Open question #2: Are there more triggers for secondary WED?

[Frunobulax]

Hi again,

this may not be a question at all, but more a suggestion for a research project - maybe triggered by the WED foundation?

I always wondered if there exists idiopathic WED at all, or if all WED comes from another disease or nutritional issues. We know that low iron, magnesium and vitamin B12 levels can cause WED, and that WED can be caused by other diseases (like thyroid problems, Parkinson, diabetis) or medication (like antidepressants). However, I wonder if this is really the end of it. After all, most of us observed that our WED symptoms respond to certain foods or physical activities. Why?

I would suggest that we design an anonymous questionnaire, where WED patients are asked which other medical issues they have and which medication they take on a regular basis, regardless whether their doctors think they are connected to WED or not. If we find a high prevalence of certain diseases or classes of medicaton, we should explore if there are connections. Some may be straightforward (like sleep apnoe - since WED medication causes muscle relaxation it is to be expected that sleep apnoe is more common among WED patients), but some may be more surprising, and lead to new treatment options.

Two conditions where I wouldn't be surprised to find a connection:
(1) I myself have reflux esophagitis, and started Omeprazol to control my stomach acid about 6 years ago. My WED symptoms started about a year after taking up Omeprazol. Is there a possible relation between the reduced acid production in the stomach and WED? Clearly a change in stomach acid levels changes the way we process food, and absorb vitamins, I asked a few WED discussion board users if they have stomach problems, and quite a lot confirm that they do indeed have reflux problems and are taking similar medication.

I tried to stop my Omeprazol, but managed only 3 days due rebound symptoms. Then I doubled the Omeprazol dose for some time - and indeed, WED symptoms got more severe. (But this is an experiment that should be repeated, since fluctuations of the symptoms are common.)

I'm not sure if there is a way to stop the medication for a longer time. Perhaps it is possible to operate, but I wonder if any doctor would do this just because there is a possible connection to WED...

(2) Other people mentioned inflammation. (Or possibly one guy mentions inflammation, quite often.) Maybe a small inflammation in the wrong place (near the brain, say a problem with teeth or a chronic infection of the mucous membranes) that we gotten used to contributes to the WED symptoms?

[cornelia]

Don't forget that gene mutations in the foetus can be the basis for RLS. Research has shown that already. Don't think we can do much about that, I don't know.
We could write down our triggers etc. but if I am not mistaken this has been done before here? Not sure.

Corrie

[ViewsAskew]

In terms of omeprazole,there are suggestions that is may inhibit iron absorption. http://www.medscape.com/viewarticle/490612_3 That would influence WED. Additionally, there is evidence that certain gut issues are associated with WED - unsure, but possible the continued omeprazole use could influence those gut issues, too. In a study a few years ago, IBS and/or SIBO (I can't remember details) were linked to WED/RLS.

[Rustsmith]

I agree that it would be very interesting to identify the various co-morbidity to WED/RLS. There have been a number of studies and discussions on the board about issues like migraines, Raynaud's syndrome, fibromyalgia and ADHD. But these studies usually just were conducted to evaluate a 1:1 relationship. A study with a very large population that looked at WED versus a very large number of conditions might find some very interesting correlations.

As an example, in the areas of sleep apnea, there is a variant of this condition called UARS (Upper Airway Resistance Syndrome). There are a couple of doctors who believe that UARS has a relationship with GERD, fibromylagia, chronic pain, migraines, sinus problems and asthma. They make a good case for several of these relationships, but the idea has not been widely accepted.

As for triggers, I have not been able to identify anything even though I have tried most of the things listed on various threads here. But then again, I may fall into the genetic category. So assuming that your premise is correct, my condition is a result of the chemistry that leads to my migraines and Raynaud's Syndrome or else there is something else that I have that has not been identified.

[ViewsAskew]

We need something akin to the Nurses Study in the US that's been going on for years and has a huge number of participants. I don't think we'd see meaningful relationships otherwise.

The Foundation, unfortunately, tends to reach people with more severe symptoms. People with minor ones tend to ignore it. We'd need some big agency to promote or some big group (such as nurses) to participate.

Steve, as you noted, the next key is that these are merely association to each other and rarely denote causality. I often wonder who, if anyone, researches causality after they identify the relationship.

[debbluebird]

It is interesting that this was brought up. I've been doing a lot of reading about inflammation and reflux. My main reason to explore these and due to my severe arthritis and reflux. So I have been looking at diet for both issues. I have also had severe WED/PLM at times. I want to have less pain and less joint destruction. I'm also tired of eating antacids. I've decided to start eliminating certain foods from my diet. I also have a list of foods that improve inflammation. I am more interested in seeing what will happen when I eliminate foods. If any of this ends up helping my WED/PLM then that will be great. Maybe I will also loose weight.