I am looking for advice

CC · Post by CC » Mon Apr 12, 2004 2:59 am

Hi am hoping someone can give me some advice. I was diagnosed with RLS/PLMD/Sleep Apnea/Hypopnea in the middle of Feb this year (although I suffered from what was called growing pains when I was a kid) and I am taking Mirapex and Keppra for the RLS/PLMD and I am now on a CPAP machine for the Sleep Apnea/Hypopnea. In addition I have chronic fatigue which I am under no treatment for. The advice I am looking for, is for help on how to deal with the pain. The Mirapex and Keppra help with the irritable "wanna chop my legs, feet, hands, and arms off" feeling but does nothing for the pain and fatigue. And my doctor has taken me off my pain meds which I was taking one a day despite that I needed more. He says they can be addicting. In addition I was wondering if anyone has cramping in thier hands and feet to the point they look deformed and to the point you can not mentally tell them to open? And last but not least does anyone have concentration difficulty, memory loss and, at times a type of echoing in thier head because of it sounding like everything is to loud? I despirately need any advice you can give. I am only 28 years old and I have 2 children and a husband. I spend most of my days in bed-in pain and have not been able to work in over a year. I want to live as close to a normal life as possible. Any thoughts would be greatly appreciated.

Rubyslipper · Post by **Rubyslipper** » Wed Apr 14, 2004 3:15 pm

CC, you need to get another doctor's opinion. It sounds like this one is on the right track but if he is refusing to listen to you or help about the pain then honey, go to someone else. There is something else going on here. I have occasional pain but nothing like you are describing. Yes, I have loss of concentration but good grief, when you don't sleep but a couple of hours a night what can you expect? If you have a young family that just takes more energy that you don't have. Please do not hesitate. Don't be afraid to confront your doctor or take your records to a new one. Your life is precious and a gift from God. You have to take care of it because no one else will. PLEASE let us know you are getting help. Love Ruby

miamoss · Post by **miamoss** » Wed Apr 14, 2004 7:16 pm

I've never known RLS to be painful, and I've had it all my 32 years. Just very very annoying ! What pain are you talking about? Sounds like it could be something other than RLS.

jumpyowl · Post by **jumpyowl** » Wed Apr 14, 2004 7:23 pm

CC:

You have quite a battle ahead of you but the truth is on your side so keep fighting. Ruby is right, you may have something else going on, e.g. Chronic Fatigue Syndrome which may even be related to immune system abnormalities and probably to Fibromyalgia. The latter is likely as CFS is usually painless and the latter can be quite painful. My daughter has such painful fibromyalgia that her pain is controlled by narcotics.

It is a quite common misconception among doctors that narcotics are habit forming and thus will be abused by the patients. However, experience shows that when pain medication is taken for serious pain tolerance does not develop rapidly and dependence is not a serious problem.

You may have to shop around and probably have to go to a pain clinic to get adequate treatment (for pain). About 50% of RLS patients suffer from serious discomfort and are treated with opioids with excellent results.

Do some reading on this site and others. Knowledge is power and do not let them brush you off with a statement like "it is all in your mind." If your husband is assertive, it may help if he accompanies you at least on the first visit. (The doctor then cannot say it is on both of your minds!)

Let us know what's happening. No one should live with unmanaged pain! :roll:

JumpyOwl

CC · Post by CC » Wed Apr 14, 2004 9:02 pm

Thank you all for your advice. I am definatley going to have my husband accompany me at my appointments from now on and I am going to consult another doctor as well. It has been hard though as I have already went to 6 doctors and this neurologist (my 7th doctor) that I am going to is the only doctor who could even give me a diagnosis. So I am afraid to go to another one who might not be educated. But I need to get well for my family and myself. So I am willing to do anything. You don't know how much it means to me to have people who understand. I don't know how I can thank you all for your advice. I just have to get this muscle pain under control. Thank you so much everyone! Best wishes to you all! CC

Rubyslipper · Post by **Rubyslipper** » Fri Apr 16, 2004 10:54 pm

CC, we're rooting for you babe! Go in with determination and if that doc doesn't help keep looking. :wink:

Somewhere out there is one who is right for you. It realy helps if your spouse is supportive too.

