Does anyone have symtoms they would call pain?

[Julianne]

I have recently learned about RLS and pretty sure I have it. However, I wonder if I may have something else going on too. Does anyone out there have the following situation:

I began noticing a real problem with symptoms in 2004. I all of a sudden started having EXTREEM sensations in my right leg when I was sitting at work. Could not sit for more than 5 minutes without having to get up etc etc. The more upset I got the worse it got. Went to a Dr. and went thru all the tests with no abnormalities as you all have also done. Symptoms finally to include both legs and arms but then got less and less and finally would go away for long periods of time. Never did get a diagnosis and did not pursue it any further despite many relatively short-term occurences (a few days to a few weeks at a time) none of which were as bad as the first episode. Until recently. I just underwent some minor knee surgery and very, very painfull symptoms began to occur about 10 days after surgery. I am absolutely miserable. The pain--I call it pain as it is tingling and also pulsing, throbbing and feels hotand very severe at times. It migrates around and might be in my calves for awhile then my thighs or maybe my arms. Many nights I cannot sleep very long without getting up and literally crying because I am so miserable. The discomfort is less during the day but the symptoms don't ever go away completely.

Can anyone out there relate to this experience? Much of what I read, people are talking about discomfort or tingling but I haven't seen anyone who says anything like my story. HELPP!!!!!!

[beth]

Hi
I have had RLS since I was you but it came and went.I am 50 now and it is everyday in my legs and arms etc. I have tried numerous meds and still don't have one that works.I had pain for the first time when I started the Parkinsons meds and it was very severe with Sitimet.I was told to go off it immediately . I have heard others speak of pain but I know the books say after surgeries you can have worse bouts of RLS. Beth

[Scarlett46]

I have some days with really bad RLS... can't stand to sit still... gotta bounce, or walk, or curl up and then stretch.

But then there are other days when my legs HURT. It's more of a deep ache. But the same things seem to apply... gotta bounce, or walk, or curl up and then stretch.

The more I pay attention, and keep track of my symptoms, the more I think they are definitely related. I think the achy days are just severe RLS days.

[SquirmingSusan]

Hi Julianne and welcome to the forum. Have you had the surgeon look at your knee since the surgery and told him/her about what's happening? It almost sounds like some kind of low grade infection or some other complication of the surgery. "Pulsing, throbbing, feeling hot" just sound like infection or inflammation to me. Maybe you can ask the doctor what's "normal" after surgery like you had.

But then again, the pain migrates around and isn't always in your leg. Hmm. Now that sounds more like the RLS I know. My RLS became extremely painful after having augmentation from Requip, and now I have chronic leg pain along with the other sensations.

Does it help to get up and walk around? That's really one of the keys to whether it's RLS.

In addition to seeing the doctor and getting treatment for the pain, I would recommend visiting Jill Gunzel's website -Google RLS Rebel and you'll find it. Her whole focus is to use multiple techniques, or "tricks" as she calls them, and not just to rely on one, like many of us rely on medicine. She's all about having a plan for when it happens, and not putting up with it, making it stop immediately by walking, stretching, or whatever turns it off. It sounds like you feel so out of control with this, and she has lots of ideas for regaining control and learning to deal with the symptoms when they come.

Good luck with it.

[Tentoumushi]

I have expereinced SEVERE pain too. I had been experiencing RLS for 15 years or so with the "not so normal" twitching, jerking, etc. Then the pain started in my lower legs, with a burning spasm type pain usually in the shin or side of my leg. Nothing like a charlie horse which you can rub or stand on and it will go away. With this pain I could barely walk and when my husband tried to rub them I started screaming. The only thing that helped was heat so I would turn on the heating pad before bedtime. Then both legs started it, ok, 2 heating pads. Then my upper thighs got in the act!! At it's worse my husband would hurry to the bathroom and start hot water in the tub and I would crawl in, clothes and all, as hot as I could stand it. Sometimes it would take hours before I could get out of the tub. More than once my husband thought he was going to have to take me to the ER! Just about that time I was diagnosed with uterine cancer and all RLS treatment was put on the sideline. They didn't want to compound my problems with side effects of more drugs. After a second cancer diagnosis and treatment my RLS is working itself back to it's old shenaigans. Seems chemo/radiation is a short term cure for RLS but I wouldn't recommend it : ( After the last round of chemo/radiation they finally gave me Mirapex but that is starting to wear off too. I found out by accident that the Hydrocodine they have me on for the permanent radiation damage has a wonderful side effect! It does more for the RLS than the pain : ) They had me on 10/500 mg every 8 hours, but, the drug would wear off before the 8 hours were up so I took it upon myself to cut them in half and take 1/2 every 4 hours. Keeps my RLS at bay. I am retired so I spend all my time at home and my RLS isn't just a night. It's all day, any time I try to sit down or take a nap. As long as I'm moving, life is wonderful, but who can be on the move 24 hours a day!

[SquirmingSusan]

Hi T and welcome to the forum. Doesn't it just seem like, after so much illness and treatment, the universe should cut you a break?! But it sure doesn't seem that way. I hang around with a cancer support group because my dh went through AML treatment a few years ago, and I know that chemo, and especially radiation, are no picnic. My heart goes out to you and I hope you're done with all that.

