RLS?

[carolsond]

Hi!

I have severe RLS. I've had it about 18 years. I am taking Mirapex which seems to help at times and other times it doesn't seem like it's doing anything to relieve the horrible RLS pain. I DON'T have any creepy crawly or tingling feelings in my legs. I have intermittent pain in my lower abdomen especially on the lower right side. The pain hits me about every 20-30 seconds and it feels like someone is stabbling me. It's excruciating. When I get up and walk around, I do get relief from it. The thing is I'm wondering if it's really RLS. I've never heard of anyone having sharp pains in their lower abdomen from RLS. Occasionally the pain is in my right knee. The fact that the pain is relieved by walking around has made me accept that it must be RLS and my Sleep doctor diagnosed me with severe RLS. There are certainly times that I do wonder, however. Any thoughts would be much appreciated. I've had my right ovary removed in 1980 and I have thought at times that it may be the adhesions from the surgery, however, I went to a GYN doctor at Mayo Clinic and all he said is that it could very well be adhesions, however, if they removed them surgically, they would more than likely grow back again so I wouldn't be ahead-ugh! I would think there would be something they could give you to prevent these adhesions from growing back????

Take care!

Carol Ann

[SquirmingSusan]

Hi Carol Ann, and welcome to the forum. I would also question whether it is really RLS, because it really doesn't sound like it meets the 4 criteria that have been developed for diagnosis. These are from the RLS.org main site:

What is RLS?

Restless legs syndrome (RLS) is a neurological condition that is characterized by the irresistible urge to move the legs. In order for you to be officially diagnosed with RLS, you must meet the criteria described in the four bullets below:

* You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: creeping, itching, pulling, creepy-crawly, tugging, or gnawing.
* Your RLS symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
* Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
* Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day.

RLS can also cause difficulty in falling or staying asleep which can be one of the chief complaints of the syndrome. A substantial number of people who have RLS also have periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30 seconds on and off throughout the night. This can cause partial awakenings that disrupt sleep. Sleep deprivation can seriously impact your work, relationships, and health.

The main thing with RLS is the strong urge to move the affected limbs, and that you get relief when you move.

A lot of us have painful RLS, and you're right, Mirapex doesn't help with pain. You say that Mirapex helps sometimes - what does it help with?

[Neco]

This definitely seems like tricky territory..

Has anyone ever suggested you try painkillers or perhaps some kind of muscle relaxers to deal with your bursts of pain?

On the one hand, that it comes every 20 - 30 seconds, and I'm guessing isn't "constant", makes it sound like it could be a cramping sort of reaction related to your surgery.. This is just a wild guess in the dark, as I don't really know anything about that.

But if you are getting stabbing pains, etc.. I would think they would at least want you to try some painkillers or relaxants or something.

Did anyone ever inform you, that you may experience side effects like this from your surgery? Hopefully you have already been reassured that there is nothing life threatening/wrong. As for why you may get the pain in your leg, it could just be one of those natural issues to do with nerves being close to and irritating each other, etc.. (sometimes when I have dental pain, I get phantom pain in other teeth that are fine, for example).

Have you looked into getting second or third opinions? I think I would at this point.. It just doesn't sound like any kind of RLS I've ever heard of myself, I have to agree on that.

Definitely want to keep looking for more help from doctors if this is a constant 24/7 thing you deal with, or even if it is intermittent.

[ViewsAskew]

The non-painful RLS is a breeze to diagnose. There's not much else it could be if the 4 criteria fit.

Painful RLS is a different story, unfortunately. It could be RLS...but it might not be. Or, it could be RLS AND something.

One of our dear members, MyDecember, went through an extremely difficult time. Turned out that MyDecember's RLS was RLS, but was also a particular kind of neuropathy. It took almost a year to diagnose it, if I remember correctly, and there still isnt' a good treatment. MyDecember's post about what the final diagnosis was is around here somewhere...

RLS can be in the abdomen, though it's not common. If I think as to how most people with RLS pain describe it, it's pulling, constant, aching...not stabbing.

Zach has a great idea - multiple opinions. Many doctors will blow you off. Our own Becat went through something similar last year. They said her lower abdomenal pain was nothing, it was this, it was that...turned out she need surgery to resolve it, but the doctors missed the real problem for a long, long time and she had to see several of them to get it straightened out.

I am so sorry that you are in this position. I hope that you find the right answer...and quickly. I also hope that someone else here on the board knows anything that might help guide you.

[becat]

HI Carol Ann,

Yup, I had something along the same thing going on, but I have RLS pain as well. However that is in my legs and occasional shoulder and arms (arms are more like energy or a buxzzing sensation).

Yes, it's I have the 4 criteria that fits right into the RLS expert lines, I can when under a full attack take skin off any part of my body. However, mine true RLS is the pulling of my muscles in my legs, much like growing pains felt as a kid.

Now about your lower abdomen, I'm no doc, but as mentined went through all of last year seeking answers to what was the problem with that area of my body.
Have you had a surgery in this area before? Hystercertomy maybe? Yes, scar tissue can be taken care of , yes it can come back. It's a beast, but an evil we must face up to because to ignore it is impossible ofter awhile, as you know.

What I honestly recommend is finding a doctor that will run a MRI with contrast. That is the only test you will need to see if damage to soft tissue is there. This is what I would demand, first and forget the rest of it until you get it. Insurance companies hate to pay for them, but it shows so much and in ways you can't tell with other imaging methods.

