February 2024 - NEW MEMBERS

[Rustsmith]

Thursday, February 8

Welcome to

rbelcher, who when experiencing symptoms, feels that life is not worth living. But, fortunately, rbelcher has found some things that get enough relief to feel the quality of life is encouraging. Unfortunately, Peripheral Neuropathy has appeared and like RLS, it is similar in impact and management.

I am glad that you have found things to help with your RLS quality of life, but understand how peripheral neuropathy just compounds your problems. Has your doctor tried you on gabapentin or Lyrica? It can help with both RLS and peripheral neuropathy.

And feel free to post a note with more details of your situation, some of our members have probably been where you are today and could share their experience with controlling both conditions.

[Rustsmith]

Thursday, February 8

Welcome to

Jimhilde324, whose RLS has ruined his sleep. He is retired but can’t schedule morning activities because he can’t count on a decent night’s sleep and therefore can’t count on having any enough energy in the morning. He also has a heart condition and doesn’t want to take any more drugs. So he is most interested in non-pharmaceutical remedies.

You can find out about physical and non-prescription treatments for RLS in those forums of our discussion page. Unfortunately, most of the ones that are available are not highly effective, especially when it comes to promoting sleep. If you have any questions, feel free to post a message. That is why we are here.

[Rustsmith]

Thursday, February 8

Welcome to

Obigram, who loses sleep and can’t eat sweets. Medications cause Obigram to have an addled brain the next day.

Has your doctor checked your serum ferritin level and is it at least 100? Many people with mild to moderate RLS can see substantial improvement just by increasing their iron levels so that their ferritin is over 100. And if you have any questions about this or other sides of RLS, feel free to post a message so that we can try to help you out.

[Rustsmith]

Friday, February 9

Welcome to

Maggie294, who has suffered for two years with severe RLS. She has tried so many medications and haven’t had much success.

Many doctors are not familiar with the proper procedure for starting treatment of RLS. You should first be checked for low ferritin levels (anything below 100 requires treatment). To learn more, read through the document that the link in my signature points to. And feel free to post any questions or comments that you have.

[Polar Bear]

10 February 2024

Welcome today to

Gigi5151 who has lived with RLS all her life. It has become worse now that she is over 50. She is suffering.

I wonder what medication you are taking (If any), are you taking requip or pramipexole and has it been regularly increased seeking relief which could mean augmentation. What medication has or has not worked. If you will post and provide us with your RLS history we will try and help.

[Polar Bear]

11 February 2024

Welcome today to

JulieFlani who has loss of sleep to the point that it's affecting her health, mind and mood. This had been going on for years. Julie has tried Ropinerole which helped stop RLS but side affects were bad. After weaning off if drug..RLS is worse!

Ropinerole is not now considered the best drug for RLS and it is a good thing that you are now off it. Well done. You say your RLS is worse, is it untreated at present? I suggest you start a Thread and tell us about your RLS and it's management of symptoms. What has or has not worked. This will give us a starting point to go forward.

[Polar Bear]

13 February 2024

Welcome today to

Monolight1 who wants to post on the forum and wants to see the others opinion.

You will find lots of information and opinions as you read through the various Forums. If you want to make a post feel free to do so on a relevant thread or alternatively start your own thread. All questions are welcome.

[Rustsmith]

Wednesday, February 14

Welcome to

edjed, who says that RLS is very frustrating. The uncertainty if the "buzzing" in his legs is going to occur in the evenings is always in the back of his mind. People don't understand what it is like, so it is better if he doesn't discuss it, which is very isolating.

We have all felt those emotions. They are the part of having to dealing with RLS that doctors do not understand and therefore have not really studied. If you have any questions or would like to discuss RLS with people who do understand, just post a message.

[Polar Bear]

15 February 2024

Welcome today to

pcragun who has had RLS for about ten years. pcragun has now augmented and will be attending the Mayo Clinic. Would like to interact with other sufferers.

You will find useful information throughout this discussion board and in particular the Augmentation Forum. Have you had your Ferritin Serum checked and make sure you know the level, it should be up around 100. Don't accept that it is 'normal', normal can be anything from 20+. Feel free to ask questions.
If you make a post and tell us of your RLS treatment regime we will do our best to help you.

[Polar Bear]

15 February 2024

Welcome today to

chapdave who over the 20 years, since he was first diagnosed with RLS, specialists have prescribed a variety of medications in hopes of alleviating the symptoms. These (as well as stretching exercises prior to bedtime, often supplemented by warm baths at midnight) were only marginally successful for 3–4 months periods. Over the last 12 months, a switch was made after augmentation from ropinirole to a gabapentin/ropinirole combination— in recent weeks, symptoms have flared up early morning, so that he rises typically at 4 AM.

