What is the definition of "pain" in relation to RL

[sardsy75]

But I was struck by the fact that you did not seem to have received any opioids (unless I missed some of them). If one ignores the prejudice of the doctors against them, they can be useful in otherwise hopeless cases.

You did not mention pain. And only lately they admit that pain can be associated with RLS (except that early publication in 1695 ), but they did not call it RLS then.

"Anonymous" is actually our friend Mr Owl and the original post can be found on page 1 of the "self diagnosed" thread under this subject header.

I am wondering about the actual defintion of Pain in assocation with RLS. I have read in both medical articles and personal posts that people have pain with their RLS.

Is the definition of RLS pain that of pain from symptoms that are actually painful/causing pain ???

or

Is the definition of RLS pain that of pain which is a direct result/consequence of the actions taken to relieving the symptoms???

For me, my RLS symptoms themselves are not "painful" (i.e. the feelings don't hurt) they are more "excruitiatingly frustrating" or frustrating to the point of madness because I cannot relieve the symptoms.

I consider the pain I have to be more of a direct consequence of the actions I have taken to relieve the pain e.g. "normal" leg pain from walking for "miles", knotted and tender muscles from hours of stretching, constantly aching hips from all the exercise, lower back pain from putting myself in awkward positions to stretch, etc etc. I also get pain in my fingers and toes, however that is a result of my RLS exacerbating my Raynauds.

I honestly don't rate my pain factor very high, even though it is almost constant. The most intense, indescribable, unforgettable pain I have ever experienced was when I had a meningitis-type virus in 2001. I have also been through more than my fair share of surgery in my life so my benchmark for pain could be considered pretty high.

Would I benefit from an opiod.....I really don't know.

To date, I have survived with over-the-counter pain meds that include a small amount of codeine.

If you have not caught up with my other posts, my most recent neurologist visit was last Saturday (24.04.04). Opiods were not even mentioned despite the fact that I mentioned the pain in my muscles, hips, back, fingers & toes. My neuro had a hard enough time prescribing me a sedative back in January (and an ultra-weak one at that); so my chances of even talking him into an opiod just yet don't seem too hopeful.

The other neuro i'm going to see on May 21st might have a different opinion. We shall just have to wait and see.

Can anyone tell me if their symptoms ARE painful?
Does anyone just have pain as a direct result of trying to relieve their symptoms?

Do I sound confused? Yup Is it past my bedtime? Yup

Any thoughts/comments would be most appreciated

Sweet dreams to you all
Nadia

[jumpyowl]

that someone remembers what I wrote at the start of my "career" here. However, this is still a very interesting point, which clearly has not been researched. I still hear occasionally that "well, if you have pain it is not RLS." Although, such opinions are on the way out.

Well, pain as well as paresthesias (spontaneous weird feelings) are highly subjective feelings. They cannot be measured with instruments to any accuracy. And doctors,( who do not feel them), when the patients appear healthy (at least alive and functioning), and the lab tests come back negative, usually jump to the conclusion that it is all in the patient's mind. Male doctors did that especially with women. But we progressed. Nowadays doctors male or female do it to everybody.

I can only talk about myself. I have noticed the pain first. Couple years after a bout with sciatica, I started to have a pain in my right knee in bed, especially if I kept it motionless for a long period of time. When I moved it the pain went away. If I did not move it, the pain increased, and kept increasing until it became severe enough that I had to move it. (Occasionally it occured in the left leg as well).

If the pain woke me up, by that time it was so severe that I did not dare to move it, or I could not move it (was too sleepy to know which). In such cases I had to grab the knee with both hands and move it to a different position and then rubbed it, then flexed it, until the pain went away in a surprisingly short time.

This pain is quite different from the usual muscle pain from over exertion, I would assume it was a nerve pain (neuralgia), it seems to originate from the bone rather than the muscle.

The same thing started to happen when I drove a car for a long distance at a steady speed without moving my knee. Cruise control solved that problem.

When the strange sensations started in the legs usually soon after I retired it made me move my legs around, so I assume the pain could not get started. Only when it stopped, after getting up, walking, or talking a Tylenol, or a tranquilizer, often after falling asleep did the pain develop. Often upon waking up the pain is there at several places in the leg and hip area, but moving around gets rid of them.

Hydrocodone usually dulls the pain but is not effective in stopping the paresthesias especially when they already started. Anticonvulsants and benzodiazapines, on the other hand, eliminate the paresthesias and possibly forestall the pain. Hard to tell because luckily I am asleep part of the night. However, clearly my legs are not.

Well, that is my contribution Nadia to your research survey. I hope others also contribute!

