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by SquirmingSusan
Sun Jun 24, 2018 1:31 am
Forum: Physical Treatments
Topic: Experience with Injectafer?
Replies: 1
Views: 204

Re: Experience with Injectafer?

I had 2 infusions of Injectafer a little over a year ago. It certainly was a lot more convenient than the other iron infusions I've had. Just 2 short sessions instead of 5 or 6 sessions of several hours each. It helped some, but iron doesn't get rid of my RLS entirely.
by SquirmingSusan
Tue May 29, 2018 4:28 am
Forum: Physical Treatments
Topic: Hot Tub?
Replies: 16
Views: 781

Re: Hot Tub?

You can get Jacuzzi bathtubs (and other brands) that have jets and heaters, just like a hot tub, but fit right into the spot where the bathtub goes... I was just thinking that I've never had RLS when sitting in a hot tub. We have a hot tub sitting in our basement that we don't use because it leaks, ...
by SquirmingSusan
Fri May 18, 2018 4:01 am
Forum: Physical Treatments
Topic: Alpha Stim again
Replies: 3
Views: 726

Re: Alpha Stim again

I have an Alpha-Stim. It helps me with pain, but not with RLS.
by SquirmingSusan
Sun May 13, 2018 9:11 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom physiology
Replies: 16
Views: 971

Re: Kratom physiology

I want to let you know about a couple of good vendors for kratom, in addition to SoCal, which is a great vendor. These all have good quality kratom, and are reasonably priced: Kat's Botanicals: https://katsbotanicals.com/ Valkyrie Botanicals: https://www.valkyriebotanicals.com/ Tea Time Botanicals: ...
by SquirmingSusan
Sun May 13, 2018 8:52 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom physiology
Replies: 16
Views: 971

Re: Kratom physiology

I started taking kratom in place of methadone last November. It worked great for me until I had oral surgery and needed a lot of it to control the pain. Now it takes a lot of it to manage the RLS. About every year I try a keto diet again to see if it helps manage my narcolepsy symptoms or RLS. Since...
by SquirmingSusan
Sat Dec 02, 2017 4:23 am
Forum: Everything Else...just no RLS/WED!
Topic: Is it Only Me ?
Replies: 33
Views: 3298

Re: Is it Only Me ?

My parents used to go to Florida every winter, and then gloat about how nice the weather was, and how they were playing golf and picking seashells on the beach, etc. We threatened to send them a spring-loaded snowball-in-a-box if they didn't cut it out. ;)
by SquirmingSusan
Thu Nov 30, 2017 6:09 am
Forum: Everything Else...just no RLS/WED!
Topic: Harassed by repair person
Replies: 13
Views: 1234

Re: Harassed by repair person

Ugh. As "leggo" said, that is gross, gross, gross! And we're surrounded by it these days.
by SquirmingSusan
Thu Nov 30, 2017 6:06 am
Forum: Everything Else...just no RLS/WED!
Topic: Is it Only Me ?
Replies: 33
Views: 3298

Re: Is it Only Me ?

Sleep deprivation is one of the worst stresses that our bodies and brains can endure. I was an absolute crazy person for many years, before finally being diagnosed with RLS and eventually narcolepsy. Fortunately I have a good combination of medications that help my narcoleptic brain get deep sleep, ...
by SquirmingSusan
Sun Nov 19, 2017 3:46 am
Forum: Everything Else...just no RLS/WED!
Topic: Harassed by repair person
Replies: 13
Views: 1234

Re: Harassed by repair person

Ugh, what a creep.
by SquirmingSusan
Sun Nov 12, 2017 4:07 am
Forum: General Topics: RLS/WED
Topic: Experimental treatment for Parkinson's disease - stimulating spinal cord
Replies: 4
Views: 730

Re: Experimental treatment for Parkinson's disease - stimulating spinal cord

I hope they figure out something to better treat RLS as well as Parkinson's. I know so many people with Parkinson's, and not a one has had deep brain stimulation. I don't know if it's an insurance thing or it's too risky or another reason.
by SquirmingSusan
Sun Nov 12, 2017 3:58 am
Forum: General Topics: RLS/WED
Topic: random rant about a doctor
Replies: 19
Views: 1394

Re: random rant about a doctor

Some doctors just don't get it. I think they're motivated by prestige and the desire to make money rather than to care for patients and help relieve suffering. I good doctor is literally worth their weight in gold.
by SquirmingSusan
Sun Nov 12, 2017 3:54 am
Forum: General Topics: RLS/WED
Topic: Painful RLS
Replies: 15
Views: 1566

Re: Painful RLS

My RLS used to be really painful, but turned to the creepy-crawlies when I brought my vitamin D levels up. When I reacted/augmented on Requip and Mirapex, it was painful like someone lit my legs on fire, along with having to literally dance around to control the urge to move. I hate this disorder, a...
by SquirmingSusan
Sun Nov 12, 2017 3:50 am
Forum: General Topics: RLS/WED
Topic: Issues feel insurmountable
Replies: 31
Views: 2916

Re: Issues feel insurmountable

It's almost impossible to lose weight when sleep-deprived, leggo. It messes with insulin, cortisol, and every other hormone system there is. The best you can do is eat healthy, manage stress, pet the dogs a lot, get some sunshine, and get exercise. I'm guessing water aerobics will help your pain som...
by SquirmingSusan
Sun Nov 12, 2017 3:15 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Iron Patches
Replies: 10
Views: 1164

Re: Iron Patches

Actually I realized the patches are said to be nano particles. They seem to be scientifically impossible, since the weight of the patch is less than 1/10 of the claimed weight of the nutrients in them. When I asked them about it, they said it was due to their special dehydration process, and basical...
by SquirmingSusan
Sat Nov 11, 2017 4:37 am
Forum: Everything Else...just no RLS/WED!
Topic: Moving Mayhem
Replies: 82
Views: 8140

Re: Moving Mayhem

Hurray! Enjoy all that sunshine and warmth, and having Dr. B close by! My neuro doesn't like it when I take my full methadone prescription, which is 2.5 5 mg. pills a day. When my ferritin is low, I need at least 3 whole tablets. When my ferritin is higher, I need 2 a day. Now I'm just taking kratom...

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