You've had RLS for 20 years and will know what does and does not work for you. Often a combination of medications will have a better result than mono therapy. Are you taking your gabapentin twice daily to keep the level steady. If augmented you really need to get off the ropinerole, wean off it, and reconsider the way forward. Has your ferritin serum been checked (not part of normal blood tests, this needs to be up around 100) and if not you should have this done.
If you will make a post giving details of your current treatment regime we will do our best to guide you.

[Rustsmith]

Thursday, February 15

Welcome to

Mistyrox, who says that RLS is horrible and that she wouldn't wish it on her worst enemy. She lays in bed for hours moving and kicking her legs.

Have you tried the trick of soaking your legs in very hot water just before going to bed. This helps provide temporary relief for many of us. And have you discussed this with your doctor and has (s)he done blood work to verify that your ferritin level is over 100 (and not just "normal"). Iron supplements help many with low ferritin, but should only be taken under a doctor's supervision since too much can cause organ damage.

If you have any questions, feel free to post a message or add a comment to an existing discussion. We are here to help.

[Polar Bear]

16 February 2024

Welcome today to

mrmike7514 whose RLS has had a profound effect on his life. He felt fortunate to have such a mild case in his middle age and felt very very fortunate that he got to retire early (in 2013, at age 61) and sleep. However, the past ten years have seen two crazy incidents, that had severe effects on his health and well-being in other ways. A fledgling second career as an upright bass player was ended. In 2020 he suffered overnight onset arthritis/tendonitis in both hands. He regained the ability to play guitar after that one but has since had recurrences. Both injuries had the common theme of not moving enough in his sleep while strongly medicated (pramipexole + clonazepam + hydrocodone) as well as having nightmarish dreams that made him clench his hands (pramipexole). Music was his lifeline in retirement.

RLS changes the lives of sufferers, there's no mistake about that. It is sad to have retired with expectations that were not met. What dosage of pramipexole are you taking, augmentation can be an issue with this drug. And what is your ferritin serum level, around 100 would be good.
You might find the link in my signature useful, especially to talk to your doctor if you feel it necessary.
If you have any questions please post and we will do our best to help.

[Polar Bear]

18 February 2024

Welcome today to

Junebug who has had RLS for over 40 years. It has gradually gotten worse over the years spreading into her upper body. After retirement it has gotten out of hand. It prevents Junebug from getting a good nights sleep and dictates her social life. She finds joy in quilting and helping others.

Sleep is usually what drives an RLS sufferer to seek help and it is the challenge we all face. With good symptoms control this can usually be improved somewhat. Do you know what your Ferritin Serum level is, it should be over 100. Has your doctor done this check, it is not part of the normal blood panel and needs to be specifically requested. Is your family doctor supportive or are you perhaps attending an RLS neurologist for treatment.
If you will make a post providing details of your RLS treatment we will try to help.
(are you taking medication,tell us what has or has not worked) it is possible you have augmented.

[Rustsmith]

Sunday, February 18

Welcome to

Terry.Chgo, for whom augmentation has taken away some drug options so Terry is looking for alternatives.

You will find all of the latest RLS treatment recommendations in the document that the link in my signature points to. Our normal suggestion is to read through the document, highlight the points that are most relevant to you and then share it with your doctor with a statement that goes something like "I would like your thoughts about how the recommendations of these RLS experts applies to me".

And if you have any questions, just post a note. Most of us have been through augmentation and can sympathize with your current situation.

[Rustsmith]

Sunday, February 18

Welcome to

suza, who doesn't have a life anymore when evening comes. She can't sit down and relax without taking a xanax and that knocks her out.

Xanax is not an appropriate treatment for RLS. You need to be treated for RLS and not just insomnia. Has your doctor checked your serum iron levels and is your ferritin over 100 (not just normal). Have you tried gabapentin to help you fall asleep more normally?

There is a document that the link in my signature points to that was prepared by the leading American RLS experts specifically to educate GPs in the proper ways to treat RLS. Read through it, highlight a few sections and then share it with your doctor with a comment like "I would like your opinion of what these RLS experts have to say about RLS". If your doctor isn't willing to read it, ask for a referral to a neurologist or change doctors to one who cares about their patients' well-being.

And feel free to post a message with any questions that you have. We love to share our knowledge of RLS.