Restless Legs Syndrome (RLS) Discussion Board

4 October 2024

Welcome today to

Petey1953 who cannot sleep therefore it ruins his days. He cannot plan anything because he up all night.

RLS is indeed very destructive and affects all aspects of our lives. We know exactly how you feel. Are you being treated by your doctor and do you use any prescribed medication. Have you had your Ferritin Serum checked. This is very important, it needs to be specifically requested as it is not part of the usual blood panel. You will want to know the number/your level. Normal may be considered at around 20+ but us RLS sufferers benefit best if our levels are up around 100.
You will find much information here on the discussion board.
If you take look at the link in my signature you will find a document on the treatment of RLS prepared by several eminent RLS experts.
If you have any questions please open a thread and ask. We are here to try and help you.

Monday 7 October 2024

Welcome today to

Morgorm who has had rls/plmd her entire life. She has been tried on many meds, low dose opiods have worked the best but the stigma attached with these has made life very difficult and Drs are very reluctant to treat with these. Support groups have helped her deal with this.

RLS, as you have found, responds well to a low dose opioid. Doctors can be reluctant to prescribe these and I hope your doctor is more accommodating. Have you had your Ferritin Serum checked and if so make sure you know what your level is. Us RLS sufferers benefit if it is up around 100 and not just 'normal' which can be anything from 20+. If you have any questions please do post and ask and we will do our best to try and help you.

Monday, October 7

Welcome to

michellekapp, who is trying to keep informed about what is happening in relation to RLS. She recently weaned off Ropinrole due to augmentation and is really struggling to get a nights sleep.

Congratulations for getting off of ropinerole, that is not an easy task. For some of the latest info, read through the document that the link in my signature points to, or you can post a message asking any questions that you have.

Monday, October 7

Welcome to

VOX, who has had Chronic RLS w/ augmentation for 25 years.

After all this time, if there is anything that we can do to help, just post a message and let us know.

Wednesday 9 October 2024

Welcome today to

mcandi who started on an anti-depressant and as a result now has RLS. mcandi also has insomnia from the RLS and gets very little sleep. mccandi is hoping to get some advise or insight on this condition.

As you have found, an anti-depressant can trigger RLS. What is important is if you need an anti-depressant that you take it and then work to control the symptoms of RLS. Lack of sleep is an issue for us and normal sleeping aid medication rarely helps.
Have you had your Ferritin Serum checked and if so what is your level. It's important that you know this because although 'normal' may be accepted as 20+ us sufferers of RLS benefit if our level is up around 100. Sometimes raising your FS iron level is sufficient to help with RLS symptoms. This check is not done as part of the usual blood panel checks and must be specifically requested.

Some over the counter medications can aggravate RLS, such as Benylin. The link in my signature is a document prepared by eminent RLS experts regarding the treatment of RLS and is useful for discussion with your doctor. If you make a post providing some background about how you have been managing your RLS symptoms we will do our best to try and help you.

Thursday 10 October 2024

Welcome today to

Sunshine_801 who is a newbie to RLS Forums and asks where to start. Just wants to soak up and learn from others.

I would suggest you start by reading through the Just Joined Forum. For guidance regarding treatment of RLS and useful for discussion with your doctor take a look at the document linked in my signature. This document has been prepared by several eminent RLS experts.
If you have any questions feel free to post and ask. Giving some background about how you have been managing your RLS symptoms, including what has and has not worked for your, will be useful as we try to help you.

Friday 11 October 2024

Welcome today to

Lana who was diagnosed with RLS syndrome this summer. Before treatment started Lana was sleeping 3 times for 20 minutes each for all 24 h. Now she is trying to find treatment, but pills give a lot of side effects.

