AUGUST 2024 - New Members

[Rustsmith]

Thursday, August 1

Welcome to

Rootstock, who has been managing RLS for several years but had to get off Pramipexole after augmentation. He is two weeks past his last Pramipexole, He is still getting at best 2 hours of sleep a night and is excruciatingly uncomfortable the rest of the time. He is looking to find hope in others' experiences and ideally, maybe some solutions to try.

Congratulations on being able to get off of pramipexole. You can learn from some of the posts in the Augmentation forum or by reading through the document that the link in my signature points to. The thing to keep in mind at this point is that your RLS didn't go away, just your physical dependence on pramipexole. You still need something to treat your RLS symptoms (and insomnia). What that is depends upon the severity of your RLS. For some, increasing their ferritin level is enough if their baseline RLS is low-moderate. For those of us with severe or very severe, opioids are our only hope. In between, there are things such as gabapentin and the new Tomac device. Some even find that weed is enough (when legal).

And feel free to post a message with any questions that you have. Our role here is to help you as best we can.

[Rustsmith]

Friday, August 2

Welcome to

Rct!, who has had RLS for years and has found a wonderful solution. Sometime kicking uncontrollably, Very simply whenever this occurs, usually in the evening Rct! eats a banana and it goes away, as simple as that. It works every time for Rct!. No medication!

I wish it was that easy for the rest of us. If you have any comments or wish to tell us more, just post a message in the appropriate forum.

[Polar Bear]

Saturday 3 August 2024

Welcome today to

desertmoon who finds this condition has been devastating. It's caused her to feel uncomfortable in her skin and unable to settle. It's caused her to become an insomniac, and do things in sleeplessness that have been harmful to her, and caused concern and confusion from people she cares about. desertmoon is exhausted, but can't stop stretching.

It's awful that this have become so difficult for you. Do you have a doctor overseeing treatment for your symptoms and have you had your Ferritin Serum checked. This is important and you need to know your FS level. Us sufferers do better if our FS level is up around 100 and not just 'normal.'
The link in my signature will take you to an excellent document on RLS treatment and which has been prepared by esteemed RLS experts. Perfect for discussion with your doctor.
If you will make a post describing your present treatment, what medications (if any) that you take, what has or has not worked for you in the past, we will try to help you.

[Polar Bear]

Sunday 4 August 2024

Welcome today to

Tella82 who has had rls for as long as she can remember. After starting anxiety meds, it’s gotten so bad that she needs meds. If she doesn’t take meds, she can’t sleep at all.

There are several medications that are a trigger for RLS and antidepressants (if that is what you are taking) are one of them. There are also certain medications such as Ropinerole or Pramipexole, known as Dopamine Agonists, which are prescribed for RLS and can eventually cause augmentation. There was a time when these were the first choice for treatment but no longer and if you are taking this type of medication you will need to wean off it which is very difficult. The link in my signature will take you to a document prepared by leading RLS experts on how to treat RLS. You could also have a look through the Augmentation Forum and see if any of this strikes a bell. If you have any questions please do make a post, ask anything you like, we are here to try and help you.

[Rustsmith]

Monday, August 5

Welcome to

celticherself, who was diagnosed in 2007 with RLS after 2 years taking Effexor. Her family doctor was told Effexor helps migraines, it didn't help at all. Physicians prescribed 3 different Dopamine Agonists, one quit working, one made RLS worse and all caused hypertension, tachycardia and weight gain. She learned a lot by reading the RLS Foundation information for patients. She moved to California because her husband has Prostate Cancer in an advanced stage. But now she CAN'T FIND A DOCTOR who will answer the phone!!

There are two excellent sources of RLS treatment in California. Dr Buchfuhrer in Downey and the Stanford Sleep Clinic. Finding a neurologist these days is a major challenge. There are too many patients and not enough doctors. If you have any questions, we may be able to help. All that you need to do to get things started is to post a message.

[Polar Bear]

Tuesday 6 August 2024

Welcome today to

Clb0414 whose husband is suffering from Rls. Medication side effects are impacting their lives.

It is very difficult to have medication treatment without side effects of some sort. However, often there are ways around this. Sometimes a change of medication with less side effects, sometimes a way of dealing with the side effects. Much is down to trial and error. Has your husband had his Ferritin Serum checked and does he know what the level is, i.e. as an rls sufferer he will benefit if it is up around 100 and not just 'normal' which can be anything from 20+. The link in my signature will take you to a document prepared by esteemed RLS experts and it is very useful for discussion about treatment with your husband's doctor. Knowledge is power.
If you take a look at the Prescription Medication Forum you may find some useful information. Please feel free to ask questions. Just make a post and tell us about your husband's treatment regime, what has or has not worked for him, and what side effects are troublesome.

[Rustsmith]

Wednesday, August 7

Welcome to

Joep4, who is looking for alternative solutions to treat his RLS. He is not interested in being on drugs the rest of his life.

If your RLS isn't too severe, you may be able to get by with iron therapy or treatments discussed in our Physical Treatments or Non-prescription meds forums. Also, if your RLS is on the high moderate side, you might want to discuss the Tomac device with your doctor. If you have any questions, feel free to post a message. There are loads of things promoted to treat RLS that don't work and we would be happy to share our experience with those products.

