Meds/life/RLS/ just need an ear...Please someone

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Irena
Posts: 11
Joined: Thu Apr 15, 2004 9:42 am
Location: Eglin...Florida

Meds/life/RLS/ just need an ear...Please someone

Post by Irena »

Hi everyone, it's been a while since I've been here. The last time I was on here was when I was changed over to Neurontin from Sinemet.
This is long so please bare with me, I truly feel like I have no one that understands or am able to talk to about RLS.

I found out after doing some research on the web, because it was only in the past 2 weeks that I told my family back in australia that I had RLS. They didn't understand what it was and made some silly remarks on it, but thats only because they didn't know. But I did find out, both my sisters have it, but not as bad as I do. My mother has had it ever since I remember being a teenager and I'm 39 now. But they don't know and haven't gone to get themselves treated for it. After doing alot of research on the web, I found my comes from hereditary. Thinking back then my first was when I was in Primary School, here in the states they call it elementary school. I was extremely active in all sports on a daily basis.
When I would get the pain in my legs and arms, I just put it down to sports. Then the same in high school, I just put it down to sports.

Then when I was around 18/19 before I had kids, I went to my doctor in Australia about the pain in my legs and she put me on arthritis medication. All that did was make me vomit and and took it's toll on my stomach and didn't do anything for my legs. So I got off it.

Then after my second child was born in 1988, he fractured my tailbone and I have some discs bulging and pinching on a nerve. After that, I just put the pain down to my back and used to strap up my legs and feet so that I would cut the circulation off, until I couldn't take it any longer.

Then I worked alot of shift work throughout my life, which I also read wasn't the best thing for people who suffered from it, but at the time I didn't know any better.

I then started work at the theatre and kept complaining that the theatre must have mites or flees because my legs would itch so badly, but nothing would give me relief form the itch. I also found out with my research, that itching can be a part of it for some people. So that part now makes sense to me.

Then the insomnia came along which caused alot of problems with my first marriage, which ended up in divorce. He couldn't understand why I couldn't go to sleep at night with him.

Now in the states, four years ago I got so fed up I looked up on the web my symptoms and found out what I actually had and that not everyone has the same symptoms. But I had a name to what was going on.

So I took this information to my doctor and thank goodness he knew about RLS. As I also found out not all doctors now about it and now how to treat the patient with it.

He put me on Sinemet *CR* 25/100 1 tablet twice a day. It was heaven for a while. Until it started doing the reverse on me. It was actually making my symptoms worse, so then he put me on Klonopin .5mg 1 tablet three times a day. That worked quite well and I was getting some sleep. He then decided to take me off Klonopin because he said it can be addicting and put me on Neurontin 300mg 4 tablets a day. That wasn't working for me, it caused me side effects which I and my family just couldn't handle.

Then he left and was replaced by a fresh out of medical school doctor. I took my son to her to be seen about his back and I knew she wouldn't have know anything on how to treat my RLS.

So I got to see the head doctor in charge who usually doesn't take patiences anymore and agreed with me that my doctor wouldn't have known how to treat me.

He was thinking in the same lines as myself. What I haven't tried yet is a combination of medications together. So thats what he did.

He put me on Requip .25mg 1 tablet three times a day and also put me on Klonopin .5mg 4 or more my call, at night to be taken.
He also put me on Ambien 10mg 1 tablet at night when needed.

Well I was to be on this for a week and then get back to him. The requip was making me neasea and vomiting and a complete loss of appetite. I took myself off the requip 2 days before seeing him and I got my appetite back and no more vomiting.

So he changed me from requip to Sinemet *CR* 50/100 1 tablet twice a day and left the other two medications the same. The week with the requip I was getting some kind of sleep from the klonopin and ambien.
The second week it just stopped working. I was back to getting no sleep and loss of appetite.

I also learned on the web while doing my research, that alot of RLS suffers suffer from Anxiety and I'm 100% sure I am suffering from that.
He now has told me he has not idea why its stopped working and has told me my body in some people need higher doses/strengths of medications for them to work on them. And I'm that way. Even at the dentist, he finds it hard to numb my tooth and when he evenuatually does it wears off very quickly so he always has to rush the job.

