Hi from Paris! Just diagnosed with Sjogren's

[cactusrose]

Hi

My name is Sophie, I'm 30, living in Paris, France. I am married, with no kids, and I am self-employed (I make clothing that I sell on the internet).

I have been treated for hypothyroidism for 5 years but even if my treatment was well dosed, I was still feeling terribly tired, suffered from chronic pain, and had a very poor sleep.

I had a lip biopsy a month ago, and it confirmed Sj?gren's. I am lucky to finally have found a competent doctor in a hospital who wouldn't just tell me: "you know, every one is tired, has back pain, you are probably depressed". I always knew I wasn't depressed. I had depressive periods in my teenage years and it surely didn't feel like that. I run my own business (albeit not working full time, and having to take a "day off" regularly) and no one with depression would be able to cope with doing so for years.

I am very glad to finally be diagnosed because it is terrible frustrating to have all your symptoms dismissed by the doctors because they just don't know. My doc doesn't want me to take pain meds on a daily basis because she doesn't want to compromise my liver. She sent me to get physical therapy, I hope it will help! Till now, no pain meds has ever had any effect on my pain, but yoga helps a lot. So I agree with her for now. We will see in a few years!

My husband helps me quite a lot. He understands what I'm going through and is very gentle. He knows that I need to rest a lot, and that often I am very sore and can't do many things. I think he's quite frustrated that I can't travel as much as we used to do. Hiking in a foreign country seems like science fiction for me now! But we'll manage.

So, hi everyone!

[Joe S.]

Welcome. You will find a lot of good information and support here. Some have placed the medications and supplements that they are on as notes for others. Most of us are available to private messages.

[cactusrose]

Thanks Joe! I have edited my signature. I'm not used to the site yet, I hope it works.

I have done a lot of reading in the forum, it is good to find people who feel the way I feel, even if I wished no one would have to go through this.

At the moment the pain is quite bad at night, there has been a few where I had to sleep seated because lying is too painful on my shoulder joints and wrists. It's getting better since a couple of days though.

[Carolina]

Welcome cactusrose!

I wish no one had to be part of this group.  But it is wonderful to have the friendship, support and information that we find here.

I am so much older than you, 68, and still grieving that I will never be able to walk fast, hike, or ride a bike again.  My illness came so much later in life, and I have developed peripheral neuropathy, which has not been adequately diagnosed and hasn't had any treatment yet.

My heart goes out to you and others who are so young when this starts.  I do hope that proper diagnoses and treatments will help you and perhaps 'cures' will be developed in your lifetime.

Do keep us posted.

Kisses

Carolina

[Scottietottie]

Hi Sophie 

Welcome to Sjogren's world.  If you ever want to chat in 'real time', there is a hosted sjogrensworld chat on a Wednesday evening at 7p.m. GMT. It's nicknamed 'eurochat' but everyone around at that time is, of course, welcome.

I hope you find the site useful.

Take care - Scottie 

[Patze]

Hi Sophie,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are tons of interesting topics that can be found by using the search engine in the upper left hand of this page.

You'll find a lot of the members here suffer from chronic pain and the sleeplessness is also very common as well.  For the daily pain, I'm only using OTC pain meds as the rheumy doesn't think I need anything stronger...ugh.  Some days the pain is not so bad, will others I just want to cry.

I have to work full time so there's not much down time for me, but I'm so glad to hear that your hubby is so understanding!  Lucky you!

Again, welcome, and I hope to chat with you soon.

Take care of yourself -

Patze

[cactusrose]

Thank you very much for the warm welcome!

@Carolina: I am lucky, even with Sjogren's. My husband is the best, we've been together for 6 years, he saw me getting worse and worse and helps me like no one could, to understand, to cope. And I love my job! Being self employed is really marvellous, esp when your health isn't constant.

I hope you get proper diagnosis for your neuropathy and the treatment you need.

@Scottie: I am definitely going to try to come chat. If my memory is good, it should be at 9pm in France.

@Patze: Oh I did a lot of reading already! OTC pain meds don't do anything for my pain, unfortunately. Neither morphine (I wasn't prescribed some, just had some after a non related surgery and it was aweful, I was still in pain (not from the surgery), very sleepy but couldn't sleep! ugh)

Hope to chat with you soon!

[Joe S.]

I use a simple meditation to deal with pain. It also helps with rest.
Breathe in, "I am"
Breathe out, "calm"

[cactusrose]

I use a simple meditation to deal with pain. It also helps with rest.
Breathe in, "I am"
Breathe out, "calm"

I do something very similar!

[JannaLee]

Hi Cactusrose!

I am delighted to make your acquaintance and look forward to knowing you better.

Janna

[cactusrose]

Hi Cactusrose!

I am delighted to make your acquaintance and look forward to knowing you better.

Janna

I'm very pleased to "meet" you too! I hope I can join the chat soon.

Sophie

[jstroble]

Hi Cactus Rose

Welcome from me too.  Hiking is the thing I miss most too.  It has taken me a long time to accept that I can't . 

Hope you feel better soon.  Everyone here is just wonderful and  a world of information and help is right here.  I am fairly new here too. 

Joyce

[FF Jo]

Hi Sophie
Welcome!  I was just diagnosed too and was every happy about it in a sad way.  All the pain, fatigue, sadness, and sleepling problems now has a name SJS.  So it is no longer just in our heads.  Jo 

[lynnmarie219]

Hi Sophie,

Welcome to Sjogrens World! Love your name...it was my grandmas!

Glad that you found us here and that you feel reading the posts have already helped you in some small way! This place is filled with people who really understand because we have all been there in one form or another.

Feel conformable coming here for information, friendship, support and laughter! This is a safe and welcoming home for people from all over the world!

[Katybarstool]

Hi Sophie

A welcome from me too. Like Scottie, I'm in Northern England. I don't get round to the chat, but loe to pop in here and catch up with all my Sjoggie friends.

Kathyx