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[Sally]

I have searched and searched for a diagnosis. I was diagnosed with RLS awhile ago but was told there was more going on. I have a lot of achiness, fatigue in my legs along with the movement. Do other people have pain associated with RLS. I also feel like there is ice running through my veins - is this too a symptom? I was told I had fibromyalgia but I am thinking it really is all RLS. Any thoughts?

[Penguinrocks]

hi Sally

I have both. RLS and Fibro...and the pain is so very real!!!! especially now in this heat and humidity! just makes me wanna die....but anyhoo...

You could have both....find a good Neuro and Rhuemy and make them work for you ....

search around on the site and find a ton of information....Ann likes to find great things and post them! (thank you Ann) and welcome to the family!

we are all one here and when our one voice is heard, we'll make a HUGE roar!

Penguin

[ksxroads]

Dear Sally,

As for the ice running through your veins... could you explain this in more detail? Do your fingers turn white or blueish, the fingers and toes will feel cold and numb? I know someone on the board, is it you Cornelia that has Raynaud's syndrome... for more on this syndrome you can check out the National Insitute of Healths info at
http://www.niams.nih.gov/hi/topics/rayn ... 25fs.htm#2

I was diagnosed last year as having fibromyalgia... this was during my search for a doctor who would be willing to review the Mayo Clinic Algorithm and work with me...

Which came first the fibro or rls...the chicken or the egg... Secondary RLS can be related to quite a few primary illnesses or injuries - Ann has a listing of secondary RLS causes at the following section...

http://bb.rls.org/viewtopic.php?t=1068

At the fibro diagnosis time I had been subjected to many of the medications which are known to worsen RLS, as well as having been prescribed DAs and having terrible side affects, my body was extremely sensitive to touch at that time.

There are some people who have seasonal RLS, and primiarily it is the summer months in which they experience the RLS sensations. During the colder months they do not.

My physical problems are 24/7 year round now, and I do have pain, yet I have noted that my RLS is definitely worse in the summer.

Recently have been experiencing flares... is it fibro or RLS. The deep bone pain is overwhelming and I do find some relief if I am able to move some, yet the muscle fatigue and weakness accompanied by burning pain is overwhelming at times and it is extremely difficult to move...

This following article here is a quote...

Connor's study found that a specific receptor for iron
transport is lacking in patients with RLS. When that mechanism malfunctions, enough iron gets into the brain cells to keep them alive, but not enough so that they function optimally. That missing iron may cause a misfiring of neural signals to the legs creating the creepy-crawly feelings.

makes me wonder if for some of us it does become more than just the creepy crawly feelings, pain from the muscles not adequately getting the neural signals they need to process oxygen etc to work efficiently ...

Chicago, Ill. -- Restless legs syndrome (RLS) may sound like something right out of a 1950s horror flick. And for some sufferers, it is. This affliction causes an irresistible urge to move the legs often accompanied by creepy-crawly sensations in the legs. The sensations are only relieved by movement, and become worse as the sun goes down. Night after night this sleeplessness occurs for the millions who suffer with RLS and their partners.

Because little is known about what causes RLS, researchers at Penn
State College of Medicine and Johns Hopkins University went looking for
answers. The team, led by James Connor, Ph.D., professor and interim chair, Department of Neuroscience and Anatomy, Penn State College of Medicine, performed the first-ever autopsy analysis of the brains of people with RLS. This research, presented June 5 at the Association of Professional Sleep Societies meeting in Chicago, uncovered a possible explanation for this syndrome.

"We found that, although there are no unique pathological changes in
the brains of patients with RLS, it appears that cells in a portion of the
mid-brain aren't getting enough iron," Connor said. "It was a relief to many that there was no neurodegeneration, or loss or damage of brain cells, like we see in Parkinson's and Alzheimer's disease."

The discovery of a physical cause for this disorder establishes it as
a sensory motor rather than a psychological disorder. Because cells aren't
lost or damaged but rather iron-deficient, there is more hope that
treatments can be developed.

For the study, Connor examined brain tissue acquired through the
Restless Legs Syndrome Foundation's brain collection at the Harvard Brain
Bank. Tissue from seven people with RLS was examined and five samples from people with no neurological conditions served as controls. Cross-sectional slides of the substantia nigra, the portion of the middle brain thought to play a role in RLS, allowed the research team to thoroughly examine the cells' structures and functions. To avoid bias, during examination, the investigator did not know whether the sample was that of a patient with or without RLS.

Although it's been long-suspected that iron deficiency had something
to do with RLS, Connor's study found that a specific receptor for iron
transport is lacking in patients with RLS. When that mechanism malfunctions, enough iron gets into the brain cells to keep them alive, but not enough so that they function optimally. That missing iron may cause a misfiring of neural signals to the legs creating the creepy-crawly feelings.

"This doesn't necessarily mean that a person has dietary
iron-deficiency and needs supplements," Connor said. "It means only that
these receptors aren't packaging and delivering an adequate amount of iron to the specific cells in this portion of the brain."

This explains why some patients find temporary relief from iron
supplements, but it is important that any supplementation therapy be managed
by a physician.

Although not FDA-approved for the treatment of RLS, a few prescription drugs, which have been approved for other conditions, have temporarily relieved symptoms in some patients. One such drug is that used in Parkinson's disease to calm tremors. The cells in the brain in RLS that are iron deficient are the cells that make the neurotransmitter dopamine. Dopamine synthesis requires iron and this is the likely reason that small amounts of the drugs that are used to treat Parkinson's patients can be effective in RLS.

Connor's next step is to continue to pinpoint other potential
breakdowns in the iron packaging and transport system to this part of the
brain, including the genes that regulate the iron transport proteins.

Welcome to the club! Sorry you have RLS, yet you could not have found a better place to find the information, and support you need to improve your quality of life!

*************Positive Thoughts**************

Hazel[/quote]

[ViewsAskew]

The article talks about the breakthrough brain autopsy research that was funded by the RLS Foundation. This really helped them start focusing on what was happening and to figure out at least part of the puzzle. Until this, they had no proof that iron was really part of the problem. It think the original research paper from this is on the RLS main site somewhere. I'm pretty sure there is a link to it from the sticky, too. As Ruby would say, another great reason to decide to become a member of the Foundation, or even better, give a little extra or even donate your brain when you don''t need it anymore. For me, sometimes I wonder if that isn't right now! .