Now this doctor told me he doesn't know what else to do with me and what other medications he can put me on. And has referred me to a Neurologists, which I'll be seeing on the 15th of Dec.

I also on my web research read that the ones who have it from herditary, are the hardest to treat. I just pray he's not one of those doctors who doesn't listen. The one who referred me said to me at first his first priority was to get me to get sleep, where I've found others dont even think of that part of it.

I also read stress brings on the sypmtoms or makes them worse and at the moment there is alot of stress in my home. We have a legal custody issue going on, my step son is living with us, but we are waiting for his mother to sign the agreement to make it official and this has been going on since april this year. Then I have my son who is on Accutane, I don't know if anyone has any knowledge of this medication, but the specialist and msyelf monitor him very closely in all areas.

Then I get told I have Catarats in my eyes, worse in my left than in my right, but I won't need surgury yet, but will later on.

I feel like a guinea pig going from one medication to another. I also think my back condition makes my RLS worse, but refuse to get a metal plate in my back. My sister is on her forth back surgury and if this one doesn't work she could end up in a wheel chair. My husband doesn't agree as well with the back surgury on me.

So which brings me to working. If I'm sitting doing I looking like a crazy woman stamping my feet because my feet start driving me crazy. If I stand for to long, or bend or the simplest thing, my back goes out on me.
So I'm finding it hard to be able to find a job that would put up with this.
Remembering going into a job with lack of sleep, that would go down well.

I sleep on the couch because my husband needs to get his sleep so he can go to work. It's been that way for I think 2 months now. I usually start going off to sleep around 5/6am unless my feet start up on me. I also get day time symptoms.

What I'm not sure of is my arms, I don't get them in my arms, up to my elbows as often as I do with my legs. With my legs they have progressed there way up to my knees. I get leg spasms and when its in my arms, the pain is unbelievable. So the symptoms in my legs are different to the symptoms in my arms, is that normal?

I also have GERD and take zantac and aciphex for that. I came to find out that the zantac that I take interacts with my RLS med's. I can't remember whether it stops the meds from working or what, but I do know they two shouldn't be together.

I feel so alone with this and my only relief I truly get is typing all this down to you all, knowing that you all have the same as me in some way or another. My children don't understand and get upset with me, my husbnd doesn't understand why I don't sleep with him in the bed, but in my eyes I'm trying to get him to get some sleep. Because Im constantly up and down and every time before, he would wake up when I did that.

There's no RLS groups in my area, I would love to attend.
The closest thing I have is this discussion board.

Does it get to any of you like this. Do you get fed up with it all. I even told my doctor when he said he didn't know what else to do for me, I replied back cut my legs off. He said he actually believed me.

Is there anyone else out there that goes through this, or is going through this, or has some advise.


Even after typing this it lifted me up a bit knowing someone will read this and maybe understand, because they have RLS as well.

I hope you all had a great thanksgiving
Thank you again for letting me rabble on.
I'm so glad this place is here.

Irena
:(
Try to make others laugh or smile and try to have a laugh once a day. Try to keep on going even if its a bad day of pain. Don't give up keep pushing and smiling.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Agreed

Post by ViewsAskew »

Irena. . .well, RLS SUCKS! :( . I am typing this at 4 AM as I am unable to sleep and the RLS is rocketing through my right arm in addition to my legs. For me the are does feel different, not so much painful, but heavy. I move it in order to try and release the heaviness.

So much has been written here and on other boards about people not understanding. The other night I was talking about that with a friend who has Lupus and my partner, who has celiac. All of us agreed that other people often don't "get" it. Explaining means little. We all lamented that as humans, many of us seem so insular and unable for a moment to think about what something else would feel like. We all agreed that we would work hard to never to that to someone else. Recently there were some posts on a Yahoo group about this. Here are some of their ideas:

"I would suggest is encourage everyone to ask thier loved one what it is like FORTHEM. What bothers them the most, what helps the most and what they need for support and most importantly how to keep communications open when stress is at the max."

