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by ViewsAskew
Tue Oct 16, 2018 4:22 am
Forum: Prescription Medications
Topic: methadone not working
Replies: 4
Views: 55

Re: methadone not working

This sounds like a plan. Let me see if I understand you correctly. You cut your Methadone dose down by half, and then take the pramipexole with it, for about 5 days (which can vary,depending on the person), then stop the pramipexole and go back to Methadone alone again for a time. When you go back ...
by ViewsAskew
Mon Oct 15, 2018 12:44 am
Forum: Prescription Medications
Topic: methadone not working
Replies: 4
Views: 55

Re: methadone not working

yeah, I am one who developed tolerance, so I get your frustration. Most of us do not, but a few do. That said, increasing my dose did help. Not sure what to think about that. The only thing that has worked for me - long term - is to take about 50/50 methadone and pramipexole for awhile. The length d...
by ViewsAskew
Sat Oct 13, 2018 6:30 pm
Forum: Physical Treatments
Topic: Massager
Replies: 4
Views: 93

Re: Massager

I don't know how similar it is...but a good friend likes to get her nails done and I've gone with her a couple times to a place that uses a compression device to massage the lower legs while your feet are soaking. OMG - I thought I would jump out of my chair. Horrifying. Related to blood flow, I'd g...
by ViewsAskew
Sat Oct 13, 2018 6:24 pm
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 9
Views: 84

Re: Social Security - US

The ANA titre was 1:80 - 10% of people without an autoimmune have it at that rate. And a homogeneous pattern is not that indicative of anything, either. So, it actually could just be random chance or that I had the start of a cold when I took it. I looked into the Soc Sec claim process and it isn't ...
by ViewsAskew
Sat Oct 13, 2018 12:14 am
Forum: Just Joined?
Topic: Lifetime RLS/WED here to say hi!
Replies: 12
Views: 165

Re: Lifetime RLS/WED here to say hi!

Agreed.
by ViewsAskew
Sat Oct 13, 2018 12:11 am
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 9
Views: 84

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: 18
Views: 275

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: 9
Views: 84

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: 12
Views: 165

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: 20
Views: 2530

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: 12
Views: 165

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: 12
Views: 165

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: 18
Views: 273

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: 110

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: 265

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!

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