SEPTEMBER 2023 - New Members

[Rustsmith]

Friday, September 1

Welcome to

cosmicmeow, who has been diagnosed with RLS and has low ferritin levels.

We are glad you found us, but sorry that you had to. Often increasing ferritin levels will address mild to moderate RLS symptoms. So, hopefully that will be enough for you. In case your doctor didn't explain, there are two approaches to low ferritin. The fastest is the use of an iron IV treatment, but that usually requires a hematologist that is willing to treat RLS and not just anemia. Otherwise, a daily oral supplement with at least 65mg equivalents of iron (that is 325mg of iron sulfate) along with vitamin C to aid in adsorption. Unfortunately, oral iron can take several months if your ferritin is very low.

If you have any questions or would simply like to join in any of our discussions, feel free to post a message.

[Rustsmith]

Friday, September 1

Welcome to

KayMSNRN, whose RLS has caused sleep deprivation, anxiety, and frustration. She is currently taking Gabapentin and low dose ropinirol, which provides inconsistent relief of symptoms. She is seeking additional treatment information and support.

The best source of information is the document that is accessed by the link in my signature. That is the latest set of recommendations by the US based RLS experts. If you have any questions, feel free to post a message and we will try to help you out.

[Polar Bear]

Saturday 2 September 2023

Welcome today o

bawauchope - experiences RLS symptoms in all extremities with both restlessness and pain night and day. While meds help sleep at night they also make bawauchope groggy and fuzzy-headed - cannot read as much, has less energy, and feels mildly depressed much of the time. Hiking and other strenuous exercise triggers symptoms. bawauchope feels disabled and limited in what can be accomplished.

Please make a post and tell us about your rls treatment, what medications/dosages have or have not worked. Do you know what your Ferritin Serum level is. Is your PCP supportive. If we know a little about your rls management and treatment we will do our best to try and help.

[Polar Bear]

Sunday 3 September 2023

Welcome today to


seeker whose rls affects the ability to sleep and be productive.

Lack of sleep is what usually drives an rls sufferer to seek help and we all understand how debilitating this is. The discussions will provide useful information. Please feel free to ask questions. If you start your own thread and provide details of your rls treatment we will do what we can to help.

[Polar Bear]

Monday 4 September 2023

Welcome today to

300fgt whose wife has had rls for 25 years and is now suffering from mirapex augmentation.

Augmentation is awful, It will be necessary for your wife to wean off the mirapex. You will find information in the link in my signature. Is your wife's doctor supportive. I suggest you make a post giving us details of all medications and dosages. This will help us to try and help you.

[Rustsmith]

Monday, September 4

Welcome to

shielagreen, whose RLS has caused lots of nighttime pain. She is awakened from solid sleep. It causes pain in the daytime in the calves of both legs, keeps her from getting adequate sleep, which created other health problems. She is willing to share thing that work for her in hopes that it will help others.

We look forward to hearing about what works for you and also what hasn't helped.

[Polar Bear]

Thursday 7 September 2023

Welcome today to

Mazefskydp who is up for most of the night, many nights, and is not getting much sleep.

Chasing sleep is something we all understand very well. Please do make a post giving us some information on how you are managing your rls symptoms at present. Are you taking any medications and what dosages. Has your doctor checked your terrific serum level. We can then do our best to try and help.

[Rustsmith]

Sunday, September 10

Welcome to

Cturman123, who has RLS and is looking for anything that might help her deal with the issue. She takes medication, but still have disrupted sleep.

You didn't say what medication your take, but chances are it is a dopamine agonist. If so, adding gabapentin might help. But unfortunately, disrupted sleep is something that most of us have had to get used to.

[Rustsmith]

Monday, September 11

Welcome to

John_L, who has periods of sleeplessness as long as 3 consecutive nights, and is currently averaging 4 hours sleep nightly. The drugs leave him "hung over" for most of the next morning.

What meds are you taking because there are things available that should not leave you hung over. Read through the document in the link to my signature or post a message so that we can help.

[Rustsmith]

Monday, September 11

Welcome to

KellyV, who is 63 and has had RLS for as long as Kelly can remember. It gets worse every year and Kelly now has extended episodes every night. Kelly can’t stay asleep or fall back to sleep and am looking for ideas and support.

The first place to start is with the document in the link below my signature. Also, feel free to post a message to tell us what you are currently doing so that we will know where to start with suggestions.

[Rustsmith]

Thursday, September 14

Welcome to

Tkohutka, who has had RLS since about 10 yrs old and is now 56. Tkohutka has been on medication for 30 yrs. Tkohutka's neurologist has recently retired and that is causing so much trouble with a new Neurologist. Tkohutka is currently without medication and cannot work because of no sleep.

Doctor retirement is a major problem for those of us with RLS. Many of us have found that we need to travel to find a doctor willing to accept us, but even getting a new patient appointment with a PCP can require a month long wait. All that you can do is plead with the office staff and explain that you are out of work because of no sleep and really, really need the meds that your old doctor was willing to prescribe.

[Polar Bear]

Saturday 16 September 2023

Welcome today to

mboyett whose RLS has definitely affected the quality of life. Beginning at age twelve to now at age 66 of age, it has caused considerable discomfort. After successfully taking dopamine agonists, mboyett is now dealing with augmentation and is looking for other medical options.

As you have found, we augment on the DAs and you will have to wean off this medication. Gabapentin or Pregabalin will be an option for treatment although many sufferers will find that eventually an opioid is the answer. Have a good look through the Augmentation Forum. If you have ay questions please post and we will do our best to help.

[Rustsmith]

Saturday, September 16

Welcome to

pztoysali, who can’t sleep much at night feels due to a sensation like something is crawling in the calves. pztoysali tried stretching, ice, heat etc, no relief. pztoysali can’t function during the day, tired and sleepy and is becoming anti social.

There are medications and treatments available that should provide you with some relief. Talk to your doctor about getting your blood ferritin level tested to see if you just need iron or if you need to take a med to allow you to get the sleep that you need. And feel free to post a message with any questions that you have. We are here to help.

[Polar Bear]

Sunday 17 September 2023

Welcome to

DDC44 who is looking for insight into treatment methods that work for rls sufferers.

You could start with the Just Joined Forum and take it from there. Please post and ask any questions that arise. We are here to try and help.

[Rustsmith]

Monday, September 18

Welcome to

Nieceali, whose quality of life is decreasing with this disorder & increased roprinole. It’s getting worse & so is her mood disorder. She doesn’t know what to do anymore & is so hopeless. There’s no meds she can use to get off roprinole (gabapentin & pregabalin) due to terrible side effects so she has to increase roprinole, which may be contributing to her bipolar II symptoms worsening, which is nearing a mental health crisis.

Has your doctor checked your ferritin levels? Many are able to dramatically reduce their doses if the can increase their ferritn levels to over 100. This may require an iron infusion, which is something that would probably require the directions from one of the RLS experts. Many of us also find that we have to travel to get good care when it comes to RLS. Thre experts that come to mind when it comes to your special situation are Dr Brian Koo at Yale, Dr John Winkleman at Massachusetts General (Boston) and Dr Mark Buchfuhrer in Downey, CA (Los Angeles). Drs Koo and Winlkeman are not only RLS experts, but also psychiatrists. Dr Buchfuhrer is the expert when it comes to difficult cases, especially those where the dopamine agonist dose is too high.

Finally, take a look at the document in the link to my signature. It may help answer some questions for you. You might also want to invest about $35 in a book that is available from Amazon titled "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Lee, Buchfuhrer, Allen and Hening.

And feel free to post a message with any questions. We are here to help as much as we can.