Sticking to RLS

I finished licking my wounds already.

I had my feelings hurt on here.

Moving forward, I am going to follow the rules

and stick only to the subject of RLS.

Mine has been severe lately. I have met augmentation

with my medicines so I am returning to my doctor on

Tuesday with hopes of moving to another type of medicine.

My iron levels have fallen quite a bit and I don't know why

I have had zero bleeding of any kind.

I am guessing that it's because of the medicines that I am taking

for RA.

I am on Chemo and I am taking Simponi for RA. The iron

fall, I am sure, is my biggest problem.

I am telling my doctor that if he doesn't prescribe a narcotic,

I am going to the streets to get it because my life

is not worth it if I have to suffer like this.. my legs won't

settle down long enough for me to get relaxed at all.

Intense massage by a professional made it worse. I did the

acupuncture, it was a waste of time and money.

The only thing that did help was getting help stretching out my

hip flexors.. and that lasted as long as the stretch did.

I visited the chiropractor who said that my back is out. I spent

a lot of money in the past 2 months but it didn't help my back,

my legs or my wallet... the only good thing is that I walked

away with quite a bit more energy... so he was right, something

is/was out on my back.

I did get a hold of a very good pain relief pill (my daughter

gave me one of hers from her past surgery) It worked like

magic.. as a matter of fact... She offered me another and

I turned it down because she has 8 left and when those are

gone, I will be stuck in the same boat. My legs were totally still..

I was able to read a book for 25 mins before my eyes refused

to stay open. I haven't been able to do that in a long, long time.

Two months ago, I had quite the blood-clot in my leg.. It formed

because my body had so much inflammation. It didn't even hurt.

My doctor noticed the bright red and asked me if it hurt.

He then ordered a test and sure enough.. I was stuck on

my back for 10 days in the hospital waiting for it to dissolve.

My Restless Legs acted up so bad.. lucky for me, I was given

muscle relaxers that worked like a charm to settle my legs.

I slept like I missed sleeping for a week... I was actually upset

that my clot dissolved, that meant that my legs would suffer.

*they have been going nuts since.

Sorry I was such a little spoiled brat who threw a tizzy at

2 people who rubbed me the wrong way... I'm over it already.

[Hidden]

you were not acting like a spoilt brat you had your feelings hurt, good for you for sticking around, i most certainly am

[thedragon]

Yikes........so good to see you.....I am over the moon that you are back...we have lost so many of our favourite members recently.....so good on you for not giving up on us!!

It sounds like you have had a really horrible time..I wish there was something I could say to help.good luck whenyou go to see your doc I hope you get the help you need x x x. Stay strong

[Hidden in reply to thedragon]

=) You are a sweetheart.

[Hidden]

Hi Yikes, good to see you back hun..... You sound like you have been through the mill lately, so sorry you have been having such a hard time. And i for one, enjoyed your posts and i missed them.. Wish i knew how to help you... But come here anytime you like and vent away....

[insect]

Have you tried laying with your legs elevated about hip level? That helped my restless legs for years but of course, in the night, I would then get pins and needles: or my legs would fall onto my husband <rolls eyes>. Narcotics won't help long term. Other problems develop with regular usage but I can understand your reasoning. When I had bad panic attacks I would have taken heroin if I had thought it would 'cure' me so that I could face the World. My very good GP prescribed medication for irritable bowel syndrome to stop the intense 24 hour nausea as well as betablockas to aid the anxiety. Fortunately! :-).

Which over the counter medications do you have access to? Maybe building up a working relationship with a pharmacist at a chemist/drug store to discuss the merits of the various combinations? Some can be taken 'over the limit' for short periods of time and a pharmacist can give advice. Also this condition is linked to low potassium levels - I found that eating 2 bananas daily every day eased symptoms and after 5days that awful feeling in the night had gone.

How long will your chemotherapy treatment continue for? Some conditions can be made worse/eased when this is taking place. RA = rheumatoid arthritis?

[Hidden in reply to insect]

Something with the hip flexors helps me. I am currently in physical

therapy to regain some strength and to "rid" myself of nervous legs

as my surgeon calls them.

I am on massive amounts of vitamins prescribed from my doctor.

My diet is changing again... Just that very small amount of chemo

has greatly reduced my appetite.

I must admit that after stretching those hip flexors, it wards off RLS

for at least an hour...

