Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Prevalence and correlates of sleep disturbance in systemic sclerosis


  • Please log in to reply
3 replies to this topic

#1 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 20 June 2011 - 06:24 PM

Prevalence and correlates of sleep disturbance in systemic sclerosis—results from the UCLA scleroderma quality of life study.

Sleep disturbances are common in SSc and are associated with worsening dyspnoea, depressed mood and severity of reflux symptoms. Tracy Frech. Rheumatology (2011) 50(7): 1280-1287. (Also see: Sleep Disorders)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#2 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 21 June 2011 - 09:11 PM

It's amazing to see this study as this is EXACTLY the issue I am suffering with right now. I have no motility in my esophagus and stomach and am dealing with constant reflux attacks. The kind if anyone can relate that are like being burned alive from the inside. I am having these attacks constantly day and night and aren't brought on by my eating the wrong thing but due to bile that forms and gathers in my stomach and then goes back up. My rheumatologist wants me to see a new gastro doctor that is coming on staff in August whose specialty is motility issues. Well I have now placed a call to him saying that I don't really think I can wait until August. He is of the opinion that I should have the fundoplication done. The gastro doctor that I have said he thought I was too far gone to have this. Well my rheumatologist disagrees with him. So I have put a call to him asking if he thinks this needs to be done then lets do it as waiting another 2 months seems just too much for me. I am like a zombie with no sleep. I am also aspirating into my lungs and my pulmonologist would like that to quit as it only worsens my pulmonary fibrosis issue.

So to see an actual study about the exact thing I am experiencing is just amazing to me. Since October the disease has become so much worse and seems to be on such a rage. I am so puffy and bloated that all of my pants seem tight. I can't imagine that I have gained weight unless it's from a prescription side effect.

Well off to see if I can doze a little before being jolted awake by an attack. I so hate those GI cocktails. I am however thankful that I have been able to stop it at 3 so I don't have to go into the ER. I hate that whole trip as it's so hard on my husband to sit in an ER all night and then have to get up for work. I feel so bad having to do that to him.

Warm hugs,

Peggy

#3 janey

janey

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 22 June 2011 - 02:39 AM

Peggy,
I am so sorry that you are still dealing with this and getting no relief! Keep pushing girl for a solution because you definitely need something done to help you! I have my fingers crossed for you.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 22 June 2011 - 10:13 AM

Hi Peggy,

Has your gastro suggested something else then, in lieu of the fundoplication, that would help you then?

This has GOT to be most exasperating for you.
Has your rheumatologist spoken to your gastro by chance?
It just seems to me that with your rheumatologist's suppport of the procedure, it would be good to press further, to get further explanation, rather than "thinking you are too far gone....". :emoticon-bang-head: THAT just isn't a satisfactory answer and you definitely deserve more.

I'm keeping you in my thoughts, along with all of my fingers and toes crossed, with the hope that something that will help you is done soon.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)