At the end of ALL of It

tootyred · Post by **tootyred** » Mon Sep 17, 2007 10:24 pm

I am so scared right now, I am 44, I have severe RLS mostly at night, but days as well. I have been thru Mirapex,Requip,Neurontin and Sinimet all eventually, either augmented or did not work. about 2 days ago my leg started contracting and spasming every few minutes, I was In agony till 7 am when I finally gave in and went to the ER I had tried as many pills as I dared!! they gave me a muscle relaxant...no go..gave me Toradol (sp) nothing....
Finally they gave me a 7.5 Lortab which gave me enough relief to at least get some sleep, all this time I had been trying to reach the doc on call at my neuros' when he finally called back the evening of the day after,(after 4 calls) my husband angrily told him what had happened my Neuro called today and all he did was chastise me for having bothered the on call physician, I feel so stupid and childish, but I am In Agony!! I cannot live my life during the day when nights are like this??!! should I just give up and stop trying? I am willing to go anywhere where I will get some help for this however In Buffalo NY and with my Insurance I feel like suicide is the only way out. I am ready to break down and go to a crazy house!! PLEASE tell me where to turn I want my life back, and I don't want suicide to be all I think about :cry:

I know there are ohers going thru this, and bless you all!

chefws · Post by **chefws** » Mon Sep 17, 2007 10:41 pm

Suicide is not an option, sorry.

Look at the stickies. The New to RLS has a lot of information about different topics, including lifestyle changes to help.
The Mayo Clinic Algorithm is extremely helpful. Here is a link: http://www.mayoclinicproceedings.com/pd ... thm%20RLS'
I too have what you describe, and it also just started 2 days ago. As of right now, I have no help, but I am having a battery of tests done soon. I would suggest warm to hot baths, a good Shiatsu massager could help also.
I have you in my prayers.

tashton · Post by **tashton** » Mon Sep 17, 2007 11:29 pm

It sounds like lortab may be your answer. Finding a doc who will prescribe opioids is the problem. I finally had to go to a pain clinic because they were the only doctors who felt comfortable in prescribing what I needed. Even though I have insurance the pain clinic isn't covered so I private pay. Aggravating but worth it. I had been through the list of medications including the dopamine agonsts, neurontin, tramadol with no relief until I started on Lortab. I have been on it for about 1 1/2 years with no increase of dosage. There is help somewhere out there for you. Do you have pain as part of your RLS? That is why the pain clinic was willing to help me. I would call it painful even if it is the creepy crawlies. Pain manifests itself in many ways.

Don't give up. You are not alone.

Sojourner · Post by **Sojourner** » Tue Sep 18, 2007 3:41 am

Totyred, Don't think I saw Ultram mentioned in your post. If you have not tried this it may be worth considering as some members have had varying degress of success with this med. It is a pain reliever but non-narcotic. You may be able to get your current doc to prescribe this to see if it helps. If so, in the interim, you could begin searching for a doc willing to look at the opioids as an option. Also, as mentioned, the Algorithm is a good thing to review and/or take with you to your doc.

I am sincerely sorry that you are in such a bad place right now. Please lean on whoever you need to for a bit until you get through this. And, you will get through this.

SquirmingSusan · Post by **SquirmingSusan** » Tue Sep 18, 2007 8:49 am

Tootyred, so sorry you are having so much difficulty getting relief from your legitimate medical condition. Your neuro was completely out of line for saying that you were "bothering the on call doctor." Shame on him!!

Unfortunately, opioid pain medicines seem to be the only thing that works for many of us. Mark mentioned tramadol, which is a psuedo-opioid pain medicine, and that works for some, but not all. Doctors are much more willing to prescribe that, however, because the DEA isn't breathing down their necks and they aren't risking being prosecuted and thrown in jail for prescribing narcotic painkillers. Sigh. Tramadol is certainly worth a try. Unfortunately it didn't work for me, but it does work for many.

