Crohns
Dear Guest,
Evidently we do not have any one posting who has been diagnosed with Crohn's disease. I do have a close friend who is in his mid 30s who has Crohn's. He is studying accupuncture and we have discussed RLS, so since he didn't mention his having RLS I figure he doesn't.
Hopefully you are finding information here which is helping.
Please join the group as your perspective may help others. We would greatly appreciate your input!
Hazel
Evidently we do not have any one posting who has been diagnosed with Crohn's disease. I do have a close friend who is in his mid 30s who has Crohn's. He is studying accupuncture and we have discussed RLS, so since he didn't mention his having RLS I figure he doesn't.
Hopefully you are finding information here which is helping.
Please join the group as your perspective may help others. We would greatly appreciate your input!
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
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ViewsAskew
- Moderator
- Posts: 16580
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I didn't post as I don't have it. . . my uncle does and he does have RLS. However, that doesn't help you as he doesn't post here.
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.
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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wishicouldsleep
- Posts: 1
- Joined: Wed Jan 10, 2007 7:40 am
I have Crohns
Hello,
I do have Crohns disease but I don't always get RLS.
I do have Crohns disease but I don't always get RLS.
crohns
Hi and welcome iwishicould sleep
I never had crohns disease but have heard it is not a very nice disease. I hope that you do not have rls, but if you have you have found the right place to come to.
Read the forum New to RLS as there are alot of good sticky posts and threads that may be of some help to you.
I wish I could be of more help, but if you just want to talk, vent or whatever we are here for you.
Sleep deprivation is miserable. I hope that you find some good relief and good the quality of life back that you so much deserve.
I never had crohns disease but have heard it is not a very nice disease. I hope that you do not have rls, but if you have you have found the right place to come to.
Read the forum New to RLS as there are alot of good sticky posts and threads that may be of some help to you.
I wish I could be of more help, but if you just want to talk, vent or whatever we are here for you.
Sleep deprivation is miserable. I hope that you find some good relief and good the quality of life back that you so much deserve.
Charlene
Taking one day at a time
Taking one day at a time
Re: Crohns
guest wrote:Does anyone with RLS have Crohn's disease?????????
Hi --
I don't have Crohn's, though I do have gut problems & RLS and one of my sons has Crohn's. He has so many other things we haven't gotten to checking out RLS yet. We do both have Attention Deficit Disorder, & I've read that's common with RLS.
(BTW -- having just dozed off while I was writing here --do others of you fall asleeo at the key board?]
(BTW -- having just dozed off while I was writing here --do others of you fall asleeo at the key board?]
This statement just caught my eye. Yes, yes, yes----I have fallen asleep at my keyboard, fallen asleep sitting in my chair and have almost fallen out of it! I think sometimes my body just needs sleep so badly, that I will just fall asleep at the drop of a hat.
Jan
No one is alone who had friends.
I have RLS and Crohn's
I just found your post. Yes, I have both RLS and Crohn's.
Although every doctor I have seen tells me they are not related, my RLS got decidedly worse after my Crohn's began.
I was diagnosed with Crohn's just five years ago (at 53 years old). That in itself is unusual; normally it takes effect at a much younger age.
Up until that time my RLS was basically under control. I had been taking Mirapex and was under the care of the doctor who was medical advisor to the RLS Foundation. For the last five years, my RLS has been out of control and I am now my doctors most frustrating case. There isn't a medication we haven't tried. The Mirapex no longer works well; yet it is still the best of everything we have tried. Every six weeks or so, it totally loses its effect and I have to go off it for a few days, which is very, very difficult.
I have also tried diet and vitamins with NO EFFECT.
I am now considering accupuncture for both the Crohn's and RLS (I also have osteoarthiristis in my shoulder.
If there are specific questions you would like to ask about either the RLS or Crohn's, I will be happy to share with you whatever I have found out. I have been to Johns' Hopkins, NIH, and Mayo Clinic as well as the RLS Foundation conferences, so I have some idea of what is going on with various treatments.
