MARCH 2022 - New Members

[badnights]

Welcome today to BobS, who has suffered from WED/RLS for over 40 years and says that meds do not work any more. BobS is looking for other treatments.

BobS, I think you will find out, as you investigate this site and read through some of the post topics, that only one class of medications stops working, generally: the dopamine medications like ropinirole/Requip, pramipexole/Mirapex, and levo-carbidopa/Sinemet. There are three other classes of medication that keep working, mostly: iron therapy; the alpha-2-delta ligands like gabapentin, Horizant, and pregabalin; and the opioids like hydrocodone, oxycodone, and methadone. Unfortunately once you've been damaged by a dopamine-type med, the alpha-2-deltas don't work very well anymore, so you may be left with only the opioids and iron. (There is also work going on, in its very early stages, on another class of medications that work on our adenosine receptors.)

There are also alternative therapies, and many of them are worth investigating, but no non-pharmaceutical approach so far has been universally effective for anyone who tries it.

Most of us use a combination of different classes of medication as well as other tools and coping techniques.

If you post a note in this Forum, or any other forum that seems appropriate, members and moderators will reply. Let us know what medications you've tried and how they didn't work. You might benefit from reading about augmentation, if you haven't already (check the link in my signature). Augmentation is a worsening of the RLS/WED symptoms caused by the dopamine-type meds. Most doctors STILL don't realize that dopamine-type meds should NOT be given to WED/RLS patients unless other treatments don't work, and even then only under carefully controlled conditions. Increasing the dose of the dopamine-type med makes the symptoms even worse. The doctor (and patient ) think it's a natural progression of the disease, and raise the dose again, which makes things even worse.

This vicious cycle can be broken. If that's what you have been going through, we can advise you on that.

Most doctors also don't know that iron levels in the blood can be OK even when the brain is severely deficient in iron. So, often the best treatment is iron. We can discuss that more if you haven't tried it.

Let us know what your situation is, and our collective experience should chime in to give you some options and point you in new directions.

[Rustsmith]

Sunday, March 20

Welcome to

JPCahill, who can no longer take any appointments in the morning. Mornings are the only times JPCahill can get decent sleep.

There are a number of ways to improve your sleep, depending upon whether your issue is due to insomnia or if it is being driven by medication (such as augmentation from a dopamine agonist). If you would like some suggestions for how to get your sleep under better control so that you have mornings, afternoons and evenings, just post a note to provide us with a bit more detail about your sleep issues. It could be as "simple" as a medication change or as easy as changing lighting in the evening and "early morning" to reset your clock so that it is in sync with the rest of society.

[Rustsmith]

Tuesday, March 22

Welcome to

Butchertcb, who suffers from RLS. Butchertcb's life is suffering ever day and night.

We would love to be able to reduce the suffering that you experiencing every day. If you would be willing to tell us a bit about what you are currently doing to manage your symptoms, we may be able to offer some suggestions for you to discuss with your doctor.

[Rustsmith]

Wednesday, March 23

Welcome to

Catcrazy23, who loves the site and wants to be able to post. She has had severe RLS for 12 years.

We look forward to seeing your posts.

[Rustsmith]

Friday, March 25

Welcome to

UsernameLOL, who has had RLS all her life - luckily not horribly intrusive - but her dad's got worse with age so she is trying to be proactive. She went searching online when it did get horrible when she had covid, that's when she discovered this site. OMG She has to add this - our antirobot question asked what letter was repeated in GREEN. She went searching the page for green letters and was confused when she could not find any HAH! Well, she hit "Submit" anyway, thinking that might make green letters appear and then she could answer. When a new question popped up, it popped into her head what the first question meant! We have to keep a sense of humor with this stuff, right???

Yes, we need a sense of humor, just like your username Please feel free to post a note with any questions that you have. We would love to hear more from you.

[Rustsmith]

Friday, March 25

Welcome to

mef2032, whose 7 year old son appears to have RLS, and she is looking for relief. It appears to affect his whole body, all limbs and trunk.

RLS isn't just limited to the legs. It can it just about any voluntary muscle. Arms, hands, abs, etc are all areas were RLS can occur.

Since your interest is for your son, take a look at our forum on Special Populations. You should find some good info there on pediatric RLS. You can also post a note with any questions that you have so that we can try to help you out.

[Polar Bear]

Friday 25th March 2022

Welcome today to:

mykrobrst who after moving to the sonoran desert has developed blurry vision along with RLS that is not controlled by gabapentin. mykrobrst has tried dopamine agonists as well as aminos that are dopamine precursors with same intolerable side effects. Gabapentin is all mykrobrst has now and too is intolerable but its all there is right now. By having to take gabapentin, mykrobrst's life is complete chaos from the side effects.

