March 2024

[Polar Bear]

14 March 2024

Welcome to

rskidmore who was diagnosed with RLS after 4 trips to the emergency room. Due to living in a small town, none of the ER personnel had observed a person experiencing RLS. Each time, rskidmore was given a prescribed sleep aide and went home. It wasn't until after expressing to the PCP that the incidents had to be something else that a sleep disorder. Thankfully, after reviewing extensive bloodwork, rskidmore was diagnosed with RLS and now takes medications, but they don't always work.

Indeed, medications don't always work. I wonder was your Ferritin Serum checked during the bloodwork and if so do you know the result, the actual number, which as an rls sufferer you'd want it to be up around 100.
Please feel free to post and ask questions. If you give us some background information regarding your rls treatment we will try to help you.

[Polar Bear]

20 March 2024

Welcome today to

Squirrel who is constantly tired. Bedtime sucks. Squirrell hates driving anywhere because of havng to sit and sitting on the commuter bus to get to work is dreadful.

RLS seems to affect all aspects of life. Have you had your Ferritin Serum checked and do you know the exact result, it should be up around 100 and not just what is generally accepted as normal, i.e. 20+. What treatment is your doctor providing.
If you will make a post providing details of your RLS treatment, what you have done to seek relief, we will do our best to help you.

[Polar Bear]

Friday 22 March 2024

Welcome today to

Chris25 who has had RLS for 2 years. Seen local family and neurologist doctors and no answers.

It's not good that none of your doctors have been able to help. Have you been provided with any treatment. You need to have your Ferritin Serum level tested, a blood test which needs to be specifically requested and as RLS sufferers we benefit if our levels are up around 100.
If you will make a post and tell us what has been done to help you so far, has anything helped, are you taking any medications, then we will be able to try and help you.
The link in my signature is useful for guidance, especially if a doctor is willing to learn.

[Polar Bear]

Monday 25 March 1024

Welcome today to

Ellieb who has RLS and needs to find solutions to sleep at night.

The search for sleep is something all of us RLS sufferers understand, we know how you feel. Are you being treated for your symptoms and does it help. If you have any questions please feel free to post and ask, giving a background to your current and previous treatment. We are here to try and help.

[Polar Bear]

25 March 2024

Welcome today to

dianedaken who now sleeps in a separate bed from her husband of over 40 years.She is sleeping during day. Feel tortured at night. Misunderstood by medical.

Many times I'd move to the guest bedroom for the remainder of a night so as not to disturb my husband.
Are you taking prescribed medications to treat your rls symptoms and has anything been of benefit.
Please feel free to post and ask questions. We want to help and if you provide some details of how your rls symptoms have been managed so far it will give us a starting point.
Take a look at the link in my signature. This may help guide your doctor if necessary.

[Rustsmith]

Monday, March 25

Welcome to

dmarney, who is going through DAWS. So life is a mess!

There are two conditions that are frequently referred to as DAWS. The more common and less severe (but still extremely difficult) is withdrawal from any of the dopamine agonist meds, usually due to augmentation. This condition eases about seven days after the last DA dose and your RLS usually returns to its baseline level after about 30 days. A prescription for an opioid either greatly relieves or completely does away with this condition. The symptoms of this condition are extreme RLS and zero sleep for the first week (not even naps).

The more severe form of DAWS occurs when you abruptly stop taking a dopamine medication from a dose without first tapering down to a very low dose. The symptoms of this condition include severe anxiety, panic attacks, depression, low blood pressure, generalized pain, nausea, vomiting, etc. Some doctors will try to treat this with a return to low dose dopamine meds, but often with little success.

We can help provide advice and support if you are going through the first condition that I described. If you have the second one and it was caused by your doctor, demand a referral to a neurologist who specializes in movement disorders and who is familiar with options for treating DAWS.

[Rustsmith]

Tuesday, March 26

Welcome to

Ragnar, who has chronic RLS that is getting worse as he gets older (64). It is becoming very disrupting as he has 2 - 3 days with RLS all night and even occurring during the day when it gets really bad. The options for medications are not very effective and he has tried many. Currently, only pain meds resolve the issue but that requires a challenging approval from his doctors and health insurance which is becoming a major battle.