"I often think of Chinese Water Torture, and the way prisoners of war are broken down by being waked up every time they start to fall asleep, until they are literally out of their minds with the need for sleep."

"i still think of daily rls life as drowning . you have to wave your arms and keep kicking or you'll go under . there is no choice but to keep moving . your life is flashing away before your eyes from the lack of quality sleep . keep moving or you'll go under . constant anxiously from trying but constant fatigue from trying and going nowhere . just keep your head above water is like getting naps here and there . take another pill is like a wave washing over you but not getting any closer to shore. take another pill and float on your back for some rest but not getting any closer to shore and knowing that your going to have to start kicking again to keep your head above water . doctors or meds as life guards ? no but they are more like a life preserver . you'll float for a while [napping] but not get back to shore [life as we use to know it]"

There are many other drugs to try; looks like you've taken mostly sinemet, Requip, and neurontin. It is well documented that Sinemet causes augmentation and rebound. I, personally, do not think anyone should take it that hasn't already taken it without problems. The best site is the one often recommended here, the Southern California Support Group http://www.rlshelp.org/rlsrx.htm. The treatment page lists all the meds and how they tend to work. Sounds like you could try other dopamine agonists to see if they work better than Requip (like Mirapex or Symmetrel), you could try the opiates, or some other anti-seizure drugs like Keppra. Last, there are the benzo's: you've tried klonipin, but many have success with lorazepam and temazepam. As you've been through, it's a long and arduous process of trial and error! And while nothing is working, our lives are hell. This site also has a card you can print and keep in your wallet. It will tell doctors drugs you shouldn't take.

Have you had your ferritin levels checked? Should be above 50 for RLSers. Taking meds for GERD can interfere with iron absorption I've read on these sites. Do you take folic acid, magnesium, calcium, a good mega B? Many people report these helping (and others, check out the non-pharm section of this site).

If you can afford it, look into a different bed. We have memory foam and my partner now doesn't feel the ups and downs so I can sleep with him. Other people have gotten twin beds and put them together; the movement is then isolated but you can sleep together.

Good luck, Irena. We do know what it's like. Many of us have been in similar situations.

Ann

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hope Ann is sleeping while I type this

Post by becat »

