November 2023 - New Members

[Polar Bear]

2 November 2023

Welcome today to

Kwid whose condition has seriously affected the amount and quality of sleep he gets and affects his relationship with partner.

We are all so aware of the difficulties of sleep that RLS brings.

If you will make a post and give us some history of how you have been managing your symptoms, what medications have or have not worked, dosages, we will do our best to help. Have you had your Ferritin Serum checked. This is important and needs to be requested as it is not part of a general blood panel. RLS sufferers will want their SF level to be up around 100 and do not accept to be told 'normal'. Normal can be 20+.

[Rustsmith]

Saturday, November 4

Welcome to

ritahammonds, whose RLS has affected her social life and her family life. She is going through horrible augmentation from Requip. She has just recently been referred to a neurologist and am hoping he can help her. She stay up at night walking the floors, jerking and stomping like her body is having seizures. She hasn't slept over 3 hrs in the last several months.

Augmentation is a horrible condition that doctors get us into and then don't understand how to treat. There are two approaches that your new neurologist can take. The first is more common and more difficult. It involves a washout, where you taper the Requip and then stop. When you stop, you will not sleep at all (not even naps) for a week and will experience the worst RLS you have ever had. You then gradually get more sleep and a reduction in symptoms for the next three weeks. The other (and kinder) approach is to give you a prescription for week's worth of an opioid. The opioid will cover the withdrawal symptoms and then you are ready to start whatever replacement medication the neurologist wants to try (often gabapentin or Lyrica). To read more, take a look at the document in my signature.

[Polar Bear]

8 November 2023

Welcome today to:

SleeplessinSWF who says only those who have RLS know the utter misery of it and know that it is real. Sleepless has lived with it for 40 years.

I also am a sufferer of about 40 years and it took many years to achieve reasonable treatment. That happened when I found this Discussion Board. Knowledge is Power. Please do ask any questions you have and we will do our best to try and help.

[Rustsmith]

Wednesday, November 8

Welcome to

Mwheeden5747, whose sleep quality has suffered greatly and that affects everything.

Sleep issues are the symptom that drive most RLS patients to see a doctor the first time. If you would like suggestions that can help improve your sleep, just post a message to give us an idea of what you are currently doing to manage your RLS so that we know where to start.

[Rustsmith]

Thursday, November 9

Welcome to

Shelleychelle, who has severe nightly and sometimes daily RLS and so did her mom. Now her daughter and possibly her granddaughter too. Hers is very severe, sometimes it's in her arms.

Are you taking a dopamine agonist and has your doctor checked your ferritin levels. Daytime RLS is often a sign of dopamine agonist augmentation, which is a sign that you need to change types of medication. If you would like more information, take a look at the document in my signature or post a message telling us a bit about your current treatment(s).

[Rustsmith]

Thursday, November 9

Welcome to

evoltino, who has been living with RLS since 2010 with a high to very high effect on his life. He is looking for ways to exchange experiences on treatments and anything that can help.

This is the place to share your experiences with treatments. Just post a message describing things that you have done that work (or don't) to get the ball rolling.

[Polar Bear]

9 November 2023

Welcome today to

ozzielegs who is desperate to find more info, rls is affecting his mental health after 13 years, getting worse.
He has been on several meds, nothing seems to give a reprieve except for a month or a week even.
ozzielegs feels that people who do not have this disease have no idea how bad it affects your health and daily life.

There is a lot of information here on the discussion board. It is hard for you that after suffering for 13 years you still have not managed to find a successful treatment plan. So many of us understand how you feel.
Please feel free to ask questions. Just post on a relevant thread, or even better start your own thread. Give us some background regarding your rls management and we will always try to help.

[Rustsmith]

Saturday, November 11

Welcome to

adernier, whose mother and siblings have RLS and adernier wants to know more to support them.

We are happy to see that you have taken an interest in trying to find help for your family. If you don't find what you are looking for, just post a note with any questions that you have and we will do our best to answer them.

[Polar Bear]

Monday 13 Nov member 2023

Welcome today to

Skippingliz whose quality of life has been terrible this past year as augmentation had caused non stop rls symptoms. She is now under specialist care and has been referred for an iron infusion. She has not yet started a drug taper.

It's good that you are now under specialist care and awaiting your iron infusion. Please feel free to make a post asking any questions you may have. We will always do our best to help.

[Polar Bear]

Wednesday 15 November 2023

Welcome today to

Toypoodle123 who has had RLS for 45 years. It has got to the point where Toypoodle123 has been brought to tears and she is curled up in a ball in pain

We are glad that you have found us but sorry that you have need of us. You will find useful information in the Just Joined Forum. Also, when you are ready please feel free to make a post and ask questions. If you provide details of how you have been managing your RLS symptoms together with what has and has not worked for you, we will do our best to help.

[Polar Bear]

Wednesday 15th November 2023

Welcome today to

Jfranklin who has been maintaining RLS over 35 years and continually trying to find answers, updated research and a decent physician to help. It has affected her as a mother where she cant sit with her children to watch a movie, it has affected her as a traveller where she can not sit on a plane too long or in a car and it has affected her as a person and missing the enjoyment of just sitting by a fire and relaxing.

I could have written your post, this was me 40 years ago and eventually I found what worked for me. Not perfect, but much better.
Has your doctor checked your Ferritin Serum level (a blood test that needs to be requested specifically) which should be up around 100 for RLS sufferrs and not just the 20+ which is generally accepted as normal.
Please make a post telling us how you have been managing your RLS symptoms. What prescribed medications have you tried and what has or has not worked. This gives us a starting point to try to help you.

[Rustsmith]

Saturday, November 18

Welcome to

Allilou2, who has suffered with RLS for many years. She now has it most nights and has restless sensation in my legs, hip/groin area and shoulders. She does shift work and nights make her condition worse, affecting her job role. The condition is so debilitating. This is really affecting her quality of life.

What are you currently doing to manage your symptoms? Has your doctor done blood tests to determine your ferritin level? We would love to offer suggestions to help you out, but you need to post a message telling us about what you are currently doing to control your RLS.

[Rustsmith]

Saturday, November 18

Welcome to

dooviegf, who hase been suffering from refractory RLS for over ten-years. Nothing seemed to work until dooviefg was prescribed hydrocodone for a back injury. Low and behold, the RLS stopped at night. dooviefg am currently finishing up a masters degree in clinical psychology and has been soaking up research information on RLS and is eager to share information.

We look forward to hearing from you and hope that you can also help your patients with RLS once you graduate and start practicing. Many individuals with sleep disorders are erroneously referred for help with psychiatrists and psychologists, so please share what you have learned within your profession too.

[Polar Bear]

Monday 20 November 2023

Welcome today to

BJV who has difficulty staying asleep.

We all understand the problem you are having. This is such a troublesome issue for us RLS sufferers. Do you have a helpful doctor and has he checked your ferritin serum level which needs to be up around 100 and not just at the generally accepted normal level of 20+.
If you will make a post telling us how you have been managing your symptoms this will give us a starting point to try and help you.

[Polar Bear]

Wednesday 22 November 2023

Welcome today to

Gls who has rls and is looking for information regarding the illness and treatments.

Information is power, especially when dealing with doctors and their treatment of rls. Reading through the Just Joined Forum will be informative and get you started. If you have questions then just join a relevant thread or even better, start you own thread. We will always do our best to try and help fellow sufferers.