RLS and Iron Deficiency Anemia

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
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sharonf
Posts: 5
Joined: Tue May 25, 2004 5:21 am
Location: Lake Havasu City, Arizona

RLS and Iron Deficiency Anemia

Post by sharonf »

I have had RLS off and on for years. Sometimes it will bother me for a few weeks at a time and sometimes it will go away for awhile and give me some relief. I want to relate my recent experience because I am pretty sure it pinpoints the cause of RLS...at least for me. About four months ago I started having severe problems with RLS every single night. For about two months I didn't have a solid nights sleep and was extremely tired. When I also started experiencing some shortness of breath I finally went to a doctor. Blood tests determined that I had Iron Deficiency Anemia. My ferratin level was only 2! The doctor got me in right away for Iron Infusion therapy where I was given iron intravenously. It took six hours. My levels have not all completely returned to normal yet, but they are greatly improving...and since the iron infusion I have not had any more problems with RLS. About a year ago I ended up in the hospital for blood transfusions when it was discovered that I had lost half the blood in my body. I hadn't noticed any blood loss but one day I simply couldn't walk from one room to the other without being extremely short of breath. After many tests in the hospital it was discovered that I had a large bleeding ulcer. It had apparently been bleeding very slowly over a long period of time and I hadn't noticed any blood. It was also discovered that I had H. pylori bacteria, which is present in a great many adults, In most people it doesn't cause a problem but in others, like me, it can cause ulcers. I had also probably had it since I was a child which would explain the cause of all the "stomach aches" I have had all of my life. I was treated for the ulcer and given medication for the H-Pylori and for several months I felt fine...until the RLS started again about four months ago. They didn't put me on any iron supplements last year and apparently my body didn't have time to properly recover from the bleeding ulcer and blood loss and I wasn't absorbing iron properly. There have been a couple other instances in my life that I was anemic although after short initial treatments it was never followed up on properly. I sincerely believe that the iron deficiency is the cause of my RLS and will certainly watch things more closely from now on. Doctors seem to hesitate to prescribe iron supplements but I've already decided that if they don't put me on some when this is all over that I will put myself on some over-the counter ones...at least for awhile. I am relating my experience in the hopes that it may help someone else.

Heronak
Posts: 113
Joined: Mon Apr 26, 2004 3:45 pm
Location: Juneau, Alaska
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Post by Heronak »

Thanks for your story, Sharon, I'm glad you've found relief! I also appreciate that you say "at least for me." So many things work for one person and not for the next, or work for only awhile.

I was tested two weeks ago for ferritin levels and I was at 12. While in the normal range, it's on the low end so I'm taking oral supplements and will retest in 2 months. I'm hoping it will provide some relief to this miserable affiliction, but in meantime am taking Sinemet to get some sleep.

All the best,

Heron

sharonf
Posts: 5
Joined: Tue May 25, 2004 5:21 am
Location: Lake Havasu City, Arizona

Post by sharonf »

Hi Heron,

I hope that you find relief too. My relief was more immediate since I was so anemic that I had to have the Iron Infusion therapy. Besides the fact that the RLS has gone away it seems so nice to not be so tired all of the time. My tiredness was due both to lack of sleep and the severe iron deficiency. Now that I know what to watch for I'm going to be a lot more careful in the future.
Since there is still a lot that doctors don't know about RLS I can't say that an iron deficiency is THE cause of RLS, but I do believe that it is one of the causes and and is the cause of my RLS. After reading about anemia I see other symptoms too that I had but ignored....thinking that it was nothing important.

Good luck to you!

DONNA C

Post by DONNA C »

I WAS SO HAPPY TO SEE YOUR LETTER YESTERDAY. I FELT AS IF I COULD HAVE WRITTEN THAT LETTER MYSELF. AFTER READING IT I IMMEDIATELY PICKED UP THE PHONE AND CALLED MY DOCTOR AND ASKED FOR BLOOD WORK. I ALSO WENT OUT AND BOUGHT SOME IRON TABLETS TO TAKE DAILY. I AM ALMOST WISHING THEY FIND THAT I DO HAVE ANEMIA. THAT WAY IT CAN BE CORRECTED AND HOPEFULLY NO MORE SYMPTOMS.

sharonf
Posts: 5
Joined: Tue May 25, 2004 5:21 am
Location: Lake Havasu City, Arizona

Post by sharonf »

Hi Donna,

Although it seems strange to hope you have anemia...or anything else...I understand what you mean. At least anemia can be treated. Be sure to tell your doctor any symptoms that you may have. Because I had the Iron Infusion Therapy I now have excess iron in my body, but as soon as my levels return to normal I am going to go on iron supplements myself if the doctor doesn't put me on them. I have already started taking extra vitamen C and vitamen B12 because they help the body absorb iron. After years of suffering with RLS it is such a relief to sleep at night. Good luck to you and please keep me posted on the results.

kathyd

iron deficiency

Post by kathyd »

I am so relieved to hear about the possible link between anemia and rls. I would love to have one GOOD nights sleep. I am going to get my blood tested today and pop a bunch of vitamins.

