RLS vs myalgia

[RLSLES]

Hi,
I just joined and am still trying to determine if RLS is what I have. I'm a 50yo male. I've been seen by a neurologist though he did not mention RLS. I chanced across the description and it was the first one that seemed to "fit" the fact that my pain reduces with movement, whereas other things like fibromyalgia, Lyme etc didn't fit.

I've had that "urge to move" issue for maybe 5 years, but for 3 of those years I thought that was just what everyone felt after too long in a car or movie theater. About 2 years ago I had more persistent pain in both legs, deep in the thighs mostly, and also in both upper arms. It's not the creepy crawly feeling that I see some people describing for RLS. The descriptions I used with doctors about what I experience, before I ever heard of RLS or the RLS criteria, were:
- a dull ache, almost like when muscles run out of oxygen during exercise, a stretching feeling but no muscle spasms; “sour” feeling; “museum legs”. There is no burning, tingling, or any of those adjectives. The dull aches were gradually present on some days, and as of 9mo ago have been present on all days.
- Worse with rest, especially later during the night (if I wake) and early morning. Always present on waking, but then I can get rid of it with morning movement and/or exercise until it returns again later in the day or in the evening. Before gabapentin, the pain was waking me up early ~3-5 days a week.
- After getting up from bed, unsteady gait, and muscles are put into a very stretched state just from sitting / standing. Feels every morning like I am stiff from running a marathon the previous day though that quickly dissipates with movement.
- Before starting gabapentin, flying was quite torturous (2 Advil per 3h and still a lot of pain) presumably because of the inactivity; now much better with the gabapentin. If I can't move in these kinds of situations, I resort to tensing/flexing my legs straight out to work the muscles and thus reduce the pain and the urge to move.
- Much better with exercise. Previously taking 4-6 advil a day, but using exercise instead (daily cycling and aerobics), the average came down to maybe 2 advil every 3 days. Sometimes need to do another bit of aerobics before bed in order to get to reduce the pain so I can sleep. Now with gabapentin, advil is only about once or twice a week and I usually don’t need pre-sleeping exercises.

I'm on Biktarvy for HIV (but the muscle symptoms pre-date taking that combo or any of its relatives), with undetectable viral load. {There is one article about more RLS in people with HIV though the paper seems a bit weak.} For the muscle pain I switched from gabapentin to Gralise, which is slow-release gabapentin that doesn't peak so abruptly. It hasn't eliminated my symptoms but has been a huge improvement over endless Advil. The dopamine drugs have never been offered to me as we never discussed an RLS diagnosis (or any other diagnosis - the neurologist just said we treat the symptoms).

So when I look at the RLS criteria online, this is where I fit in or don't fit in:
1) An urge to move the legs usually, but not always, accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.
YES. Definitely sometimes I absolutely HAVE to move my legs, especially in theaters etc. BUT I often have pain without an OVERWHELMING urge to move -- it just feels much better when I do move, and I do a lot of roaming around the apartment as a result.
Note that I don't believe that I kick my legs involuntarily at night -- which I realize is not necessary for an RLS diagnosis but is found in about 80% of those with RLS.

2) The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.
YES, absolutely. Though sitting seems worse than lying down for me.

3) The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
YES, 1000%. If I skip my morning exercise, the day is generally a bad one. If I sit at work for too long, I have to go for a mid-afternoon ride to get back to a reasonable state. We've even started going on holidays that involve hiking or other exercise every day so that I can reduce symptoms.

4) The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.
YES, can be present earlier but definitely worse in the evening.

5) The occurrence of the above features is not solely accounted for as symptoms primary to another medical or behavioral condition (e.g. myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).
I'll be checked out soon for venous stasis (have an appointment in a couple of weeks). The rest are not me. Ruling out "myalgia" is the one that trips me up, because that just means muscle pain which is a description of a symptom, not a diagnosis. Not sure how to rule that one out.

