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Painful RLS

Posted: Sat Jun 07, 2008 11:08 pm
by pamhb
I have a friend who thinks her husband may have the painful form of RLS, and was asking me about it. I have the conventional form of RLS, so I'm not much help to her. What are the symptoms for the painful form? Any association with diabetic medication? What do you take for treatment?

Posted: Sun Jun 08, 2008 1:39 am
by Aiken
If I infer correctly that her husband has diabetes, the first thing to check would be (painful) peripheral neuropathy. It's certainly possible for him to have RLS instead, or as well, but given the diabetes, peripheral neuropathy is more likely, and probably easier to diagnose with certainty.

Me, I'd check both, because I wouldn't want to diagnose one and miss the other, if I had both.

Posted: Sun Jun 08, 2008 1:45 am
by ctravel12
Hi Pam and nice to see you posting again. I have the painful rls and they only way that I can describe mine is that it aches from the bottom of my feet up to my thighs. It feels like someone is pulling my legs as hard as they can. I am not sure if this makes any sense but it is miserable. Would not wish it on my worse enemy.

I take mirapex and clonazapem and it does help but do have bouts with rls now and then.

Just the other night right after I took my meds, my left leg started and it lasted for approx. 3 hrs. I move it back and forth and by time I get up and walk around it still aches so bad that I want to scream or cry. Once the meds kick in it is fine but cannot sit long nor lay down until it stops.

I am not a diabetic but know other members here have rls and also diabetic and am sure they will give their input.

I sure hope that your friend's husband is able to get some relief and please ask him to join us on the discussion board as he will great support.

Posted: Sun Jun 08, 2008 3:31 am
by SquirmingSusan
I have painful RLS, but for me it really isn't different from the regular old RLS. The sensations in my legs can range from creepy-crawly to feeling like each muscle fiber is in the process of being ripped off the bone. There have been times when I've taken meds because of the pain, and the med wasn't quite strong enough, and the pain morphed into creepy-crawlies.

I'm not sure which is worse. With the pain, the urge to move is a bit less, but movement still helps the symptoms. The creepy-crawlies, OTOH, launch me into motion.

I actually prefer to have neither. :(

Posted: Sun Jun 08, 2008 3:59 am
by Scarlett46
I don't know if my RLS is painful... meaning, I don't know if my leg aches are considered to be part of RLS, or if they are just leg aches that are unrelated. In any case... When I get the leg aches, I usually take ibuprofen, which I should know by now is useless... All I can do is curl them up underneath myself, shove my face in a pillow and hope for sleep!

Posted: Sun Jun 08, 2008 5:56 am
by jan3213
I have Type II diabetes, which was diagnosed just a year ago and I've had RLS forever. I also have painful RLS and, because I've had that for a long time (the achy muscles in my legs and arms along with the creepy crawlies) I know it's RLS.

My RLS isn't always the same degree of pain. In my case, I can't say that one is worse than the other---RLS with or without pain. They both drive me nuts and, as Susan said, I would prefer to have neither one.



Posted: Sun Jun 08, 2008 7:25 am
by mackjergens
I have had the regular RLS for most of my life with NO pain.. became diabetic a year or so ago, and lately my legs have become very painful. So much so that my pain meds for rls do NOT help.

This afternoon the legs started hurting and I decided to check my blood sugar, and it was up to around 160. So now I know that when the legs become painful it due to blood sugar, not the rls. (for me)

I had sort of cheated quite alot earlier today, eating muffins (knew better) so I took extra half pill of metformin(diabetes med) and when the blood sugar came down the pain went away.
So for those of you who are diabetic, make sure when the pain kicks in its not due to high blood sugar.

I was really becoming alarmed as this had been happening alot in the recent days, I had become lax in testing my blood sugar, which of course is something a diabetic should never do. But my blood sugar med was working so well I thought I had it made.. hmmm well found out different and will be much more controled in blood testing daily.. And will stop cheating so much! GEEzzzzzzz the things we have to give up in life to stay healthy!!

