getting a doctor to understand

Whether new to WED/RLS or new to the site, we welcome you and invite you to share your history and experiences with WED/RLS, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.

getting a doctor to understand

Postby 1mainpain » Fri Mar 22, 2013 6:06 pm

I have tried ropinirole,ativan, gabapentin, all of these seem to intensify my pain. if I take oxycodone about two hours prior to bed and when I get up I get by pretty well. One doctor said he just does not treat rls with opiods I am currently looking for another doctor how can I make them understand
1mainpain
 
Posts: 7
Joined: Wed Mar 20, 2013 10:37 pm

Re: getting a doctor to understand

Postby ViewsAskew » Fri Mar 22, 2013 10:30 pm

It is very hard sometimes.

It's much harder to begin with for people who experience WED symptoms as painful. Other conditions are painful and it's always possible more than one thing is going on - hard to determine what is WED and what might be something else. Pain wasn't originally part of how doctors interpreted WED. I talked to Dr Buchfuhrer last time I saw him - he said doctors compare it to being tickled for a long time. Eventually, when being tickled, it turns into something very irritating and painful. So, they think of it not as being painful, in and of itself, but experienced as painful when occurring for long periods.

Some doctors believe that all patients will respond positively to dopamine therapy in terms of WED symptoms. They might fail in other terms - side effects - but that the medication always will resolve symptoms. When dopamine drugs do not help at all, it makes sense to ask if something else is going on. Then there's the difficulty which opioids themselves. As Polar Bear said, it's not something that doctors go to first. Some doctors simply will not prescribe them, even if it is indicated and everything else has failed.

I also think that there may be either different types of WED or people who have more than one condition that have similar symptoms, which complicates it even more. We've had several people with painful WED who've come to find out that their pain wasn't only because of WED. They had WED, but they also had neuropathy or some other condition that was painful.

Has your doctor ruled out all other sources of pain? Also, have you tried another dopamine agonist - such as pramipexole? Some people fail one dopamine drug, but do well on another.
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.
ViewsAskew
Moderator
 
Posts: 12013
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: getting a doctor to understand

Postby 1mainpain » Fri Mar 22, 2013 10:52 pm

thanks for your reply I have had this for seven years. It started with just leg jerking. the past two have been accompanied by flulike leg pain. I only have a ferritin level of 7.5 but iron level is normal
1mainpain
 
Posts: 7
Joined: Wed Mar 20, 2013 10:37 pm

Re: getting a doctor to understand

Postby rthom » Sat Mar 23, 2013 2:29 am

Your dopamine antagoist would be not as likely to be effective for very long if your ferritin level is only 7.5. It sounds like getting that up (Hopefully about 100 or better) is the first thing that should be looked at. It has helped many folks on here. Some get infusions--this is very important to talk to your dr about though. Normally it only needs to be around 20 but for us, to keep from augmenting, it needs to be much higher.
rthom
 
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: getting a doctor to understand

Postby Polar Bear » Sat Mar 23, 2013 2:59 am

And if ferritin serum level is low, as yours is, then ropinerole is one of the medications that should not be tried, your ferritin needs to be around 100 before trying a dopamine agonist of which ropinerole is one. Augmentation is much less likely to occur (when taking a DA) if your ferritin level is around 100.
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
Polar Bear
Moderator
 
Posts: 5274
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: getting a doctor to understand

Postby ViewsAskew » Sat Mar 23, 2013 4:58 am

It's possible that ropinerole could make the symptoms worse with a ferritin level of 7.5. I think mine was 8 when I started pramipexole. I had worsened symptoms within a week.

Has your doctor done anything to improve the serum ferritin level? That should be something you work on right away.

Sorry for all the questions - so when you say jerking, help me understand. Is there "need to move" feeling associated with it - like, "I have to move my legs, this is driving me crazy!" But, if you didn't move they would sort of move on their own? Or was it that they did involuntarily jerk every so often? The first is more WED, the second is more like PLMs.

By flu-like, it sounds like that are achy, sore, fatigued? Does that get better when you massage them or walk around? Or does moving not help?
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.
ViewsAskew
Moderator
 
Posts: 12013
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

viewsaskew anwers

Postby 1mainpain » Sat Mar 23, 2013 11:20 pm

dr mentioned nothing else about ferritin level just that he was confused because iron level was normal but ferritin was dangerously low. my kicking and jerking sometimes my right foot is shaking some times I look like im trying to kick start a motor cycle this is also the right leg. After I wake the pain is flu like and I feel like I cant stretch my legs or arms far enough this can go on all night
1mainpain
 
Posts: 7
Joined: Wed Mar 20, 2013 10:37 pm

Re: getting a doctor to understand

Postby ViewsAskew » Sun Mar 24, 2013 4:23 am

Your do need to find out why the ferritin is that low, but it's not uncommon for it to be. Several of us here have had it under ten. Your doctor doesn't sound like he is that educated about this.

