Could it be more than RLS?

[starrynight]

A couple months ago I was diagnosed with RLS. But I still have other issues that are not common with RLS like brain fog, dizziness, joint pain, tingling throughout my body, headaches, unable to sleep. The doctor does thinks its just RLS and stress but my gut says it is more.

Has anyone else had issues like this and was diagnosed with RLS first but it was actually XYZ? I'm going to need to advocate for more testing to figure out my problem and thought this place may be a starting point to help figure out what could be my issue. I have been ill for over 4 months and it's getting hard to manage.

[badnights]

There have been a few people here who turned out not to have RLS/WED, but I can't for the life of me remember a username. Nor can I guess an efficient way to search. You could try a few searches using the search box at upper right, or the advanced search page you get by clicking the gearwheel right of the search box.

[debbluebird]

Chronic fatigue syndrome has those symptoms. I hope you are able to figure it out.

[ViewsAskew]

There have been three or four people. Like badnights, I cannot remember usernames.

Two of the people had small fiber neuropathy, unlikely to be similar to what you are saying. But, one person had multiple things going on. I am about to fall to sleep,b tu will try to remember to look tomorrow for you.

[Frunobulax]

A couple months ago I was diagnosed with RLS. But I still have other issues that are not common with RLS like brain fog, dizziness, joint pain, tingling throughout my body, headaches, unable to sleep. The doctor does thinks its just RLS and stress but my gut says it is more.

RLS is not a disease, but a syndrom. It is possible (and perhaps likely) that there is one underlying root cause responsible for all your symptoms. As these are fairly unspecific, I would cast a wide net.

• Any abnormalities in blood values? Iron especially. Also inflammation markers, metabolic markers (trigycerides, glucose, insulin).
• Try high dose supplementation with the usual suspects. My list would be Vitamin B12 (methylated, sublingual), B1, B6, potassium, magnesium, alpha-lipoic acid, carnitine.
• What's your diet? I'd recommend trying something like ketogenic diet, paleo AIP, Wahl's and the like. Try low oxalate and low lectin diets for a few weeks.
• Have yourself checked for vitamin and mineral deficiencies.
• Check for heavy metals. (Best way is to do a chelation via IV and measurement of urine. All blood values are prone to miss mercury.) But don't do this if you have mercury fillings, in this case get rid of them and wait 3 months before chelating.
• Check for leaky gut.

Chronic fatigue syndrome has those symptoms. I hope you are able to figure it out.

CFS has the core symptom of PENE (post-exertional neuroimmune exhaustion). That means, after moderate activity (say biking for 30-60 minutes), that wouldn't cause any issues for a healthy person, there will be a deep, unusual fatigue that lasts for days and includes neurological symptoms (sleep disorders, inability to find words, memory issues, brain fog and the like). If starrynight doesn't have that, it's not CFS.

[badnights]

@starrynights
It can be very difficult for doctors to track the causes of symptoms like the ones you describe. Although Frunobulax's suggestions are reasonable, you may need to see a naturopath instead of a regular doctor for much of it. There are no effective tests for leaky gut, and quite a bit of controversy over whether it is a cause of disease, or a symptom. Most doctors will not give you a diagnosis of leaky gut, though a naturopath will. The many suggestions available to fix leaky gut might be overwhelming, but it would probably be worth your while to investigate the whole issue more.

Extensive blood tests should be done by your doctor, including testing for vitamin and mineral deficiencies, and complete iron indices including ferritin. Presumably, s/he has done them and found nothing, which is why s/he is attributing it all to WED/RLS and stress.

Be very careful with potassium supplementation: https://www.mayoclinic.org/drugs-supple ... conditions.

Likewise, most doctors will tell you that heavy-metal chelation is not necessary if tests don't show excess metals in your blood. Read more on heavy metal chelation here: https://www.medicalnewstoday.com/articles/327317

The diet can have a (perhaps surprising, perhaps unsurprising) amount of influence on WED/RLS symptom severity. I like Frunobulax's suggestions for dietary change, and they would definitely be worth trying, in my opinion.

Moving a bit off-topic, I would like respond to this comment:

RLS is not a disease, but a syndrome

. This is not true, although it does depend on how you define disease and syndrome, which actually is not clear. The reasons given by the RLS Foundation when it decided in 2013 to change its name to the WED Foundation and refer to the disease as Willis-Ekbom disease were as follows:
1. To Drop Incorrect Descriptors. Restless (legs are supposed to move); Legs (other body parts such as the arms and trunk are often involved); Syndrome (we now understand more about the pathophysiology - syndrome indicates only a collection of symptoms)
2. To Enhance Universal Recognition. Translation into other languages is simplified
3. To Increase Disease Awareness. The new name will provide an opportunity to further educate clinicians, research funders, and the public about the seriousness and scope of the disease.
4. To Move Away From Negative Connotations. There are other examples such as changing senile dementia to Alzheimer disease (1977); Mongolism to Down syndrome (1965), and leprosy to Hansen's disease
5. To Decrease Trivialization and Ridicule. Many patient advocates and researchers view the existing name as inaccurate and often trivializing of the inherent suffering experienced by those with the disease.
The overarching statement by the Foundation at the time was this: "The ultimate purpose of changing the name of the disease, as well as the Foundation's name, is to improve correct diagnosis and treatment individuals with the disease, because that is not happening right now".

