The Breaking Point with WED/rls

For everything and anything else not covered in the other WED/RLS sections.
Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

The Breaking Point with WED/rls

Postby Betty/WV » Wed Aug 31, 2011 11:31 am

Hi Friends: I won't repeat my experience with WED, I have told it many times. Briefly, Had it for 40 plus years, tried many, many doctors and meds. Now on mirapex, weaning off clonazapam.

Yesterday went to a movie with a friend. Within a short time good ole WED/rls hits. It was such a good movie too. "The Help". I had to go to the side of the theatre and stand, then on the way home (about 30-40 min. ride) it starts again. I was so miserable.

I have been experiencing depression. Recently, a big weight gain, doctor stopped my wellbutrin thinking it was causing the problem. I think it may be the mirapex, but I'm so afraid to try to do without it. The depression is so bad that I'm withdrawing into myself. I don't want to go anywhere. But like yesterday I try to put on a strong face and try to live a normal life. My friend trys to understand and I try to expain but its very difficult. Any one have any suggestions as to how to explain WED/rls. I'm so desperate for my family and friends to understand what I am dealing with. I'm sure they feel I'm exaggerating. I know alot of my health problems, and there are many, are related to WED/rls, lack of sleep and pain are killing me slowly and I have no quality of life.

My doctor is always reluctant to give me an opiate, I'm going to call him today and ask for some. They make you feel like a drug addict. He will usually give me 10 or 15 at a time. And I keep these for the worst of times.

I'm venting again, but if anyone has any good ideas as to how to explain WED/rls to friends and family so that they can get the sense of what we are going through. I don't want sympathy, just understanding.

Thanks for putting up with my venting. This site has helped so much. Before I found it, I had no way to release these feelings.

Thanks again and would appreciate hearing from you.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Postby Polar Bear » Wed Aug 31, 2011 2:32 pm

Betty, please keep coming and venting/venting/venting. If it relieves even a little of your frustration we are happy. We have all vented. And I have also stood at the side of the theatre, I have also stood up at a dining table in a restaurant, fortunately the table was next the wall, but I still made a bit of a feature.

There are several issues, there is dealing with your symptoms, how to explain the condition to people, and accompanying depression.

With regard to explaining the condition I recall seeing a wonderful letter written by a sufferer and have no idea where it was and have been unable to find it.
In the meantime this link goes someways. It pretty much applies to chronic illness. I don't feel it applies very closely to WED but perhaps goes a little way in that the principles are the same.
http://www.butyoudontlooksick.com/artic ... serandino/

Dr B says (I believe) that if someone with RLS/WED has depression, that the depression should be treated, and any extra WED then treated.

Would your Doctor be open to the suggeston of say, 6 month trial. and a good antidepressant to help your mood, an opiate to replace/reduce/supplement your mirapex and control your WED. If your mood was uplifted it might be easier to get a sleep aid that will work, and also face the misery of weight gain and what to do about it.

Just to note that I have been prescribed amitryptiline (an AD) for Fibromyalgia because it would help my pains and my lack of sleep. I fought against taking this drug as it is known to be bad for WED. So far, fingers crossed, no big bad effect. Briefly, I thought it might be causing a slight problem but it passed. My sleep has gone from average of 3 hours per night up to 6 hours per night. My aches and pains are much less.

Good luck - I hope your doc will be cooperative in his offer of help.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

dogeyed
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Postby dogeyed » Wed Aug 31, 2011 4:51 pm

Hi Betty,
Gosh, I'm so sorry you're going thru this terrible depression. I have had some very rough bouts with it, so I've been in that place where you're at. It is a scary thing, falling down a dark hole and thinking you will never get out. And there's no sunshine, no fun, just horrendous endless days of suffering. But I think I can comment on a few things that might help you out.

On the weight gain issue, it is more likely the Mirapex is indeed making you hungry, whereas Wellbutrin is the least weight-gain medicine in its category.

On the depression, I can tell you that weaning off the benzo tranquilizers can be very tough, it can really wreck your day, it does a number on your sense of well-being. Worse yet is getting off Wellbutrin, if you are doing that at the moment. Hopefully just knowing this will help you deal with your symptoms, and from my own personal experience, it can take a couple months to get off those types of medicines, and then another month after that to really feel regular again. So, I think that may be one of the reasons why your frame of mind is ruined.

I'm with you on the opiates, they really do the job very well for most people, but as you said, docs are very stingy with them, even tho the literature points to opiates as being one of several categories of medicines effective in treating RLS. I wish your doc would relent and see the light on this issue. I've heard other people who contact Dr. B about the situation and this might persuade your doc, and there's a paper on this website that talks about treatments you could show him, and there's a government website that I've lost the link to, but it's an NIH.gov type place, with neurology in there somehow, that is one page and lists the categories of medicines.

I want to mention another item. Sometimes benzos can make a person sad, and IF you were on them and then got that way, and THEN they gave you Wellbutrin, COULD be it was the tranqs that made you sad. So, by eliminating both, you should be fairly straight on your depression thing once you get off them. But if you were depressed before all this, while it can certainly be attributed to lifelong RLS and it worsening (pain can cause depression), then looks like Wellbutrin would help you... if it did before.

Hope some of this helps. I really feel for you. GG
"It's not how old you are; it's how awful you feel."

ViewsAskew
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Postby ViewsAskew » Wed Aug 31, 2011 8:26 pm

{{{{{{{{{{{{Betty}}}}}}}}}}}}}
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Wed Aug 31, 2011 9:01 pm

Thanks Dogeye you gave me some things to think about. It gets so confusing when you are in pain and miserable. Sometimes its hard to put 2 and 2 together. Going off the Wellbutrin and weaning off the klonopin could be affecting the way I feel.