Art
Although every doctor I have seen tells me they are not related, my RLS got decidedly worse after my Crohn's began.
I was diagnosed with Crohn's just five years ago (at 53 years old). That in itself is unusual; normally it takes effect at a much younger age.
Up until that time my RLS was basically under control. I had been taking Mirapex and was under the care of the doctor who was medical advisor to the RLS Foundation. For the last five years, my RLS has been out of control and I am now my doctors most frustrating case. There isn't a medication we haven't tried. The Mirapex no longer works well; yet it is still the best of everything we have tried. Every six weeks or so, it totally loses its effect and I have to go off it for a few days, which is very, very difficult.
I have also tried diet and vitamins with NO EFFECT.
I am now considering accupuncture for both the Crohn's and RLS (I also have osteoarthiristis in my shoulder.
If there are specific questions you would like to ask about either the RLS or Crohn's, I will be happy to share with you whatever I have found out. I have been to Johns' Hopkins, NIH, and Mayo Clinic as well as the RLS Foundation conferences, so I have some idea of what is going on with various treatments.
Art
crohns
Hi Art and welcome to this board. I am so sorry to hear that you have rls let alone crohns disease. I hope that your dr will be able to find something that will help you with both diseases.
Please keep us posted on how you are doing. This is a wonderful board and very supportive. If you just want to talk, vent or whatever, please do so as we will be here for you.
Please keep us posted on how you are doing. This is a wonderful board and very supportive. If you just want to talk, vent or whatever, please do so as we will be here for you.
Charlene
Taking one day at a time
Taking one day at a time
Art, Sorry that you have not been able to find relief for your rls and hope the futrue will bode better for you. Reads like you have lots of experience with rls and am hoping that are able to stay with the board as it may be that you can be very helpful to others. Once again, best of luck and keep us posted.
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SquirmingSusan
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Art, do you have a lot of blood loss with your Crohn's? That could aggravate the RLS... Just something to check out.
My daughter, who is now 17, had her colon removed a couple years ago because of ulcerative colitis. She was always anemic, and needed a lot of iron supplements, as well as a transfusion at one point.
Good luck with it all!
Susan
My daughter, who is now 17, had her colon removed a couple years ago because of ulcerative colitis. She was always anemic, and needed a lot of iron supplements, as well as a transfusion at one point.
Good luck with it all!
Susan
crohns and rls
I just joined the board, so I just saw this post, but have had rls for as long as I've had Crohn's, about 15 years. Has there been any other info linking these two.
I'm on carbido/levido (25-100 mg) nightly, but I do need to increase to 2 pills often, and my Crohn's is totally under control now without medication.
Honestly, the RLS is worse for me as it affects everything I want to do at night, movies, theatre, etc.
So glad for this org and for this board. Thanks for "listening"
lilli
I'm on carbido/levido (25-100 mg) nightly, but I do need to increase to 2 pills often, and my Crohn's is totally under control now without medication.
Honestly, the RLS is worse for me as it affects everything I want to do at night, movies, theatre, etc.
So glad for this org and for this board. Thanks for "listening"
lilli
Hi Lilli and welcome to this board. I never had Crohn's disease so cannot give you any input on this subject.
With being new to the board please go to the forum New to RLS and read the sticky post "Managing RLS" There is a fountain of knowledge there and also an excellent article from the Mayo Clinic Algorithm. It is really worth reading and if you are going to a dr for your rls, please print the Mayo Clinic and bring it to him/her.
Please keep me posted on how you are doing. There are also two good sites to read www.rlshelp. org and www.wemove.org
I hope this of some help to you.
With being new to the board please go to the forum New to RLS and read the sticky post "Managing RLS" There is a fountain of knowledge there and also an excellent article from the Mayo Clinic Algorithm. It is really worth reading and if you are going to a dr for your rls, please print the Mayo Clinic and bring it to him/her.
Please keep me posted on how you are doing. There are also two good sites to read www.rlshelp. org and www.wemove.org
I hope this of some help to you.
Charlene
Taking one day at a time
Taking one day at a time