The reasons given for switching back to the original name two years later were that not enough medical professionals, researchers, and patients were using the new name (unsurprising after only 2 years), and there was a need to "focus our awareness efforts on educating the public that restless legs syndrome is a serious but treatable disease, rather than on trying to establish a different name".

[Frunobulax]

RLS is not a disease, but a syndrome

. This is not true, although it does depend on how you define disease and syndrome, which actually is not clear. The reasons given by the RLS Foundation when it decided in 2013 to change its name to the WED Foundation and refer to the disease as Willis-Ekbom disease were as follows:
[...]

These reasons are purely political.And they are good reasons. However, while I fully agree that the term "restless legs" has a builtin trivialization and few doctors know how serious this condition is, the sad truth is that we don't know the pathomechanism of RLS (even though there are conjectures), and most importantly we don't know if there is a unifying cause or if similar symptoms are caused by a range of underlying causes. Medication is hit-and-miss, and for some drugs we don't know why they work for us.

As symptoms vary (for example some patients associate RLS with pain, others don't), it's a syndrom in my book: A group of symptoms that usually occur together, but where the pathomechanism and the underlying cause is unknown. I have often argued that we need to get to the underlying causes. And it's quite possible that some of these causes may cause other symptoms, that are not typically associated with RLS (but may be comorbidities).

[badnights]

As symptoms vary (for example some patients associate RLS with pain, others don't), it's a syndrom in my book: A group of symptoms that usually occur together, but where the pathomechanism and the underlying cause is unknown. I have often argued that we need to get to the underlying causes. And it's quite possible that some of these causes may cause other symptoms, that are not typically associated with RLS (but may be comorbidities)

There are no widely accepted definitions that allow a clear-cut distinction between disease and syndrome.

Syndromes according to dictionary.com are "A group of symptoms that collectively indicate or characterize a disease". Yikes.

There is a good discussion of the issue here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1480257/
One of the things said is "Kawasaki disease... is properly a disease, no longer a syndrome, by virtue of its clearly identifiable diagnostic features and disease progression, and response to specific treatment." WED/RLS has clearly identifiable diagnostic features and disease progression, and response to specific treatment, so according to that definition, it's a disease. The same paper also says "A syndrome is a recognizable complex of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood." Note that this is not exclusive of the definition I just quoted for a disease. In fact, using those two definitions, WED/RLS is both a syndrome and a disease.

The Foundation decided that the appropriate term was disease, not syndrome (the abbreviated version of their reasoning, which I quoted in my previous post, was "we now understand more about the pathophysiology - syndrome indicates only a collection of symptoms"). They reverted to syndrome for, as you put it, political reasons, so presumably, most of the working group that recommended the name change still prefers the word disease over syndrome.

We have to conclude that it doesn't matter which word we use.

None of that denies the existence of different disease phenotypes, nor precludes the possibility of multiple causes. You're so right, we need to understand the underlying causes. If I were a millionaire, I know where I would spend my money - - on WED/RLS research! And I do spend some on that - I donate to the Foundation with the stipulation that it be spent on research (as opposed to awareness, which I agree is also critical - - but my choice is always research first).

[Frunobulax]

There are no widely accepted definitions that allow a clear-cut distinction between disease and syndrome.

Look at us, discussing terminology, while we fully agree on what needs to be done
I guess you're right. I looked at it from the standpoint of an underlying root cause. But the diagnostic criteria are clear cut, so maybe calling it a disease is better after all.

[badnights]

Look at us, discussing terminology, while we fully agree on what needs to be done
I guess you're right. I looked at it from the standpoint of an underlying root cause. But the diagnostic criteria are clear cut, so maybe calling it a disease is better after all.

You're right, of course; we do agree and it's just semantics. The definitions are fuzzy.

[ericksonja]

My neurologist is recommending I have a nerve study done to see if my symptoms indicate more than RLS. Has anyone else had this done? Did it help?

[stjohnh]

My neurologist is recommending I have a nerve study done to see if my symptoms indicate more than RLS. Has anyone else had this done? Did it help?

These tests won't confirm RLS, but they will tell if you have some other peripheral nerve problem contributing. The test is uncomfortable (hurts some). I am assuming the neurologist is referring to Nerve Conduction Velocity (NCV) tests and/or Electromyography (EMG).

[ericksonja]

Yes, that is the test. He has confirmed RLS, but he wants to see something is causing it and I am wondering if the test often showed other peripheral nerve problems to make it worth the pain. I suppose it is always good to eliminate other causes, I just don't want to have unnecessary tests if it is a real long shot.

Thank you.

[freddie]

After years of worsening RLS to the point I hardly go out I now have burning feet. Has anyone experienced this with RLS or is it some other problem?

[Rustsmith]

Burning feet is often a symptom of neuropathy. RLS and neuropathy are not the same thing, but it is not unusual for people to have both.

But this is something that you need to discuss with your doctor.