Author Topic: Hello - i'm new to SjS  (Read 3378 times)

rachelbell

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Hello - i'm new to SjS
« on: June 13, 2011, 08:11:52 AM »


Hi I'm new to the forum. I'm in Yorkshire, England. I was diagnosed with sjogens in January along with lupus and possible rheumatoid arthritis and coelic disease. i also have raynauds which I've had since a child, I'm now 32.
  I'm slowly making my way through all the posts, theres certainly lots of info on here! I have been joining every possible organisation that can help.
 Does anyone else experience difficulties with their GP? The hospital have been good but any GP i have to see for everyday issues looks at me as if I'm from a different planet, i also have to explain what all my medications are for everytime.
   Luckily i work from home (self employed) but i can't really see this continuing long term as I'm so exhausted all the time and I'm now worrying that none of these conditions actually count as a disability benefits wise. I can't see employers jumping to employ someone with all these issues, i know they have to employ so many disabled people but theres no way they'd want someone with memory loss and chronic fatigue is there?
  Any advice (on anything) would be much appreciated
« Last Edit: June 13, 2011, 08:31:37 AM by Linda196 »

Scottietottie

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Re: Hello - i'm new to SjS
« Reply #1 on: June 13, 2011, 09:19:06 AM »
Hi Rachel   :)

Welcome to Sjogren's world.

I'm in the UK too - NE England. (Born in Scotland - hence the nickname) If you ever want to talk in 'real time' there is a hosted sjogrensworld chat on Wednesday evenings at 7p.m. GMT.

I've found loads of doctors - GPs but also hospital consultants other than rheumotologists who know virtually nothing about Sjogren's. I am lucky to have a GP who was willing to learn. A lot of the medics I've met seriously think it is just a bit of 'dry eye and mouth'. I've told a few that it's obviously been a while since they were at medical school and a bit of revision would do them no harm!

What have you been given for Sjogren's so far? Have you been given Hydroxychloroquine (Plaquenil) because I found it helped a lot with fatigue but it took about six months to work. It helped with the brain fog too. I assume they have tested your thyroid function. Thyroid trouble aften accompanies SjS and an underactive thyroid can also cause exhaustion and brain fog - but it can be helped considerably with meds.

I hope you find the site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
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Never do tomorrow what you can put off till the day after tomorrow!

Bucky

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Re: Hello - i'm new to SjS
« Reply #2 on: June 13, 2011, 10:43:46 AM »
Hi Rachel - welcome to the site.

As you've found out - there is LOTS of information here.  If there is a specific topic or subject you are interested in, if you put those word(s) in the search box to the top left of this page, it will take you to previous threads about that topic.

I live in the U.S. and am fortunate that my doctors have other patients with Sjogren's (although, they won't share the names of these people due to confidentiality issues  :( - it would be nice to have others "in person" to share this disease with).  This site is the next best thing.  Here, we are all have either confirmed diagnoses, or are sero-negative and their doctors are treating them based on their symptoms.  Or, there are some just now starting the journey to get diagnosed.  However, here we GET IT . . . . . we know it's not something just in our heads, and we're not crazy!!

This is a worldwide forum made up of mostly women, but we do have men here too.   :D  We range in age from 6 - 80's yrs. old.  Some work full-time, part-time, students, housewives, retired, on disability.  A wide range of people and interests.

Again, welcome.

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

rachelbell

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Re: Hello - i'm new to SjS
« Reply #3 on: June 13, 2011, 12:41:06 PM »

They did try me on Plaquenil but unfortunately i was one of the  few who cannot tolerate it. I am now on Azathioprine which apparently is not so good for the fatigue? The consultant at the hospital has said in another few months if my memory has not improved at all i will be having a brain scan. I have had a thyroid test yes :)
  Anything that anyone does to help with the fatigue and memory that they want to share would be much appreciated.

Joe S.

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Re: Hello - i'm new to SjS
« Reply #4 on: June 13, 2011, 02:58:02 PM »
Welcome to the forum. I have had to use alternative therapies. You can research some of them from my signature.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Pisces24

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Re: Hello - i'm new to SjS
« Reply #5 on: June 13, 2011, 05:07:00 PM »
WELCOME!
You mentions GP(s) looking at you like you were from another planet. I had the opposite case with the so called "specialists" looking at me like I was.
My gp was the one that got the ball rolling as my blood tests were really really off and got to the point where he was bound and determined to find out what the reason was. Thus my 6 year journey to find an intelligent doctor and my diagnosis of Sjogrens at a research/teaching hospital here in Iowa in March 2009.
Maybe you need a GP with a new practice starting out. They are a little more willing to learn than some of the older drs.

My favorite line from a specialist was "probably something you got from your cat" and I didn't have a cat when the STUFF started and my trek began.   ::)

Scottietottie

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Re: Hello - i'm new to SjS
« Reply #6 on: June 14, 2011, 08:50:44 AM »
Hi  :)

For memory - post it notes all over the house. A diary - and a note somewhere obvious to remind you to look at it! If you put something away try to tell another human being that you nhave - especially at work. Then forgetting what you did with 'it' - if you even remember you had 'it' - is not your sole responsibility! I also have notes and reminders in my phone and alarms that go off to remind me they are there!

Good luck - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

craftkeeper

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Re: Hello - i'm new to SjS
« Reply #7 on: June 16, 2011, 04:20:34 AM »
Hi, I to am a Newbie. And like you seem to be diagnose with many different things.  As of Feb of the year i am offically dx'ed with Lupus,R.A.,SJS and hypothyroid.  It's all pretty overwhelming isn't it?  Thankfully i do have a great GP who is the first to recoginize my symptoms and promptly shipped me of to a Rheumy.
So far i also like my Rheumy{he's just a tad bit hard to understan}. The only thing that really bothered me about him was at my first visit , after presribing methotrexate,predinsone and Naoproxine, he asked me if there were any other medications i would like a prescription written for??? I guess other then him being the only Rheumy in the area,this might be the reason his office was so full.

I find the only problem i am having right now with all of the different things going on, is trying to figure out with symptom is from which diesese and which doctor i need to go to. Do any of you with all of the over lapping things have this problem/ :-\

Patze

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Re: Hello - i'm new to SjS
« Reply #8 on: June 16, 2011, 07:23:42 AM »
Hi Rachel,

Let me also welcome you to the SJS World and family!  I hope that you also find this board as helpful as I do!

Take care of yourself -

Patze
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