Hi guys (and ?s about RLS, autoimmune disorders)

[kendra]

Well here I am at 1:45am on my fiancee's computer in London as he snores away in the bedroom...SUPPOSED to be getting a restful night's sleep so I can enjoy my vacation here but that's not gonna happen for a little while. Okay, enough complaining because I'm pretty sure that if I've got RLS, it's definitely mild. I'll ask a few specific questions up front so that this post has a point I also wanted to say that ya'll seem like a fantastic group of people and I'm really glad that I found this discussion board. ANYWAY!

1) I searched the board & didn't find a whole lot of info on autoimmune disorders other than "Well, people with RLS sometimes have them." Could RLS be an AI dis? Could it be a symptom, or a sign of worse things to come?

I guess I'm asking this because I can remember having RLS symptoms as early as 9 years old, but my health was always excellent otherwise . . . or was, until I was diagnosed with Type-I diabetes when I was 18 (I am 21 now). Obviously that was my huge wake-up call as to all things medical and health-related.

2) Speaking of diabetes, are there any other readers/posters on this board that have Type I? Are there any certain connections w/ RLS that you have noticed (like a dietary trigger?) As for diet, downing loads of watermelon isn't such a great idea for me...haha I already avoid aspartame as that is obviously poisonous filth, but I haven't done any allergy studies or anything like that.

3) Do lots of people have RLS in their lower backs, and what seems to help in this area? This is my primary "site" when I experience the tingling/electric feelings . . . it's like a slowly building charge in my back just above my bum and then BAM I have to jerk or move or the feeling moves through my whole body and it's just a really uggghh moment. I have experienced it in both of my legs and both of my arms in the past, but my RLS is very intermittant so I know I am lucky w/ this disease...I get it maybe 5 to 10 nights a year, I think. This frequency has been the same ever since I first noticed the symptoms, which I am very thankful for.

Okay well I have talked your ears off in my first post so I am gonna shuddup now...again, you all seem like a wonderful group of people & I really admire your strength in dealing with this poorly recognized disease.

[jan3213]

Hi, it's Jan

I just ran across your post and found it very interesting--especially the following:

Kendra said:

1) I searched the board & didn't find a whole lot of info on autoimmune disorders other than "Well, people with RLS sometimes have them." Could RLS be an AI dis? Could it be a symptom, or a sign of worse things to come

I'm no expert, not a doctor, scientist, etc. Just your standard RLS victim of many years who seems to have developed fibro and, perhaps, rheumatoid arthritis. Right now, we're not sure if I REALLY have fibro, and I'm scheduled to see a rheumy on Sept. 20. BUT, I DO have SOMETHING that has caused my immune system to go whacko. I have been tested for Lupus, and various other diseases. If I don't have RA, I definitely have some form of arthritis.

I have several friends who have a varied group of AI's who also have RLS. I don't know, BUT, it seems to me that, looking at all of the symptoms and talking amongst ourselves, there MAY be some connection. There are people much smarter than me who may come along and contradict me. BUT, I think a lot of these disorders/diseases seem to be so connected, somehow. I also know several people who have AI's who never developed RLS.

By the way, Kendra, WELCOME! You are right about this being a fantastic group of people! I'm so sorry you have RLS, but so glad you've found us. You've found a home!

Jan

[ksxroads]

Kendra and Hello Jan,

Most recent visit to one doctor who suggested that I have fibro in connection with the rls. I all ready have RA which primarily affects my fingers.

Someday they may be able to connect all the dots... but for now it is the women and men who have gone before us that seem to offer the most information and guidance ... Drs in my area are primarily clueless. However I have found one who seems to be willing to work with me on establishing a "Quality of Life" that meets my expectations!

I have Diabetes II. It is my perception that it is a genetic endrocine malfunction which while diagnosed much later in life for most people ... it may one day be determined as a life long factor in our bodies function.

I have read that RLS can be secondary to diabetes nueropathy. Yet listening to my own instincts in this area, I had RLS problems as a child and as an adolescent, in my twentys and so forth, so I do not think neuropathy is the sole contributing factor. I have yet to be tested for any specific cause. They didn't test for diabetes in children like me, it is considered an old persons disease by many. Yet I believe that the problem was there, it only becomes a major problem as we II people age and become less active. Now if I walk, exercise, eat properly I manage mine with out medication.

I digress!

For myself my RLS was intermittent through the years. Without truly knowing that this was a disease I developed coping skills - spent many nights remodeling the home, then going to work the next day... My daughter has the same symptoms. My brother and I talked recently and for three years the doctors have been unable to explain his problem and have him on Ultram. I am giving him info on RLS.

As for the bum! You know once years back I had similar problems back legs etc which I associated with driving ... I drove around 34,000 miles in a years time. A friend of mine gave me a little battery operated massager which I put at the base of my spine while driving. Now my daughter was all ways horrified that I would drop it as I got out of the vehicle... but I didn't care as it helped tremendously to keep the pain down to manageable level! hahahahaha When I notice the beginnings of the twinges etc I find a deep massage of the buttocks helps but it isn't always easy to have someone around your willing to ask do that!

I hope you are able to enjoy your vacation. Sending positive energy your way... may not be as much as needed, but hopefully a little will help.

Regretfully I have no answers for you... there are many more here with a better understanding of RLS. Just want you to know I am thinking of you.

Hazel

[philote]

I would really like to thank both of you for your thoughtful replies. I definitely see a stronger correlation with fibro & RA - both awful diseases in their own right. I am hoping against hope that someone will make a breakthrough on this autoimmune front, but at the same time not holding my breath . . . quality of life is definitely they phrase, though.

Hazel, thank you for the massager idea. That sounds like it might help! It'd be funny to go buzzing down the highway

[kendra]

err btw that up there is me, I just got confused about which messageboard I was on & used the wrong name