Sleep issues are what drive most of us to seek help. There are few (if any) medications that don't have side effects, but not all pills give all of the side effects. Often some side effects are quite manageable. Other times a different medication needs to be found. Is your doctor understanding and is he knowledgable. Importantly, have you had your Ferritin Serum level checked and what level is it. Make sure you know your level because although 20+ may be acceptable as 'normal', us RLS sufferrs will generally benefit if our levels are up around 100. Ferritin Serum is not automatically checked for on a general blood panel and must be specifically requested.
The link in my signature will take you to a document discussing the treatment of RLS and has been prepared by esteemed RLS experts. This may be useful to aid discussion with your doctor. If you have any questions please feel free to ask and we will do our best to help you.

Saturday, October 12

Welcome to

pexj, who has had RLS for 40 years. Recently it has gotten worse and pexj is having difficulty in getting treatment.

Are you having difficulty with treatment because your doctor doesn't understand what to do or because you need to find an RLS specialist.

If it is the first one, try reading the document that the link in my signature points at and then share that with your doctor.

If it is the second problem, you may need to call every local neurologist that accepts your insurance and then ask to speak with a nurse to ask about the doctor's experience with RLS or you may need to do a bit of travel by going to the nearest RLS Foundation Quality Care Clinic.

Or, you can simply post a question on the board and we will be happy to help as much as we can.

Saturday, October 12

Welcome to

Restless_Man, whose RLS is getting worse and nothing seems to help.

When nothing seems to help it obviously means that you are trying the wrong things. If your doctor has been prescribing meds, read through the document that the link in my signature points to to find out whether (s)he has been trying the right treatments. The dopamine agonists usually work at first, but stop working after a while and are difficult to stop. Iron supplements sometimes work, but can take months to become effective. Opioids virtually always work but are tough to get doctors to prescribe.

If you have any questions, feel free to post a message and tell us a bit about what you have tried so that we can try to offer specific suggestions.

Saturday, October 12

Welcome to

RosieM, who has had RLS for over 30 years. The last 10 have been the worst in terms of very disrupted sleep and decreased quality of life. She is currently dealing with augmentation from taking a dopamine agonist for the past 4 years and is trying to discontinue it at this time.

Dopamine agonist withdrawal is very difficult and unfortunately is something that most of the members of this board have experienced. You can learn more about augmentation by reading through our forum on that topic or by reading the document that the link in my signature points to. The easiest route through withdrawal is with the help of an opioid, even a weak one like tramadol or codeine. Unfortunately, the doctors that got us hooked on DAs usually don't realize how difficult withdrawal is and are not willing to even provide a week's worth of opioids to get you through the torture.

Please post a message with any questions that you have or simply to blow off steam as you suffer during the middle of the night. We want to do everything we can to help you get through this tough period of your life.

Tuesday 15 October 2024

Welcome today to

Leated who has had rls for 15 years. It has spread through Leated's entire body, mid-section is the worst. Started in the legs many years ago. Has been on 1800 mg. Gabapendin daily, 5-325 hydrocodone and zolpidem. It has affected Leated's life style horribly.

Spreading symptoms such as you describe sounds like augmentation. I am wondering if you have ever been on a Dopamine Agonist such as Ropinerole or Pramipexole as these are the drugs which are likely to cause augmentation. It could of course just be that your condition has become worse.
Zolpidem as a sleeping aid doesn't really help the insomnia that comes with RLS. It might make you sleepy but usually is not strong enough to overcome the RLS sympsoms. Please feel free to make a post and ask questions. We are here to do our best to help you.

Wednesday 16 October 2024

Welcome today to

wxokic - who is a 69 year old male who has had RLS for 50 years and has been on multiple doses of Mirapex/ pramipexole for 20 plus years, failed on requip, Horizant. Currently 3 days off pramipexole while on nuropro 8 patch. The augmentation is relentless, he feels like a zombie, sleeps 5 minutes at a time, can't function in life. Has spent years of nights fighting the sensations, on road trips in the car having to stop, get out and walk for a while, can't sit still in a meeting without constantly flexing his leg muscles and shaking them. At a theater having to sit on the end of the aisle so he can stick his legs out and move them or just get up and leave. wxokic feels he could write a book on this.