What exactly is the iron infusion therapy?

sharonf
Posts: 5
Joined: Tue May 25, 2004 5:21 am
Location: Lake Havasu City, Arizona

Post by sharonf »

Iron Infusion therapy is the intravenous (IV) administration of iron. similar to the way they do chemotherapy. It took six hours for the infusion so it takes awhile. They were able to do it on an out-patient basis so that was good. They did a small test dose first and then waited five minutes to make sure there wasn't going to be any kind of reaction before continuing with the rest.
After the infusion your ferratin levels will be very high for awhile and it takes a couple of months to return to normal. That is why they didn't want to put me on any supplements right away. I go June 2nd for another blood test . I had the therapy on April 2nd. and they been drawing my blood every two weeks since then to check my levels. June 2nd should be the last time onless things aren't quite normal yet. They have been getting better each time though. One thing though, if you are going in for some blood tests,I would not take any iron supplements before going in so that they will have a truer picture of things. Sleeping at night again is like heaven!

Anonymous

Post by Anonymous »

How similar this all sounds. I have also had rls off and on for several years, however, it is now getting worse. I several years ago linked up my rls with iron deficiency anemia. When I would get the level up, the restless legs went away. Now I have started taking Paxil CR and it is back. I do believe I am still pretty anemic, but don't have health insurance so have not had my blood checked in a year. I take a multivitamin, an iron supplement and B complex tablet every day, but as soon as I started the Paxil, it came back. Also, I cannot take any kind of "sedative" as it brings it on. Nyquil, etc. does the same.

I thought I would go insane last night with it, I was so exhausted and couldn't lay still. It is a horrible, horrible feeling that most people just cannot understand at all. Glad to find this board!

Anonymous

Post by Anonymous »

How similar this all sounds. I have also had rls off and on for several years, however, it is now getting worse. I several years ago linked up my rls with iron deficiency anemia. When I would get the level up, the restless legs went away. Now I have started taking Paxil CR and it is back. I do believe I am still pretty anemic, but don't have health insurance so have not had my blood checked in a year. I take a multivitamin, an iron supplement and B complex tablet every day, but as soon as I started the Paxil, it came back. Also, I cannot take any kind of "sedative" as it brings it on. Nyquil, etc. does the same.

I thought I would go insane last night with it, I was so exhausted and couldn't lay still. It is a horrible, horrible feeling that most people just cannot understand at all. Glad to find this board!

sharonf
Posts: 5
Joined: Tue May 25, 2004 5:21 am
Location: Lake Havasu City, Arizona

Post by sharonf »

barefootsailor,

I know how exhausted you must be. Until I found out about the Iron Deficiency Anemia and had the Iron Infusion Therapy I hadn't had a full night's sleep in two months. It was awful! My levels are now returning to normal and the doctor doesn't think that I need iron supplements. She feels that the problem occurred because of the bleeding ulcer that I had last year. However I asked the specialist back then about iron supplements and he said my bloodwork looked okay and I didn't need them. That was after I had had received blood transfusions though. Doctors just don't seem to understand RLS, I have had that problem for many years and I'm sure it has been due to anemia each time. They are going to recheck my bloodwork again in September though so at least maybe they'll catch things before they get too bad again. Meanwhile besides taking my regular multivitamin I have started taking additional vitamin c and vitamin B-12, both which help the body absorb iron. I am also going to wait about one more month to let my ferratin level return to normal and then I'm going to add an over-the-counter iron supplement. One that was reccomended is Slow FE, which I have never heard of before. I hope that something works for you soon. If the iron supplements aren't working maybe your ferratin is very low like mine was. It's too bad that the blood tests and iron infusion are so expensive since you don't have health insurance. Good luck.

Heronak
Posts: 113
Joined: Mon Apr 26, 2004 3:45 pm
Location: Juneau, Alaska
Contact:

Ferritin Update

Post by Heronak »

After 3 months taking 325mg ferrous sulphate 2x daily, my blood test from yesterday shows an increase of ferritin from 12 to 55, back in the normal range. My doc instructed my to continue taking it, but only 1x daily.

I am still taking .125mg Mirapex nightly and am happy with the results (no RLS symptoms). Maybe this weekend I'll drop the Mirapex and see what happens. Or not. I hate to give up even one night's sleep!

Heron

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