weird sensation in legs = RLS???

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 7/30/2008 8:32 AM (GMT -7)   
Do any of you suffer from RLS? Is so, what do you do to help prevent (i.e. exercise, meds, etc) and does it help?

This is something I have been having problems with for a while and keep forgetting to mention it to my rheumy. Sometimes I think it's because I don't want to be told there is something else wrong with me and my body! It's getting to the point I am sleeping 11 hours a day ( I am on vacation this week ) and the leg pain is getting unbearable.

I hope everyone is having a great week!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2008 10:47 AM (GMT -7)   
I have RLS and have all my life. It didn't bother me when I was young but has bothered both of my husbands. My first husband used to say "stop wiggling!" My current dear hubby says, "Patty, can you stop moving your legs sweetie." Guess which is the best husband. Right. Hubby #2.

But to your question, yes it does interfere with restful sleep. I had my first sleep study a few years ago and was told that I move my legs 2 million times an hour (I really don't remember how many, but it was a lot). He prescribed Neurontin and since then I've gotten restful sleep and am no longer sleepy during the day. The leg pain is less during the day and much much better at night. I have never had the leg pain that some people have. I know one man who has excruciating pain but his RLS is much worse than mine.

If you have great insurance, I'd highly recommend a sleep study. I've had two and both times I was allowed to take a sleeping pill so I slept like a baby. It was no big deal and I got a lot of information from them. I was not getting any good rem sleep before I started taking Neurontin. If your insurance won't pay for a sleep study (and they are real expensive), maybe your PCP can help you.

I'm sorry you're going through this Stacie, and I know what you mean about not wanting something else to have to deal with. The good news is that there's something you can take that will help you get better sleep which will help you feel better during the day. Let me know what you find out. Good luck!

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2008 12:43 PM (GMT -7)   
Stacie--
I have had RLS for years now and hopefully they will figure out what really causes it someday. I take klonopin at night for it, mainly due to the fact I can't tolerate other meds due to my bad liver. Anyway, it can get very bad. Mine feels like something crawling inside my legs that almost itches and it is so bad it can make you think of getting rid of your legs. I gained a new appreciation of what some mentally ill patients must go through that self-mutilate, since the sensation is so maddening and nothing seems to help. Getting up and walking takes my mind off it, but medicine is necessary. I had a very bad attack of it when I went off the pain patch, which I had become dependent on, but it subsided in three days, so some things apparently trigger it. Lack of sleep is another.

I have had some relief when I had no insurance by putting bengay on my legs and lumbar spine, mostly because the sensation of the burning bengay took my mind off the RLS. I don't know if there are vitamin or herbal cures, but that might be something to check in to. I also sleep with my legs up on pillows so that my lumbar is straight, and flat on my back.

I hope you get relief. My mom has neuropathy and neurontin and lyrica have helped her some. There is a new med just for RLS that is supposed to be good. I just can't take it.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 7/30/2008 7:02 PM (GMT -7)   
Stacie,
   (((Hugs))), RLS is awful before getting the right treatment for it. I had it for many years before finding out what it was. It drove me nuts at night trying to sleep.
   I took Klonopin for 10 years and it worked well, then stopped working. Now I take Mirapex and it works well. There are several different types of meds for RLS. I hope you get some relief very soon.
   Let us know what the doc says and take care. You are in my thoughts and prayers.
                                                    Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/30/2008 7:39 PM (GMT -7)   
Hi Pat, Marji & Babs - thank you for sharing your story with me. I am not sure if this is RLS or not, all I know is I have this weird feeling in my legs (I will try to pay more attention tonight to see if I can describe it better). Sometimes I feel like I have to stretch my legs and other times it's a tingling pain. I constantly toss and turn all night and I sleep with a pillow between my legs.

Is there anything else that would cause this kind of pain / uncomfortable feeling? I don't see my rheumy until October, I wonder if I should see my PCP? The fatigue is getting pretty bad, I don't know if it's a lupus flare or this thing with my legs interrupting my sleep.

