RLS might be another condition for IC'ers

[jrowley]

I was diagnosed with IC in Oct. of 2004. I have basically had arthritis in my hands since I was 18. I started getting headaches when I was about 13 and they have been with me forever. The doctors tried elavil for two years but I never noticed anything except for feeling like a zombie. As growing up I wet the bed till the third grade and experienced several bouts of infections. Docs said kidney infections, but I am wondering now if it was more of Uti's, since my growning up years were through the 70's. I also don't remember a time when I didn't pee all the time, to me I was normal going to the bathroom several times in the day and night. I also had horrible problems with my legs. Everyday that I went out to play with the siblings I would later have to have heat put to the calfs of my legs as they hurt so bad. Doc's said growing pains. This was a issue with me throughtout my life, if I worked on my feet the evenings would be horrible pain. Later in life if I was really really tired I would spend the evening with leg jerks that kept me from sleeping. These were off and on. Now to the point, Jan 2005 I had to go for a sleep test because the symptoms of my leg jerking started to be a daily thing and I was waking up extremly tired. Well Feb 2005 I was diagnosed with severe Restless Leg Syndrome. I jerk my legs every 6mins through the night which keeps my brain awake and then is cause for the extreme fatigue. The symptoms of my RLS is fatigue and waking up feeling like I got hit by a truck and never feeling like I slept, achy legs both through the day and upon waking, numbness when sitting for long periods of time (like riding in a car, sitting at my desk, ect...), always feeling like I need to move my legs to a more comfortable postion and jerking constantly during sleep. So the doc put me on a med called mirapex, this is the same meds that they give to ppl with parkinson's disease.

So the moral of my story is if any of you are feeling this way and your hubby's / bf's are complaining about you jerking all night then I want to suggest that you tell your doc about your symptoms and have a sleep test. Because if you have RLS then all of you that take elavil, it will make the RLS worse. Rls could possibly be the cause of your pain during the day and your fatigue rather than other conditions like Fibro. The difference between a diagnosies of fibro and rls is there is real test to diagnose rls and fibro is a guess of all our doctors. Oh and another thing some of the causes of rls can be such things like low iron, Kidney failure quite often leads to RLS. Other chronic diseases such as diabetes, rheumatoid arthritis, and peripheral neuropathy can be the cause. Or it is a herditary issue.

Anyway just thought I would give a little tid bit about my experiences. But in my case the use of elavil or any other antidepressant is out of question for me since I can't take them with mirapex :bonk: . And now my thoughts about IC has become different as research of rls has shown production of a brain chemical called dopamine is low in rls patients, it makes me wonder if IC may be more of a issue with brain chemicals also. :hmm: Ok I guess I have rattled on long enough just thought I would give you more words for thought.

[Katrina]

I wouldn't be surprised if a lot more people have RLS than know that they do. Still, we have talked about it on the board before and there are not a lot of us that have it. I grew up similar to you....and I have it....but so does everyone on my father's side of my family (practically). http://my.webmd.com/content/article/8/1680_51888.htm
I have talked to many with fibro and would say that although RLS makes you fatigued as in Fibro....pain in fibro is different than the pain of RLS. RLS also may cause the discomfort of wanting to move both during the day or at night is most common during one or the other. (unfortunatly I am both) My Neorologist know I have it because of a test performed on me that recorded me during my sleep. So if it were common is ICers it should not be hard to find out. http://www.rls.org/ Since it has a high frequency in families it is unlike most of the diseases that are common with IC.

[jaime15]

Is it every now and then jerks or all the time?
I seem to 'jerk' myself awake from time to time. I assume my extreme fatigue is a hubby who snores and a toddler calling for me at certain times.
I'm sure there are alot of things that go undiagnosed in us. I, for one, dread the day I have to take another pill............. :rolleyes: ..........but I'm sure it will happen.
Rowley-I'm glad you have your rls under control. Now if we could just have a miracle drug for this IC........

[jrowley]

No Jamie I jerk every 6mins through the night and yes quite often I will jerk myself awake at night. So yes some of your fatigue may be from your family a lot of it is probably from you not sleeping well at night either.

[lilylane]

I have IC and I also have RLS. My RLS comes and goes, but definitly gets worse under anxiety.