[becattx]

HI. 40 yrs old and have had RLS all my life. Yes there is pain with my RLS. My early childhood was flooded with waking up in the middle of the night with growing pains. Crying and racing for a hot water bottle in the middle of the night. By the age of 4 I could fill them on my own, never woke up my mom to do it. It just happen to often. The RLS gave me a break in my 20's, but came back with a chip on it's shoulder when I broke my leg/anke 10 years ago. I did not sleep or was pain free for 8 years. I finally did my own research and found that we have 8 people in my family that suffer with this. 4-5 of us suffer with pain, 3 extreme pain.
Now my legs, knees, and feet suffer overwhelmingly. My muscles feel tight and rigid as if I climbed a mountain, that's on an "attack day", when I wake up. The pain is real and deep in my legs. by 10:00 am I'm at a pain level 5. By 5pm it's at 7-8. By midnight 10 is here and beating me.
My feet are frozen numb in the winter, burning hot in the summer. My silly side note to this is that I itch all the time. The mirapex helps with the pain to a degree, but it makes my itching increase. I'm hoping to find help with the pain.
However, the best goal is quality of life for me. It's out there and I'm going to fing it.
have a great day.
becattx

[jumpyowl]

Hello, becattx: If somebody I know is entitled to pain medication it is you!

My daughter suffers from an extremely painful form of fibromyalgia. She is on morphine and a dozen other medications. She then takes codein for break-through pain when warranted. She could not stay alive if it were not for the pain killers. Even with all these she can only control the pain to 5-6 level.

I myself was in a painful state once when, once I woke up, I begged the nurse to kill me (she was leaning over me watching my pupil whether to dare give me morphine subcutaneously) I shall never forget her cool, unemotional answer: "we are not allowed to do that.".

You have not talked about medication but at home a chronic pain should never reach the level ten. The temptation to end it all is just too great!

Rush to a reputable pain clinic and get help as soon as possible. The nice things about certain pain medications (opioids) that they also control the paresthesias as well as the pain.

Can you share with us what medication you take? Besides Mirapex which perhaps you should not take! You can e-mail me privately if you wish.

[Rubyslipper]

I had horrible leg aches when I was a child too. I remember my aunt rubbing my legs one night and it truly hurt too much for her to touch them. But for the past few years my leg aches have gone away except for every great once in awhile. Aspirin usually takes care of it then. The only real pain I have is in my lower back. Luckily I only have it infrequently but when I do it is almost impossible to get relief and it also becomes hard to walk. I have also started having shoulder pain in both but I think that may be from overuse. My doctor is looking into peripheral neuropathy for me, not because of pain but because of other symptoms I have. But in my own research of PN, the pain that some of you describe seem more in line with PN than RLS. It is also becoming more than a theory that sometimes RLS is a pre-cursor to PN. What triggers one can trigger the other and many times the same medications are used for both. Most of the research I have done for RLS seems to indicate that while sometimes pain can be present with RLS, it isn't usually too severe. But there are new findings everyday and I may be behind. But I suggest that if you have severe pain, you might check out peripheral neuropathy on the web or check with your doctor. With both RLS and PN it seems like sometimes the culprit is how the body handles iron and/or B12. Again, there is so much new info each day on RLS, and I think part of that is because of sites like these. People who are looking for answers find others with the same problems and then take those problems along with the info they have received to their doctors and demand they be taken seriously. HURRAY! There is a good site like this at BrainTalk on the web ( I am not smart enough to know how to put the link on here like my friends!) and I encourage anyone with pain to look it up as well as talk it over thoroughly with their doctors.

[Sole]

I know this has been a dead thread for a while but since it's already here, I figured it would be silly to start a similar one. In all of the years I've had RLS, I've never had any real pain asscoiated with it, except for when I've over stretched them to help ease the restlessness. That is until this past week and a half. Since the Saturday before last, it feels like I have shin splints. It was very bad for the first few days. Then subsided. Then came back, after being on my feet for a couple of hours last Saturday. Since then, there's a constant ache in my shins. It feels like it's in the bones. I'm wondering if this is just a knew symptom or if maybe something else is wrong. I'd like to know what to suggest to my Dr. since she has a hard time thinking on her own.

[jumpyowl]

Whenever you answer or reply to a dormant thread it will be kicked up to the top of the topics of that forum so it will get attention. Also I agree with you, similar things should be under or in the same thread. It makes things easier.

I am not sure whether they apply to your case, (how could I be?) but I observed interesting things about pain and new drugs taken. I wrote about this in detail in my thread on page 5.

Important! this new pain! Does it go away with movement of the limb? Or it is there now all the time or major part of the day?

What pain medication if any you are taking? If I recall correctly, none?

[Sole]

On page 5 you say, "The whole legs felt strange, the crawling sensation subdued but still were there as if under protest and the whole leg was feeling like it was waiting to burst." This describes the feelings I have, combined with the dull ache. Does it stop when I move? Yes and no. If I'm lying down, it will stop when I move them but start right back up when they're still again. Just like the parathesia (did I spell that correctly?) usually does. But the pain does not stop when I walk for any great distance...like in the grocery store.

No, I'm not taking any pain medication. Just Advil. I don't know how in the world I'm going to approach this new pain with Ms.B, sseing as she doesn't even want me on Klonopin. There's no way she'll prescribe painkillers on an ongoing basis.