Please make a post telling us about your rls symptoms and what medications you have tried that have or have not worked. Including any over the counter medications. Tell us what doses you have taken and what dosage of Gabapentin that you are taking now. Please also tell us what side affects you are having from the Gabapentin. Have you had your Ferritin Serum Bloods checked. This is not normally done with normal routine blood testing and you have to ask for it. It is an important test.
We are all rls sufferers here and we understand. Please make a post telling us as much as you can and it will give us a place to start from, we want to help.

[Rustsmith]

Friday, March 25

Welcome to

mykrobrst, who after moving to the Sonoran desert has developed blurry vision along with RLS that is not controlled by gabapentin. He has tried dopamine agonists as well as amino acids that are dopamine precursors with same intolerable side effects. Gabapentin is all he has now and it too is intolerable but its all he have right now. By having to take gabapentin, his life is complete chaos from the side effects.

Gabapentin doesn't work for about 35% of RLS patients. As for dopamine agonists, our problem is with the dopamine receptors, so taking dopamine precursors wasn't likely to help. Have you had your iron levels checked, especially ferritin? Low brain iron is the root cause of RLS symptoms and for some people, this can be caused by low iron levels in the body (for the rest of us we simply cannot get it to cross the blood/brain barrier to where we need it.

If your iron levels are good, gabapentin (and Lyrica) don't work and the dopamine side effects are unacceptable, then the next step is often an opioid.

But if marijuana is legal in your area, THC seems to help some of us, especially when it comes to problems with sleep.

Whatever the case for you, if you would like to get other suggestions from our members, feel free to post a note with your questions and we will try to answer them.

[Rustsmith]

Saturday, March 26

Welcome to

Robc72387, whose severe RLS has impacts his life and has interfered with work, family and friends and has caused insomnia

Those are all issues that any of us can relate to. If you have any questions or need suggestions to improve the treatment of your RLS, just post a note and we will do what we can.

[Rustsmith]

Saturday, March 26

Welcome to

MurmuringSeas, whose RLS has been the most debilitating thing she has ever experienced and she has suffered from severe mental illness since she was in her teens. It has gotten so severe over the last 4 years that she has thought about cutting her legs and arms off and ending it all (more recently) more times than she would like to admit. And all just to be rid of it even though she wants nothing more than to live. RLS has pretty much ruined her life, as dramatic as that may sound, that is the truth of it.

We can all relate to your situation. The comment about cutting off legs is something that pops up frequently, but since RLS is a disease of the brain, all that accomplishes is to cause phantom limb RLS.

Since you mentioned mental illness, are you taking anti-depressants and has your psychiatrist told you that psychiatric meds are usually RLS triggers?

If you have any questions or there is any advice that we could provide (such as medication suggestions), please post a note and tell us what we can do to help you gain control over your RLS symptoms.

[Rustsmith]

Sunday, March 27

Welcome to

Mia Hughey, who suffers from RLS day and night. She is a 47 yr old woman. RLS is torture, and she is searching for help or ways to help herself. She is also a Registered Nurse.

Are you currently taking any sort of medication to manage your RLS? Do you know what your ferritin level is and if so, is it over 75?
Please feel free to post a note with any questions that you have. You may also find what you need from this recent publication
https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Tuesday, March 29

Welcome to

hHelp!, whose RLS has ruined his life. He can't rely on sleep, even if he can get "sleep" he is not rested.

We would love to be able to help you out. If you are willing to post a note to tell us what you are currently doing to manage your symptoms, we may be able to offer some suggestions to discuss with your doctor that will help you get better sleep.

[Rustsmith]

Tuesday, March 29

Welcome to

helenbythesea, whose RLS symptoms are on and off, but now on more than off and that makes her dread going to bed.

Dreading bedtime is something that anyone with RLS can relate to. If you have any questions or would like suggestions on how to improve the management of your symptoms, post a note to ask your questions and/or to tell us what you are currently doing for your RLS.

[Rustsmith]

Tuesday, March 29

Welcome to

Dkb1229, whose RLS is beginning to get uncomfortable enough that is affecting Dkb's daily routine. So, Dkb is scared that it will get worse over time.

Unfortunately, RLS is a condition that often increases in severity with age. But there are also many things that can be done to manage the symptoms. If you have questions or would like suggestions on how to improve the control of your symptoms, just post a note and tell us what you need to know.