Search found 551 matches

by legsbestill
Sun Oct 11, 2020 8:25 pm
Forum: Prescription Medications
Topic: Attempting to get off Ropinirole - again
Replies: 286
Views: 14160

Re: Attempting to get off Ropinirole - again

Betty, are you not sleeping because of rls? Or is it something else? What dose of codeine are you prescribed? Would it be worth taking some extra kratom for now just to try and get some more sleep? I know you have said that you are concerned about it becoming less effective but what you are going th...
by legsbestill
Wed Oct 07, 2020 3:04 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 28
Views: 791

Re: Need advice

Or you could try adding in some kratom - it has been more effective for me than the opioids I tried.
by legsbestill
Tue Oct 06, 2020 10:15 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 28
Views: 791

Re: Need advice

In your shoes I would look for an iron infusion
by legsbestill
Tue Oct 06, 2020 10:14 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 28
Views: 791

Re: Need advice

It sounds like the mirapexin may be responsible for your current bad symptoms. I would endorse all the other observations about your ferritin levels. They do not sound high. As the others say, it is unfortunately necessary to become informed about this condition even when treated by an expert in the...
by legsbestill
Mon Aug 31, 2020 3:25 pm
Forum: Prescription Medications
Topic: Lyrica 300+
Replies: 10
Views: 401

Re: Lyrica 300+

Presumably you have tried iron therapy - or are not suitable for it? Prior to looking at d/as I would be sure to check out EVERY other treatment first because often it seems to turn out that the people who fare least well on new treatment suggestions are those who previously augmented on a d/a. In t...
by legsbestill
Mon Aug 31, 2020 2:59 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 28
Views: 791

Re: Need advice

I note that you say you halved your dose of pramipexole (having increased doubled it a few months ago) in the last few weeks. Did you notice your symptoms getting worse after you reduced the pramipexole? Even if you are not augmented, reducing that drug is likely to cause problems. It seems to me, r...
by legsbestill
Fri Jun 05, 2020 3:28 pm
Forum: General Topics: RLS
Topic: Regular Sleep Schedule
Replies: 18
Views: 827

Re: Regular Sleep Schedule

Although I want to tear my hair out - or more precisely the hair of the person making the comment - when I read recommendations for 'sleep hygeine' as a management technique for rls, I have noticed that, when my symptoms are reasonably controlled, I have a window when I am most likely to get to slee...
by legsbestill
Fri Jun 05, 2020 2:46 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Is it worth scrapping ever tiny bit of caffiene?
Replies: 14
Views: 1068

Re: Is it worth scrapping ever tiny bit of caffiene?

Eliminating caffeine made no difference at all to my symptoms. I actually find that when symptoms strike in the night a cup of coffee - fully caffeinated - can sometimes help. On another rls forum there are a number of posters who have noted this. I'm not sure why this would be but wonder if it is s...
by legsbestill
Fri Jun 05, 2020 2:34 pm
Forum: Prescription Medications
Topic: Experience of having IV iron
Replies: 6
Views: 820

Re: Experience of having IV iron

Thank you for this. My first IV iron infusion was deferred due to covid19 restrictions and I don't know when it will be rearranged. I was, however, slightly anxious about the process and it's nice to get the reassurance about it. On a different note, I was thinking of you, Jul2873, as it was thanks ...
by legsbestill
Fri Jun 05, 2020 2:19 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Treating Central Nervous System Inflammation
Replies: 20
Views: 1482

Re: Treating Central Nervous System Inflammation

The diet was: no gluten, no dairy, an appallingly low amount of carbohydrates all of which were vegetables, no added sugar, no refined oils, lots of coconut and avocado oil, organ meats once a week, fish three times a week (wild-caught, cold-water fish), and 9 cups of vegetables daily (3 cups each ...
by legsbestill
Fri Jun 05, 2020 1:20 pm
Forum: General Topics: RLS
Topic: Pain Management
Replies: 6
Views: 766

Re: Pain Management

I have to feel sorry for the doctors who face those thoughtlessly high expectations every day. We really have to step up and start learning about our disease, to be sure our doctors have all the information they need. This is so true but it would be easier to empathise with doctors if they sometime...
by legsbestill
Wed Feb 12, 2020 3:18 pm
Forum: Physical Treatments
Topic: Iron Infusion Worked for me
Replies: 17
Views: 2545

Re: Iron Infusion Worked for me

My incredibly accommodating GP has persuaded a haematologist to give me an IV infusion of iron in spite of my serum ferritin being around 40, based on the published recommendations of the IRLSSG which I drew to his attention. I am hoping to get it next month. It looks like my health insurance will c...
by legsbestill
Wed Oct 02, 2019 10:01 pm
Forum: Prescription Medications
Topic: Medication for irregular use
Replies: 15
Views: 941

Re: Medication for irregular use

I find kratom great for intermittent use but care is required to ensure it is legal where you are travelling to (or that you have a very effective concealment strategy - I took a weekend break to Hungary last year and when I was unpacking on my return discovered I had unwittingly taken a supply of k...
by legsbestill
Wed Oct 02, 2019 9:56 pm
Forum: Prescription Medications
Topic: Getting off Pramipexole
Replies: 16
Views: 1074

Re: Getting off Pramipexole

Next week I have a GP appointment and I will ask her to help me further as I take the dosage lower. Will have with me RLS Foundation documentation regarding augmentation and withdrawal. Betty, I wonder should you also bring the most recent study which finds a link between RLS and increased suicide ...
by legsbestill
Mon Sep 30, 2019 2:55 pm
Forum: Prescription Medications
Topic: Getting off Pramipexole
Replies: 16
Views: 1074

Re: Getting off Pramipexole

I would be inclined to get serum ferritin levels checked prior to discontinuing pramipexole completely and if it is less than 100 (make sure that you get the actual figure - not just that you are 'normal') start a supplement. I would focus on making sure that iron levels are as high as possible. Fro...