Yes, those panic attacks were wrecking my life.. Yes, I am on

the Paxil to control that. It works wonderful and I would rather

have RLS than live like that.

The chemo is small (compared to cancer patients) The purpose

is to rid the body of inflammation. It works quite fast..

[insect]

should read "elevated above hip level"

[courtland14]

My RLS was helped hugely by taking magnesium phosphate which is readily available. (health food shop, supermarket). If you've not tried it's worth it. I often took it with a cocodamol with the last does of the day. And now i've stopped taking it there's no return of RLS - mine was not a long-term case as many on here but a nasty bout after a back op as in past years I've only had intermittent RLS. This was a nasty round but the impact of Mag Phos was instant. Good Luck Yikes.

[Hidden in reply to courtland14]

Codeine is not available over the counter. The doctor is so

reluctant to prescribe narcotics because if they do it too often,

the feds are all over them.. (Boo....cry)

Vicodin almost completely puts my RLS in it's place.. again,

the doctor is willing to prescribe less than I need on a regular

basis so I have to choose when I take what they give me. (sad,

sad, sad)

I may get to go see a pain specialist... My sed rate is over the

top meaning that my blood-work shows that I have severe pain

as well as RLS. .. I will find out later this week if my insurance

company will allow it. =)))

[daisyw]

My RLS has been so much better ( I even regularly get some sleep) since I have been taking ferrous sulphate tablets. I hope to have a blood test next week to see what level I am at now from 8 weeks ago when I had a reading of 6

Best thing I ever did and i wouldn't have been aware of the importance of this without reading it on the RLS blog

cheers

[nightdancer in reply to daisyw]

Good luck on your test. A 6 is really low. So, 8 weeks may not have gotten your levels up too much higher, as it usually takes a long time to get your ferritin up even a few points. Of course, it all depends, but on the avg, it takes a few months to get that number up depending on how your own body stores iron. Here's hoping! And, I hope it does help you. Weird how some people respond to iron treatment, and some do not. I had iron infusions done in the US, and got my ferritin way up there, without overloading, and my RLS did not seem to care one bit. So, good luck!

[daisyw in reply to nightdancer]

Thankyou for your good wishes. I was unable to deal with any of the other meds prescribed, so I am so glad i had some success with this. It's not perfect but a hundred times better than before. I had all the other stuff checked as well (magnesium, B12 etc) and all seems to be ok with them.

The only thing i cannot understand about the whole thing is (please don't laugh) it works better if i sleep with my head at the bottom of the bed and feet at the top. I'm not a believer in Feng Shui either lol

What works for some is useless for others Heigh Ho!

[Hidden in reply to daisyw]

No ones laughing, i have heard of many a person who finds sleeping the other way round on the bed works. If it works do it, thats my motto.

[daisyw in reply to Hidden]

My motto too

[Hidden in reply to daisyw]

Goodness, a level of 6 usually means blood transfusion over here in

the states. You must have been very tired, cold. Wish that we

had a better way to monitor the changes. At level 8, I was given

2-4 pints of blood...happened to me 2 times this year in surgery.

My doctor did a full panel and I am in need of some serious vitamins.

I eat enough, It's just not very healthy.. (so I am told)

[blacknwhitecat]

How any of you guys who suffer SO badly with RLS get through life without out throwing a 'fit'

every day of the week, I don't know !!!

I think you're all amazing !!!!

When I lived in the US it was a joke in our house that my husband would call out to my son to " hide the AK 47" cos I was making such a fuss when I couldn't sleep with the RLS but that was how mad & upset I would get !!!!!!!!!!

I have just been talking to my daughter on Skype & she's sending me more tablets to help !

[Hidden in reply to blacknwhitecat]

careful how you announce that. =)))

Sad that you can not get some additional help in finding a

sleep solution... I am on board with you 100%.

You do what you've gotta to get that sleep.

It's so different than feeding an addiction.

Too bad it doesn't get the respect.

[Hidden]

Its a matter of survival i guess, Finding what will work, even for a little while, beside the meds, which sometimes dont work, gets us all through each day and night. I am sure most of us, throw a fit at times. Getting mad at it is a good coping method. Altho down days do happen.

