If your new, you can help too!

[becat]

Please take a moment and read this link.
Your voice counts and we need your help.
Thanks in advance.
We're stronger and louder together.

Quality of Life

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=603

[becat]

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[kjneill]

HI, I HAVE A SEVERE CASE OF RLS AND HAVE SINCE I WAS 5 YRS OLD, UP UNTILL 3 YRS AGO I NEVER KNEW A NAME AND WAS ALWAYS IGNORED BY DOCTORS, I AM TAKING METHADONE AND CLONIPIN AND HAVE FOR 3 YRS NOW, BUT THE DOCTOR I WAS SEEING MOVED AND THE REPLACEMENT IS SAYING SHE DOESN'T THINK SHE CAN KEEP PRESCRIBING, OBVIOUSLY SHE DOESN'T UNDERSTAND LIKE MOST DR.S ,I AM SCARED TO DEATH, I USED TO ABUSE BEFORE I REALLY UNDERSTOOD THE MEANING OF ADDICTION, NOW I DON'T FEEL THE MEDS AND ONLY TAKE THEM AS PRESCRIBED, THE THING IS I BEAT MY LEGS BLACK AND BLUE, I BEG MY FAMILY TO KEEP PUNCHING ME AND OF COURSE I SCREAM FOR DAYS WITH NO SLEEP, I OVERCAME THE ABUSING MEDS AND NOW THAT I AM ONLY AVOIDING GOING THROUGH WHAT I KNOW IS TOO MUCH AND I WOULD RATHER DIE, I NEED HELP, REAL HELP, MY DAUGHTER IS 7YRS OLD AND 4 OUT OF 7 NIGHTS SHE CRIES WITH HER LEGS HURTING IT KILLS ME, I HAVE TAKEN THE REQUIP, DIDN'T WORK, OTHER DOCTORS PUT ME ON MEDS THAT MADE IT WORSE INSTEAD OF ADDMITTING THEY DID'NT KNOW A THING ABOUT RLS, FOR ME OTHER PAIN PILLS DON'T WORK, AM I A HOPELESS CASE, I'M SCARED FOR NEXT MONTH TO COME WHAT WILL HAPPIN TO ME, THE RLS IS SO BAD IT NEVER STOPS, I WON'T BE ABLE TO FUNCTION MUCH LESS WORK, IF THEY COULD FIND A CURE I WOULD BE GLAD TO GET OFF MEDS, CAN SOMEONE HELP

[Penguinrocks]

Hi there kjneill,

I sure do know where you are at with the screaming in pain and waking you up at night. My 14 year old is also complaining about her "growing pains". And I also don't want to see her in this kind of pain.

Just a suggestion, but have you ever read the posts about sleeping with soap under your sheets? A LOT of people claim that it helps them out.

I will be starting Hypnotherapy on Wednesday of next week, May 18th and I will be posting here as to how that works out for me. Maybe you can try the soap thingy, moist heat to relieve the tightness sometimes helps too.
Just some suggestions. I sure am sorry that you are going through all this and I sure do wish I could offer up the cure.

Loves
Penguin

[ViewsAskew]

KJ,

Hope it gets better soon. Please write a letter to Dr Buchfurer at rlshelp.org. He might have some advice that will help you. If you post the general area where you live, one of us may have a doctor that we know will help.

Ann

[ANGELGIRL]

