RLS, Hard core Medications, living strategies, + conditions

For everything and anything else not covered in the other RLS sections.
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James333
Posts: 12
Joined: Thu Dec 27, 2007 2:11 am
Location: California Fort Bragg Mendocino County

RLS, Hard core Medications, living strategies, + conditions

Post by James333 »

Well its been a much better new year for me so far since my last posting where I nearly gave up on life. I got Social Security. My RLS and Neurological problems have escalated though to the the point where I am scared to death of them getting worse and worse. Social Security I thought would bring me happiness but it has not. SSDI is good but not great. My family has neurological problems in there genes. I hope to god they find a cure for Ekboms. I have tried everything and I mean everything to combat my Ekboms/rls spent thousands, tried many techniques, meds, and wasted a lot of time and money. It is very painful at times for me. I sometimes have an outer body experience from my pain and insomnia it sounds corny and crazy but its the truth. Can anyone relate? I sleep with a mouthguard use Icy hot not as much as I did before.



My problem is I do not want to take opiates’ (Viicodin, Percadane, Oxycotten, Methadone etc... Even though they may help and work I have a fear of
anything in that class of drugs. After 6 years Restoril stopped working on last Friday night for good. Six years is a good run for a med for this problem. It helped a lot. When I was in the hospital I was prescribed Klonipin which still works somewhat. I won’t talk about anymore meds since they are personal and different for everyone. I am very afraid of where my rls will be at five years from now. Just about all neurological conditions increase with age. Its disabling now but can it get much worse? What do I do? What do I do? I am thinking about no longer driving at all. Its to much of a risk I drive only when I can but its tuff and I need caffine to drive which is not good for my RLS.



I am working with a social worker who suggested in home services which may be a possibility I need if things get worse. I would describe my condition from going from Mild- Moderate to Moderate- severe over the last twenty years plus. I have had leg problems since a very young age very minor and infrequent at the time but the night, the tossing turning, not being able to hold still and pain was there. I will never forget it. I don’t know how I have been able to live with it for so long. In the past I have self medicated like so many of us.




I thought when I won disability this will be great I would have the free time to pursue all of those hobbies, interests and things I want to do. I can help others
with the condtion out. I will have the time to do this stuff but on the other hand there are days and nights in rows when all I can do is watch TV and not get out of bed nor care for myself its sad. Its very depressing and I still do not understand it, or can understand how to cope with it. A question I have is I do not know if I should see a top hot shot RLS Neurologist? If its worth it. It may it may not.



There is no cure and I have tried so so so much. I have seen plenty of neurologists but not a RLS specialist. But it may not be worth it at all or maybe it is there is no magic wand or cure that these top book writing docs have. When you have not had sleep for 4 or 5 days are unable, in pain,not able to drive, forget the date on a check you write like I recently did to my land lord. Not speak in full sentences and seem disorientated your quality of life is terrible, awful and impossible. I can not stand it.


James


:?:

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Oh, James, your post really touched me. I wrote one very similar just a few nights ago. I wish I had an answer but I don't. All I can say is "keep fighting" this monster, RLS. Go see another neuro., if meds give you some relief, take them. I was ready to give up, but rose to fight another day. Just try to take it one day at a time.

The other night, I was so desperate, I wrote a post here and poured out my heart and soul. And got a couple very encouraging answers that gave me strength to continue. Just knowing that there are others out there, that understand what you are going through and have went through themselves----maybe even worse. It helps. At one time, I didn't even know what was wrong with me. I felt all alone, and if I mentioned to anyone my pain and sleepless nights, they just looked at me as if to say, "big deal, so you had trouble sleeping". I got to the point where I didn't mention RLS to anyone. But now I tell others as much as I can about RLS. People need to be educated about
THIS terrible THING.

I wish you the best, and hope you find relief very soon. Please let us know how you are doing?

BETTY/WV P.S. I think its a good idea also, to start calling this THING ---Ekbom syndrome. Restless Legs Syndrome sounds so mild, instead of what it really is----a monster.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

James,
I know how you feel. I got disability and yet cannot pursue pleasant things I thought I could when work came to an end. I also have RLS/ Ekbom's, plus tore up my spine in a car accident, and a couple other health issues, so I have to take diff meds for my problems, else I'd go around the bend in my head, I'm afraid. Let's see, perhaps you could try Requip, another poster recently tried that for the first time and did really well with it, had a good night's sleep and her legs didn't bother her.

I take Tylenol-Codeine #3, it's about as mild a pain killer as you can take, and I been on the same dose for years, only had to up dose once. Your fear of those is precisely what will help you not go overboard on those kinds of medicines. I have advised one of my docs to MAKE ME come in and get the drugs, and she watches me like a hawk becuz I asked her to (when I was still sane), and also I go to a pharmacy that is tough as nails when it comes to getting medicine. Anyhow, I'm just saying, don't discount that kind of medicine just yet, keep thinking it over. The way I was able to take feel-good stuff without abusing it is, either I gotta control it or I cannot have it... that is what motivates me to stay on the straight and narrow so I can at least have SOMEthing to keep me from going crazy with the legs hurting and annoying me so much.