I so remember being in a similar state as you are now. I was suicidal for a couple months; even went to the ER and tried to get antidepressants, because my doctors, get this, wouldn't prescribe antidepressants. :shock:

The ER didn't have time for me, so I went home and ordered antidepressants online.

It took me a couple months to get into a pain clinic, and the first month they couldn't, by law, prescribe narcotic pain meds. Fortunately, I had Vicodin left from various surgeries, knew that it worked, and had a sleep cinic doctor prescribe some for me. That helped get me through until I could get into the pain clinic.

Hang in there! It really can get better. I am in no way completely cured of this malady, (I'm up at 3:44am typing this) but I do feel much, much better. I've had thyroid issues as well for about the last year, and that makes it all more confusing, but someday we'll even get those sorted out. And even with symptom control of the RLS, it is still hard to get the sleep schedule back to "normal" as defined by society and the other members of my family. But I'll find a way, and so will you. Really. Keep fighting for appropriate medical care. Make your doctors READ the Mayo Clinic Algorithm, and find a doctor who is willing to treat you, no matter what it takes.

Life can be worth living again.

KBear · Post by **KBear** » Tue Sep 18, 2007 5:32 pm

Do not despair many of us have been in the spot you are in now, it can and will get better you are just in a bad phase right now. Hot baths or hot water bottles may help, try adding some epsom salts. If that doesn't do it try icing your legs. I keep a frozen water bottle (drinking water) in the freezer to use when the RLS gets bad. Frozen bags of veggies work good too but do't eat them after you've used them to ice your legs :wink:

I mark mine with tape and the words "ICE PACK" to keep them from getting eaten. Peas are my favorite ice pack :wink:

I would also recommend taking a good hard look at your diet and any other medications you are taking. You should try to eliminate sugar, artificial sweeetners, caffiene, alcohol, and tobacco. Stay away from packaged foods, stick with fresh fruits and vegetables and whole grains.

If your diet is already pretty good you may want to try eliminating dairy and wheat gluten to see if this helps, 1-2 weeks off of these should be long enough to tell if either of them cause problems for you. You can go off both at the same time or try one at a time. This is not easy to do, at least not for me, I crave bread and ice cream but I am trying to do this myself.

Many medications can make your RLS worse. Stay away from diphenhydramine an antihistime found in Tylenol PM and most OTC cold/allergy medications. Many antidepressent medications can make RLS worse too Wellbutrin is one that is well tolerated in RLS, Trazadone is another but it is considered to be a very mild antidepressent.

Hang in there, I too have reached the nearly suicidal stage but have since found some relief. Hoping that you will find relief too.

tootyred · Post by **tootyred** » Wed Sep 19, 2007 6:12 am

well Its 2:02 am and I have an appt tommorrow to discuss the severity of my RLS. for the past 3 days I have taken lortabs that the ER doc gave me first 2 days were good, tonight it doesn't seem to be kicking in and I am worried that there won't be anyting to help, I mean If narcotics don't where does one go from there?? I am on effexor and trileptal for mental health conditions and I know these may be a problem but I am truly no use at all when off anti depressants, I have so much going on in my life right now, about to close on my first house, I do animal rescue, and fostering and BECAUSE of the anti depressant meds I have found life again and I do love my work with animals!! but I am not functioning properly at all, as well as facing anxiety as night starts to fall.. as if my legs are a seperate entity out to get me ...lol... please wish me luck w/this doc as I know he is not crazy about me!!

Post by **ViewsAskew** » Wed Sep 19, 2007 6:28 am

You are probably right - the antidepressants are probably worsening it. You don't have to stop them.

First option is to try different ones. There is a great section in the book, RLS, by Buchfurer, Kushida, and Hening, about which of these tend to work better. They all don't affect RLS the same way and work differently for each of us. Some of us can handle one, but not another and vice versa. So, maybe consider trying to swith those around.

