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RLS has broke me!

Posted: Thu Sep 19, 2013 2:39 am
by michelenebelung
I've always had RLS, even as a kid. I tried telling everyone it wasn't just leg cramps. I remember waking many nights screaming there were spiders crawling on my calfs,or crying because the pain and jerking wouldn't stop. I just had to deal with it cause all doctors said it was leg cramps, I've spent so many nights dealing with this, going days without sleep. In the last couple of months my RLS has gotten beyond control. I experience the feeling in my arms so bad, that I beat my arms with the back of a brush just to feel a different sensation. I get it in my gentials where in order to feel a different feeling I make my self have a organism. In that 30 seconds I feel relief not the pleasure of a organism but relief from that annoying hard to describe feeling. I have had a couple of breast surgeries this year and in that time was prescribed norco. I have discovered its a life savior. I had been diagnosed with RLS was about year now but yet have discovered a medication that can provide the relief like norco does. My neurologist has described, Lyrica, gampentan(spelling) and now Neurpro. It helps I know it does because without it I get it back in my arms and gentials and then I go crazy. Norco makes it go away in all places. In the past I have been to my ER many times because I was in misery. Tried telling them its RLS, I've done so much research, but they think I'm having a anxiety attack. Yea, now I'm having a anxiety attack after going days without sleep, feeling this feeling that won't go away that makes you insane. I have decided to talk to my family doctor again because I feel so comfortable with her. My neuro makes me feel like I'm crazy and I'm just there for the medication and attention. Today I called my doctors nurse because I'm almost out of my norco. I have 120 month supply, usually 3 months a time. Well I'm takin 2 #10 every 4 hours that 120 pills in 10 days so a3 month supply does 1 month for me. When I called she made me feel like a druggie. I'm not. I'm not addicted to the feeling you get from pain pills I'm addicted to my legs feeling normal. They should feel that way anywhys right? I've had low iron in the past but I don't know if its low any more. My neuro never did any blood test, just a muscle and nerve test. I'm hoping my family doctor will help me find a specialist because I don't know how much more of this I can take. I'm to the point I want to cut my legs off if not end me. I don't want to die but I'm in so much pain I just want to feel better. I won't of cause to do that so no worries I have to much to live for but just to feel better seems like a dream. I just want doctors to listen to me, not think I'm wanting drugs. Stop making me feel that way, I hurt, make me feel better or at least try. Now what's worst is that my 11 year old daughter who is going through purpety is experiencing the same things I am. I'm not going to give her norco, so what do I do. I can't stand to see her in pain. I know what she is feeling.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 4:20 am
by rthom
Geez Michele you are having a really rough time. Sorry to hear this. I hope you can find some support that is workable for yourself too. Is your daughter still young enough to see a pediatric Dr? Mybe she can get help before she has to use those adult Dr's that seem less attentive? I'm wondering if you could also help yourself while helping her to learn about what she needs in order to have the best future she can. (I had in mind a peds Dr supported By info from Dr B. maybe?)
Make sense? If not I'll try to clarify if I can.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 4:28 am
by ViewsAskew
It is so difficult to have this disease when your doctor doesn't understand, isn't it?

Sounds like one of the most important things is that you get to see a good doctor. Are you able to change doctors? I don't know if you have insurance or not, or if it's hard to see a new doctor. But, speaking from experience of having bad doctors, this has to be your first priority. Next, do some reading and get some material for your general physician. You may be able to get help there until you get a doctor who can really treat you. Make an appointment and then get the following ready. - this is a great brochure. Print it for your family doctor. Highlight the part about iron and serum ferritin. When you go in, say that the WED Foundation (RLS has a new name) suggests this and that you'd like to know the doctor's thoughts about it. Give it to him/her and ask for him or her to call you in a few days and let you know what he/she thinks. Hopefully, he or she will immediately order the test for you. You are in a tough spot - you know the Norco works, but as you have found out, it's also associated with drug use. You have to be very careful in what you ask for. Let your doctors know that you are absolutely willing to try other things, too. That what you want is to be symptom free so you can sleep, take care of your family, and live a somewhat normal life. For some of us, it means these drugs, unfortunately, but many of us can use multiple things. You might find, for example, that you can use one of the antiseizure drugs, such as Horizant (it's new and works better than Lyrica or gabapentin for many of us) and just a little bit of an opioid. I'm not saying that is what will work - just that there are many options and you may have to try several to find the best for you that your doctors can also live with.