It's me, CC · Post by **It's me, CC** » Thu May 13, 2004 3:43 am

Hello everyone, I just wanted to update you all on how things were going with me and to thank you all again for your advice. I went to my current doctor a few days ago and this time I took my husband and in addition my kids. My husband had things he wanted to talk to the doctor about as well as I want my children to be informed on my health. I really feel I reached my doctor this time and that he understands me more now. We increased my medicines to Keppra 500 mg tablets 4 of them at bedtime with Mirapex .5 mg once at night and once during the day. In addition I am now on Provigil 200 mg 1 tablet in the am. I take Vitamin E 1000 iu 2 times a day. I am now off the major pain meds for the most part, except on rare occassion. I have started taking Tylenol 8 hour (2 off them instead of the major pain meds). And if needed I use Tylenol PM when I have over done it on some days. It helps me sleep and helps with the pain. In addition my doctor has given me a disabled parking permit to help me get around easier. While moving or walking helps some people relieve thier symptoms for those who have pain the movement helps at that time but causes more pain later. I was also told by my physician that alot of people in the past did not experience pain with RLS but he is seeing more patients with pain who also have chronic fatigue or even fibromyalgia in addition to RLS. Well I think that is about all for my update. And again THANK YOU TO YOU ALL! If it would not have been for your advice I probobly would have not had my husband go with me. He was a big help in saying things from the outsiders prospective looking in on my struggle. And by me taking my children I think they have a better perspective on what I go through each day and now they can better assist and support me. SO THANK YOU AGAIN! I WISH YOU ALL THE BEST!

jumpyowl · Post by **jumpyowl** » Mon May 31, 2004 11:17 am

Yes, there is no question about RLS often (at least 50%) associated with pain anymore. Any doctor who does not know this is way behind times. :roll:

The Mirapex and Keppra help with the irritable "wanna chop my legs, feet, hands, and arms off" feeling but does nothing for the pain and fatigue.

Keppra, one of the newer (and less used) antiepileptic drugs, actually causes fatigue! Also it is known for causing depression and suicidal thoughts. I wonder why your doctor selected this drug in preference to other (better known) anticonvulsants such a Neurontin?

How do you like Provigil (modafinil)? They use this drug for narcolepsy. It can cause headache (in about 1/3rd of the patients) and also insomnia.

There is nothing basically wrong in controlling pain with opioids when real pain is present. In such cases, the chances of getting addicted is quite low. Only pain doctors seem to know this, however.

Let us know how you are doing?[

It;s me again :CC · Post by **It;s me again :CC** » Wed Jul 21, 2004 5:26 am

Hello everyone. I am once again seeking advice. I am again having alot of pain and suffering from both the pain and irritable feelings of my RLS. We have once again increased my medications and I am now going through 3 types of muscle message in hopes to help my RLS. My doctor does not want to change my meds nor does he want to acknowledge any of my other health issues. It is like he is not listening once again but I am unable to get another doctor to see me. Most of the doctor's in my area are not familiar with RLS and PLMD/PLMS and they also state that I have to many other health issues to figure out what it what. Do any of you know any physicians in Florida who might be able to help me. Like I said earlier I have pain and symptoms of RLS everyday now, and I have even discovered RLS symptoms in my lower back and toes, in addition to the already having it in my legs and arms. Any advice or help please let me know. PS Jumpy Owl, You are right about the fatigue and depression caused by the medication as well as the headache caused by the provigil. I have had a headache so bad today that I thought maybe it was a brain anurysym. But it is the medication, I am sure of it but I my doctor says all his patients with RLS are all successful on the same medications I am on and that they are all safe medications. I am at a loss for what to do. I cry everyday thinking I am going around in circles with a doctor who I am begginning to think does not know about RLS at all.

jumpyowl · Post by **jumpyowl** » Wed Jul 21, 2004 2:18 pm

I am sure of it but I my doctor says all his patients with RLS are all successful on the same medications I am on and that they are all safe medications. I am at a loss for what to do. I cry everyday thinking I am going around in circles with a doctor who I am begginning to think does not know about RLS at all

Again, the same bull!

Ask him how many RLS patients he/she has treated, how many can he/she document? They are all safe medications??? I knew physicians receive little training in pharmacology but even ignorance has to have its own limits. The truth is there are not ANY completely safe medications! They all have side effects!

Yes, you are going around circles, vicious circles at that.

Right now lack of restful sleep is you greatest problem and you should work on that.

You really need to change doctors! Or get a consult, whatever!

Can you recite all the medications you are on at the present time? It would help!

Also where in Florida do you live? Can you supply the town?

