New, saying hello

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

New, saying hello

Post by pedrime »

Hi everyone my name's Meg, I'm 38, and developed RLS while on Zoloft 13 years ago. First of all, thank you so much for the excellent information. My RLS remits/relapses and lately I could not stand it...then read on this board aspartame is a trigger. Once I eliminated that things improved.

I didn't realize I had a condition when this started in my 20's. Every night before bed I'd do a bicycle-type exercise on the floor attempting to quash the 'heebies' as I called it. Sometimes I drank a few cocktails, not realizing that made it worse. Got married at 30 and my husband complained that I kicked him all night long in my sleep. I wondered what the heck was happening but felt powerless to do anything about it.

A few mos later I broke my tailbone and was prescribed Percocet. I'd never had narcotics before. Not only did the medication eliminate my pain, I noticed the 2nd night taking it that my 'leg issue' was gone! This was the first time in 5+ years I actually felt at peace with my legs in the evening. I was thrilled and I also figured the heebies had to be something more.

So searched 'insomnia legs' on the internet and discovered RLS. Presented my findings to my dr and he prescribed tylenol with codeine, after switching from an SSRI to non-SSRI (Wellbutrin) did not do thbe trick. Ahhhh what a relief. But did not want to be on opiates for the rest of my life, so now just try to manage with diet/exercise/vitamins. Some nights I long for the comfort and instant relief of my old pills. On the bad nights I use heating pads, compression stockings, and sleep on the couch.

Thanks for listening to my story and thanks again for all of the useful information you provide!

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Hi Pedrime and welcome to this group. I am glad that you were able to find the much needed relief.

We love to hear from people as we learn from each other. You have found an excellent support group. It is so good to educate yourself too and you are more than welcome for the info received.

Please keep us posted on how you are doing.

Have a great day.
Charlene
Taking one day at a time

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

Post by SquirmingSusan »

Hi Meg, and welcome to the forum.

One thing you didn't mention in your history is your iron levels. We women have a tendency to run low on iron and that can aggravate RLS. You may want to ask you doctor to check your serum ferritin levels. This is not the same as anemia - you can have a normal hemoglobin level and still have low ferritin. If your ferritin is lower than 50, it could be contributing to your RLS, and you may want to take supplements or eat iron-rich foods to boost it up.

It's good you can find relief without meds, but just know that if you do need something occasionally, there are other medication options besides opiates.

Please see the sticky post at the top of this section of the message board. There are links to all kinds of helpful information, as well as to the Mayo Clinic Algorithm, which talks about treatment options.
Susan

pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

Post by pedrime »

Thank you! Yes I've had it checked and mine is low. I just increased my supplemental intake...trying to figure out the highest dose that is safe. I think I'm gonna see a doc soon to discuss all this.

ViewsAskew
Moderator
Posts: 16068
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Not sure what is safe - I think it's not really an issue because we have such a hard time absorbing it. But, I'm not a doc. I have read that you should not take any iron until you've tested your ferritin - that can be very dangerous.

The docs recommend ferrous sulfate (probably because it's easily available) - 325 mg - 3 times a day. Many of us find that other preparations are easier on us. I really like a preparation called Floradix as it all comes from natural sources and doesn't upset my tummy and has the necessary vitamin C in it to help absorption. It's also expensive :-(
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

I copied/pasted this iron info from www.rlshelp.org Maybe this will be helpful for those wishing to take iron supplements.
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1) Medication to Treat Deficiency States
Iron Therapy
Iron therapy in patients with no iron deficiency has not been demonstrated to be of benefit. However, in patients with significant (and often even minor) iron deficiency states, adding iron may be of very profound help in alleviating RLS symptoms. Iron deficiency has been found in a high percentage (20-25% in some studies) of RLS patients. All patients with RLS should have their iron levels checked as detailed below.

Iron deficiency is usually diagnosed by the resulting anemia (decreased amount of red blood cells/smaller red blood cells), with hemoglobin levels of below 14 for men and 12 for women measured with a CBC (Complete Blood Count). However, in mild iron deficiency states, the hemoglobin may be within normal limits and therefore not indicate the patient's iron deficiency problem. Therefore, more sensitive tests such as direct iron levels (with iron binding capacity) is suggested. An even more sensitive test is the serum ferritin level. For patients with severe iron deficiency (serum ferritin levels below 18 mcg/L) or mild iron deficiency (serum ferritin levels between 18-45 mcg/L), therapy with iron was very beneficial for relieving RLS symptoms. Patients with serum ferritin levels of between 45-100 mcg/L may have some response to iron therapy, but generally not as significant as with lower serum ferritin levels.

Treatment of this iron deficiency should be with oral iron tablets (ferrous sulfate) of 325 mg (5 grain), three times a day. Iron is better absorbed on an empty stomach, but this may cause some stomach upset. If so, then take the iron tablets with food. The other common side effect of iron therapy is constipation (and it also turns the stool black). Metamucil (1-2 teaspoons per day) is recommended to counteract this problem (and the fiber itself has been reported to help RLS). It takes 6 months to replace iron stores, at which point the serum ferritin should be rechecked and iron therapy stopped if appropriate levels have been reached.

Please do not start iron therapy without the consent of your doctor. Taking iron inappropriately can cause serious problems! Therefore, do this only with proper physician guidance.

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One other thing I have read that is not listed above is that when taking iron supplements you should also take with Vit C as it helps the iron to be absorbed into system. I also read some where that you can take you iron tablet with a glass of orange juice for the vit C. effect.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Hi P, Have been away for a while but, a day late and a dollar short, I wanted to say welcome. I would also like to second the fact that if your rls is periodic there may be other medications that could be quite helpful for you. I commend your desire, as I think we all have, to treat your rls without "medication." Sincerely, hope you have many, many days/years doing this successfully. Best of luck.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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