Not new to RLS or the discussion board

Whether new to RLS/WED 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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ctravel12
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Not new to RLS or the discussion board

Postby ctravel12 » Tue Aug 28, 2012 6:34 pm

Well hello to anyone who has been around for a while. It has a been a few years since I have posted and just wanted to come by and say hello to everyone and let you know what is happening in my life as of today. I myself have had rls for over 30+ yrs and it is mostly under control and also a support group leader in my area for almost four (4) years.

I also have been diagnosed with Celiac Disease since July 2009 and believe me it was a challenge in the beginning. I definitely had to change my way of eating or the other alternative was getting sick. The change was the smart and sensible way to go.

I just found out this year that I have a very serious kidney disease as my GFR was very low. I am allowed to have just 1500mgs of sodium a day and about 60mgs of protein per day too. It is certainly an eye opener and definitely another way of eating properly and healthier.

Besides that I am doing well and enjoying life.

Charlene
Charlene
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ViewsAskew
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Re: Not new to RLS or the discussion board

Postby ViewsAskew » Wed Aug 29, 2012 2:35 am

Oh, my, Charlene! My husband has celiac, so I know what you went through to get used to it. And now a another new diet to get acclimated to. With the levels of sodium in processed foods, along with cross contamination issues, I know you're doing all your own cooking and not buying much, if anything, that is prepared.

Nice to hear you are still a support group leader and good to have you back.
Ann - Take what you need, leave the rest

Managing Your RLS

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ctravel12
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Re: Not new to RLS or the discussion board

Postby ctravel12 » Wed Aug 29, 2012 5:12 am

Thanks Ann. I am sorry to hear that your husband has Celiac too so you definitely know what I am going through. I am doing much better as there is so many more gluten free foods out there then it was a long time ago. Hope that you are doing good too.
Charlene

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Re: Not new to RLS or the discussion board

Postby ViewsAskew » Wed Aug 29, 2012 8:24 am

ctravel12 wrote:Thanks Ann. I am sorry to hear that your husband has Celiac too so you definitely know what I am going through. I am doing much better as there is so many more gluten free foods out there then it was a long time ago. Hope that you are doing good too.


He was diagnosed 15 years ago - not much available then! I bought a grain mill, ground my own flours, and created an entire cookbook's worth of recipes. Fortunately I had a very good friend, also celiac, with whom I spent many an afternoon figuring out how to make something delicious and GF.

It's much easier now. We're constantly astonished at how much is out there.

To anyone else reading this, there have been at least 4 or5 people over the years here who came here for help with RLS/WED and later found out they had celiac. About 35% of undiagnosed celiacs have RLS/WED - because they aren't absorbing nutrients and are often anemic. Celiac also often causes other neurological symptoms. So, if there are any weird symptoms, do ask your doctor to test you. The doc may not want to, but about 1 in 100 people in the US have celiac and 96% of them are undiagnosed. It takes an average of 8-12 years to get diagnosed after symptoms start. There are over 200 different symptoms, many not gut related.

Most of us do not have celiac. But, statistically, at least 1 in 100 do, and it's likely higher than that because so many celiacs have WED. That means there are at least 25 to 30 members here with celiac, and upwards of 40 or 50, and almost all of them undiagnosed.
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.

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ctravel12
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Re: Not new to RLS or the discussion board

Postby ctravel12 » Wed Aug 29, 2012 4:05 pm

Ann what you are saying is so true. I did not think that I had it as I did not have diarrhea; however was extremely constipated and that is definitely one of the symptoms. This disease is very hard to diagnose and it is true that so many go undiagnosed. My younger sister has it and it is definitely hereditary. She was diagnosed over 20 yrs ago and there was not much out there as there is today.
Charlene

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Re: Not new to RLS or the discussion board

Postby Chipmunk » Sun Sep 02, 2012 9:38 pm

Also, sometimes preliminary tests come back negative, but an intestinal biopsy shows that you do have Celiac. So if you think you have it, push for the definitive testing. A friend who has Celiac recommends that people go straight to the biopsy, but personally I'd prefer trying the less painful options first. :)
Tracy

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

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Re: Not new to RLS or the discussion board

Postby ViewsAskew » Sun Sep 02, 2012 9:43 pm

I know a few people who were negative at biopsy, but had celiac. The physician who does the biopsy MUST take samples from several places and take enough samples. Taking only a few samples from one place can lead to a false negative.
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.

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Re: Not new to RLS or the discussion board

Postby Chipmunk » Sun Sep 02, 2012 9:55 pm

ViewsAskew wrote:I know a few people who were negative at biopsy, but had celiac. The physician who does the biopsy MUST take samples from several places and take enough samples. Taking only a few samples from one place can lead to a false negative.

