Hello,
I am not a RLS sufferer but my husband is.... he has been to probably a dozen specialists and been on every kind of medication that's supposed to provide relief from RLS symptoms and the only thing that has worked for him are opioids such as percocet, morphine sulfate, etc. He has severe pain along with his leg-shaking symptoms - he is more concerned about the pain than the other stuff, as it interferes with his ability to function normally. The pain goes on all day if he is not on pain medication (and it's not from withdrawal, he had the pain before he started pain medications, and goes through withdrawal voluntarily on a regular basis so that he doesn't build up a tolerance or become addicted). He is able to sleep at night with the use of Clonozapam (sp?) but suffers terribly during the day if he isn't on his meds to the point of not being able to function, which is NOT acceptable, as he has to take care of our 2-year old son while I am at work.
He is currently going to a pain management specialist once a month, who prescribes morphine and percocets for him, but the pain doctor has little experience with RLS and also doesn't seem to want to spend any time talking to my husband about his symptoms or about treatments he's already had from other doctors, just keeps sending him for more tests which don't show anything. This doctor just seems to want to write the scrip and then get my husband out of the office, and not actually do anything to help him or support him. In fact, he seems not even to recognize my husband or his case, even though he has been coming in every months for a couple years. My husband would like to see a doctor who actually wants to help him rather than get rid of him, but doesn't know where to turn as all the dr.'s our family physician has referred him to have been of little help and we don't know any other doctors.
He has been to more than one neurologist, a sleep specialist, and a bunch of other doctors... our family physician is very supportive and recognizes that opioids seem to work best in my husband's situation, but he doesn't feel comfortable prescribing them in the amounts that my husband needs so has referred him to the other doctors. The other doctors SAY that they know about RLS, but none of them seems to have read any of the research that opioids are an effective treatment for some patients.... my husband has been on all the other drugs and none of them has given him pain relief. Some of these doctors also seem to imply that my husband is faking or exaggerating his pain symptoms to get pain medication, which adds to his frustration.
Does anyone know of any doctors in the South Jersey or Philadelphia areas who have experience with RLS symptoms requiring pain medication? My husband is so frustrated and angry with the medical profession at this point, and we don't know where to turn.
Opioids and problems with doctors
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
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I wish I could help, but am not from that area. It can be very hard to get these drugs and many doctors are NOT well-versed in the Mayo Clinic Algorithm which clearly suggests using these and that they should not be withheld from people who need them.
Here are some things people have done who have had difficulty:
-Take a printout of the Mayo Clinic Algorithm with you and give it to the treating doctor. You might also write a patient letter to the doctor at www.rlshelp.org. He often suggests opioids and as he is a board member of the RLS Foundation, his suggestions are better 'heard' by you doctor
-Try a pain clinic. Many people with RLS have a pain component. These people have had a lot of luck going to pain clinics
-Agree to sign a "contract" regarding using these drugs. Many doctor feel more comfortable using these. There are pros and cons, but it may get your husband what he needs
-Go to his appointments with him. Sometimes doctors can finally "hear" what is really going on when a spouse or partner goes with and explains it from their persepctive
-Pick the doctor you have that is the most supportive and educate him or her. Many of us have had the best luck educating our primary care docs through articles and research studies from this site, the Mayo Clinic, We Move, etc. It usually is better to take one or two short things each time, rather than giving them many pages (ask me how I know this!).
Hope these ideas help some. You may have already tried them; if so, you really have my empathy. This is indeed a tough place to be. I was successful using a combination of the first and last ideas I listed. I went back to my old primary care doc that I used to see 10 years ago. I was sure he's listen to me, even though I had moved and had to drive 55 miles or so to see him. I explained the situation and told him I'd seem 8 or 9 doctors, I'd been through many drugs, and I had lots of info to show that they best way to treat this was through opioids. He was cautious, but agreed. Now he knows more about RLS than many other docs and has identified more of his patients with it.
Welcome to the group.
Ann
Here are some things people have done who have had difficulty:
-Take a printout of the Mayo Clinic Algorithm with you and give it to the treating doctor. You might also write a patient letter to the doctor at www.rlshelp.org. He often suggests opioids and as he is a board member of the RLS Foundation, his suggestions are better 'heard' by you doctor
-Try a pain clinic. Many people with RLS have a pain component. These people have had a lot of luck going to pain clinics
-Agree to sign a "contract" regarding using these drugs. Many doctor feel more comfortable using these. There are pros and cons, but it may get your husband what he needs
-Go to his appointments with him. Sometimes doctors can finally "hear" what is really going on when a spouse or partner goes with and explains it from their persepctive
-Pick the doctor you have that is the most supportive and educate him or her. Many of us have had the best luck educating our primary care docs through articles and research studies from this site, the Mayo Clinic, We Move, etc. It usually is better to take one or two short things each time, rather than giving them many pages (ask me how I know this!).
Hope these ideas help some. You may have already tried them; if so, you really have my empathy. This is indeed a tough place to be. I was successful using a combination of the first and last ideas I listed. I went back to my old primary care doc that I used to see 10 years ago. I was sure he's listen to me, even though I had moved and had to drive 55 miles or so to see him. I explained the situation and told him I'd seem 8 or 9 doctors, I'd been through many drugs, and I had lots of info to show that they best way to treat this was through opioids. He was cautious, but agreed. Now he knows more about RLS than many other docs and has identified more of his patients with it.
Welcome to the group.
Ann
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.
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.