[jrowley]

Well I done a whole bunch more of reasearch and it turns out that fibro can be a cause of rls or vice versa. Seems they run hand in hand with one another. So now I want to stress even more for you to have it checked because if you do have fibro and your taking elavil that is one of the main pills that will cause the rls to be worse. And because so many are in so much pain they may not realize that some of the pain is caused from the rls.

[Dianne]

I'm quite sure I have RLS now. Looking back I can remember kicking and waking myself up once in awhile. I don't have it every day but way worse the last few months. Eating anything with sugar really gets them going. Increased on my back. Tends to go away on my side. I take 300mg. of neurontin at bedtime for IC and after that kicks in, my legs stop twitching. It's this weird sensation kind of a combination between an itch and a drawing sensation. If I move my legs or scratch them, it stops briefly. If I try mind over matter and don't move or scratch, my legs kick out involuntarily and that relieves it briefly. I don't think a sleep test would diagnose me since I can't lie down without neurontin and neurontin seems to put them to sleep. This is intersting though. I've been wondering about this. I thought maybe it was a side effect from the neurontin or like a withdrawal symptom that comes at bedtime and then leaves after I take my nightly dose. I was just going to try elavil for IC. Is it a fact that elavil increases RLS or just jrowley's experience, anyone know?

[jrowley]

Dianne this is from the california support group. And I have not taken elavil because it can cause my rls to be worse plus it is not recommended to take anti deppressants with the drug they gave me for my rls as it will make the side affects worse of the mirapex. Plus from my experience of taking elavil for two years back in the early 80's I wouldn't take it again even if I could. But that is to each their own. I always go to webmd and check every drug the docs give me especially for interaction between other drugs. I want to live my life pain free not as a zombie or medicated all the time. But that is me. Other ppl it is different. Anyway there is what the support page gives you and you can find much more good information on the two links I have provided in my signiture.

3) Antidepressant Medication
This class of medications should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants are often prescribed for RLS patients. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately.

There are several different classes of antidepressant medication. If a medication in one class causes problems, then a medication from another class may be of more benefit. As with most RLS medications, much trial and error must take place to see if these medications are helping. Due to the long list of antidepressant medications, we will only list them in their appropriate categories.

There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, tend to worsen RLS more than they help. The SSRI's will worsen RLS more often than helping but they seem better tolerated than the tricyclics. There is only one antidepressant drug, Wellbutrin, which has dopamine like effects, so it may benefit RLS. This however, has not been looked at systematically yet although there are some case reports of Wellbutrin helping RLS. Trazadone may not help RLS but it does not seem to worsen the condition.


Tricyclics & Combinations
Ascendin (Amoxepine)
Elavil (Amitriptyline)
Etrafon (Perphenazine and Amitriptyline)
Limbitrol (Chlordiazepoxide and Amitriptyline)
Norpramin (Desipramine)
Pamelor (Nortriptyline)
Sinequan (Doxepin)
Surmontil (Trimipramine)
Tofranil (Imipramine)
Triavil (Perphenazine and Amitriptyline)
Vivactil (Protriptyline)


MAO (Monoamine Oxidase) Inhibitors
Nardil (Pheneizine)
Parnate (Tranylcypromine)


Serotonin Reuptake Inhibitors (SSRI's)
Paxil (Paroxetine)
Prozac (Fluoxetine)
Zoloft (Sertraline)
Celexa (Citalopram)
Lexapro (Escitalopram)

Serotonin and Norepinephrine Reuptake Inhibitors (SSRI's)
Effexor (Venlafaxine)
Cymbalta (Duloxetine)

Tetracyclics
Ludiomil (Maprotiline)


Miscellaneous Antidepressant Medications
Desyrel (Trazadone)
Wellbutrin/Zyban (Bupropion)


Obsessive Compulsive Disorder Medications
Luvox (Flovoxamine Maleate) - This is serotonin uptake inhibitor which is chemically different than the antidepressants above.
Anafranil (Clomipramine) - This is in the class of tricyclic antidepressants.

Noradrenergic and Serotonergic
Remeron (Mirtazapine) - This is the newest class of antidepressants. It enhances both the noradrenalin and serotonin systems. Remeron seems to have less side effects than the serotonin uptake inhibitors and the tricyclics, and it even seems to promote sleep. There are 2 case reports of Remeron causing worsening of RLS, so it should be used with caution in RLS patients

[Dianne]

Hey thanks for such an informative post.