New with a major question: "Just" pain, or weakness, too?

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Dial911
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Joined: Wed Jul 31, 2019 2:26 am

New with a major question: "Just" pain, or weakness, too?

Post by Dial911 »

Dear All,

I don't yet have an official diagnosis. My internist is stumped, as is my physical therapist, but both agree that my pain has a neurological rather than orthopedic origin. I can't get a neurologist to see me until late September, so I've been using the Internet, and I'm pretty sure RLS is what I've got. I have mainly aching pains in my legs that come and go all day and sometimes all night, regularly shifting places or disappearing if I move my legs. This started in January and has become progressively worse. NSAIDS don't ease the pain. My legs jerk with what feels like an electric current perhaps a couple of times a month, but mostly I'm in complete control of my movements; I just have to switch positions all the time because of this aching inside my limbs.

Oddly(?), I also have stiffness and weakness in my legs, particularly in my thighs, in spite of regular exercise. Sometimes when I get up from a seated or prone position I feel as though my legs won't hold me, though thus far they have. My physical therapist noted some weakness in my thighs but nothing else that would suggest motor neuron disease, and my muscles react normally to stimulation from dry needling. The thing is, along with the distressing pain in my legs (and occasionally in my arms) I often find myself limping. Sometimes my left leg, which usually hurts more than my right, feels so tight that it seems shorter than my right or like it's a peg and no longer really part of me. I mean, I understand it's mine and don't wish it away, but sometimes it just doesn't feel connected to me in the normal way. I wonder if anyone else experiences this symptom, as I haven't seen it described anywhere -- not in connection with RLS or with fibromyalgia, which is the other possibility for what ails me.

If you've read this far, many thanks. Best wishes to all of you here dealing with this difficult disease.

Rustsmith
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Re: New with a major question: "Just" pain, or weakness, too?

Post by Rustsmith »

Dial911, welcome to the board.

The sensations that we experience with RLS are very difficult to describe since there are no other sensations that anyone else experiences that we can compare them to. The experience that we have also varies from person to person.

Here is a link to the official diagnostic criteria. There are no tests that a doctor can conduct for a diagnosis, just these questions. http://irlssg.org/diagnostic-criteria/

The one test that should be done is a blood test to measure iron levels. This should be a full iron panel PLUS ferritin. If your doctor does this, make certain that you find out what the actual ferritin number is and don't accept that it is "normal". The general population can have ferritin values as low as 20, but for RLS patients it should be at least 75 and better yet over 100.

And here is a link to the latest guidelines for treating RLS in new patients. https://www.ncbi.nlm.nih.gov/pubmed/27448465. This may not be consistent with what your doctor will prescribe because these guidelines are new and even if a neurologists is familiar with treating RLS (many are not), (s)he may not be up to date with the latest guidelines.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: New with a major question: "Just" pain, or weakness, too?

Post by ViewsAskew »

Welcome, dial911. Definitely use the diagnostic criteria to see if it seems "right" to you. Notice that RLS has a circadian rhythm to it - even for those of us with severe RLS, it is always worse in the evening (given we are on a traditional sleep schedule, or somewhat close to it).

Some of us are sure our sensations are electrical in nature. Others experience what they call pain. Mine are electrical so I am not at all helpful when it comes to people who experience what they feel is pain.

I am not aware of any RLS symptom that causes weakness.

I have been diagnosed with fibro; for me, it is very different than RLS. RLS, for me, is a sensation that builds quickly into an incessant urge to move. The urge is like an anxiety in my body and I MUST move. The sensation is almost secondary - the urge is the most important part. Not saying the sensation isn't annoying - it is! It happens when I am at rest, when I am sitting, watching TV, eating, at the theatre, etc. The need to move takes over and I have to walk, run, do yoga, and stop relaxing.

The fibro is with me all day. It is hard to stand when I first get out of a chair. It makes moving my body difficult. It means stretching when I awaken is so painful I just want to go back to sleep. I means that I ache all the time. BUT, NSAIDS do help with it. Not enough, but they do help some. So far, and antidepressant is the only thing that seems to remove it effectively.