So....sorry for the long post, but wondering if you have any feedback on any of this. For example, is it still RLS if:
- the feeling is an ache not a creepy crawling.
- the urge to move is sometimes an overwhelming urge (to the point of occasional twitching as a result), but more often is a desire to move in order to reduce pain. {Do others have that experience of a WISH to move, or is it always the overwhelming urge?}
- the symptoms are still present on waking (do others have this?), though they reduce quickly once movement starts and the peak is still the evening

Once I suggested it, my GP does think RLS is possible so has just ordered iron levels etc -- will know those next week.

thanks for any advice or feedback you might have!

[Rustsmith]

It appears that you have answered all of the questions except for the final one about ruling out other conditions.

The descriptions that we all use to describe the sensations varies. Whether this is simply a failing of language since the sensations are specific to RLS and therefore there simply are no appropriate words or whether what each of us experiences is slightly different is something that may never be completely resolved.

One step that has been used in the past to sort of confirm a diagnosis of RLS was to take a single dose of Carbidopa/Levodopa or one of the dopamine agonist meds in the early evening. If the medication results in an almost total relief of the sensations (it often seems like a miracle), then it is HIGHLY probable that it is RLS. If only these meds didn't have so many unacceptable side effects and the relief didn't disappear once augmentation gets started.

When you get the results of the iron tests next week, insist on getting the numbers and do not accept that the values are "normal". Normal levels for the general population and those required for those of us with RLS are different.

As for your question about a "wish to move" as opposed to an urge, I can only answer that my experience is often that the sensation initially is rather mild and might be what you are describing as a wish. Sometimes I am able to fall asleep before it progresses beyond this, other times it progresses to an urge and later to the level of a demand. If I try to resist (I only tried a couple of times), the sensation finally gets to the point where my leg(s) will seemingly move on their own. Whether this is my sub-conscious saying "enough of this nonsense" or it is a reflex like reaction to resolve an overwhelming need, I do not know and really don't care because it is so overwhelmingly uncomfortable.

[stjohnh]

Hi,
I just joined and am still trying to determine if RLS is what I have. I'm a 50yo male. I've been seen by a neurologist though he did not mention RLS. I chanced across the description and it was the first one that seemed to "fit" the fact that my pain reduces with movement, whereas other things like fibromyalgia, Lyme etc didn't fit.

...

Once I suggested it, my GP does think RLS is possible so has just ordered iron levels etc -- will know those next week.

thanks for any advice or feedback you might have!

I agree with all of Steve's comments. It sounds to me like you have RLS AND possibly peripheral neuropathy. The neurologist should help to sort that out. If not, and your GP can't get it sorted out, I think seeing a rheumatologist would be the next step.

[RLSLES]

Thanks so much, Steve and Holland! I really appreciate the feedback!
I did see a rheumatologist early on, but he couldn't find any issues with inflammatory markers so sent me to the neurologist.

Any reflection on the morning thing: do people with RLS tend to have symptoms upon waking (which then disappear as movement gets underway), or is that unusual for RLS and you only get symptoms at night?

{it's a bit of a drag when the first thing to greet every day is pain...}

Amazing to find this forum; thanks again!

[stjohnh]

...
Any reflection on the morning thing: do people with RLS tend to have symptoms upon waking (which then disappear as movement gets underway), or is that unusual for RLS and you only get symptoms at night?

{it's a bit of a drag when the first thing to greet every day is pain...}

Amazing to find this forum; thanks again!

Except in the most severe cases, morning symptoms from RLS (other than being tired) are rare.

Rereading your initial post, the arm and thigh pains are quite unusual. They sound a little bit like polymyalgia rheumatica, but the rheumatologist should have been able to pick that up. There are a bunch of rare muscle problems that are diagnosed by muscle biopsy. Perhaps that is what you will need.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

[ViewsAskew]

This is my experience regarding urge to move vs desire to move. I have developed fibro in the last few years. I often have pain because of it and it makes me uncomfortable and I think about changing position. Moving sometimes lessens the pain, sometimes not. If I do not move, the pain is still there. If I move, the pain is still there, though possibly lessened. There are times that it is intense and I truly feel I MUST move because I MUST do something to stop the pain. Yet, the pain is still there. It makes me feel weary. I sigh a lot, and feel what I can best describe as a body depression.