Yesterday I had very painful legs and CREEPY CRAWLIES in legs, thought I would go nuts.. took pain pill and a hot bath, and that got the creepies under control, but not the pain.

All of us who deal with diabetes, need to be really careful as this disease can really cause so much damage to our bodies/eyes/and EVERYTHING. At least with RLS as awful as it is, its not doing damage as diabetes does.

If its not one thing its another with me lately, but I think I am the culpit for many of my problems, I just need to get control of myself again and soon!!!

For those of you who are NOT diabetic.. PLEASE keep a check on your blood sugar anyway.. I walked around with a 500 blood sugar before finding I was diabetic probably for months!! That was a very dangerous thing to have happen. Since, I have learned that many people will have diabetes for a long time and not know it. And that is when the damage to your body is done. So keep a check it only takes a minute to check your blood sugar.

Another disease I have been hearing alot about that causes painful legs is PAD. Type that into web search and read info to see if this could possibly be a problem, I heard on national news the other night, its one disease that goes undiagnoised very often.
Yes many have painful RLS, but just be sure its not another disease before accepting it as RLS. Others can cause so many other health problems, we just need to make sure what is causing the pain for sure.

Posted: Sun Jun 08, 2008 9:32 am
by jan3213
Mack, your reply was very good and very true. There could definitely be other reasons for the pain besides RLS. Fortunately, my blood sugar has never been as high as yours. The highest mine has been (as far as I know) is in the 130's.

As Mack said, there could be other causes for those painful legs and it's important that you check out everything so noting is missed.


Posted: Sun Jun 08, 2008 11:39 am
by cornelia
Talking about painful RLS, I immediately thought of Becat, I think she was the first one on this board to mention it.

Becat: is everything OK? I miss you here.


Posted: Sun Jun 08, 2008 7:21 pm
by pamhb
Aiken wrote:If I infer correctly that her husband has diabetes, the first thing to check would be (painful) peripheral neuropathy. It's certainly possible for him to have RLS instead, or as well, but given the diabetes, peripheral neuropathy is more likely, and probably easier to diagnose with certainty.

Me, I'd check both, because I wouldn't want to diagnose one and miss the other, if I had both.

She as well had thought of peripheral neuropathy -- it was his GP that suggested RLS, and my friend was skeptical because she she knew that mine was creepy crawly symptoms without pain.

There's not much info on the painful RLS, so I thought I would check it out for her. I was much encouraged that his doc even thought to suggest RLS!

Posted: Sun Jun 08, 2008 7:27 pm
by pamhb
ctravel wrote:Hi Pam and nice to see you posting again.

Have been up to this and that, including some travel. I've been having some issues around my hip flexor muscles stiffening up, which triggers RLS in the legs that I can't medicate away. So I've been working away at yoga, but find I have to be very careful about how much I do and when. Too much walking is also a trigger, so holidays can be challenging!

I've been experimenting with melatonin for other sleep issues, but had a couple of bad nights. Can't decide if it was the melatonin or too much walking. Shall need to wait for a long weekend to try again :wink:

Posted: Sun Jun 29, 2008 6:29 pm
by James333
If you look at Dr B’s book on page 29 the third paragraph states “ What complicates The diagnosis of RLS is that a significant minority of people with RLS may have an associated Peripheral neuropathy” My RLS is definitely very painful sometimes and I would not wish it on anyone. One of my neurologists says I have neuropathy and RLS as well. My prolonged strong leg pain only comes at night randomly sometimes between 8 or 9PM till 3 or 4 and sometimes all night long. Its just like a clock.

I am a diabetic but have had RLS since the age of about nine. The last two year my RLS has been devastating and I have declared war on it and have had some success thanks To support from friends, family, my RLS support network, and my neurologists who have different opinions on my legs. RLS can been intoxicatingly painful and drive one mad. I was thinking about posting a topic saying “[b]Declare war Fight for your life beat RLS pain