Good Morning Irena,
Hope this finds you better today. Ann I hope you are sleeping while I'm typing..........You must be exhausted. Hugs to you both, this is a tough one.....but not unfixable, nor undoable.
Irena, I too have been given the RLS gift by both of my parents. A wonderus genetic gift. Most of the people in my family has this to one degree or another. My mother's "bugs" made her itch her skin off more than once in the 50's, having to put into the hospital for IV's to keep her from bleeding out......but it wasn't RLS, yeah right! She now says it's more than possible that it was the stress at that time. Most of my life I've kept silent, not shared, and struggled to deal with it on my own. Not since this year did I find that there is a home for our bodies, heart, and the real me outside of RLS. 40 yrs I've given power and the pain can go deeper than the flesh.
It's my opinion that we all reach a "RLS Hopelessness" point more than once in seeking treatment. It's not depression, it's hopelessness, ...will I ever feel human again? I found hope here, where I am normal and my symptoms might be shared. The life style, mine, known to others. The frustration of living day to day until with this mountain we climb. I found some strenght, a gift from above, to change my path. The education we share, the courage we offer, and the pure power to live better. It's here honey, yours for the taking. We'll help you, like we been helped before. And you'll help us clear a better path for those behind us, the ones to come.
Well, most of us here will tell you that it's more than a pain to be a lab rat. It's costly and it robs our hope. It is a matter of taking the time to figure out what works for your body. There are medications the Docs. give us, that for some have a time limit on how long they will work. There are side effects that are too much for us so we ditch others. But there are things that will work for you. It may take a bit more time to find them. I have been lucky this year and found that I have a choice for now. It was a good ten years coming to me. BUT I HAVE ONE NOW. I'm enjoying the ease that I have been given for how ever long it last.
Ann mentioned the Southern California sight. Not only should you know for yourself the medications we RLSers avoid, but......
I highly recommend that you go to the sight and print off the medical alert card. I printed off several and intend to give one to my GP, my husband, my purse, and any other doc I have to see. I take Aciphex and have no problems thus far.
I also recommend the supplements that Ann has told you about. I'd add an easy to take vitamin C, maybe mixed with a meal to make it easier for your tummy. You need the C for some of the others to work right.
As for your arms, yes mine have kicked in as well. I may not have noticed it until the past year or so. Maybe a couple of shoulder injuries did not help in the progression. It's a different feeling than my legs, heck the rest of my body. I've spent many an hour trying to pop my own shoulder.
As for your hubby, I agree with Ann as well on this. I wasn't one to talk about my problems, nor share them with him until this summer. Going on 10 yrs. of trying to hide how I feel takes alot of energy I simply don't have any more. What surprised me the most is how little he knew about my problems. I'm a good hider, but not for the good of our relationship. He listened and is helping me to fight this now. He's gone to the Doc. with me to back up my story and to back me. Muscle helps sometimes. He's more understanding about why he'd wake to an absent spouse, not feeling it was him. Today we're going to shop for Christmas and birthdays (6 in our families in Dec.). I am going to interview him while we do this. I've heard I'm not easy to sleep with this weekend......hmmmmmm never knew, so we're going to try to figure it out.
Your Quality of Life counts Irena, it just does. Your not alone, crazy, or anything else. You just need to listen to your body. Make the Doctors work with you. Educate yourself as much as possible, so you can help educate those around you. It's better to work toward forward movement with this disorder. Just taking it as it comes will only drive you down. You may grieve your old body, your old life........the dreams you thought you'd have. Go right ahead and do that, it will come at different times. I think it's normal to any chronic disorder, a life changing disorder. After the grief passes, you be stronger, maybe even pissed off. That can be helpful to you. Forward action, HOPE. We all want it. We all deserve it. We can have it. We a bigger voice together and change shall be our call.
I hope today is better for you. A ((((((((((cyber Hug)))))))) to you both.

Ken

Post by Ken »

Irena:

I can't remember when I did not have "leg jerks." I'm 62, so after 50 years with "leg jerks," I discovered. In the past five years, I have gotten really aggressive in my treatment. Usually finding out that I knew more, as a result of my research, than my doctors. I was lucky to have an internist and a nuerologist who read the print outs that I brought them and negotiated treatment. I have tried most of the drug threrapies that you have mentioned. Here is what has finally worked for me: Neurontin 300 mg 2 times per day and Hemocyte Plus (iron supplement). I take one Neurontin and the Hemocyte Plus around Noon and the second Neurontin at bedtime. This is the closest to a normal life I've had years and years. I am convinced that RLS is NOT a sleep problem nor a muscle problem, it's neurological or quite probably a chemical imbalance, which is why the iron helps. If your practioner refuses to let you participate in your treatment, find another medical practioner in a hurry. Good luck.

sthomp66
Posts: 28
Joined: Mon Nov 29, 2004 7:56 pm
Location: Kansas City, Missouri

Post by sthomp66 »

Irena: You're not alone, nor are you crazy, but I understand thinking you are. The drug that literally saved my sanity and quality of life is Ultram(tramadol). Ask your dr. to prescribe for you to at least try. There is generic form now which helps keep the costs low. However, I'd pay any amount for this drug. Your dr. should have samples to give you. People either love this drug or hate it, some people it makes their stomach really upset. But if you're one it works on, you'll thank God for it.

Good Luck!

Shelley

Irena
Posts: 11
Joined: Thu Apr 15, 2004 9:42 am
Location: Eglin...Florida

Thank you to you all so very much

Post by Irena »

I was put on Ultram(tramadol) for my lower back problem and it really didn't do anything for me. I've been on the Neurontin and that did me no good either, if anything, it really gave me some bad side effects, that when I was put on Klonopin instead. My first medication was Sinemet *CR* which aparently the *CR* stands for slow release, which I only found out with this last doctor.