Many of us have to use pain meds to control our chronic RLS and yes, doctors and insurance can make them a major hassle even though we have no other alternatives. The two usual recommendations are to see a doctor at one of the RLS Quality Care Clinics, even if that requires travel or to find a doctor who is willing to be educated. If the latter, try sharing this document with your doctor: https://www.mayoclinicproceedings.org/a ... X/fulltext

It was prepared by many of the leading RLS experts with the goal of educating GPs that low dose opioids are an effective and safe treatment for RLS. As for insurance, that will always be a battle that we all must face.

If you have any questions, feel free to post a message and we will try to do what we can to help.

[Rustsmith]

Tuesday, March 26

Welcome to

Swamiail, who have been diagnosed with Peripheral Neuropathy and suffers from RLS every night. She also has leg cramping. It is ruining her life.

Has your doctor prescribed either gabapentin or Lyrica for the neuropathy and/or RLS. Those meds generally help with both conditions.

If you have any questions, please feel free to post a message so that we can try to assist you get your life back.

[Polar Bear]

Thursday 28 March 2024

Welcome today to

Bebley who has had forty years of difficult evenings and very little sleep.

Sleep is often our biggest issue. Good control of our rls symptoms will help sleep - although there is also an insomnia side to rls.
If you will make a post telling us what you have tried so far, what medications (if any) have or have not worked, this will guide us as we try to help you.
You will want to have your Ferritin Serum level checked and are looking for a level of up around 100. Make sure to find out the number, don't accept being advised that it is 'normal'. Normal can be anthing from 20+ which is not good enough for us.

[Polar Bear]

28 March 2024

Welcome today to

Lola who has difficulty sleeping , broke foot because up for days,dozed off walking and fell... Tired all the time from medications, when medication does work, tired and irritable when doesn't work.

Such exhaustion, we all understand this.
Very similar happened to me some years ago. Standing in the kitchen I fell asleep, fell backwards and my head hit the dishwasher. I lay on the floor until I was sure I wasn't hurt. But I could have been hurt and would have lain there all night as my husband upstairs didn't hear the bang, a big enough bang to leave a dent.
We are sorry to hear that you broke your foot but can well understand how this happened to you.
Do you know your Ferritin Serum Level this is important. Is your GP understanding of RLS treatment. Read through the Just Joined Forum which you should find informative and if you will make a post telling us how your symptoms have been treated we will do what we can to try and help.

[ViewsAskew]

30 March 2024

Welcome, dmalone8, whose RLS began in their mid 30s. Now in their 50s, they've needed medication to help control RLS for about 7 years. As dmalone8 ages, the symptoms and loss of sleep it causes is have a bigger effect.

Indeed - many of us find that and I sincerely wish this weren't so. Have a look around, ask questions, introduce yourself if you like - we'll help as best we can.

[ViewsAskew]

30 March 2024

We welcome pha3z who has had RLS/WED symptoms for many years, with constant aching and the urge to move.

What are you doing to alleviate your symptoms? Tell us more in a new post and hopefully we can help you diminish the impact on your life.

[Polar Bear]

Suday 31 March 2024

Welcome today to

Breesmom04 who has had restless legs syndrome for several years now and it seems to be getting worse. She is desperate to try to find some help with it.

Sometimes when RLS gets worse it is because of the medication you are using for treatment. Are you being prescribed a DA such as Ropinerole or Pramipexole. Very often these can eventually cause Augmentation and the only solution is to wean off these drugs. It might be useful if you took a look at the discussions in the Augmentation Forum and see if you can relate to any of them.
Also has your Ferritin Serum been checked and is it up near 100 and don't accept that it is 'normal', which can be anything from 20+. Know your level.
Please feel free to ask questions as we are here to try and help.

[Rustsmith]

Sunday, March 31

Welcome to

Kathy demchuk, whose RLS is causing no sleep! She cannot do any functions because if this.

One of the first things that drives patients to seek help is sleep and not the movement part. Are you currently taking a medication? Has your doctor done blood tests to check your ferritin levels?

If you have any questions, please feel free to post a message so that we can try to help you regain your life.