HELP!!! daytime-nighttime RLS

[wcpainter]

I have a severe chronic case of RLS.The worst of it started about three weeks ago.
I've gotten to where I can't sleep more than a hour and a half or so at a time. Too short for me to really get rested up. What started out as a mild case of restless legs has turned into a
fullgrown tormenting nightmare. My legs are constantly twitching at
a fast pace, like an on and off switch. The urge to move is astonishing.
It hits me during the day and night, and I can't hold still for long before the
urge to move strikes me again. It gets worse at night, the more tired I am,
the worst it gets. It doesn't stop at the legs either. Sometimes my whole body
will get to having uncontrollable urges to move, When I want too
badly go to sleep.or even just lay still and relax, it becomes impossible to hold still.

My energy level is at an all time low.
I am so tired.
My history?....I have crohn's disease and take metronidazole 500mg,
ciprofloxacin HCL 500 mg, mercaptopurine 5o mg. all 2x a day.
I take 1/2 carb/levo 25-100mg broken up during the day.
1 clonazepam 1mg and 1 carb/levo 25-100 mg at nite plus a zolpidem tartrate1 mg.
And yet I cant sleep. Is this too much, too little? All this medicine is relativley new. I basically took requip 0.5 mg, then mirapex 0.125 mg. And I took clonazepam. Now it up to this...New medication for my crohn's and this medication for RLS.
My brother has parkinsons disease as well as RLS, my mom's side of the family has RLS.
I need help. not too sure who to turn too. my doctor has not recommened a neurologist.
And I certainly don't know nuthin 'bout money trees either..
And so the weekend is here and no doctor in sight.
And all through the night,  I suffer in my plight.

I feel so sorry for those who suffer with Restless Leg Syndrome....
It is truly devastating at times. A person can go mad.

[KatEyes]

Hi. Hope things are settling down for you. Yes, RLS can be maddening.

Are all your meds thru the same pharmacy? Maybe your pharmacy could assess your combination of meds and look for any red flags as far as the combinations and any contraindications.

About the carbadopa/levadopa - I took it for a few years. Here's some tips to help optimize its effectiveness. The literature now says protein affects it, but that's not enough info. Both protein and the medication use the same transporters. There are plenty transporters when crossing the barrier from the small intestine into the blood. The transporters are limited though going from the blood into the brain. So you have to be up on the digestive system and any protein you eat needs to not hit the small intestine as the same time as your med. I found eating a small amount of carbs helped the med to not upset my stomach so bad, But eating a full meal before taking the med caused it to take too long to get to the small intestine and much of its usefulness was wasted.

Also, caffeine and an ingredient in cold meds caused a reaction for me if I tried to sleep afterward - very agitated and restless. One more thing, if you also have movements in your sleep, allow the med to get in your system before going to sleep. It does ok preventing movements in sleep but made me feel tormented if it tried to work after they had already started.

Sorry to drop all this on you - I had to learn it all the hard way. Hope things are better. Please do have your ferritin level checked. As I mentioned before, it should be at least 50 or 60.

Take Care.

[Suri123]

Hi wcpainter, thanks for having replied and to give so much updates on your ongoing disorders. I hope you will cope up with the tremendous stress you are going through due to the restless limb and seep deprivation. I do agree, as you have multiple illness and taking too many medication can really worse your IBS. Stress needs to be addressed on priority, as frequent exacerbations are very likely. Do continue the prescribed drugs and follow a healthy sleep cycle and bland diet. Take care and keep updating on your progress.

[wcpainter]