Hi guys I see you are going for hypnotherapy. I have gone twice for hypnotherapy. I am new to the site but have been through alot and have alot of medical problems. I have chronic pain froma car accident 2 years ago. I had a plate and 4 screws in my neck at that time, l shoulder supraspinatus tendonitis and a partial torn rotator cup- which turned into fibromyalgia. I was put on antidrepressants and had severe twitching during the day and at night. I had sleep study done 248 kicks in 3 hours of sleep, no rem sleep and increased alpha waves when sleeping. My phychiarist said my medication did not cause twitching. When I saw my pain management doctor in suggested going to hypnotherapist along with PT, Massage Therapy and a new kind of muscle stimulator. My experience with hypnotherapy was very positive. I have a large muscle knots that trigger points, botox or anything seems to help. I was depressed becasue I had a pet shop I had to close becasue of accident and I'm just 40 and can't do much of anything and have a hard time excepting this. When I first when I wasn't sure what to expect but I explained my situation and he listen very closily to what meds I was on and the lack of sleep and my medical doctors frustrating me. We first talked about anger and told me to name someone who really pissed me off. Of course I picked the 19 year old kid who hit us broadside in the accident. He thrn moved out of his chair and told me to tell the kid off- tell him what he's done to me and my husband my business my life. He gave me a towel to twist to expell my anger. The hypnotherapist cried with me as I let all those feelings out we even ran out of tissues and had to use toilet paper. He then hyno me to try to relax my muscles expell my anger. He taped the hypnotising part and told me to play it twice a day when no one would interupt me. When your hypnotized I knew what i was doing and aware of questions being asked but your mind to to a area when you let your guard (if you know what I mean) nothing blocks your feelings. I have been playing the tape at bedtime and it seems to help me to relax and usually don't get to the end of the 15 min tape and I'm asleep. As far as the twitching I was put on Mirapex an see some decrease but I need to get off antidepressants. I just weaned myself off Seraquel which I found interesting was on your Medical Alert Sheet as a drug that causes increase in plms. You wonder how informed these doctors really are. The hypnotherapist told me I have alot of anger built up and I need to physically need to release it whether get a tennis racket and beat your bed or what I do is I have one of thoses pool noodles and cut them is half and go outside and beat on a picinic table. This sounds stupid but if your under alot of stress it helps.

[Penguinrocks]

Thanks Angelgirl.

Sounds like a very good therapist and a very good session!

I can't wait to get started this week! It's hard for me to tell lately what's worse, the fibro or the RLS.

Loves
Penguin

[ANGELGIRL]

I know what you mean. Some days when I wake up my pain is unbearable and I think I've slept pretty good. Other days I sleep but I don't really sleep becasue not getting REM sleep. I've been having problems driving and I am at the maxium of Provigil to keep me awake. It hits me all at once with no warning. One of my doctors wanted to put be on sleeping pills. I feel I need to get off some of the meds I'm on -not add more. I'm on 9 different meds a day. I feel I take pills to wake me up and pills to make sleep and the meds work against each other. Getting back to hypno- my regular social worker is pregnant and will be off for 4 months she suggest continuing therapy with hypnotherapist instead of starting with a new social worker from day one. I live in Pennsylvania and we have a real shortage of doctors because of lawsuit problems I'm sure you've seen on TV. Availability for an appointment with a doctor or other appointments are usually 3-4 month wait. I have health insurance but my hypno doesn't take any insurance but I don't have to wait for an appointment and I truly believe he's helped me more than alot of other doctors I've seen. I feel its worth it to me to pay for the appointment. I think you'll find some help with hypno- I'm not sure if you said you had a stress problem or anxiety. What ever problem you have I hope you find peace with the hypnotherapy. I was lucky to find such a great , compassionate hypno thanks to my pain management doctor. My pain management doctor also sees the same hypnotherapist and the hypnotherapist also teaches tai chi at his office for his office staff to relieve ofice stress. I'm also lucky to find a great pain managment doctor. I had 1 before this who really pushed me over the edge- her comment was I don't know what happens to you once you leave my office. This after waiting for insurance approvals for trigger points, botox and epidurals- and waiting for 3 months to find out nothing was done even when you call the office once a week to check on it. The office kept blaming my insurance company- I finnally called insurance co. found out no paper work for claim never done. I'm starting to get on a roll- sorry. It's hard to believe the state of our health care- when you sufer in pain and people don't care or just drop the ball. Well I wish you all the luck in the world and I think this will open a new door of healing for you. Go in with an open mind and start your healing process. It may be emotional process to let go of those feelings but believe me it's worth it. My hypnotherapist told me You have to love yourself nomatter what kind of physical or emotional problems you have- except yourself as you are and love yourself.