[Rustsmith]

Thursday, August 8

Welcome to

patty1715, whose RLS that are keeping her from sleeping and she mentioned this to the doctors, and they seem to dismiss this fact. They took away the Ambien that helped and now they have tried various anti-depressants and antihistamines for sleep that do not work. She is resorting to supplements that leave her groggy---in a way worse situation than when she was taking Ambien. She made an appointment with a specialist familiar with the condition and she cannot get in until the middle of January.

Unfortunately, the demand for RLS specialists far exceeds the number of doctors available. As for your current doctors prescribing anti-depressants and anti-histamines, these are the two worst classes of drugs to treat the insomnia side of RLS. Both are potent RLS triggers. Perhaps if you share the Mayo document that the link in signature points to and highlight a couple of relevant sections, your current doctors will be more sympathetic.

In the meantime, if you have questions, feel free to post a message and we will try to help.

[Rustsmith]

Saturday, August 10

Welcome to

Mdoyle64, whose RLS has affected Mdoyle's work as a professional musician and being able to get around comfortably.

What are your currently doing to manage your RLS? There are four different ways that the experts recommend treating RLS depending up its severity. If you have any questions, feel free to post a message so that we can try to help you out.

[Polar Bear]

Sunday 11 August 2024

Welcome today to

SHurle who has had restless for many years and is looking for insight from those also affected.

We are glad you have found us but sorry that you have need of us. Reading through the Forums we hope you will find useful information. In particular the Just Joined Forum. Are you currently being treated by your doctor and is he understanding. Have you had your Ferritin Serum checked so that you know your level. Us rls sufferers benefit if our Serum Ferritin is up around 100. If you have any questions please feel free to make a post, providing some background information regarding your rls treatment, and we will do our best to try and help.

[Rustsmith]

Tuesday, August 13

Welcome to

sissys, who was diagnosed 5 years ago and is on a variety of meds. RLS has created a lot of anxiety, sleepless nites, and agitation. Getting feedback from others would help with not feeling so alone in this.

We would love to hear more about your RLS and meds so that we can provide you with feedback. Often doctors are not up on the latest RLS treatment protocols and so they prescribe meds that actually make things worse. We would love to help you learn if that is your situation.

[Polar Bear]

Wednesday 14 August 2024

Welcome today to

Vivace7 who has been battling RLS for many years and is currently dealing with augemntation with Ropinerole. Vivace7 has been trying to ween off it for several months now, with acupuncture as support. Is on the lowest dose (1 mg of an extended release tablet), but the withdrawal symptoms are really bad now at the end and I'm not sleeping. Any advice to get over the last hump and stay sane? I am trying to avoid taking another addictve medication to get off of this one.

You are doing the right thing weaning off the ropnerole, well done so far. If you have an understanding doctor with a good knowledge of treating rls augmentation, a low dose opioid would be of great help to wean off, although you do say that you wish to avoid taking another addictive medicine. However it would be a low dose. What is your plan going forward once you have come off the ropinerole.
Take a look at the Augmentation Forum.
If you have any questions just make a post and ask, giving details of your medication and what has and has not worked for you in the past. We are here to try and help you.

[Rustsmith]

Wednesday, August 14

Welcome to

lwiant, whose RLS causes misery. lwiant is always tired, sleep deprived, work quality suffers when lwiant can't sit still.

Is your RLS currently being treated by a doctor? Have you had your blood checked to determine your ferritin level? There are ways to manage your symptoms. If you would like some suggestions, just post a message. Or, you can read through the document that the link in my signature points at to learn how RLS is supposed to be treated.

[Polar Bear]

Thursday 15 August 2024

Welcome today to

Chrismudge64 whose RLS keeps him from sleeping which has affected his recovery from a concussion. It also keeps him from enjoying life.

We fully understand how RLS keeps you from sleeping and enjoying life. All of us know how it affects every aspect of our being. How are your RLS symptoms being treated at present. Has your doctor checked your Ferritin Serum level, this is very important. As a sufferer of RLS your FS level should be up around 100 whereas 'normal' is acceptable at anything from 20+. The link in my signature will take you to a document prepared by several expert RLS doctors and is very useful for discussion with your doctor on the best treatment for RLS. If you have any questions please make a post and we will do our best to help.

[Polar Bear]

Friday 16 August 2024

Welcome today to

Peggyw who has been coping with RLS for over a decade. She has altered her life, incorporating numerous routine and supplement changes. Although some of what she has incorporated seems to work "some" of the time, she has yet to find anything which gives consistent relief and hoping to learn.

You have found what most of us have found. What works for one doesn't always work for another. And what works quite well for some of us often doesn't work all of the time.
Have you had your Ferritin Serum level checked and if so make sure you know what your level actually is. Get the number because although 20+ may be considered 'normal' us RLS sufferers benefit if our levels are up around 100. This test is not done as part of a general blood panel and must be specifically requested. There are many things that may aggravate RLS including certain prescribed (and over the counter) medications. Some people find certain foods will have a negative impact.
If you have any questions please do make a post and we will do our best to try and help you.