I did not know that. Ugh!
Tracy

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

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ctravel12
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Re: Not new to RLS or the discussion board

Postby ctravel12 » Mon Sep 03, 2012 7:59 pm

Tracy, that is scary. I hope that you do not have Celiac and if you do, you are getting the right info from your physician..
Charlene

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Re: Not new to RLS or the discussion board

Postby Chipmunk » Mon Sep 03, 2012 9:09 pm

ctravel12 wrote:Tracy, that is scary. I hope that you do not have Celiac and if you do, you are getting the right info from your physician..

No, I don't have celiac, at least not that I know of or suspect, but my daughter was not growing properly between about 18 and 24 months and they initially suspected celiac but it turned out to be something different. At the time I talked with people who themselves had celiac, or whose kids had it and they gave me lots of good information.

Celiac is kind of like RLS in that people know of it, but don't necessarily know the best way to treat it or even how to best confirm diagnosis, so I'm not surprised that there is more I don't know, especially since it's been 4 years since I researched it (feels like longer....). That's why I love boards with knowledgeable people: I always learn new things! :D
Tracy

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

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Re: Not new to RLS or the discussion board

Postby ViewsAskew » Tue Sep 04, 2012 1:04 am

I spent a lot of time on celiac boards when I first met my husband - I hadn't a clue about anything! The boards were very helpful.
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.

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ctravel12
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Re: Not new to RLS or the discussion board

Postby ctravel12 » Tue Sep 04, 2012 2:54 am

I have joined a Celiac Support Group on the internet and they are very helpful. The best person that I received information from is my sister as she was diagnosed over 20 yrs ago. She was also a Support Group Leader for about 15 yrs. She is no longer a support group leader but did receive a lot of great info and passed it along to me.
Charlene

Taking one day at a time

Hazel
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Re: Not new to RLS or the discussion board

Postby Hazel » Sat Sep 15, 2012 3:19 pm

It has been a long while since I have posted. Since last time I was here, I have retired in 2008 and spent most of my time helping my husband who was injured by having a 5000 lb iron beam dropped on his feet. Must say that due to the wisdom and guidance I learned from this forum, we were able to take charge of his health care and get him the medical care he needed. This happened in late 2006, and it took till late 2011 before it was all over. The work comp doctors told him he would never walk and to start filing for disability. We fought to get better doctors etc, and with surgery and proper foot wear he is back working full time.

During this time my RLS treatment went well. Then two years ago my doctor left his practice to run the local hospice. It was a complicated trial and error to find a doctor who was willing to work with me. At the time I chose this doctor I also went and saw a sleep specialist. The sleep specialist was willing to work with the GP. Things have gone fairly well till this last year when I began to travel with my husband. The GP whether it is his office staff or himself, seems to have a problem prescribing my medications in a timely manner. He has not been diligent about communicating with the sleep doctor or the rhumatologist I see. I have been diligent about making my three month appointments, etc. Even though it means traveling a great distance by automobile, which isn't all that much fun even with the medications.

It has become apparent that the GP does not fully understand the WED-RLS disease. I've made an appointment to see the sleep specialist next Thursday. I have been without medication for two days. oh joy. My husband is insisting I go see Dr. B, which I would truly love to do. However, I am not all that keen on traveling to LA alone. ;) I am hoping that the sleep specialist will be helpful, and have printed out once again information to take to my appointment.

Trying to remain positive and not desperate... I do think that this will be the year to go see Dr. B. My husband erects Wind Turbines and should have a layoff around Christmas. I'd been holding out as it is possible that after the first of the year he will be assigned to work the solar plant in the Moab Desert and I'd be in California...

It is easy to be nonchalant when the monster is caged by medication, it is easy to cry out for help when the monster is loose... ;)

Quality of Life... how precious that term is and how important in this era where we live longer. Each community we have spent time in I've tried to reach out and find something useful to contribute. I've joined the local library, volunteered at nursing homes, etc just something that I can do to keep myself occupied ... Here I've joined the library and help twice a week, and at the job site, there was no one offering breakfast for the crews like at all the other sites, so I go out each morning at 5:30am and sell burritos for a couple hours. I make enough to cover my expense and I usually make cookies and banana breads etc to give as customer appreciation... I'm just a grandmother at heart as so many of the guys are away from home for the first time. They are from California, Oregon, Washington, Utah, Idaho, Kansas and Oklahoma.

Not sure how long I'll be able to keep at it over the next few days as lack of sleep and pain seeps back into my daily existance.

I feel as if I am the long lost son returning to the fold. lol Yet it is comforting to see how much this site has grown.

(((((((((((((((BIG HUG)))))))))))))))))))

tired and achey but not alone, love Hazel

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ctravel12
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Re: Not new to RLS or the discussion board

Postby ctravel12 » Sat Sep 15, 2012 3:50 pm

Hazel,I am so glad to see you posting I will get back on later and read read your post very glad to see you
Charlene

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Re: Not new to RLS or the discussion board

Postby ViewsAskew » Sat Sep 15, 2012 6:17 pm

What a lovely surprise to see your name pop up.

What a great story about your husband. I am so happy that he's recovered so well. It must have been a rough time.
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.


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