[Hidden]

Some have more than just RLS to cope with, so it makes it even hard to cope then i think

[Patsy11011]

I have noticed since joining this forum that a lot of the members have other medical problems as well as RLS. At my Drs appoint. this week I mentioned this to him and also that fact that some people tell me that having their legs elevated helps their RLS, I asked him how come this makes it worse for me? He said that people that are helped by having their legs elevated are not truly suffering from classic RLS where as mine is "classic RLS" which is not helped by this. There are so many different types of RLS and reasons for RLS, if you are suffering from other illnesses magnessium and iron tablets will help the condition, you must persist with these meds for a few months, and high doses. If you have kidney related illnesses RLS will last as long as you have the illness. If you have classic RLS it's a matter of finding what suits you. A lot of my information comes from my Dr. who attends conferences all round the world concerning RLS. I hope this information helps some of the members.

[Hidden in reply to Patsy11011]

Iron doesnt help all of us, ive had iron pills, before, more times than i can recall, but my iron levels never improve, allways low ferritin when im tested,

I have a few other health problems also, and magnessium doesnt help me, my RLS is Primary, runs in the family, and ive had it since i was 16-17 years old, plus i have it 24/7,

[Hidden in reply to Patsy11011]

There are two "types" of RLS, one is Primary RLS, that is the inherited type. Then there is Secondary RLS, thats when people have a underlying condition, taking iron most probably helps with secondary RLS, their underlying condition is low Ferritin Level, which can when taking iron pills can help with RLS. Diabetics can develope RLS, Pregnant women can develope RLS. So lots of reason why people can have RLS. But i only know of two types of RLS. Lots of different levels of RLS, from mild to severe.

[Hidden in reply to Hidden]

I agree with this, ive allways been aware of 2 types, but was a bit unsure if i should say so, my RLS is Primary, and yes on the levels also, some of us get it mildly some get it 24/7

[daisyw in reply to Hidden]

I have always thought that I have the inherited RLS because my mother and her sister suffered quite badly. Both my sisters have it also and we tend to walk the floor. I have had RLS intermittently for about 40 yrs or so, it only getting critical and screamingly horrible, affecting my arms also during the last 5 years. Therefore I cannot equate the reasoning as since I have been taking ferrous sulphate I am much improved, not perfect I might add, but definitely improved

[Hidden in reply to daisyw]

I guess there are always exceptions to the rule.

[daisyw in reply to Hidden]

Agree, if it helps it's a bonus

[Hidden in reply to daisyw]

i did say, iron does not help all, so therefore it will help a few, thats one of the nasty things about this illness, no two people are the same, maybe one of the reasons that there isnt a cure for us yet.

[daisyw in reply to Hidden]

Agree

[Hidden in reply to Hidden]

If iron was the only answer, we would all be

celebrating a cure. It never came close to

solving my want to move my legs around all

night long. My legs pay no attention to my

iron level, I think... haha. =)

[Hidden in reply to Patsy11011]

If that helped me, I would have my legs help up by ropes hanging from the ceiling.

I have been known to walk my feet on the wall (it's cold, new sensation) as I

am laying on my bed crying from lack of sleep.

I am also a person who keeps feet flat on the floor next to my

bed and I let my top half lay on the bed until I fall on the floor.

I can stretch out my legs that way to the point of pain. Pain

feels better than the fight to keep my legs still.

[Patsy11011 in reply to Hidden]

These are exactly the same things that I do, (even feet on the wall crying!)

[Chatline]

Yikes, I am new on this forum and so I do not know about what hurt your feelings. But let me tell you, There is no one that understands throwing a fit more than I do. I have been there and done that, but I have put up with this for so long that I just give up on the fits these days. You certainly do have more to deal with than I do, but one fit I do feel like throwing more than anything is the stupidity of the name that is given this disease. RLS??? What? Forget the Restless legs....it is in my whole body day and night. And it is not restlessness, it is a horrible sensation that will not stop many times even when moving around. I find it impossible to describe really. And you name the remedies, I have tried them all. Hydrocodone will help somewhat, but it is addictive. I had one doctor who would not give it to me. He didn't have a clue as to how to treat my condition. I am now on the Neupro patch and Horizant together. Alone they do not work. Together they are working enough for me to get some sleep, but I have to take a sleeping pill most nights. And sometimes even a hydrocodone. I still feel it slightly in my body (arms and hands along with legs as well), and I am sure augmentation will set in one of these days. I seriously do not know what I will do then. I literally was not getting more than and hours sleep a day before using these latest meds. This disease controls my life. I cannot commit to anything because my lack of sleep keeps me forgetful, cranky, unreliable.

[Hidden in reply to Chatline]

I really do like you....

I believe you.