Print out this document: http://download.journals.elsevierhealth ... 005594.pdf It is about how to treat WED patients and was created by the Mayo Clinic and the WED Foundation together. This is what doctors should follow when treating you. It's good for you to know and understand, if you can, but it's medical language so it may be hard to follow. If you follow it, highlight what is important to you and do that same as above. Give it to your doctor and say, "The Mayo Clinic and The WED Foundation recommend this. What do you think? Is this a good treatment option for me?" If the doc reads it and says no (maybe at the next meeting or in an email later), ask why not. Any doctor who refuses to follow this treatment protocol is not a doctor you want treating you. Unless the doctor has a really good reason - such as you are taking medication that might interact, you need to find a new doctor (sometimes easier said that done!).

Get your daughter to the doctor, too, and get her the same blood test. Get yours first. Once you find a general physician who will do this, you have at least some help.

Then, go to this page at the WED Foundation and print off any that interest you and that you want to share with your doctor(s) or your daughter. You don't want to give all of them to your doctor at one time, but each time you might take one more with you with something highlighted that might help you.

And, if you can afford it, join the WED Foundation. It's not a requirement by any means. It helps all of us in that it allows them to create more of these great materials and to fund research that will help all of us eventually.

It sounds to me as if your doctor has tried medications from the anti-seizure class (Lyica, also called pregabalin, and gabapentin) and from the dopamine agonist class (Neurpro, also called rotigotine). Did one work better than the other? Also, when you started taking the Neurpro/rotigitine, did you notice that any of your symptoms got worse at any point? For example, did you have these sensations in your genitals, back, and arms before taking this drug?

Sorry for the really long post. There is a lot of info in it. Let me know if anything isn't clear.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 5:14 am
by michelenebelung
My rls did get worse with Neurpro so I don't know whether to stop taking it or wait. Even though its in the dopamine class I don't think it's helping like the norro but my body is adjusting to the norco. I've tried not taking a lot but then I feel the rls and then I go without sleep and then the rls gets worse. It's a never ending cycle. Now that I'm feeling 24/7 I'm taking a lot of norco. Wish I could get my doctor to understand that's what works. I think GOD I found this website. For so many years I thought I was crazy. No one could figure out what was going on. Spend so many sleepless nights crying and freaking out because that feeling in my legs, arms, and gentials was there. I read the stories and feel absolute sadness, cause I know and feel for all you, but at the same time I'm happy cause their are people out that know what this is, they have it too. I'm just not insane or need to see a mental doctor.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 5:21 am
by michelenebelung
I haven't got the feeling back in my arms and gentials. I'm so thankful for that. So I know either the Lyrica or Neurpro is working. I missed a couple of doses one night and knew right away I wasn't doing that again. But the feeling in my legs is still there. The norro settles that down and I can relax. I feel like my doctors might not give me a lot of addictive medication because I've been diagnosed with depression. But I'm not going to mis use it why would I. I wouldn't mess my life up I just want my life without pain, sleepless nights, and anxiety.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 5:27 am
by michelenebelung
I will be joining ASAP as this as giving me hope. I thank you for all the info.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 1:12 pm
by michelenebelung
I was wondering, I have a mycrobacteria infection. Have had well over 6 months. Been on antibiotics well over 6 months as well. Doctor says I will be on antibiotics for at least a year because its such a bad bacteria to have. Do you think there is any connection to this and my RLS being quite severe. I can't really say if I remember it being this bad before I got this infection. I have had to have 2 breast surgeries because of this. They have removed 2 lumps filled with bacteria in my breast. If they would check my iron levels, would they get a accurate reading?

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 6:04 pm
by ViewsAskew
They would get an accurate reading of your iron levels.

The surgeries could have caused enough blood loss that your symptoms are worsened. Additionally, some of us just get worse with surgery. There are many hypotheses, but no one is sure why.

The infection may be related, but we don't know enough about WED to know. There is some research to show that for some people, antibiotics actually help. It's some relationship with bacteria and people who have things like irritable bowel or other gut issues. Here is the research:

Do you take anything for depression? Actually, let us know exactly what medications you are taking - it may help us as some medications can worsen WED/RLS.

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 11:18 pm
by michelenebelung
Doxy-cycl hycl
Vitamin c
Hair, skin, and nail supplement

Re: RLS has broke me!

Posted: Thu Sep 19, 2013 11:19 pm
by michelenebelung
And Neurpro

Re: RLS has broke me!

Posted: Fri Sep 20, 2013 3:16 am
by ViewsAskew
Fluoxetine can make WED worse. It could be that a different antidepressant would work better.