Hello from CMC · Post by **Hello from CMC** » Fri Jul 23, 2004 8:41 am

Hello Jumpy Owl. This is CC. I had problems logging in and had to create a new username so I will now be responding under CMC. I thankyou for your response. I live in Ocala. I spent all day yesterday calling around again to find a doctor but no luck. I again called the Mayo clincic and Shands at University of Florida but no luck. I really do appreciate your time in talking with me. It is very difficult with no support from a doctor or a group. I tried to get in one and they told me I do not have RLS because RLS is not painful. May I ask, how long have you had RLS and what type of doctor diagnosed you? Again I appreciate anything you can tell me. Thank you. CC -CMC

jumpyowl · Post by **jumpyowl** » Fri Jul 23, 2004 12:44 pm

CC you are in luck. There is actually a doctor who professes to know RLS in Ocala. Here is the info:

Florida Neurological Center
Lance Kim DO
1503 SW 1st Ave
Ocala FL 34474-4005
352-867-9877
Neurology

It appears that he is a Doctor of Osteopathy. And this is actually good for you.

Your doctor is behind times. Now it is recognized that at least half of the RLS sufferers have pain!!!

Can you navigate on board? If so, go to the Forum of GENERAL TOPICS and click on the topic on the Algorithm of RLS by Heronak. There you will find a review of the Mayo article by me. It should be very useful. You can also see the whole article by using the link HERONAK gives in the first post.

I self-diagnosed myself and told my doctor that I had it. Only thing he came up with was Hydrocodone. For details read my first post in the Forum of New to RLS, topic Self-diagnosed.

Then it was confirmed by a sleep study (same forum same topic, page 2-3) that I have severe PLMD (periodic limb movement disorder) which is frequently associated with RLS.

BTW not all doctors (usually pulmonologists) with a sleep lab can interpret a polysomnograph for affliction other than sleep apnea.

I think if you read a little bit of my addmittedly long topic (thread) you will find a lot of useful info.

If you are unable to find my topic/thread somebody will help you. We are not all computer whizzes. :wink:

jumpyowl · Post by **jumpyowl** » Sun Jul 25, 2004 9:53 pm

I am running out of room in my private mail box.

I understand the situation about your present doctor. I should have guessed. You have to go out of town. There is nothing in Gainesville except the university so you have to go to Orlando. Luckily there you have various choices:

Florida Hospitals Sleep Disorders Centers
Robert S. Thornton MD
601 E Rollins St
Orlando FL 32803-1248
407-303-1558
Neurology
Sleep Medicine

Florida Hospitals Sleep Disorders Centers
William T. Bird MD
601 E Rollins St
Orlando FL 32803-1248
407-303-1558
Neurology
Sleep Medicine

Rheumatology Associates of Central Florida, P.A.
Pamela G Freeman MD
3861 Oakwater Cir Ste 2
Orlando FL 32806-6258
407-859-4540
Rheumatology

Bayhill Family Care
Nasirdin Madhany MD
7601 Della Drive
Number 19
Orlando FL 32819
407-352-8188
Family Medicine

I am glad you stopped taking Tylenol PM, the antihistamine is bad for RLS.

I have already commented on your medications. Is there a specific question you have in mind? You really has to stop seeing this doctor. He is definitely part of the problem and not the solution.

Let me know if you find a good doctor. Do not be afraid of asking questions prior to your visit.

CMC · Post by **CMC** » Sun Jul 25, 2004 10:10 pm

Thank you again Jumpyowl. I am going to try these places and see if they can be of some help. Thank you again I will keep you posted.

CC · Post by CC » Sun Aug 29, 2004 10:55 am

Hello everyone. I was able to remember my password so I am back as CC again. Well I wanted to update my condition since I went to a new doctor. I am doing a little better with RLS but am now trying to get treatment for Fibromyalgia along with all my other things and now depression. I guess all my illness' got to me. But good news is that I am now on Mirapex .5mg tablets one and a half 1 hour before bedtime, Neurontin 300mg tablets 3 times a day, Ultram 50mg tablet one hour before bedtime, and now Zoloft 50mg tablet in the am. My doctor knows antidepressants are not well for people with RLS but He said I really need it, and I agree. So far things are going ok. We are going to increase the Neurontin thought through the advice of my new 2nd doctor who is a pain management doctor. My 2 new doctors are working with each other to provide the care I need. Thanks to Jumpy Owl for giving me advice to look out of my town. An hour travel to go to 2 doctors who want to help and listen is great. I hope they stay that way and don't change like my last doctor did. So thank you again to Jumpy Owl and all the others who encouraged me to go to as many doctors as it takes to find one who wants to help and who will listen. If you live in Florida and need help, go to Florida Hospital and Celebration Hospital. They have been great so far. I am actually smiling now instead of crying all the time :lol:

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