I hope that soon you get some much needed rest..

What in the world is Horizant?

You must live in the USA where they prescribe the Hydrocodone.

Our poor dear friends in the UK do not have this option.

Yes, I can be very unpredictable. I wish that wasn't true of me.

[Chatline in reply to Hidden]

Horizant is time release Gabapentin.

[Hidden in reply to Chatline]

Oh I was on Gabapentin but I gained weight

super fast on that. It wasn't the slow release.

I was taking a moderate dosage, occasionally

the max dosage as prescribed.

After I was pulled off of it (because of the weight

gain, being so tired) then I had a most difficult

time getting that extra weight off. It wasn't just

a few pounds and I was on that one for a good

4-5 months.

It did work good for most of my treatment.

[Patsy11011]

Chatline I know exactly how you feel, the fear that one day nothing will work haunts me every night. I get it in my arms also when I try to withdraw from the fentanyl patches, and it is worse than the sensation in my legs. Ellise and Tallula, you are right, there are 2 types of RLS. I worded it incorrectly, the primary RLS affects people differently making it seem like they are different types. When I asked about "raising my legs" that was when my Dr told me that true RLS suffers would not benefit from this because you need to have the blood circulating down to your feet.

[Hidden in reply to Patsy11011]

OOOOHHHH...so your doctor is saying that raising your legs

will do nothing for RLS...??? We are just trying to hear you

correctly... I am so surprised what comes out of doctor's mouths.

[Hidden]

I am a bit confused by your doctors statement on needing the blood circulating down to your feet. As far as i know blood circulation hasnt any thing to do with RLS. RLS, is neurological,

[Hidden]

?? RLS is neurological, it has nothing to do with circulation , dont know where your doctors coming from here ??

[insect]

I found GREAT relief by sleeping with feet above my head, i.e. on the headboard. Or on top of 3 double blankets folded under my side of the mattress. Or as stated above, laying on the bed with legs hung over (a bit like carpal tunnel syndrome relief) until I got pins and needles in all of the positions. The GP who says it is 'not' RLS needs to suffer him/her self <rant>. When I was owned by a dog who liked 3 walks a day and the further the better, there was no rhyme nor reason whether I had RLS at night - or not. The only thing I have found is to keep an eye on my diet i.e. eating bananas = upping potassium levels.

[Hidden in reply to insect]

Potassium is a consideration as well? Oh boy! I am

missing the boat on that one. =/

[nightdancer]

RLS is felt in the arms and hands by many, many people. That is why we strongly suggested Restless Limb Disease for a new name, but the US foundation is going with WED, Willis Ekbom Disease. That is a WORSE name, IMHO. how long does it take to explain that one? See my blog on it. LOL Restless Legs may not be the right name, but WED is not either, especially when it is only being used by SOME orgs. in the US and Canada, but not the rest of the world, Chatline. Probably 80% of us get it 24/7 in all extremities. And, let;'s emphasize very clearly here that RLS has nothing to do with circulation at all, and putting the feet up on the headboard or up against the wall does help some people. It makes no difference where your blood is running, because RLS is neurological. just saying that sometimes our doctors think they know the answer, or just do not know about it, so he is giving the wrong information to you about circulation. Glad to see you posting again.

[Patsy11011]

Again I am wording things incorrectly!!!!!!! I am very well aware that RLS has nothing to do with circulation and that it is neurological, I've had it for 45 yrs!!!!!!!! It's to do with the message being transmitted to parts of the body, the minute I put my legs up, Bam!! RLS! I sometimes have to hang them over the bed. My Dr travels the world attending conferences on RLS and is one of the top Sleep Disorder Doctors in Australia.

[Hidden in reply to Patsy11011]

You are lucky to have a doctor who is so educated about

RLS. There are a few around me who believe that RLS

is from lack of exercise. I'm doing physical therapy to

stretch out those limbs. (feels good but it's not the answer)

[nightdancer]

I have many RLS friends in Melbourne.

[Patsy11011]

I live in Frankston on the Mornington Peninsula, do you know the suburbs? we don't have any RLS group in Melbourne that I know of. I know about the stretching Yikes I spend a lot of time stretching those legs!!

[Hidden]

I found a group for RLS that meets in person. I have not attended it yet.

I sure don't know Melbourne..

To be honest, I would have to look Melbourne up on the map.

My mind drew a blank..

It's lack of good quality sleep and a big dose of Advil.