Thank you for listening to my whine. (((( hugs )))))
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2008 7:58 PM (GMT -7)   
I've never talked to my rheumy about it since I don't think it's autoimmune. I'd consult with my PCP if I were you. The weird uncomfortable feeling could be RLS. Do your feet also get a tingling pain?
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/30/2008 8:01 PM (GMT -7)   
Pat, yes I get the tingling pain in my feet too, especially when I cross my legs at any time during the day.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/31/2008 9:47 AM (GMT -7)   
Stacie,
   I agree with Pat about seeing the PCP. The mirapex controls my symptoms now but before taking it I would have to stretch my legs alot during the night and I had the creepy crawly/tingling feeling all night. I would have to get up several times and walk around and rub my legs. It's an awful feeling. I hope you see the doctor soon and get some relief.
   Keep us updated and take care. You are in my thoughts and prayers.
                                                   Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/31/2008 10:20 AM (GMT -7)   
You might look into peripheral neuropathy also.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/31/2008 5:26 PM (GMT -7)   
Thank you Babs & Pat. How do you tell the difference between RLS & peripheral neuropathy. If it continues to be bothersome I will see my PCP if not I will mention to my rheumy in October.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/4/2008 4:47 PM (GMT -7)   
Stacie--
The creepy crawly sort of uncomfortable feeling that prompts you to have to stretch your legs sounds like classic restless leg. My mom has neuropathy due to breaking her back in three places and her neuropathy feels like her feet are on fire all the time. She has numbness in her legs at times too and a foot drop problem.

The classic restless leg is that making you toss and turn feeling, having to walk or stretch your legs all night. It can be awful. When I was on interferon, I had that feeling throughout my entire body and my rheumie intimated it may have been a very severe flare type feeling (since alpha interferon is the chemical that boosts your immune system in lupus and I was on it also having autoimmunity, which made me very sick), so maybe there is an autoimmune part to restless leg.

I've read that the tingling when you cross your legs or rest your elbow on a table is due to constriction of nerves and is pretty normal, though it has seemed to become more frequent in me as I age. It has to due with nerve compression that you create putting your limb in that position.

I have both restless leg and neuropathy, my dad also has restless leg that seems to get worse when his diabetes is not as well managed. Klonopin works well for my restless leg and also makes my pain meds work better for other problems, but some of the other meds like lyrica, neurontin, and the new meds for restless leg work on neuropathy as well.

I would talk to the docs and get some relief. Its a terrible feeling and worth treating. I think I had it as a child as well and I think my son may have it. Hope you get some treatment soon.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/5/2008 6:01 PM (GMT -7)   
Thank you Marji, the pain hasn't been too bad the past couple of nights but I have it on my list to take to the rheumy in Oct. I continue to have the tingling feeling when I cross my legs that never goes away. I really don't want to take another med but if it works it will be worth it.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/7/2008 1:59 PM (GMT -7)   
When I take muscle relaxers my back actually can go out of alignment since the muscles aren't there to support it, so I can only take them when I have bad spasms. Sometimes I get more nerve problems. Might be meds also, you might want to check the drug inserts or with pharmacist or online. Many common drugs are anticholinergic, which means they inhibit acetylcholine, which affects nerve function. I prefer acetylcholine enhancing drugs vs. inhibitors, the others cause more problems for me. I don't know why, but it may be the autoimmune thing, or simply that so many drugs are anticholinergic that my body can't stand another one. Here's a link about the compound in flexeril, which is anticholinergic:
http://en.wikipedia.org/wiki/cyclobenzaprine

The technical medicine inserts will tell you if they inhibit acetylcholine or not.

As for the crossing the legs thing, over the years, that time my legs stay tingly has gotten longer and more severe over the years and I just chalk it up to age (my "wires" not being so good as they used to) or back or meds, though the endo says it could be endo related--diabetes/thyroid.

Hope this helps and that you feel better.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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