Search found 2603 matches

by SquirmingSusan
Wed Sep 21, 2022 3:32 am
Forum: Physical Treatments
Topic: Compression Yoga Pants
Replies: 8
Views: 5006

Re: Compression Yoga Pants

I ordered some compression tights, but have to wait a few days or weeks for them. Last night I realized that my knitted knee sleeves can be pulled up around my thighs to give compression up there. I also put on the compression sleeves that fit around my calves. The ones around my thighs helped a lot...
by SquirmingSusan
Tue Sep 20, 2022 4:20 am
Forum: General Topics: RLS
Topic: Riding the Big One (RLS 24/7, Hanging Ten)
Replies: 850
Views: 241856

Re: Riding the Big One (RLS 24/7, Hanging Ten)

There are days when I wonder how this disorder and the sleep deprivation it causes doesn't kill us. I would love to know how many people attempt or complete a suicide because they can't get treatment. I'm not there, but have been having a rough time. Iron infusions help my RLS tremendously, but I ca...
by SquirmingSusan
Fri Sep 16, 2022 10:25 pm
Forum: General Topics: RLS
Topic: Bright Light Therapy and Delayed Phase Sleep Disorder
Replies: 9
Views: 5699

Re: Bright Light Therapy and Delayed Phase Sleep Disorder

I haven't taken a DA for many years. My RLS never returned to its baseline after taking those drugs.
by SquirmingSusan
Thu Sep 15, 2022 11:33 pm
Forum: General Topics: RLS
Topic: Bright Light Therapy and Delayed Phase Sleep Disorder
Replies: 9
Views: 5699

Re: Bright Light Therapy and Delayed Phase Sleep Disorder

My schedule is delayed, also, and I'm not sure which came first, the RLS or the DSPD. Being that RLS is usually worst at night, I think some of learn to sleep when we are able. I also have narcolepsy, and can nap during the day. My RLS is seriously augmented from taking dopamine agonists years ago, ...
by SquirmingSusan
Sat Sep 10, 2022 3:50 am
Forum: General Topics: RLS
Topic: Which IV iron preparation? PLEASE
Replies: 8
Views: 5037

Re: Which IV iron preparation? PLEASE

For what it's worth, over the years I've had all of the formulations except Infed, and they all have worked to raise my ferritin levels and make my RLS much less severe. The big issue is that for Venofer, Ferroheme, Ferlecit, and the generics of those is that it takes 5 weekly infusions, versus 2 fo...
by SquirmingSusan
Fri Sep 09, 2022 10:25 pm
Forum: Physical Treatments
Topic: Compression Yoga Pants
Replies: 8
Views: 5006

Re: Compression Yoga Pants

I love compression, and have been eyeing some online for a few months. The RLS has been up in my thighs lately, but I also just am old and my legs swell in the heat. I'm glad they help you.
by SquirmingSusan
Fri Sep 09, 2022 2:30 am
Forum: General Topics: RLS
Topic: Frustrated with it all!
Replies: 13
Views: 9199

Frustrated with it all!

Hi all, it's been a while. My RLS is mostly controlled with iron infusions and kratom. Except the hematologist refuses to treat my low iron until the ferritin goes below 30. When my iron is low, I really need to be on methadone or another opioid, but my neurologist says he can no longer prescribe me...
by SquirmingSusan
Tue Oct 08, 2019 2:37 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: New Kratom User - when to take
Replies: 49
Views: 15036

Re: New Kratom User - when to take

It actually depends on the person as far as which strains will work the best. I have issues with some of the stronger reds, like hulu or wild red. They make me weak and shaky, and sometimes act as a stimulant for me. For me, some of the non-energetic greens are the best, like green Bali or green ele...
by SquirmingSusan
Tue Oct 08, 2019 2:28 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5036

Re: Infusion #3

I had my second iron infusion of this series on Friday. They are giving me Ferrlecit, 125 mg. at a time, in monthly infusions. I get my ferritin level rechecked in November, after the 3rd infusion. My RLS got much better within a couple weeks after the first infusion. I think I'm one of the few peop...
by SquirmingSusan
Sat Sep 07, 2019 2:59 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Problems with Kratom
Replies: 22
Views: 9804

Re: Problems with Kratom

In various kratom forums, people say to rotate strains and suppliers of kratom. I don't know if it's really a thing, but they call it "same strain syndrome." Also, kratom varies in potency from season to season, and from supplier to supplier. I do know that it's possible to build tolerance, and peop...
by SquirmingSusan
Sat Sep 07, 2019 2:51 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5036

Re: Infusion #3

ViewsAskew wrote:My first is scheduled for next Tuesday.
Hurray!

I wonder if Beth is getting some soon...

My doctor has me getting them once a month for 3 months, and then getting labwork. Strange scheduling, but sitting in the infusion center once a month is better than every week.
by SquirmingSusan
Wed Sep 04, 2019 10:32 pm
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5036

Re: Infusion #3

When you go for your first infusion of the series, be sure to ask the nurse exactly what the label on the IV bag says, both name of med and dose (# of mg.).
I got ferrlecit. The nurses had no idea why; they said the most common one they give is Venofer. One down, 2 to go!
by SquirmingSusan
Wed Sep 04, 2019 12:44 am
Forum: Prescription Medications
Topic: Clonidine
Replies: 12
Views: 1431

Re: Clonidine

... My ferritin was 8 and my iron saturation was 25%. No wonder I get out of breath riding my trike and walking up hills. I start a series of 3 iron infusions on Wednesday. Are you anemic? Very likely you are with a ferritin that low. If doc didn't say, what was your hemoglobin or hematocrit, those...
by SquirmingSusan
Sat Aug 31, 2019 5:19 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5036

Re: Infusion #3

I'll be starting a series of 3 iron infusions next Wednesday. I'm assuming the doctor ordered Injectafer, since I told him I had a great experience with it last time around, except for the cost. It was several thousand dollars, and I'm still making monthly payments. And, our $4000 deductible resets ...
by SquirmingSusan
Sat Aug 31, 2019 4:54 am
Forum: Prescription Medications
Topic: Clonidine
Replies: 12
Views: 1431

Re: Clonidine

That's great if it helps you reduce the methadone, Ann! I did get my own prescription, and it is very much a miracle drug for me. I had no trouble talking my neurologist into prescribing it, especially since my blood pressure that day was 148/98. (But I had ridden my trike 15 miles to get there, and...