Well I just now am finally starting to feel some what normal again.I have been through so much in a few short weeks...From what I understand just about all of my problems became paramount to each other. I lost a alot of sleep due to RLS which had been getting steadily worse as time went on.I tried Mirapex then tried Requip then resorted to Carbadopa/levadopa, which finally to start to help a little. I ten was having severe stomach and abdominable pains, some blleding and went to a IBS Clinic, which started me on clarithromyc 500 mg, mercaptopurine 50mg, metronidazole 500 mg. A couple of weeks later I was having severe trouble breathing, infection in lungs, felt like I was drowning. Drove to ER and they gave me Albuterol Inhaler and antibiotics, said I had a lot of scar tissue in lungs from radiation and chemo for rad.masectomy on left side of chest. And that IO had acute brochitis. I  was discharged from ER went home for two days then saw my primary doctor,
who in fifteen minutes determined that all seemed fine, gave me celebrex for my bad elbow and sent me on my way. I got into the truck to drive my mother and myself back to my sisters house to visit. I started laughing and laughing and laughing harder and harder. Had to stop driving several times pulled over cause I'd crying or laughing. Finally my mom takes driving over and get us to my sisters house (25 min later) I was still laughing but it was quieting down alittle. We ate some chicken and watch some funny videos of kids laughing or cats talking....next thing I know Im in an ambulance being taken to a hospital because I had a seizure. I remember waking up laughing a few times at something I thought was funny. Everyone was gentle with me and I have to admit I got a lot of weird looks and questions thrown at me. The hospital ran the usual test done on determing  what kind of seizure it was and if It was lifethreatening or not. A Chemcial Strest Test and an MRI of the head. After three days, the hospital gives me a neurologist who is taking my case. I will see him a week from now. He increased by carbadopa/levadopa to 3-4 tables 25/100, gives me 2 keppra dailiy- 250ml. I still have jumpy legs and arms that won't sit still. I have to fidget or go insane. It comes on me after I take my carbidopa as well as before. I also start itching like crazy, nothing but a hairbrush will satisfy my need to be scratched.
So I tak 4 Carbidopa  a day.
I am also taking flax oil, vit. E. folic acid. flourosimide, Zolpiden tartrate, benadryl, cymbalta, and Nexium for my bad heartburn. I was also told that I had degenerating nerves and am taking Oxycodone for that pain and for the chest pain and for the pain in the bone of my left leg, and the spurs in my neck. The epilepsy was shown  in the EEG eruption data.
I was confused most of the time, not really realizing that I was being evaluated and observed at the hospital, and was relieved to be let go.
So after they discharged me from there, I went back to home with my mom. But my stomach ws getting worse than it ever was and my elbow was screaming with pain so very often. So after a few more days I called The IBS Center and they said take prednisone 40 mg, mercaptpurine 50 mg. That being said, I went to ER to have my bad elbo x-rayed, result: tennis elbow...So now the bills will start, I'm still not too sure what happenedd to me. I have short spots in my memory that gone or vague.
Thats about all I know for now, my legs are getting jumpy and can't hold still..P.S. Thanks for being concerned, you  made it easier to go through.

[Suri123]

Hi wcpainter, hope you are doing better by now? Are you able to get some sleep now? Do update on the doctor visit and any advice, as it might be of great help to few of others who also might be looking for some help. Yes, taking too many medicines can have side effects, which can really worsen the present condition. Due to severe stress that you are going through, restless movements can be worse and abrupt exacerbations of crohn's disease can be frustrating. Try to keep yourself cool and keep yourself engaged with fine work and spending more time with family and friends. You need to rework with your attending physician to decrease the medicines you take or dose/frequency. Consult a dietician for working on a diet schedule. Try out few physical therapies. Take care.  

[KatEyes]

Yes, RLS can be tormenting. Magnesium might help. Avoid caffiene. Get a ferritin level drawn - results should be over 50 at least. You might have PLMD too. Usually it's an either/or on some of those those meds. Too much of the dopamine meds can backfire and worsen the problem it's supposed to treat. Were you naming different things you've tried or are you taking the carbadopa/levodopa, Requip, and Mirapex at the same time? It sounded as if you may have taken all that in one night trying to sleep.You may want to with a doctor's instruction wean yourself down on those meds (never stop abruptly). Did a doctor really prescribe all these at once? The side effects of too much of these are to be avoided if possible.

[Suri123]

Hi, hope you are doing better? Are you able to get some sleep now? How active were you physically early? Were you more into sports or games? Stress in form of mental or physical can worsen the symptoms. Is your crohn's disease under control, any exacerbation can be a trigger and worsen your body movements. It would be better for you to control diet by having more fresh vegetables and avoiding non-vegetarian and spicy foods. Some relaxation courses like meditation and yoga can be tried. Too many drugs can also be a triggering factor coupled with stress. You can also try few sessions of physical therapy. Avoid coffee, smoking and alcohol. Keep updating on your follow up visits and doctor advices. Take care.

[scarlet37]

    Being deficient in Vitamin B12 , Calicum and Vitamin D can cause the symptoms you describe.  Have your doctors checked your levels?

  Keep posting with your progress and/or questions-


Best Wishes~

[Suri123]

Hi wcpainter, how are you keeping? When did it start? Have you consulted a neurologist and had tried treatment. This is a neurological disorder, which has a compulsion to move the limbs usually associated with burning or tingling, physical movement gives some relief of discomfort. One may continuously keep moving limb or do massage to get partial relief with activity. Symptoms might worsen even at rest and more so while sleeping. There can be family history and can be associated with other problems like rheumatoid arthritis, anemia, hypothyroidism, peripheral neuropathy and Parkinson's disease. One needs to treat first the underlying cause or disease first. Lifestyle changes are important like avoidance of alcohol, caffeine, and medications may help controlling symptoms. If not on active treatment, you need to consult a neurologist for an evaluation. Take care.