Oddly while less than 1 percent of people taking docycycline report having increased WED/RLS as a symptom over the past 6 or 7 years, almost all of them complained of it in the last two years. Weird.

Interestingly, a side effect of doxycycline is anemia! That will absolutely worsen WED! So, do get your blood work done - both a test for hemoglobin and a test for serum ferritin.

Re: RLS has broke me!

Posted: Sat Sep 28, 2013 10:17 am
by michelenebelung
I have a appt. with my family doctor to discuss some new anti depressants, along with some pain killers, anxiety, and sleep. If I can find some other medication to help other than pain pills that would be awesome. I did stop the depressent and antibiotics for right now. I will be calling my infection doctor Monday for a appt. to discuss differerent antibiotics, hopefully i will be done with these, but she said i will be on them for a year because of the kind of infection, but maybe my body will suprise her and have cleared it up already. I think that dopamine works well with my rls. But I have been on Neupro for a month and don't see a difference. I don't know if its not a high enough dose or what it is. I take a pretty high dose of norco 2 #10 325 every 4 hours to ease the feeling. 3 to 4 to make it go away completely. I try not to do the 3 to 4 because its just to much but on days when it's really bad I have too. It got really bad the other day. So bad I was hitting my arms and legs with a hammer to cause a pain feeling something instead of that annoying weird feeling. I didn't realize I was hitting hard and I left some pretty good bruises on my arm, so I think it's time to discuss some stuff with the doctor. I found a rls specialist in my area and I will be talking to family doc about scheduling me appointment with him. Until I get a appt. though my family doc is going to have to prescribed something otherwise I will be in the psy ward.

Re: RLS has broke me!

Posted: Sat Sep 28, 2013 10:18 pm
by ViewsAskew
It is seriously horrible when it gets like that. It does make you feel crazy!

Let us know what the doctor says. Do consider taking some of those printouts I listed above. It may help.

Re: RLS has broke me!

Posted: Sun Sep 29, 2013 8:41 am
by EeFall
Sorry to hear you are having so many problems with this. I read over much of this thread and don't have anything to add except that many of us with severe RLS/WED have severe reactions with simple things that we eat. For instance, if I use aspartame (Nutrasweet) sweetener at all it nullifies all of my medications and I have terrible RLS for a day or two after ingesting it by accident. Many, many foods have it as an additive. Putting the blue package in a cup of coffee will keep me up 24 hours easily. There are other things like that that can do similar things to people with RLS.

Re: RLS has broke me!

Posted: Sun Oct 06, 2013 12:14 am
by badnights
hey michele
you've received some great advice above. I hope you'll get in to see the RLS/WED specialist, and I hope that person genuinely is a specialist. It would make your life so much easier! There will be an end to your agony (hard though it might be to believe as the sensations drive you mad) - all you need is a doctor who'll trust you and is wiling to learn. Hopefully that's happening.

I had pneumonia three times since I developed bad RLS/WED, and two of those times, my RLS/WED became worse after I started antibiotics. The third time, I delayed starting the antibiotics, out of fear of the RLS/WED worsening; and was prescribed a different one that didn't seem to make my RLS worse but hurt my stomach so much it was almost as bad. On the ohter hand, I've heard the same thing as Ann, that antibiotics designed to kill gastrointestinal infections can ease the symptoms of RLS (maybe only of RLS secondary to absorption problems in the intestine). So perhaps some antibiotics can worsen RLS, some can help, some don't affect it, & perhaps it's different with each person.

Regardless, it might be unwise to stop your mycobacterium antibiotics. Stopping before the recommended time is up can allow the remaining bacteria, which will be the ones more resistant to the antibiotic, to reproduce again, which gives them an opportunity to mutate into strains that are fully resistant to the antibiotic. Those resistant bacteria might then flare up in your body and be very very hard to eradicate next time. I would just continue with the recommended treatment of any antibiotic, never cut it short. Especially for something like mycobacterium that can be present for a long time without noticeable symptoms.

If the antibiotic or the AD aren't worsening your symptoms, and you're not augmenting on the DA in Neupro, you may simply have too severe a case for the meds you're taking. Norco is a mixture of acetominophen and hydrocodone (you have 10-325 pills, which are 10 mg hydrocodone and 325 mg acetominophen). Hydrocodone is one of the lower-potency opioids. I think it's classified as medium potency, with codeine being an example of a low-potency one, and oxycodone, hydromorphone, and methadone being high-potency ones.