WED/RLS, for me, is very different. It starts with a greater awareness of those parts that are affected. Most times, my body is just a body and I am not really aware of it. Even when I have pain, I am not hyper-aware of my whole body, just the pain in the background - which I can ignore many times. In the "pre-RLS/WED" phase, I find myself winding my feet or shaking my legs or tightening then relaxing my muscles - I don't really have symptoms yet. I am just aware of my body in an odd way.

Soon, the true WED/RLS starts. The best way to describe it is that it feels like anxiety in my body - the anxiety is the urge to move. It builds until, if I do not move, I feel as if i will explode. I am truly beside myself with the symptoms; I am VERY awake and feel driven. The sensation of it isn't nearly as important, I think, as the urge. We often describe the sensation very differently and a small number of us say they don't have any sensation. It is the urge that is consistent between us. It is relentless. If you do not move, it builds and builds so you just have to move. The movement is a release. The anxiety/urge, even if just for a second or two, diminishes. The milder the symptoms, the longer the freedom lasts before it builds again. The stronger the symptoms, the less of a release. When it is very strong, moving keeps it diminished only as long as you continue to move. So, you ride a bike, hold yoga poses, walk, run, do interesting stretches, etc. Usually something rhythmic, something that uses the muscles involved. Sometimes I punch the muscles - the counter stimulation helping.

I already took my nightly medication; there may be some errors in this - please forgive them. Hope this adds a bit more information as you figure this out.

[stjohnh]

This is my experience regarding urge to move vs desire to move...

WED/RLS, for me, is very different. It starts with a greater awareness of those parts that are affected. Most times, my body is just a body and I am not really aware of it.... In the "pre-RLS/WED" phase, I find myself winding my feet or shaking my legs or tightening then relaxing my muscles - I don't really have symptoms yet. I am just aware of my body in an odd way.

Soon, the true WED/RLS starts. The best way to describe it is that it feels like anxiety in my body - the anxiety is the urge to move. It builds until, if I do not move, I feel as if i will explode. I am truly beside myself with the symptoms; I am VERY awake and feel driven. The sensation of it isn't nearly as important, I think, as the urge. We often describe the sensation very differently and a small number of us say they don't have any sensation. It is the urge that is consistent between us. It is relentless. If you do not move, it builds and builds so you just have to move. The movement is a release. The anxiety/urge, even if just for a second or two, diminishes. The milder the symptoms, the longer the freedom lasts before it builds again. The stronger the symptoms, the less of a release. When it is very strong, moving keeps it diminished only as long as you continue to move. So, you ride a bike, hold yoga poses, walk, run, do interesting stretches, etc. ...

Thank you Ann. This is one of the best, brief descriptions of the nuances of the urge to move symptom I have yet to read. Excellent. The "urge to move," like "restless legs syndrome," seem like minor problems just from the words used, yet Ann's description conveys the reality of the problem for us. People who do not have RLS just really can't understand the sensation.

[ViewsAskew]

This is my experience regarding urge to move vs desire to move...

WED/RLS, for me, is very different. It starts with a greater awareness of those parts that are affected. Most times, my body is just a body and I am not really aware of it.... In the "pre-RLS/WED" phase, I find myself winding my feet or shaking my legs or tightening then relaxing my muscles - I don't really have symptoms yet. I am just aware of my body in an odd way.

Soon, the true WED/RLS starts. The best way to describe it is that it feels like anxiety in my body - the anxiety is the urge to move. It builds until, if I do not move, I feel as if i will explode. I am truly beside myself with the symptoms; I am VERY awake and feel driven. The sensation of it isn't nearly as important, I think, as the urge. We often describe the sensation very differently and a small number of us say they don't have any sensation. It is the urge that is consistent between us. It is relentless. If you do not move, it builds and builds so you just have to move. The movement is a release. The anxiety/urge, even if just for a second or two, diminishes. The milder the symptoms, the longer the freedom lasts before it builds again. The stronger the symptoms, the less of a release. When it is very strong, moving keeps it diminished only as long as you continue to move. So, you ride a bike, hold yoga poses, walk, run, do interesting stretches, etc. ...