How you describe your symptoms of rls/augmentation is what we can all relate to. Indeed I can totally relate to your travel issues, difficulties in meetings, and going to the theatre as I was like this for many years, while using DAs. Is Neupro 8 patch your only medication at present. It is a dopamine agonist, just like pramipexole, requip etc. If you are augmenting you need to get off any dopamine agonist. This is a very difficult thing to do and if your doctor is RLS aware and fully understanding of augmentation, it would be so very helpful if he would prescribe you a low dose opioid while you wean off the dopamine agonist. Have you had your Ferritin Serum level checked and do you know your level. As an RLS sufferer you would want this level to be up around 100 and not just accept 'normal' which can be anythng from 20+. This test is not done as part of a general blood panel and must be specifically requested.

The link in my signature will take you to a document prepared by esteemed RLS experts in the treatment of RLS and would help with discussion with your doctor. You should also take a look at the Augmentation Forum. Please feel free to make a post and ask any questions that come to mind. When doing so, please give a background to what medication/dosages you have tried and what has or has not helped. Have you used anything other than the DA medications.

Thursday 17 October 2024

Welcome today to

megamuffin who gets little to no sleep three or four nights a week. Is miserable and dreads going to bed, can't get sleepy enough to sleep more than one-two hours. megamuffin is lucky to have a very patient understanding spouse.

Getting our RLS symptoms under control, or nearly under control, sufficient to allow us to sleep, is the goal of all of us RLS sufferers. The link in my signature is a document prepared by esteemed RLS experts laying out the best way to treat RLS and is very useful for discussion with your doctor.
Important - You need to know what your Ferritin Serum level is, this is a blood test which must be specifically requested as it is not on the general blood panel. 'Normal' may be around 20+ but us RLS sufferers benefit from a level up around 100.
Please feel free to ask questions. If doing so, do provide a potted history of any medications that have or have not helped. This gives us a starting point to try and help you.

Friday 18 October 2024

Welcome today to

bolingro who has been living with RLS, Physical neuropathy, and Type 1 diabetes for over 2 years now and needs to talk to other people who have this problem. bolingro has taken Pregablin, and is now on gabapentin but doesn't enjoy life this way.

Gabapentin often helps with neuropathy (I take Pregabalin and it certainly helps mine) but often is insufficient to help with RLS. Is Gabapentin the only drug you are taking for your RLS symptoms. The link in my signature will take you to a document which has been prepared by eminent RLS experts laying out the best ways of treating RLS.
Reading the Just Joined Forum is a good way to start to gather information. If you have any questions please make a post giving us the background to your RLS treatment. Providing details of any other medication you may have tried and whether they have or have not worked. This will aid us to try and help you.

Friday, October 18

Welcome to

BillH, whose wife has RLS and she is at her wits end. Doctor's don't seem to be much help and her next appointment with a Specialist at Mass General in Boston is a year away.

Unfortunately, most doctors including neurologists are often not familiar with the proper way to treat RLS. Fortunately for your wife, the doctors at Mass General include some of the leading RLS experts in the US. Yes, she has to wait for a year but if it is of any consolation, getting an appointment with any neurologist (not just RLS experts) often requires a wait of six months and many simply refuse to accept new patients.

In the meantime, if her current doctor is the type that might be willing to learn something from a patient, the document that the link in my signature points to has the most recent recommended treatments for RLS from the leading experts (including one at Mass General). Read through it and highlight a section or two that seem relevant and then hand it to her doctor with a statement like "I would appreciate your thoughts on how the recommendations from these RLS experts apply to me". DO NOT say that you found it on the Internet since that is a sure turnoff for almost all doctors.

And if you have any questions, feel free to post a message so that we can try to help you before her appointment next year.