Search found 20 matches

by mh380
Fri Dec 30, 2016 5:39 pm
Forum: Physical Treatments
Topic: Physical Treatment Treadmill?
Replies: 5
Views: 2644

Physical Treatment Treadmill?

I have a question about whether we need to avoid completely covering our symptoms with physical treatments in the same way that we need to be careful about using too much medication. We probably all know that it’s a bad idea to take enough medication to be totally free of RLS symptoms. I have a lot ...
by mh380
Thu Jun 16, 2016 3:29 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Survey!
Replies: 12
Views: 2582

Re: Survey!

Hi Again, Ann and I have been making progress on the survey, but there is one bit of input that I would particularly appreciate right now. We have a section that asks about how your symptoms feel. The descriptors that I have so far are: “creepy-crawly”, electrical, tingling, itching, pins and needle...
by mh380
Mon Jun 06, 2016 4:34 pm
Forum: General Topics: RLS/WED
Topic: Part 2 of poll questions. OPEN TO ALL
Replies: 34
Views: 6231

Re: Part 2 of poll questions. OPEN TO ALL

My doctor is doing a great job, but my symptoms are still not adequately treated by anything we have tried yet.
by mh380
Thu Jun 02, 2016 9:47 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Survey!
Replies: 12
Views: 2582

Re: Survey!

I have access to pretty good online meeting software - we can see the same thing online, call in either online or through the phone, take notes in real time, pass the presenter role, etc. That sounds fantastic. PM me the details of how I can set up that software, and we can set up a time to go thro...
by mh380
Thu Jun 02, 2016 4:15 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Survey!
Replies: 12
Views: 2582

Re: Survey!

Hi All, thanks for responding so quickly and thoughtfully! Holland: now that I look at it, you are right that the question doesn't make a lot of sense. Perhaps the item: "I experience no urge to move my legs", should instead have the response options: "true" and "false"...
by mh380
Wed Jun 01, 2016 7:43 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Survey!
Replies: 12
Views: 2582

Survey!

Hi All, I'm not sure where the right place is to post this, but I put together a pilot survey for us to use to start to get data on whether there are patterns in which treatments work for which people. I'd really appreciate it if some of you would click the link below, make up some fake answers, and...
by mh380
Tue May 31, 2016 6:59 pm
Forum: Prescription Medications
Topic: Drugs worse than condition- feeling hopeless
Replies: 15
Views: 607

Re: Drugs worse than condition- feeling hopeless

Hey Ethan, At least it sounds like you have a doctor who is willing to work with you to find a solution, which is already a reason to feel lucky! Here are a few of my thoughts, which are based on what I know about RLS, not PLMS, but I think they should be relevant: 1. Are all of these medications th...
by mh380
Mon May 30, 2016 9:49 pm
Forum: Physical Treatments
Topic: Will excercise and weight reduction affect my RLS symptoms?
Replies: 15
Views: 7136

Re: Will excercise and weight reduction affect my RLS symptoms?

I have a related question about exercise. I used to ride my bike for at least 20-30 minutes per day when I got RLS. At that time, I didn't notice whether my symptoms changed when I would go for longer and more strenuous rides. I have since fallen out of the habit, and now I notice my RLS getting sig...
by mh380
Sat May 28, 2016 10:15 pm
Forum: Prescription Medications
Topic: Here I go...
Replies: 79
Views: 2509

Re: Here I go...

Hi Ann, That sounds awful! Since your sleep is already so lousy, it probably makes the most sense to take the band-aid approach to your methadone. Hopefully you can upregulate your endorphin receptors, get your baseline RLS/PLMS levels, and return to a lower dose of methadone as quickly as possible....
by mh380
Sun May 22, 2016 7:19 pm
Forum: Prescription Medications
Topic: Here I go...
Replies: 79
Views: 2509

Re: Here I go...

Hi Ann, That sounds like an important experiment for you to run; it's such a shame that for us to gain the sorts of insights you are going for often requires so much willpower and short-term anguish. Honestly, the prospect of having my RLS totally uncontrolled scares me a lot more than gradual opiat...
by mh380
Fri May 20, 2016 6:15 pm
Forum: Prescription Medications
Topic: Clonazepam for Sleep
Replies: 63
Views: 2748

Re: Clonazepam for Sleep

One more note of warning about benzos: my understanding is that they can mess with sleep efficiency. Specifically, they can suppress Slow-Wave and REM sleep, especially at higher doses. Obviously, if you can't sleep without them, low quality sleep is better than no sleep. But it's a good idea to fin...
by mh380
Sun May 15, 2016 8:26 pm
Forum: Prescription Medications
Topic: GENERIC VS GENERIC
Replies: 12
Views: 507

Re: GENERIC VS GENERIC

I've had the same issue with other medications. The term "inactive ingredient" is really misleading, since they apparently can affect absorption or metabolism of the active ingredient.
by mh380
Tue May 10, 2016 6:18 pm
Forum: Physical Treatments
Topic: snake oil
Replies: 8
Views: 3875

Re: snake oil

Maybe the patient was making a joke, or the doctor misunderstood another doctor who was making a joke about one of her patients. Regardless, I think this is the result of a bad game of telephone, since "snake oil" is a synonym for a placebo sold by a huckster.
by mh380
Tue May 03, 2016 6:04 pm
Forum: Physical Treatments
Topic: Need sequential compression device
Replies: 14
Views: 3577

Re: Need sequential compression device

I went through a company called the Medcom Group. I paid $325 for a 1 month rental, and after a bit of a discussion about price, they said they would have been willing to apply half of that money towards a full purchase, which cost about $600 for a refurbished model. If you want to give it a try, yo...
by mh380
Fri Apr 29, 2016 6:12 pm
Forum: Physical Treatments
Topic: Need sequential compression device
Replies: 14
Views: 3577

Re: Need sequential compression device

Quick update: I rented the Kendall 7325 SCD with a knee-length legging (my symptoms are in both the upper and lower leg) but didn't find it to be particularly helpful. I tried using it for an hour before bed some nights, and also using it while going to sleep other nights, and neither reduced my sym...

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