doses)
X
Restoril
Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.
Nursing mothers can be treated with Darvocet (Darvon). Small levels of this drug will get into the breast milk, but no adverse effects have been noted in the infants getting the breast milk. Sedatives do get into the breast milk and can cause lethargy in the infants, so this class of medication should be avoided in nursing mothers. Dopamine agents may decrease lactation (milk production).
For more information on the risks of drugs in pregnancy or with breast feeding check out Motherisk Program or the Organization of Teratology.
(8) Quinine
This drug rarely (less than 5%) helps RLS and is only included on this page to help avoid RLS sufferers from receiving this drug for their disorder. It is probably one of the most common drugs prescribed by doctors unfamiliar with RLS when they hear the RLS complaints of their patients. This inappropriate treatment occurs because the RLS symptoms are confused with leg cramps for which quinine is the correct treatment.
We have received several reports from RLS sufferers that quinine has helped them, but we cannot be sure whether they have RLS and leg cramps, or in fact only leg cramps. I have treated several patients who definitely had RLS and found that quinine helped (sometimes very significantly) their RLS, but this is still a very small minority of RLS sufferers. As with many of the treatments above, some remedies seem to help only a few RLS patients and therefore cannot be recommended to the majority.
(9) Other RLS Information and Associations
Summer RLS
Many patients have found that there is a seasonal variation in their RLS. They do fairly well for most of the year, then start to have worsening of their RLS symptoms in the late spring or early summer. This generally will occur with a change in the weather to hotter and more humid. There is of course, no understanding of why this phenomenon occurs.
The treatment of this increased RLS in the summer is to increased the dose of current medication. If that does not suffice, then addition of other classes of medications may be necessary until the fall months.
Menstrual Cycle RLS
There is a subset of female RLS sufferers who find that their RLS symptoms wax and wane with their menstrual cycles. Generally the RLS will worsen before menstrual flow and abate several days after. This seems to follow the pattern of PMS. This association is not understood at all and brings up the question if RLS is associated or related to PMS or other hormonal conditions (such as RLS in pregnancy).
We have also seen changes during the onset of menopause and after menopause. This can vary quite a bit amongst female patients with RLS. Some RLS sufferers will have their RLS complaints get better with menopause, and some have even noted worsening if placed on estrogen
hope this is helpful to you, there is alot of great rls info on this the listed web site.
______________________________________________________
copied/pasted from www.rlshelp.org
_______________________________________
7) Pregnancy and RLS
Pregnancy can cause a worsening of RLS (in at least 50% of patients who have RLS and become pregnant) or be the first time that a patient experiences RLS symptoms. It usually occurs in the third trimester and has been reported in up to 12% of all pregnancies. 10% of women will have their first experience with RLS during pregnancy. The RLS symptoms will usually go away after the pregnancy, then often come back later in life. Various problems such as iron or folate deficiency have been postulated as causes, but the real reason why RLS worsens with pregnancy is unknown.
If the symptoms are severe enough to warrant drug therapy, then the sedative category of medication has been used for treatment (with the approval of the patient's obstetrician). Many RLS specialists will prescribe the opioid category of medication during pregnancy, due to their safety in pregnancy.
The risk of RLS medication in pregnancy is as follows (Category A,B,C,D,X, where A is the best and X is the worst and should never be taken during pregnancy; Category A drugs are quite safe and have a proven track record in pregnancy, Category B drugs have limited data and experience and should be used only if clearly needed, Category C drugs generally have no adequate or well controlled studies in pregnant women and should be used only if the potential benefit justifies the potential risk to the fetus):
Pregnancy Risk Category
Drug Name
A
None
B
Pergolide (but limited data), Ambien, Percodan (short term use), Dostinex, Ambien, methadone (low dose), Percocet, Percodan, OxyContin
C
Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Vicodin or Lortab (for short term use), Sonata, Lunesta, Tegretol, Neurontin, Catapress
D
Xanax, Klonopin (and most benzodiazepine sedatives),
Darvon, codeine, Vicodin, Percodan, all for long term use, methadone (higher doses)
X
Restoril
Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.
Nursing mothers can be treated with Darvocet (Darvon). Small levels of this drug will get into the breast milk, but no adverse effects have been noted in the infants getting the breast milk. Sedatives do get into the breast milk and can cause lethargy in the infants, so this class of medication should be avoided in nursing mothers. Dopamine agents may decrease lactation (milk production).
For more information on the risks of drugs in pregnancy or with breast feeding check out Motherisk Program or the Organization of Teratology.
(8) Quinine
This drug rarely (less than 5%) helps RLS and is only included on this page to help avoid RLS sufferers from receiving this drug for their disorder. It is probably one of the most common drugs prescribed by doctors unfamiliar with RLS when they hear the RLS complaints of their patients. This inappropriate treatment occurs because the RLS symptoms are confused with leg cramps for which quinine is the correct treatment.
We have received several reports from RLS sufferers that quinine has helped them, but we cannot be sure whether they have RLS and leg cramps, or in fact only leg cramps. I have treated several patients who definitely had RLS and found that quinine helped (sometimes very significantly) their RLS, but this is still a very small minority of RLS sufferers. As with many of the treatments above, some remedies seem to help only a few RLS patients and therefore cannot be recommended to the majority.
(9) Other RLS Information and Associations
Summer RLS
Many patients have found that there is a seasonal variation in their RLS. They do fairly well for most of the year, then start to have worsening of their RLS symptoms in the late spring or early summer. This generally will occur with a change in the weather to hotter and more humid. There is of course, no understanding of why this phenomenon occurs.
The treatment of this increased RLS in the summer is to increased the dose of current medication. If that does not suffice, then addition of other classes of medications may be necessary until the fall months.
Menstrual Cycle RLS
There is a subset of female RLS sufferers who find that their RLS symptoms wax and wane with their menstrual cycles. Generally the RLS will worsen before menstrual flow and abate several days after. This seems to follow the pattern of PMS. This association is not understood at all and brings up the question if RLS is associated or related to PMS or other hormonal conditions (such as RLS in pregnancy).
We have also seen changes during the onset of menopause and after menopause. This can vary quite a bit amongst female patients with RLS. Some RLS sufferers will have their RLS complaints get better with menopause, and some have even noted worsening if placed on estrogen
hope this is helpful to you, there is alot of great rls info on this the listed web site.