I've had blood tests done repeatedly for iron, B12, B6, hormonal and that always came back normal. The only test that they don't understand and keeps coming back the same, is the way it was explained to me, so that I would understand it, instead of being told in medical terminology which he first did. Aparently my red blood cells are fat and which makes them old, which in turn they aren't renewing themselves as they should be. They can't seem to find out why. Which I do know is probably why I feel tried all the time, but can't sleep because I want to chop off my legs, first and if my arms start then my arms as well. I have to see some humor in this for myself.

You all have no idea how much you made me feel by just having you all read my post and replying back. I felt like I had sank and normally I come back up, but this time I was finding it very hard to get back up.

I have Military insurance, my husband is active duty and has only just returned from Baghdad. The insurance we have only allows me to see the doctors on base here. I am very limited to what and where I can go and be seen by. Which frustrates me. I've also noticed that when my husband gets seen, and needs medication, they give it out, no problems. But when its a dependent, they hold back on certain med's or don't even offer it to you, as they would for the active duty.
As for getting an appointment, between 6-7am only active duty can call in and get an appointment, after that time then the dependents can call in and 99% of the time all appointments are taken up.

Can't afford to get another insurance right now, due to going through legal custody of my husband's son who is living with us, but it's just taking its time, it's been since early this year.
After the hurricane that hit here, my 2 kids lost there jobs because the place closed down and one got another job, but the other hasn't which then has put more expense on us. Which is fine. There schooling comes first.

But I truly want to thank you all so very much, you really have no idea how good it felt to read your replies. I actually sat here reading them crying with joy, not sadness. I didn't feel alone as I usually do and I felt understood.

This time I just found it hard to lift my head up and keep going on.
Everything was just too much for me all at once.

So with an extremely thank you thank you thank you for all your kindness.

Irena
Try to make others laugh or smile and try to have a laugh once a day. Try to keep on going even if its a bad day of pain. Don't give up keep pushing and smiling.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

No THanks Needed

Post by becat »

Hi Irena,
First of all, Thank you and your husband for your service to our country. Yours, is the support and care of your family and your husband. God Bless You Both.
You know I'll be the first to say No Thanks is needed here. We are all here because we're living with the same stuff. There isn't a day that goes by since April that I wasn't sure that I had people that knew me. It's been such a comfort to know that there were others that lived the same life style and hiding all that comes with it is not an issue. Your right to think it feels good to be here......think about it, your normal here, like the rest of us. We are always here to listen, share, and help out where we can.
Maybe we were brought together by RLS, but what a family we are now. We're sleepy, pained, and stressed somedays, but there's always someone willing to row the boat when you feel you can't. The RLS boat that is.......We know that most people (doctors included) might not see this as a big deal, but our lives and bodies prove daily that it can be.
About your being able to see a doctor or not...........isn't there still a thing called Champus? It use to pay for what the military could or would not cover. I'd be interested to know. If you really have problems I'd try a couple of things. You can talk to your CO and see if he/she can help with the process......as in I need to see a specialist can you help me find a way to do so. You could talk to a dependent affairs person to ask the same. I would ask and ask til they got the hint that you need some help.
You may use the heart strings of a local Neuro in town. "gosh, my husband is in the military, just back from Iraq......I was wondering if you have a discount for the military or a drawn out payment plan.????" You never know who will pop out and help.
If you get an off base prescription will the base fill it? If not, always tell any doctor that cost is an issue with medications. They have samples of some stuff and may be able to offer a generic. You may want to price shop your medications as well. Different chains offer different prices. I always count our medication when filled as well. A certain large chain repeatedly shorted my father for many years on heart medication. Just a couple of thoughts here.
Hey Irena, your welcome here anytime, we're glad to have you. Hope it gets better soon.
Best wishes.

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