Most of us don't have shaking like that, though. I'd definitely want him to find out if something else is going on or verify its periodic limb movements.
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.
ViewsAskew
Moderator
 
Posts: 12013
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: getting a doctor to understand

Postby 1mainpain » Sun Mar 24, 2013 11:50 am

thank you so the movements are not common with wed
1mainpain
 
Posts: 7
Joined: Wed Mar 20, 2013 10:37 pm

Re: getting a doctor to understand

Postby debbluebird » Sun Mar 24, 2013 2:50 pm

I had WED probably for most of my life. I got the PLMD about 25 years ago. I find that to make me more crazy.
debbluebird
 
Posts: 1005
Joined: Mon May 21, 2012 3:27 pm

Re: getting a doctor to understand

Postby ViewsAskew » Sun Mar 24, 2013 6:25 pm

1mainpain wrote:thank you so the movements are not common with wed


Not with WED. That is all about a need to move - you MUST walk, move, stretch, etc.

I'd not think that shaking qualified as PLMs either,but I'm not a doctor. Reading from a book written by doctors, it says that "these movements occur in a series of four or more and typically recur at intervals of 10 to 50 seconds that can vary in period and amplitude..." Given that they recur in intervals, it's not usually like shaking - it's slower, more deliberate.

I'd definitely see a specialist who can help you determine if it is PLM or something else. The flu-like pain could be so many things.

If it helps, here are the questions listed by a doctor to determine if it is WED:

1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning?

If you answer those, we can probably decide if it's WED. We can't help for PLMs, though, as those do need to be identified in a medical setting.
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.
ViewsAskew
Moderator
 
Posts: 12013
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: getting a doctor to understand

Postby badnights » Mon Mar 25, 2013 7:05 am

Your ferritin level is probably a consequence of your RLS/WED. Some of us can be treated by taking oral iron, which improves our RLS/WED symptoms, but some people can't raise their ferritin that way, and some can but don't experience an improvement in symptoms.

Oral iron therapy is definitely something that should be considered for you. I don't understand a lot about it, but many iron deficiencies can be treated by raising the iron then stopping iron therapy. With RLS/WED, it generally doesn't work that way, and iron therapy is continued indefinitely. Over time without ingesting (or injecting) more iron, the body stores are depleted, at a much faster rate than in non-RLS people. I take 600 mg iron sulfate daily :( I still need medication but if I stop the iron, I need a lot more medication.

It is possible that iron therapy will improve your symptoms. Not remove them completely, but reduce the amount of other medication you will need.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
badnights
Moderator
 
Posts: 3127
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: getting a doctor to understand

Postby wabbit » Tue Mar 26, 2013 2:58 am

I strongly recommend you do not take opioids. It is a serious narcotic and very additive. A person I know ended up divorced because she got put on oxycondone for pain. She needs more and more to make the pain go away. Opioids can ruin your life as well as your relationships. In other words, it can be worse than crack. :cry:
wabbit
 
Posts: 16
Joined: Sat Nov 10, 2012 10:34 pm
Location: Michigan

Re: getting a doctor to understand

Postby ViewsAskew » Tue Mar 26, 2013 5:12 am

wabbit wrote:I strongly recommend you do not take opioids. It is a serious narcotic and very additive. A person I know ended up divorced because she got put on oxycondone for pain. She needs more and more to make the pain go away. Opioids can ruin your life as well as your relationships. In other words, it can be worse than crack. :cry:


Many of us here do take opioids. We have to. It shouldn't be undertaken without consideration, but it's not something some of us have a choice about. When other medications do not work for us, or cause untenable side effects, we have to use them.

Research, albeit only one study, has shown that opioids use in WED patients is less problematic than for people who use opioids for pain.
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.
ViewsAskew
Moderator
 
Posts: 12013
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: getting a doctor to understand

Postby wabbit » Wed Mar 27, 2013 2:13 am

Ann,

I am currently taking Mirapex. In August it will be a year and I am aware of the possibility of augumentation and heart failure. What names of opioids work for use for WED. I would like to have an idea of what mediciations work for WED in case I have to eventually change. So far Mirapex is working well. Whatever I take will be up to my neurologist due to the epilepsy.
wabbit
 
Posts: 16
Joined: Sat Nov 10, 2012 10:34 pm
Location: Michigan

Next

Return to Just Joined?

Who is online

Users browsing this forum: No registered users and 1 guest

cron