Fatigue and frustration

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Rate Topic

Display Mode

Topic Options

Author

Message

kerbear

Posted Wednesday, November 04, 2009 12:31 AM

Group: Forum Members
Last Login: Saturday, November 07, 2009 12:10 AM
Posts: 5, Visits: 6

Hi, I am new to the parenting board, I have a 14 year old daughter, Bria, who was diagnosed 2 years ago with Sjogrens Syndrome. She is RF and ANA positive, but they will not diagnosed Lupus due to a negative anti-DNA. I don't really get that, since the anti-DNA is only positive in 60% or so of Lupus patients, but at thispoint the treatment is the same so I will just go with it. We have been through multiple treatments, plaquenil, mtx, cellcept, 5 or 6 different NSAIDS, prednisone. And I'm sure I have left something out! So, nothing has really helped much with her joint pain and we are back to trying mtx again since the next options that were offered had side effects like permanent sterility after one dose.

So, I am beyond frustrated right now. To begin with I am stuck with HMO medical, which means our health care pretty much sucks. Right now Bria is suffering from ridiculous fatigue, she has been sleeping between 16 and 20 hours, followed by a maximum of 6-8 hours awake, then back to sleep. We have already had to switch her to online classes, but now she doesn't even have the energy to do a full days work laying on the couch. The Rheumy says it may not even be related to her autoimmune disorder (right), her primary doctor says it is probably from her Sjogrens. I am so confused. It is worse since starting the mtx and I know it is a side effect but this is ridiculous. I will add that I also have autoimmune issues and have taken mtx for years now so I am used to it, but I remember the fatigue early on, but the meds made such a dramatic difference for me pain wise that exhaustion was an improvement!

I guess I just don't know how hard to push her, how long this is going to last, how long I can put up with it!! I am a single parent with health issues of my own and a full time job. Any suggestions,or hope for improvement? Thanks,

Kerry

Post #4255429

Top

CatP

Posted Friday, November 06, 2009 10:09 AM

Group: Forum Members
Last Login: 2 days ago @ 4:49 AM
Posts: 18, Visits: 117

Kerry, I do not have any experience with these conditions and therefore cannot give much advice. My daughter has Psoriatic arthritis only, at this time anyway. The RA Connect forum here has many members who have overlapping autoimmune conditions and therefore may be better able to give you advice.

I did want to tell you that I am so sorry that you are going through this. I have been a single mom of a healthy child and that was tough enough. Now I am a mother of a child with arthritis, that is also tough but you are obviously dealing with so much more. I wish there was more I could offer you to help.

Maybe there is someone on this board that can offer advice. I just noticed that no one had replied to your message yet.
Cat

Post #4257630

Top

Ella's Mom

Posted Monday, November 09, 2009 5:28 PM

Group: Forum Members
Last Login: Today @ 1:20 AM
Posts: 42, Visits: 39

Hi Kerry,

So sorry to hear that your daughter is having so much trouble. I have Sjogren's myself and can tell you that I have times when I need to sleep for long stretches like your daughter as well. Given her age, she may be having such an effect because of hormone surges reacting with her Sjogren's, so you might want to discuss this with her doctor to see if there's anything you can do to help balance that.

I also have a child with JRA and know how frustrating insurance can be! You might research what resources are available in your state and look into federal programs as well. There are a lot of programs that will take up the slack from your existing coverage. If you take your daughter to a children's hospital, they will have a social worker who can help you with this.

Good luck and I hope she's doing better soon!!

Melanie

Post #4259691

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 9:47am

Execution: 0.421. 49 queries. Compression Disabled.