JULY 2020 - New Members

[Rustsmith]

Saturday, July 11

Welcome to

Lnhaake, who has severe RLS and it’s been nightly for 25 years. Medications work at times, but she still has many sleepless nights.

Welcome to the group, if you are comfortable sharing posting a note telling us what meds you are taking, we may be able to suggest something that will help you reduce the number of sleepless nights.

[Rustsmith]

Saturday, July 11

Welcome to

loriR, whose husband has severe RLS and has been on a very strong medication for many years. His quality of life is affected by both the RLS and the side-effects of the medication. She would like to be able to help him by reaching out and being more educated.

If you will post a note asking any questions that you have, we would love to be able to help you help him.

[Rustsmith]

Monday, July 13

Welcome to

Blaze13, who stays awake every night jerking and tingling. RLS is miserable.

Anyone with even moderate RLS can relate to a problem with nightly jerking and unusual sensations. If you have any questions, please post them in a note so that we can try to help you regain control of your legs at night.

[Rustsmith]

Tuesday, July 14

Welcome to

Gandtbrown, whose RLS is getting worse and the medicine is not helping.

Often when RLS is getting worse and meds are no longer helping, the person is on a dopamine agonist (Mirapex, Requip or Neupro) and they are experiencing augmentation. We have an entire forum that discusses augmentation and how it should be treated. If you would like us to provide you with specific suggestions of what your doctor needs to do to help you out, please post a message that tells us what you are taking, the dose and how long this has been going on.

[Rustsmith]

Thursday, July 16

Welcome to

Thivea, who has been suffering from RLS in recent years and is looking for insights from our support group to help manage the symptoms.

We would be happy to help you out. If you will post a note with any questions that you have and some info about what you are currently doing to manage them, we should be able to provide you with some suggestions.

[Rustsmith]

Thursday, July 16

Welcome to

Leo, who ha not been able to sleep for 3 weeks.

Many of us have been where you are. Please post a note giving us an idea of what you are doing for your RLS so that we will have an idea of what sort of suggestions would be appropriate for you.

[ViewsAskew]

This morning, 17 July, we welcome Jenn1977.

Jenn1977 has not slept well for years and has tried many different things.

Hope you find some ideas here. Please, ask questions when you are ready - you could start a new topic/post and tell us what you've tried. We will help however we can.

[Rustsmith]

Friday, July 17

Welcome to

cute, whose RLS turned her life into AD. She is afraid of nightfall, lost her job and ha no strength to work. (cute's message was also written in Russian).

Feel free to post a note asking any questions that you have. (е стесняйтесь оставлять заметки, задавая любые вопросы, которые у вас есть.)

[Polar Bear]

Friday 17th July

Welcome today to:

Katyparis - whose RLS took control of her life in 2002.
It rules every decision that she has ever made in regards to social activities, travel, ability to relax and sleep, overall daily decision making and how she now views her future.

We are glad that you have found us and hope that we can give you some reassurance in the treatment of your RLS. All of us fully understand and have been where you are.
There is a lot of information here on the discussion board but if you will start a thread and give us some information with regard to your present treatment, what medications you take (if any) and what has or has not worked for you as you have tried to cope, we will try and help.

[Rustsmith]

Friday, July 17

Welcome to

Dct, who has had RLS since childhood although there were periods with fewer episodes. She has now been on Requip for 20 years (she is 62) and suffers RLS in legs, arms and hands due to augmentation.

Take a look through our info in the Augmentation forum to learn more about what you need to do to get off of the Requip and move on to a different type of treatment (not another dopamine agonist). If you have any questions, please post a note with them so that we can try to help you through this next period.

[Rustsmith]

Saturday, July 18

Welcome to

Chococat, whose RLS wakes her up in the middle of the night.

If you are willing to tell us more about how you manage your RLS and willing to post a note, we can probably give you some suggestions on how to ge a full night's sleep.

[Rustsmith]

Saturday, July 18

Welcome to

juliajsp, who had a bout from 2013-2015 that went away but it has returned much worse. The neurologist suggested last week that what she has resembles RLS although she is not certain it is a classic case. She has sharp electric pains radiating around her body. She noticed that at night in bed she is moving her legs constantly. The drugs he has mentioned are those used by RLS sufferers. I is very uncomfortable.

Some RLS patients have pain with their need to move. At this point, if you can try a dopamine agonist (Mirapex, Requip or Sinemet) for one night. If you have RLS, everything should go away. If that works, then it is RLS and your doctor should run blood tests to determine your iron levels and also put you on an alpha--2-delta ligand med, such as gabapentin, Horizant or Lyrica. If you have any questions, please feel free to post a note so that our community can help you out.

[Rustsmith]

Saturday, July 18

Welcome to

michael, who is a seventy-one year old man, has had RLS for over thirty years, but it has gotten increasingly severe and is now a "quality of life" issue.

Most of us can appreciate your situation. If you are comfortable with telling us what you are currently doing to manage your RLS, we may be able to offer some suggestions to improve your quality of life.

[badnights]

Today sfrank67 joins us. sfrank67 is exhausted, can't continue to live like this, & will try anything to get relief.

sfrank67, if you'd like, you can start a Topic and tell us more about yourself. When did it start, & how has it progressed? What have you tried? Are you taking medications? This disease can be a real life-destroyer, and everyone here knows it. You'll get advice, information, and lots of love. Also you can post in other Topics, or just browse around.

[Rustsmith]

Tuesday, July 21

Welcome to
PsmRhm1009, who has had RLS for many years, but it’s getting worse with age. PsmRhm1009 takes Ropinerole, but it’s no longer controlling the RLS to the point where it isn't possible to get a good nights sleep.

If Ropinerole is working like it used to, there is a chance that you are experiencing Augmentation. If you take a look through our forum on Augmentation you should get some ideas of what it is and how it is treated. Unfortunately, most doctors are not familiar with augmentation, so you may need to educate both yourself and your doctor or find a new doctor who can help you.