Just my experience! May or may not be helpful to you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Dial911
Posts: 4
Joined: Wed Jul 31, 2019 2:26 am

Re: New with a major question: "Just" pain, or weakness, too?

Post by Dial911 »

Thanks, Steve and Ann, I really appreciate all this info. I will try to get my internist to order the iron tests. In the meantime he has put me on Lyrica, which is just beginning to show signs of helping. That is, it seems to lessen the pain; the weakness is the same. I was already on Cymbalta for arthritis pain in my neck, and I'm taking turmeric supplements just in case. Hopefully all of this will carry me through until I can see a neurologist. I've actually made appointments with two neurologists, one who's a sleep specialist and one who is recommended on the RLS Foundation site. I'm very anxious not knowing what this is and wondering if I'll find a treatment that will allow me to live a normal life. Thanks so much for being there and offering your experiences and insights.

Dial911
Posts: 4
Joined: Wed Jul 31, 2019 2:26 am

Re: New with a major question: "Just" pain, or weakness, too?

Post by Dial911 »

One more question for you, Ann, if I may. My level of pain is pretty much the same all day, and, like you, I have trouble standing and stretching. So maybe this is fibro. (I thought it wasn't because I don't have extraordinary fatigue or brain fog, and the symptoms are concentrated in my legs rather than all over, but I do have trigger points, so who knows?) But neither Motrin nor Melaxicam makes a dent. Is there another NSAID you'd recommend based on your experiences? Sorry to be off-topic; I don't wish to offend anyone. I'm just desperate because it took my internist six months to admit he had no clue how to treat me and was just taking stabs in the dark.

ViewsAskew
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Re: New with a major question: "Just" pain, or weakness, too?

Post by ViewsAskew »

Dial911 wrote:One more question for you, Ann, if I may. My level of pain is pretty much the same all day, and, like you, I have trouble standing and stretching. So maybe this is fibro. (I thought it wasn't because I don't have extraordinary fatigue or brain fog, and the symptoms are concentrated in my legs rather than all over, but I do have trigger points, so who knows?) But neither Motrin nor Melaxicam makes a dent. Is there another NSAID you'd recommend based on your experiences? Sorry to be off-topic; I don't wish to offend anyone. I'm just desperate because it took my internist six months to admit he had no clue how to treat me and was just taking stabs in the dark.
I thought that the pain was trigger points - I also have them - initially. But, it progressed over time. I do not have the extraordinary fatigue, either. I do have some brain fog, but it is the same as before and from the meds or lack of sleep due to the RLS/PLMS. I do have lesser pain in my neck, shoulders, and back, but the main pain is in my hips, thighs, knees, ankles, and calves.

The only NSAID that helps at all is prescription strength naproxen. I do not remember what the dose was...but I seem to recall that it took five of OTC ones to make up a prescription strength dose. When the doc gave me that, it helped some.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Dial911
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Joined: Wed Jul 31, 2019 2:26 am

Re: New with a major question: "Just" pain, or weakness, too?

Post by Dial911 »

Thank you, Ann. I wish you relief and healing.

stjohnh
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Location: Palo Alto, California

Re: New with a major question: "Just" pain, or weakness, too?

Post by stjohnh »

Rustsmith wrote: And here is a link to the latest guidelines for treating RLS in new patients. https://www.ncbi.nlm.nih.gov/pubmed/27448465.
One further note, the general guidlines Steve linked are the 2016 general guidlines. There has been one additional change since those were published. IV Iron therapy has been moved to a first line status.

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 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 tests doctors usually do (ferritin test) to check for low iron only check 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
Blessings,
Holland

ViewsAskew
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Re: New with a major question: "Just" pain, or weakness, too?

Post by ViewsAskew »

Dial911 wrote:Thank you, Ann. I wish you relief and healing.
Thank you.

And to you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: New with a major question: "Just" pain, or weakness, too?

Post by sleepdancer2 »

Not knowing if this pertains to you, please take my words with a grain of salt. If you happen to have periodic limb movements, that could account for weakness. Over years of my legs moving in my sleep and almost never getting the rest and sleep needed for restoration, I experienced progressive weakness to the point of no longer having the strength to navigate steps. Best wishes in figuring things out and hoping you find some relief.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

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