New member wanting to share his story and find a little help

[Rcure]

I would like to share my story
I had gastric sleeve surgery December 1st 2014. 6 months after surgery I started to experience chronic fatigue,anxiety and soreness all over. I went to my GP and described my symptoms, I had blood work drawn and referrals to a rheumatologist and psychiatrist. My rheumatologist diagnosed me with fibromyalgia and my psychiatrist diagnosed me with ADHD and anxiety disorder. I didn't like these diagnoses and didn't feel the treatment I was receiving was doing anything for my symptoms. I've always had mild restless legs so mild I never thought anything of it. At the time my anxiety was awful and I felt it was making my restless legs worse, by fluke I told my dr I wanted to try a medication for restless legs he put me on ropinirole, instantly I had 80% relief of all my pain and discomfort and never slept so well in my life. I was and still am disgusted by my doctors inability to properly diagnose me.

I stayed on ropinirole for 3 weeks but didn't get any daytime relief from taking it once a day at bed time. My dr then put me on the Neupro patch. I'm waiting for new blood work as its been 5 months since my last. 3 weeks ago I went and saw a nature path and gave me a list of vitamins to take (no iron). The change I have seen in the last three weeks has been remarkable. As of a week ago I've been able to come down from 90mg of cymbalta to 60mg and I'm currently off neupro for 1 week now. ive had to cut out caffeine(I used to consume 700mg to 1000mg a day) and alcohol(I've never been a big drinker)

I've joined this group because I have no faith in my doctors And am still looking in improve my quality of life any input would be great.

[badnights]

Welcome to the board, although it sucks that you needed to look for support. You;re on the right track, arming yourself with knowledge. To give your doctors credit, it's a hard disease to diagnose, but I join you in wishing more doctors were aware of it.

Did the doctor who put you on ropinirole get a blood sample first and check your ferritin levels? If not, you should get that done, because correcting low ferritin can sometimes relieve the symptoms enough that people don;t even need medication; but mainly because taking ropinirole or Neupro when your ferritin is low puts you at greater risk of augmentation (that's where the medication that's supposed to help you actually makes the symptoms worse). (More info by following the link in my signature line).

Ferritin is not always checked as part of an iron panel, so it might not have been checked. If your doc knows anything more than the minimum about RLS/WED though, he will have gotten your ferritin checked. Find out the actual number that came back, because labs will call 20 normal, but for WED/RLS patients we need 75 or even 100 at a minimum. Iron is definitely involved in WED/RLS, in a big way, though the details are uncertain. Oral iron supplements can be a very useful therapy if your ferritin is low.

The one vitamin that has been shown to be involved in WED is vitamin D, so be sure you're getting enough of that. (I take 4000 IU daily. I don't live in a sunny place).

Some doctors and naturopaths don;t know the difference between leg cramps and WED/RLS so they will recommend Mg for RLS because it can be effective for leg cramps. But it can help RLS/WED indirectly by improving overall health. Apparently a lot of people are deficient in it, and I know of people who swear it has fixed their RLS. The thinking of some of us here is that if you're deficient in something, fixing that deficiency can help your RLS/WED; but the same substance might not help someone who is not deficient in it.

There's a lot of information here, I hope you browse around and learn what you can. You might be interested in the Non-prescription forum and the Physical Treatments forum.

I have a couple of questinos about your treatment. What was the dose of ropinirole you were on, if you remember? What is the dose of Neupro, and how long have you been on it?

[Rcure]

I don't think I have had anything out of the ordinary checked. Ill take a more active role in finding out and pushing for particular tests. I went up to 1.5 mg of ropinirole and stayed on it for about 3 weeks but found it way to strong as I originally kept increasing the dose at bed time to relieve day time symptoms, which i had before ripinirole. I then went on 1mg of neupro for 3 weeks then stopped over a 6 day period.

[Rcure]

I read about augmentation and it scared me enough to try and find another way to find relief.

[Yankiwi]

Me too. I think some RLS symptoms are much better than augmentation and needing to get on the drug merry-go-round which sounds like an absolute nightmare.

[badnights]

Some specialists are recommending that ropinirole for WED patients doesn;t exceed 1 mg daily. It's a good thing you stopped, I would guess.

People usually take a smaller dose in the morning or at noon to deal with daytime symptoms, rather than increasing the nighttime dose.

Neupro and ropinirole are both DAs, so there is a risk of augmentation with both of them. I forgot to mention in my last post, coffee seems to be a big trigger for RLS/WED - not sure if its the caffeine per se or other substances in the coffee.