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by ViewsAskew
Sat Oct 13, 2018 12:11 am
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 36
Views: 1504

Re: Social Security - US

Well, the plot thickens. Today my blood work is back. My ferritin is holding (decreased 20 points, but still around 300). But, for the first time in my life, my total iron is low. That seemed odd as I am officially in menopause as of this month. So, went to see the next set of tests. SED rate is hig...
by ViewsAskew
Fri Oct 12, 2018 12:23 am
Forum: General Topics: RLS/WED
Topic: Back Surgery and RLS plus spasms
Replies: 40
Views: 1101

Re: Back Surgery and RLS plus spasms

Coming up in a few days - let us know how you are as soon as you can.
by ViewsAskew
Fri Oct 12, 2018 12:18 am
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 36
Views: 1504

Social Security - US

With the recent fibro diagnosis, I am rapidly coming to the conlusion that I will never work full time again. I hurt so much so often, the fog is much worse than with RLS alone, and it also hurts my sleep. I really didn't need that. But, none of us do, do we? At any rate, am wondering if I should tr...
by ViewsAskew
Fri Oct 12, 2018 12:13 am
Forum: Just Joined?
Topic: Lifetime RLS/WED here to say hi!
Replies: 14
Views: 463

Re: Lifetime RLS/WED here to say hi!

However...playing devil's advocate. IF we get the iron over 100, then use DAs, alternating - say - once every year for a month with opioids - we likely could use them for many, many years.
by ViewsAskew
Fri Oct 12, 2018 12:11 am
Forum: Help for Relationships
Topic: Sleeping Arrangements
Replies: 24
Views: 4329

Re: Sleeping Arrangements

Both hubby and I have sleep disorders. I am the lighter sleeper - he only notices my movements when he happens to be falling to sleep. he, on the other hand, has PLMS along with his sleep apnea. His movements can drive me crazy! We also changed mattresses. Any form of visco elastic foam will help is...
by ViewsAskew
Tue Oct 09, 2018 10:11 pm
Forum: Just Joined?
Topic: Lifetime RLS/WED here to say hi!
Replies: 14
Views: 463

Re: Lifetime RLS/WED here to say hi!

yeah, to echo the others - you need to know the ferritin range. Also, some doctors (such as the ones studying iron at Johns Hopkins) have no problem getting ferritin into the 300s.
by ViewsAskew
Tue Oct 09, 2018 8:19 am
Forum: Just Joined?
Topic: Lifetime RLS/WED here to say hi!
Replies: 14
Views: 463

Re: Lifetime RLS/WED here to say hi!

Hi James, So sorry to hear you are going through this. I've had PLMS (periodic movements in sleep) since I was a toddler and RLS since my early teens. Definitely not fun! One of the first things your doc should do is blood work. The RLS Foundation has a lot of info for members, including pamphlets y...
by ViewsAskew
Tue Oct 09, 2018 1:52 am
Forum: Just Joined?
Topic: OCTOBER 2018 NEW MEMBERS
Replies: 32
Views: 1121

Welcome to s14james

8, Oct - Monday

Welcome to s14james, who has been struggling with RLS/WED all his life and is hoping to find more solutions.

So sorry to hear it's been so long, s14james. Poke around, read the "sticky" posts, ask questions. We'll help any way we can.
by ViewsAskew
Mon Oct 08, 2018 2:49 am
Forum: General Topics: RLS/WED
Topic: refractory rls and psoriasis relationship
Replies: 7
Views: 279

Re: refractory rls and psoriasis relationship

I have eczema as well as a bunch of other strange conditions, lol. I think we Beth said is spot on.
by ViewsAskew
Fri Oct 05, 2018 2:53 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 533

Re: RLS Patient Symposium

Just after I posted, I received a link from Zibby that I could open in my PC - I had painstakingly typed the URL for Box...and likely had an error. I was not up to finding it at the time. With the link I didn't have to try again! YAY, Zibby!
by ViewsAskew
Fri Oct 05, 2018 12:28 am
Forum: General Topics: RLS/WED
Topic: Oct 16 Webinar with Dr Winkelman
Replies: 0
Views: 228

Oct 16 Webinar with Dr Winkelman

https://www.rls.org/get-involved/education-events? Use that link to register and submit your questions! Date: Tuesday, October 16, 2018 Time: 1 pm PT | 2 pm MT | 3 pm CT | 4 pm ET Speaker: John Winkelman, MD, PhD Dr. John Winkelman will answer your questions submitted with registration. Please under...
by ViewsAskew
Fri Oct 05, 2018 12:22 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 533

Re: RLS Patient Symposium

Did anyone download the files? I tried today and failed. The download link isn't active, sadly. I shared with my google drive...and failed again (they converted the PPTs to txt files). I didn't have the energy to download from drive to see if I could rename and get them to work.
by ViewsAskew
Fri Oct 05, 2018 12:19 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 533

Re: RLS Patient Symposium

2BassetMom wrote:Ann, My daughter along with my husband make it possible for me to lead an active life. She is very special indeed!


:D
by ViewsAskew
Thu Oct 04, 2018 8:51 pm
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 533

Re: RLS Patient Symposium

I was at the symposium also and had my daughter take notes. As soon as she types them up I'll be able to add to this conversation. One item I found disturbing also is #5. I was surprised that these experts didn't have much input on the suicide issue. If they could read the stories on this forum and...
by ViewsAskew
Thu Oct 04, 2018 5:48 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 533

Re: RLS Patient Symposium

badnights wrote:Ah, I see from the other thread that Ann has elected me to look over my notes and report back! I will do so in the next day or two.


Sorry! I just knew you had them...and I didn't, lol. Seemed the only option :-).

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