An old issue, but very much still an issue

I'm new here.

I have restless pain in the belly, sometimes extending to my legs and mainly at night.

It seems to go into remission periodically generally when I start a new sleeping tablet and am able to sleep through it. Other wise it keeps me up every night, always starting one hour after I go to bed.

I also have severe depression, hence the "knock out drops". However I've tried ALL of these until they are no longer effective.

The doctor is muttering about something for Parkinsons but I take Parnate and a lot of drugs are not compatible with this. I also take Lamotrigine as a mood stabilizer.

Is this RLS? Any suggestions for my dilemma?

I'm disparate for sleep....

Cheena11

11 Replies

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  • Hi Cheena, have you been diagnosed with RLS..? Do you have all the criteria for RLS..? The important one is having the urge to move your legs. Its a feeling of i have to move my legs cause i cant resist the feeling.

    I had to go and look up your other meds the Parnate is a anti-depressant and anti-depressants can make RLS worse. People do take the Parkinson's meds along side a anti-depressant. BUT not sure it would help if the anti-depressant is making things worse for you. You would have to discuss all this with your doctor.

  • Hello Elisse.

    Yes - according to my research, I do have all the criteria, but we are also grasping at straws. Over the years I have had every test imaginable done to try and find a treatment but there is nothing wrong. Isn't RLS more a diagnosis of exclusion rather than something a test result can prove?

    This is a new doctor for me. As with the previous doctors she does not have all the answers and the Parnate just makes everything more difficult. No one is 100% sure of the Parnate as it is hardly ever used these days.

    I have been on Parnate since 2002. It is the only antidepressant that has worked for me. Prior to this I tried most of the main stream antidepressants. I have had depression since my twenties and my restless belly a fair while also. I can remember going to the hospital in the middle of the night because the pain was so intense when my children were babies. I'm 54 now.

    Last night was dreadful. I took temaze. I won't be doing that again. It has taken me so, so long to get off all sleeping medication I really don't want to climb on that merry-go-round again.

    I do not work, I'm on a disability pension. If I get some sleep, I'm not too bad, but if I don't I'm just a waste of space. Not a lot of quality in that.

    cheena11

  • One of the main side effects of parnate is "trouble sleeping". There is NO test to say if you have RLS or not. Some doctors when they can find nothing, automatically, and mostly mistakenly, go to Parksinson's. As Elisse said we cannot diagnose you, you have to talk to your doc again.

  • I am posting the criteria for RLS. just so you can look and satisfy yourself that you do have RLS. Only because you have said "sometimes extending to your legs"

    You are right on there is no test for RLS, its diagnosed by you explaining your symptoms to your doctor..

    irlssg.org/diagnostic-crite...

  • Hello Elisse

    I believe I fit the criteria, but as I have said we are at the " grasping at straws stage".

    It is the pain in my belly that wakes me up, but after that it is a free for all below my waist. I have thought of positional vertigo but do not believe that to be appropriate for my symptoms. It was/is my understanding that RLS is not necessarily confined to the legs?

    One doctor suggested fibro myalgia but as I did not respond to the appropriate medication that has been ruled out.

    cheena11

  • The "pain in the belly" is a very strange description, as related to RLS

  • Thank you for that link very interesting

  • Hello Elisse

    I have read and re read the criteria for RLS and all the other information I can find on the other web sites. I just don't know!!

    My pain is restless. It is not an ach or a stabbing pain. I have only been able to give it this label in the last month or so but it comes from deep inside, not on the surface.

    As I said my doctor is new to me. I do not believe she know a lot about the RLS but in the absence of an alternative suggests we try the treatment for this condition. I assume that if I get no relief that we are wrong - again.

    Three questions

    Is this an acceptable idea?

    Could Parnate (Tranylcypromine Tablets (An MOI)) make it worse?

    What treatment would you recommend at this point?

    Please answer the first question first...

    Cheena

  • We cannot possible recommend treatment when you have no idea, really, if you have RLS, and no diagnosis. Would be very irresponsible of us, since you keep saying "pain in the belly" have you had ultrasound done on your belly, that is my only suggestion at this point. To suggest anything else would be wrong.

  • Hello Nightdancer

    Stern words, but very true of course. I think sometimes I get so desperate that rational thinking and caution go out the window. I shall attempt to regroup and reconsider my options. I guess it has been going on so long now that I few more days will not make a drastic difference.

    Many thanks

    Cheena

  • I did say that if your have RLS then Parnate a anti-depressant can make things worse. I cant recommend what treatment for you, i am not a doctor, so cant do that You and your doctor need to discuss this and i can only suggest if you do have RLS then your doctor needs to look up what is available to treat it and go from there, to see what will work for you.

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