Second option is to take more RLS meds to resolve the symptoms from the ADs. Lortabs are not that strong when it comes to opioids. They are in the moderate range. They also don't last all that long. A longer lasting strong opioid may completely resolve it.

It must be really scary to be in this situation - just when you thought everything was better, the whole thing is collapsing. I can't promise you that it will all be better quickly, but chances are very high that it will be better in time. It may mean working with a new doc, too. I hope not, but many of us end up doing that.

Neco · Post by **Neco** » Wed Sep 19, 2007 7:56 am

Hang in there... Stick with the lortab if you can.. You may have to take more than the ER doc prescribed, but if it is working for you when nothing else has, fight for it tooth and nail, with every inch you can..

If they try to BS you just keep reminding them how you have tried EVERYTHING else, and this stuff actually works. We're all pulling for you, no one deserves to be without meds.

I know some people have reccomended Tramadol, but I have to butt in over them and let you know you DON'T want to take it while also taking anti depressants. You will be at GREAT risk for a seizure - I had one because I was on AD's at the time but Tramadol is all I can really get now.. So I had to risk it then.

KBear · Post by **KBear** » Wed Sep 19, 2007 2:28 pm

The higher stress levels you are currently experiencing (closing on your first house, congrats!) are probably making things worse too.

I weaned off of Effexor myself because it was making my RLS worse (and there were other side effects I didn't like) but now I'm dealing with the low energy and fatigue issues that got me started on them in the first place. My doctor is suggesting trazadone but I think I'm going to ask for Wellbutrin if I decide to go back on AD's.

The AD decision is a very personal one and has to be based on your circumstances. I would rather not start taking antidpressants again, it was so hard getting off them! I'm convinced that if I got a good nights sleep every night that I wouldn't need them. I think I'm more sleep deprived than I am depressed.

SquirmingSusan · Post by **SquirmingSusan** » Thu Sep 20, 2007 5:10 am

tootyred wrote:as if my legs are a seperate entity out to get me ...lol...

Maybe they are :shock:

SquirmingSusan · Post by **SquirmingSusan** » Thu Sep 20, 2007 5:23 am

tootyred wrote:well Its 2:02 am and I have an appt tommorrow to discuss the severity of my RLS. for the past 3 days I have taken lortabs that the ER doc gave me first 2 days were good, tonight it doesn't seem to be kicking in and I am worried that there won't be anyting to help, I mean If narcotics don't where does one go from there?? I am on effexor and trileptal for mental health conditions and I know these may be a problem but I am truly no use at all when off anti depressants, I have so much going on in my life right now, about to close on my first house, I do animal rescue, and fostering and BECAUSE of the anti depressant meds I have found life again and I do love my work with animals!! but I am not functioning properly at all, as well as facing anxiety as night starts to fall.. as if my legs are a seperate entity out to get me ...lol... please wish me luck w/this doc as I know he is not crazy about me!!

Tootyred, don't worry that narcotics won't help. There are stronger narcotics and basically, the dosage of narcotics is unlimited when they are in pure form. When mixed with acetaminophen, there is a cap on how much you can take, but when taken alone, you can take lots. Not right away, now, mind you. :shock:

There's a guy on another message board who takes 160mg. of methadone per dose!!! So don't worry that opioids will not continue to work. I know that when I was taking Vicodin, I built tolerance quickly, but now that I'm on methadone it's really not a problem.

I'm also on Effexor, and it's the best antidepressant for me. I've tried just about all of them, and that's the one that works for me. Wellbutrin doesn't even touch my depression, it just makes me hyper and want to clean my house. And it does help with the myoclonic jerks (PLMs that aren't periodic), so I usually take a really low dose of it. When it comes to the antidepressants, ya do what ya gotta do.

Good luck with your doctor! I'm driving my doctors crazy right now, too. My thyroid tested low, and my doc didn't want to raise the dose, so I told him that if he didn't, I'd take an extra pill a week and raise it myself. I'm getting to be a real brat when it comes to medical care. :shock:

Heck, they work for me, not the other way around.