Please let us know if this helps and lets us be up to date.

Yes, RLS can happen down there as well, but would agree with the others that stabbing pain is nothing less than a sing your OBGYN or a general surgeon should see you soon.

Best Wishes,
Lynne

[Sojourner]

Carol Ann, Sorry I can't offer much in the way of help for your questions. Lots of good advice in previous posts. I would like to just say hello and welcome our place. I hope you will be able to get some answers for your symptoms and more importantly find some sort of relief. Best wishes.

M.

[monkeylady]

I've had my right ovary removed in 1980 and I have thought at times that it may be the adhesions from the surgery, however, I went to a GYN doctor at Mayo Clinic and all he said is that it could very well be adhesions, however, if they removed them surgically, they would more than likely grow back again so I wouldn't be ahead-ugh! I would think there would be something they could give you to prevent these adhesions from growing back????

Carol Ann,

So sorry you are dealing with all this. You mentioned adhesions. I had to have a hysterectomy years ago, and did develop adhesions. Mine were taken care of through the scope, which was a very minor procedure, and I've never had problems with them since. You very well may want to get another opinion as was previously mentioned. Best of luck to you with this!

[cornelia]

I wonder if this is a side effect of Mirapex or actually of a DA; I had stabbing pains when on Requip and I think others had them too. Now that I am not on a DA, the stabbing pains have gone.
Could also be, like Ann already mentioned, a kind of neuropathy, but it is strange that movement helps. Do these pains get worse at night?

Hope you will find out soon.
Corrie

[carolsond]

Hi all!

Thanks a million for ALL of your very supportive E-mails regarding my RLS? concerns.

I can't really understand why a Mayo Clinic OB/GYN doctor wouldn't recommend a scope for dissolving my adhesions. I intend t get another opinion from another OB/GYN doctor. I just don't want to have to keep putting up with this horrible stabbling-like intermittent pain. I've had this pain BEFORE I started taking the Mirapex so it couldn't be that. The pain does go away when I get up and walk around just like RLS and it DOES definitely get worse in the evening. I do get it from time to time during the day-not too often, however. It just mystfies me.

I heard that an contract MRI could be fatal because of the dye. I got hives when a dye was injected into my arm for a retna exam.

Carol Ann

[becat]

Hi Carol,

Funny or not, I have the saem reaction to the dye they used on me, Iodine I think. However, in the last one I had they had an alternative to the old standard stuff, so it's still might be possible.

So Sorry I did not read through your post well enough, , caulk that one up to withdrawl, my brains is still fogging. As alaways, LOL.

Yup scope is the way most docs take care of the scar tissue.
There is a real disorder that is called something like Chronic pelvic pain and the docs I went to last year all thought that was my problem. Again, it was not, but I know others that have had procedures, hmmm, down there and left with the chronic pain.

I did have stabbing pains, but that lessoned and is gone now that everything is out. I'd be 100% if I had not been kicked 3 wks after surgery, uuufffaaaaa.

Corrie, I had no idea that you had that reaction to Mirapex, wow. Glad your off of it now, and honestly hope your doing better this year. It's nice to see your name around here my dear!

Lynne

[jan3213]

I'm allergic to the dye they use in all the MRI's, CT scans, etc. They have to add something so I don't break out in hives. I think it's called IVP dye. I did break out one time and looked like a huge strawberry. They gave me Benadryl (this was probably 20 years ago, or longer). Now, of course, the Benadryl would be horrible, but I could take it then.

Good luck finding out what's wrong with you. Gosh! It sounds horrible. Take it from someone who went through over two years of tests and people not believing something was wrong before they found a major problem--hang in there. Hopefully, it won't be long before you find an answer!

Jan

[mackjergens]

Below is a link you can click on that will lead you to pages of web sites about abdomen pain.
I did notice a link for Mayo Clinic. Hope you can find some answers to your problem.

I agree with most, it does not sound like RLS to me. But then I am not a Dr.

http://search.yahoo.com/search?ei=utf-8 ... omen&type=

[carolsond]

Hi!

Thanks much for your very supportive advice and suggestions-much much appreciated-also the website for lower abdomen pain which was informative. You are all GREAT and I'm totally thankful to be able to take part in this RLS website-a real blessing.

I have E-mailed the Mayo Clinic Pain Clinic and told them about my pain and they're going to get back to me in a couple of days. I'll keep allof you posted.

Take care and don't let your RLS get the best of you.

Carol Ann

[tazzer]

i have the same pain and it turns out i have developed polycystic overarian syndrome. you may want to ask for an ultrasound where you are having the pain. hope you get some relief.

dee

[carolsond]

Hi Dee,

Thanks for your advice about getting an ultrasound in the area where my pain is most prevalent.

Last night about 9:30 P.M. or so the pain again plagued me. This time it radiated down to my knees and up into my left arm. I get up and walk around as the other RLSers do, and that relieves the pain so I really think it may be a very rare form of RLS along with peripheral neuropathy. It's miserable whatever it is. The pain is unbearable. I took 2 X-strength Tylenol last night and they didn't even touch the pain. This morning after my breakfast the pain also was present which isn't usually the case. I hope that I hear from Mayo Pain Dept. ASAP re: my RLS???

Take care!

Sincerely,

Carol Ann