Let's see, when my RLS flares up, I put a heat pad on my legs when I'm up watching TV, and when it bothers me at bedtime, I put on knee-high support stockings which restrains the muscles just long enuff to fall asleep and I pull them off in the middle of the night. And do not beat yourself up over being sick. Lots of people are disabled, sick, old, been in a car wreck, have bad legs, have no legs, the list goes on. GO for the home-health care if you don't mind your privacy being invaded, say, once a week. But medicine is the ONLY way to deal with this thing, so hope my couple suggestions help you out. Hang in, we're all in the same boat, becuz RLS untreated can be a nightmare, to be sure.
GG
"It's not how old you are; it's how awful you feel."

Polar Bear
Moderator
Posts: 7844
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

James,

I reiterate all that Dogeyed and Betty have said. With regard to medications my own opinion is that I truely could not cope without them, and at times even with the meds I can have a horrendous night, last night being one of those times. And even when the meds have rls symptoms under control, my sleep is still very poor. But other sufferers are so much worse that when I find it unbearable, I just don't know how they cope.

You wonder if you should see a top rls neurologist?? and if it would be worth it. Would you consider making an appointment to see Dr Buchfuhrer, author of the wonderful book on rls, and the Algorithm. Several on the site have gone to see him.

http://www.rlshelp.org/
This is the link to the web site where he answers hundreds/thousands of emails, he answers them directly, and then posts them on the site.

Mark J. Buchfuhrer, M.D.
11480 Brookshire Avenue, Suite 108
Downey, CA 90241
Tel: 562-904-1101
Fax: 562-904-1105

I got these contact details for Dr B off the rlshelp.org site.

I think his email address to ask questions is somno@verizon.net

It is informative to read through the posts on the site, perhaps you have already done so.
Betty
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

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Hi Again James: I just noticed you were in California. You should go see Dr. Buchfurer in Downey, Calif., he is really an expert in RLS. He has written books on the subject. "Restless Legs Syndrome, Coping with Your Sleepless Nights", is one of them. Very helpful. I think Polar Bear gave you the address, phone, and email address. I wish I didn't live on the other coast because I would go see him. And I have emailed him with questions a few times and he answers back, usually in a day or two.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Dr. Buchfuhrer is a Pulmonologist and Internal Medicine doctor, and he literally "wrote the book" on RLS treatment. I know that LA is several hundred miles away but it might be worth a trek down there. But he does like to get out the big guns of RLS treatment, like methadone or other opioids, you've tried the dopamine agonists and haven't had any luck. He could probably put your mind at ease about those drugs. I know that for myself it's either live with the methadone or live with wicked, augmented RLS, so there's really no choice there.
Susan

James333
Posts: 12
Joined: Thu Dec 27, 2007 2:11 am
Location: California Fort Bragg Mendocino County

Post by James333 »

You are all mostly right. Dr b's book I have read and I meet him at the regional
meeting in San Francisco. I asked him ?'s during break. I probably will buy a ticket and see him now that I can. I hope he can help me. Mirapex and Requip help a little little little bit, But not for mid to sever conditions. I have tried Vicodin as needed and it helps. Problem from it is I have a weak stomach.
(Ulcers from the past a serious one).


Thanks for the support and postings still open to more feedback!


James

:o
Everyone needs to know Willis Ekboms disease

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Hi James: Thats great that you got to meet Dr. B. And I'm glad you are thinking about going to see him. I wish I could. But I hate to fly. And I'm to old to make the trip by car. The last time we drove to Florida, I had RLS for the first 500 miles. We had to keep stopping so I could get out and walk. Then we stopped for the night and the next day no sign of old RLS. That was great.

Hope you are feeling better. Take care.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

Hi James,
I take my codeine mixture on top of a meal. Works just fine, prevents tummy upset. But could be Vicoden is not the best kind for you, so another kind might work better, maybe they have something coated or in liquid form. I took a tranquilizer one time that tore up my guts, and as soon as I got off it and took another kind, I didn't get sick no more. Glad you are getting a grip on this thing once again, that you are considering your options and all. You got a whole raft of people behind you, altho I reckon that don't help when your legs are killing you.
GG
"It's not how old you are; it's how awful you feel."

sarahjj
Posts: 40
Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

James, you are echoing exactly the same things I have been saying this whole week. I fear where my rls will be in 5 years, 10 years....what will they do with me when I'm 50 or 60 and that much worse off than now at 40? And DRIVING!!!! OMG driving is SO BAD! Every time I get in the car I have an rls attack. It is unsafe for me to be driving during an attack because I am distracted from the road and really annoyed/furious/going crazy about my legs. I have almost had several accidents while driving with rls attacks. I've cut back on my driving as much as I can, but I still have to work and get my son to school and back. Its really miserable. The frustration and insanity is just outrageous. My doc has no clue what to do with me. She keeps throwing meds at me "hoping" they will work. But I have no insurance so it is all out of pocket. I am up to about $500 a month in rls meds right now and I absolutely cannot afford that. So I am now having to decide what to cut. RLS is intolerable and yet we are forced to tolerate it. It is true that it is a monster. I sure hope SOMEONE comes to our rescue. They don't even have to be dressed in white and riding a white horse. Just come!

And with that, I say good night.
~Sarah~

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