As you've found out, hydrocodone is a very effective treatment for RLS. If you still have the pain from the radiation, maybe you can just stay on that or a similar drug? I know that for a lot of us, it comes with some insomnia issues of its own, and I personally built tolerance to it very quickly. But a lot of us take opioids on an ongoing basis for our RLS.

Best wishes with it.

[Tentoumushi]

I know the majority of RLS sufferes don't experience the pain part but I have been asked to try to describe it several times. The only good description I could come up with was: someone cutting a slit in my leg at the top and one at the bottom and pushing a ball bearing slowing from one hole to the other. At first my husband thought it was a charlie horse but you don't get charlie horses down your shin or the inside of your leg! Some folks have to "experience life" by bungee jumping, skydiving, etc. Me, I get all the experiences I can handle (although, if I jumped out of a plane, I'm sure I wouldn't even notice if my legs were twitching, at least until I landed and they quit shaking ; )

Hummmm, there is an airfield a couple of miles away, wonder if they give skydiving lessons at night?

BTW, Tentoumushi is Japanese for Ladybug : )

[DARCYUK]

Hi T, Yes, I have experienced pain in my legs as well. The best way to describe it for me is a really SHARP, and I mean SHARP stabbing pain down the front of both legs, I don't get it all the time, only when I have been sitting for a while. I then have to get up and move around to relieve it, usually works, but sometimes it can last for a couple of hours! OUCH!!!

BTW. What is a "Charlie Horse"? I am just an ignorant Brit! Lol!!

[Scarlett46]

A charlie horse is a muscle cramp. Tightens right up into a ball. I used to get them in my calves when I was younger. Always in the middle of the night - would wake me right up screaming.

But they are much different than the RLS pain - at least for me...

[Sojourner]

Hi T & J, Just wanted to add another welcome. RLS sure is a bugger isn't it. I think that the painful rls is just coming to be appreciated by many caregivers. Hope that you both will find some peace and respite this night.

M.

[Julianne]

Thank you to everyone who responded to my question. As you all have already discovered, it is so comforting to know there are others who suffer from the same thing and that it isn't just all in my head (my feelings about it not suggested by anyone thank goodness!) It is also too bad there are so many of you with the same problems 'cause I would not wish this on anyone.

Someone asked about whether I get relief or not from moving about. Yes, I absolutely do, although I often still feel symtoms it is sooooo much better than just sitting or lying there suffering. Also, in answer to the comment about complications from surgery a possibility to account for the burning pain, I don't think so as the sensation was in both legs at the time.

I just started Requip about 5 days ago. So far, I have noticed an improvement after taking the .5mg dosage for two days. I do, however have periods of nausea and headaches. Not sure if this is due to the Requip or the fact that I have been taking Oxycodone off and on since my surgury a month ago. (The Oxycodone does help me deal with the RLS symtoms during the day but I cannot take it at night as it keeps me awake (?!) Think the nausea etc is due to the Requip but, according to the Mayo Clinic info I looked up, this may pass in 2 weeks or so.

Lastly, have you guys been "officially" diagnosed with RLS? The reason I ask this is because I have found a few Doctors reluctant to commit themselves in this area. My regular physican is the one who identified RLS as a likely diagnosis and I was able to get an appointment at the Mayo Clinic with a "Movement Specialist" who specifically deals with RLS as a result. The appointment isn't until Dec but I will post any results that may be of help to others.

[Tentoumushi]

I went to my primary doc 20 years ago and he looked me in the eye and said "you have restless leg sydrome". I didn't say it out loud but in my mind I said "yea, right, you just made that up off the top of your head!" But after finally seeing little paragraphs about RLS in Better Homes & Gardens and other women's magazine and 5 more doctors saying the same thing I came to the conculsion there really was such a thing. Just took 18 years to find something that helped (besides a tub of really hot water! ) As far as RLS/pain starting after surgery, I personally rule that out since mine didn't start until years after my last surgery. Mine is genetic. My father and my son both have RLS, just not as bad as mine (maybe hormones make it worse for me than them?)

[becat]

Hi Julianne,

Yes I have been officially diagnosed, first by myself through medical libraries, then by an expert (known) in the field of RLS.

Mine is genetic from both parents, yeah.

And it's painful, like the growing pains I had all my life when I was younger, til my late teens or early 20's.

What you said about moving to help or not because it gets so bad, I totally understand. Movement helps, but only temporary, and some days it was enough to just stay in my body.....so I laid there with a heating pad or scald myself with the hottest water I could stand.

The Mayo Clinic should provide you with a diagnosis and then the proper help.
I will warn you that neurologists are not known for good pain management, but I hope in your case, that will not be the case. I would try what they wanted me to try, but go slow with meds.....we want to live long, right? So have choices left for yourself.

I will tell you that when you go in, and if they offer medications, ask the important questions.

How long before this should work?
What do you expect for this medication to do for me?
When should I know to call you if this does not work?

That is only fair to know.

If things they give you don't help, then fight for what is right for you. For me after 3 yrs of doing what my doc wanted me to, I finally needed my husband to step in, go to an appt. with me and help me demand better help.

So anyone that lives with you and sees what is going on can be an asset for sure.

I hope all goes well and you will get relief soon.

Lynne

[Momo]

pretty much every time i have rls symptoms i can only describe them as severe pain

[Aiken]

I went to my primary doc 20 years ago and he looked me in the eye and said "you have restless leg sydrome".

Wow, you should go back to that guy and tell him he seriously rocks. It's 20 years later and many people still can't get their doctor to say that.