Thank you Ann. This is one of the best, brief descriptions of the nuances of the urge to move symptom I have yet to read. Excellent. The "urge to move," like "restless legs syndrome," seem like minor problems just from the words used, yet Ann's description conveys the reality of the problem for us. People who do not have RLS just really can't understand the sensation.

Wish I hadn't had so much time to think about it, lol, to describe it in such detail!

[badnights]

I can't add much except support for what the others have said.

I will note that it's odd that you feel it in the mornings (" especially later during the night... and early morning. Always present on waking"). WED/RLS is typically worst in the evening to late night, and best in the morning. Perhaps your circadian day was already becoming offset when you came up with your description? Patients with morning symptoms are augmenting or have a severe case.

Unsteady gait when you first get up is not part of WED/RLS.

"pain without an OVERWHELMING urge to move -- it just feels much better when I do move" This sounds like a serious problem, but is not WED/RLS. Steve and Ann have addressed the nuances of the urge to move.

"The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
YES, 1000%. If I skip my morning exercise, the day is generally a bad one." Your answer doesn't really address the requirement, tho I think from other things you've said that at least some of your pain meets the requirement. WED/RLS relief lasts just as long as the movement does, or endures for a few minutes to an hour or so afterward - never all day. I suppose exercise over time can reduce the intensity of symptoms in general, but it isn't a direct enough effect that you can tie symptoms to whether you exercised that morning.

is it still RLS if:
- the feeling is an ache not a creepy crawling. YES

How wonderful that a random GP will now order iron levels before prescribing anything for WED/RLS!

[RLSLES]

Thanks again for all the responses. I guess I'm back to where I started -- treating the symptoms without really knowing what this is. (And, as noted previously, I don't have any of the inflammation markers that you would expect for a rheumatological disorder.)
The coping techniques listed for WED/RLS generally work for me, whatever it is that I have, so that was helpful or at least a confirmation of sorts (I discovered most of them by myself beforehand, by trial and error).
FYI, my iron and ferritin results came back normal to high so not something that would trigger either oral or IV iron treatment.
Thanks again for your willingness to share your experiences and provide feedback!

[stjohnh]

Thanks again for all the responses....

FYI, my iron and ferritin results came back normal to high so not something that would trigger either oral or IV iron treatment.

What were the actual numbers? "normal" to "high" still may mean you should get iron treatment.

[RLSLES]

Iron 145
TIBC 273
Iron sat 50
Ferritin 149
The updated guidance sent in the first message above recommended IV iron only if ferritin <100, and said, in a tiny 9 point type footnote, that "Although benefit may occur when the pre-treatment serum ferritin is 100-300 μg/L, current data and experience are incomplete."
If I was sure I had RLS it might be worth trying anyway, but I'm not even sure of that so I doubt a Dr would go for it.

[stjohnh]

Iron 145
TIBC 273
Iron sat 50
Ferritin 149
The updated guidance sent in the first message above recommended IV iron only if ferritin <100,...

If I was sure I had RLS it might be worth trying anyway, but I'm not even sure of that so I doubt a Dr would go for it.

Yup, you don't qualify under the guidelines, but a ferritin of 149 is only a little high, have you had a ferritin test previously? If so, was it higher or lower?

Next time you get a ferritin/iron panel, make sure you get the transferrin as part of the panel, it gives more information about the reason for the ferritin > 100.

Also be sure you are fasting, and have not taken any iron tablets for 48 hours before the test.

[RLSLES]

Iron 145
have you had a ferritin test previously? If so, was it higher or lower?

Next time you get a ferritin/iron panel, make sure you get the transferrin as part of the panel, it gives more information about the reason for the ferritin > 100.

Also be sure you are fasting, and have not taken any iron tablets for 48 hours before the test.

To respond to your questions: Yes, I was fasting, but this was my first ferritin test.
Noted on the transferrin -- thanks for your feedback!