JULY 2022 - New Members

[Rustsmith]

Friday, July 22

Welcome to

dlmarsh55, who has suffered with RLS for over 20 years.

Do you need suggestions on how to improve control of your RLS? Do you have any questions. If so, just post a message and we will do what we can to help.

[Polar Bear]

Saturday 23 July 2022

Welcome to

Brooker1980 who once again is up as her boyfriend sleeps because the pramipexole has run out due to increasing dosages. Soaking legs in steaming hot water, exploring possible hidden cures for the consistent pain and disruptive nightly visits.

You do need help to control your symptoms and it is generally agreed that medications such as pramipexole are no longer a first line treatment. If your pramipexole has run out is it because your increasing dosages are more than your doctor has prescribed? If you are having to keep on increasing your dosage then it is possible that you are augmenting which is a very common result when taking pramipexole. Also you may be having withdrawal symptoms if you have run out of pramipexole. Please do read the Augmentation Forum for information. If you will make a post in the Just Joined Forum and tell us about your symptoms, what meds you have tried, what has worked and has not worked, we will do our best to help and to answer any questions you may have.
By the way, have you ever tried soaking your legs in icy cold water.... that's what works for me.

[Rustsmith]

Saturday, July 23

Welcome to

dsolo, who may have had this since childhood. dsolo is 62 y/o now and has been on Miripex but is pretty sure tp have augmentation now. Sleep is becoming difficult. It is in dsolo's rt leg mostly but also left and upper limbs.

The other signs of augmentation are that it occurs earlier in the day and that you need to take more than you used to and are getting less benefit. If so, you will need to get off of Mirapex and not switch to another dopamine med (ropinerole or rotigatine). Stopping will also be very difficult, unless you can convince your doctor to provide you with at least six days worth of opioids to cover the withdrawal. You can learn more from our Augmentation forum or by posting a note and asking any questions that you have.

[Rustsmith]

Monday, July 25

Welcome to

Kafredricksen, who has Bipolar 1, has been on many meds for it that aggravate the RLS and has spent too many nights heavily sedated and walking. If Kafredricksen doesn’t sleep it can, and usually does, trigger a manic episode and so is stuck in a perpetual loop of suffering.

That is a tough one. If you are not currently seeing an RLS specialist, that might help, even if it means having to travel (and the usual six month wait for a new patient appointment. To find a specialist, try checking out the list of Quality Care Clinics on the RLS Foundation's website (www.rls.org).

[Rustsmith]

Wednesday, July 27

Welcome to

Cynthia, whose RLS is causing her to No get enough sleep, which is frustrating. She feels she is wasting time walking around half the night.

Is your RLS being treated? Has your doctor checked your iron levels? We may be able to offer some suggestions on how to get more sleep, but you would need to post a note to tell us a bit more about what you are currently doing to try to control it.

[Rustsmith]

Wednesday, July 27

Welcome to

BenjaminSmithis, who has had severe RLS (and restless arms) for the past 20 or so years. It consistently disrupts his sleep, leading to suboptimal mental and physical health.

Is your doctor treating your RLS? If so and you are willing to tell us a bit about your treatment, we may be able to suggest some things that will help you get better quality sleep.

[Polar Bear]

Friday 29th July 2022

Welcome to

Barbara k who has had mild to moderate RLS her entire life, self-diagnosed in mid-30s (Dx later confirmed by Primary Care Practitioner). After right hip replacement in 2018, weaning off Norco (hydrocodone + acetominophen) exacerbated existing RLS to absolutely epic, industrial strength proportions for 8 miserable MISERABLE SLEEPLESS weeks before eventually subsiding back to pre-surgical "normal" levels. Barbara's LEFT hip surgery is scheduled for mid-Nov 2022 -- and she needs to find a better way to manage any exacerbation.

Many sufferers feel that surgery can trigger or worsen RLS. Weaning off the norco following your right hip surgery in 2018, is it possible that weaning may have been done too quickly and you fell into a 'withdrawal' situation. It is very understandable that you wish to avoid a repeat exacerbation following your upcoming surgery on your left hip. Did your RLS remain controlled once it subsided to the pre surgical 'normal' levels.
If you would make a post/start a thread on the Just Joined Forum giving us some information about current medication and also any medications that did or did not work, your iron/Ferritin Serum level (did your doctor check for Ferritin Serum level, very important) we will try to help you. What do you do in the way of treatment.

[Polar Bear]

Saturday 30th July 2022

Welcome today to:

stinkywea - who has had rls for 6 years, been taking meds for it, dr just changed meds and now not working too good.

Welcome stinky, we would like to help you and to do so you will need to make a post giving us more information. If you go to the Just Joined section you can start a thread. Please tell us what medication/s you are now taking, what you have previously taken, what dosages you have been using. what has and has not worked. Also has your GP checked your iron, including your ferritin serum level which is very important.
Once we know about your treatment so far we will try and help with the way forward.

[Polar Bear]

Sunday 31 July 2022

Welcome to:

alissa.j.parker who has Restless legs syndrome during pregnancy and cannot sleep.

This can be difficult and I'd suggest you look at the Special Populations Forum where there may be coping in pregnancy information. You are very limited in what medications you can take.
If you also look in the Non Prescription forum you should find non med tips on how to manage your symptoms. The non meds can be hit and miss, what works for some doesn't work for others. My go to was to get my feet and lower legs into a bucket of icy cold water and my legs calmed within about 15 minutes. Other sufferers prefer hot water.
Please ask any questions and we will do what we can to help. Making a post and providing a brief history of your rls and any med would give us as starting point.

Edit: Your User Name looks like your real name. Please be aware this is a public forum and non members can read the posts.
For privacy purposes I'd suggest that you change your name to something unrecognizable.

[Polar Bear]

Sunday 31st August 2022

Welcome today to:

timothymottet who has had too many sleepless nights. Also, the medication has problematic side effects.

It is often the lack of sleep that first drives an rls sufferer to seek help. If you will make a post giving us some information about your medication, including previous medication which may or may not have worked, we will try and help. Please also tell us if you have had your blood iron checked including your Ferritin Serum.

NOTE: Your User Name looks like your real name. If so, for your own privacy, please consider changing it to a less recognizable User Name as this is a public site and posts can be read by non members.