Thanks again.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

sleepdancer
Posts: 104
Joined: Wed Dec 08, 2010 8:09 am

Breaking point

Postby sleepdancer » Thu Sep 01, 2011 7:17 am

My heart is touched by your suffering. I remember the years of misery and the toll it took on every aspect of my well being. Hoping you find some relief so that you can enjoy the activities of your days and restorative sleep at night. I'm not against whatever means helps, just personally grateful for discovering the helpfulness of a TENS Unit. May you soon find what works for you. ((Hugs))

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Sep 01, 2011 12:16 pm

Sleepdancer: I have read where TENS units help some people. Where did you get yours??? As you probably read I went off the Wellbutrin, because my one doctor said it was causing me to gain weight. But now I don't think so, I think it is the Mirapex. Also, I am on a low dose of Clonazapm and have been on it for a long time. Now the doctor thinks I should wean off it. Its hard to make these decisions by yourself, when I am not confident the doctors know what they are talking about. The extra weigtht I have put on is going to kill me, it seems to come upon me without me realizing how much I gained. I am old, short and over weight to start with. And have many health problems that more weight is going to make worse.

I emailed Dr. B and gave him a run down of what was going on with me. He emailed back that my case was so complex that I should find a good RLS doctor (lol) and start from scratch. That really made me feel worse.

Thanks for your post. I appreciate everyones help.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Sep 01, 2011 12:19 pm

BTW: I am having such pain in my feet. Especially the left one. Which I think is ,mostly from the extra weight. I now have to be custom fitted for orthotic devices for my shoes to correct flat feet that I don't think I had before. Woe is me!!!!!!!!

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Location: N. Ireland

Postby Polar Bear » Thu Sep 01, 2011 1:28 pm

Betty:
I have an appointment for 15th Sept to see about orthopaedic inserts. No idea why, I was at an appointment with my Rheumatologist who said 'classic fibro', but he didn't think my sore feet were fibro, probably thinks its arthritis, so he also made the referral regarding the inserts. We shall see on the 15th - maybe the appointment is just an assessment to see if they would be of any benefit.

Regarding the tens machine, it doesn't help me with WED but I got it on Amazon. There are different prices, mine was £25 sterling and about 10 different programmes has 4 adhesive patches.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Sep 01, 2011 2:23 pm

Polar Bear: I went yesterday for the impressions to get orthotic devices for my shoes. I to have arthritis everywhere even in my feet, but my feet are also now flat with not much arches is the reason I need the orthotics. And the extra weight I put on, didn't help any. I also called my neuro this morning, fighting back the tears. He called me back and wants to see me at 3:30pm. I can't drive because of falling asleep at the wheel, so my husband will have to take me and he isn't very understanding. (See why Dr. B says my case is complex and I need to start from the beginning) I don't know what he will want to do, I'm afraid because I don't think he knows alot about WED/rls. He is young. I'm going to take my green book with me. I have always been strong and I don't think my husband likes the weaker me.

Wish you good things with your health.

Thanks for your concern.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Sep 01, 2011 2:26 pm

I meant to say to that I think because of the weight gain, and the doctor taking me off the Wellbutrin, I am very depressed and trying to fight that and I don't think I'm winning.

Betty/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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Rubyslipper
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Postby Rubyslipper » Fri Sep 02, 2011 1:12 am

Betty, I truly hope you can get some help with all your health issues and emotional issues. I have been there too, we all have in one form or another. However, knowing you aren't alone doesn't help a lot at this point. Would your husband, friends or family be willing to look at some of the posts from here? If nothing else, look at how many use the discussion board? Surely they couldn't dismiss all these people as "weak". Which you most certainly are NOT. You are a fighter who's been knocked down a few too many times right now. But you won't give up until you get some relief.

I understand the weight issue. It's not just health that's affected but your self-image. We know what needs to be done but it's just so hard to do it. We have come so far in educating the medical profession as well as the public but still have so far to go. Please take care of yourself and know that there are many people here who understand you and want to help.

I have found that some hospitals sell refurbished TENS units--you might check that.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Fri Sep 02, 2011 2:39 am

Thanks everyone for your concern. I called my young neurologist this morning and he wanted to see me. So I went, he doesn't think its the Mirapex that is causing my weight gain. He said I should go back on the Wellbutrin and Klonopin. That my going off these 2 meds. could be causing my depression. Then I am to call him in 2 weeks, if things arent better he is going to try me on the new med for WED/rls, Horizant, starting out with taking both the Horizant and Mirapex. He is very young and I don't know how much he knows about WED/rls. I stayed with him because he seems like he is willing to work with me. He does think I read to much. Evidently about WED/rls. My WED/rls is getting bad , I don't know if it is augmentation, rebound or just a break through. I went to a movie with a friend and ended up standing by the wall for much of it. And went out to dinner w ith a friend and had to end up standing off and on.
I really didnt think my old age would be this bad, I would just like to have a little more quality to my life. Now there seems to be none. I jsut seem to be going through the motions only doing what I can't get out of. I really would just llike to stay in the house.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

badnights
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Postby badnights » Fri Sep 02, 2011 7:59 am

Don't forget that the Mirapex is probablhy causing augmentation, at least as far as non-physicians can tell from your previous descriptions, and if that's the case ytou need to replace it with something else.; Yoiur new neuro who seems willing to work with you wil probably suggest something.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Fri Sep 02, 2011 9:25 am

Yes, when I saw him yesterday he mentioned Horizant, the new med approved for WED/rls. I'm scared of new meds, they put them on the market and tell you how wonderful they are. Then down the road the recall come out that the med is causing some horrible side effe ct.

I wish some of these doctors would come to this site and read some of the posts that I read. I think they could gain a wealth of informations for their practise.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand


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