Sunflower's Mom-in-law Letter of thanks!

[sunflower]

Hi everyone,
I'm posting my mother-in-law's letter to all that responded to our questions here as well as under LOOKING FOR SLEEP, as I was unsure where to put it, where it'd be read by all who've typed in. Sorry to repeat it here, but I just wanted to make sure everyone who's replied got thanked properly... and my mother-in-law did have some new questions of her own within her letter, so if anyone has any information on her new questions, it'd be greatly appreciated once again! Thanks for everyone's time; I know it's meant SO much to my mother-in-law to have someplace now where she can feel "heard", and understood. So, thank you everyone! Blessings to you all! THINK SPRING!!! And in case my other posting hasn't been read by Tx (mc haggis), my mother-in-law was wondering what a reiki course is, and what does "self heal" consist of? Thanks for the information!

Sunflower 


Hi all,
Sunflower here - I'm going to type a quick note from my mother-in-law to you all, written on March 20, 2009.

Dear "Responders to Sunflower",

Thank you all for your concern and for sharing your knowledge and experience with us. (And yes, I do know that I am indeed blessed to have Sunflower in my life and in our family.)

I will answer some of your questions and ask a few more of my own.

I have probably had Sjogrens for some years but it got really bad about 3 years ago and I was diagnosed during that time. I do see a rheumatologist and 2 different doctors.

I have had a lot of pain and a lot of sleep problems long before diagnosis. I wa on amitriptyiline for some time, but then started having allergic reactions to it. Ambien helped me a lot, but my doctors don't like me taking it more than a couple of times a week. In the 5 years since I started it, I have weaned off several times, but just couldn't sleep, so I'd get back on it. They tried Trazadone for me, and it dried my eyes so much that I couldn't rest because of the gritty feeling. I was allergic to Rozerem. Tylenol PM works the opposite for me and wires me.

I had saved up Ambien whenever I could, so I do have some for an occasional "better nights' sleep", and I will take 5 mg when we're traveling or keeping grandkids, etc. Even with it, I wake up often.

Without it, I sleep a bit in between waking up every hour on the hour, feeling like it must be morning. I seldom ever feel drowsy-tired. My body feels more revved up - like it's in "fight-or-flight" mode. Though I don't feel drowsy-tired, I do get to feeling like I'm just shot - like somebody "pulled the plug" and I have a hard time functioning as a normal person when I hit bottom like that.

I did try melatonin and valerian root, until I learned they're not good with Sjogrens. Lavender hasn't helped me. I do use a humidifier as needed and I run something always for "white noise." I've been on 400 mg a day of Plaquenil since diagnosis and am trying to cut down to 200 mg and see how it goes. Plaquenil has helped to cut down on mouth swelling and sores and muscle pain.

I do get my thyroid checked and my last TSH was 4.79. For you on thyroid meds, how high are your counts?

I'm wondering if any of you with Sjogrens have used glyconutrients and had any help from those? I started on plant-based ones today, as I was allergic to the others. Has colostrum or moducare helped anyone with Sjogrens? Where would I find those items? How about Sleep Quick Strips, a natural sleep aid I read about?

My sister-in-law told me about Nature Blessed Montmorency Tart Cherry Juice. It's for pain and for sleep problems. It does have natural melatonin in it, but I wondered if anyone with Sjogrens ever tried it? It sounded wonderful! But I don't want to use anything unsafe. I thought maybe it'd be okay, since it has natural melatonin in it?

I am sorry to be so wordy. I just want to figure out how to live a more normal and productive life if possible. I have only met one other person with Sjogrens, and she didn't want to talk about it.

So, I sincerely thank you for talking about it, for your helpful information, and for giving us such a kind and warm welcome.

Sunflower's Mom-in-law 

[Scottietottie]

Hi 

What a nice letter.

OK - TSH 4.79 jumps out of the page at me! I'm always banging on about thyroids but it took me over a year to get mine stabilised! If my TSH is 4.79 I feel ill. The UK range tends to be 0.5-5. The American range tends to be 0.3 - 3.  My TSH was 42 at one point and I felt ill. I felt every bit as ill when they got it down to 5. My GP was dimissive. I asked to be referred back to an endocrinologist. She said that some people are symptomatic at the high end of the normal range and she's advised my GP to keep my TSH below 2.  So - 4.79 looks high to me. Worth getting an expert to look at it along with Free T4 and free T3, which I don't know so much about.

Thyroid could impinge on a good night's sleep too! It can cause ever so many symptoms, some which overlap with SjS.

Take care - Scottie 

[lynnmarie219]

Hi Sunflower and mom-in-law!

Thanks for the nice letter!

I agree that the thyroid sounds high to me as well...Scottie gave you some good information on that!

As far as taking over the counter items......even if it is considered "natural" its always best to check with your doctor. Many times herbs, vitamins, and supplements that many consider to be harmless can still interfere with our regular medications and medical conditions...so its best to ask about anything we are thinking about starting up.

Better safe than sorry I say!   

[salsen]

I haven't tried this yet, but I did hear on a talk show the other day that sunflower seeds help people with insomnia.  I need to do a little more research on this and check it out for myself.  At least you get fiber if it doesn't help you sleep!

[wednesday mc haggis]

Sunflowers mom in law

thnakyou for your response , your dealing with alot, no need to thank anyone were all in it together:)

I know your DIL was looking for some kind of excersise that would be possible for you i found this on the australian sjogrens site , thought it may be of intrest to you and others, ive not researched the cost as yet just thought id share it

http://www.sjogrens.org.au/naturaltherapies.htm


T x