Hi Sjogrens World Community Forum,
Chickpea mentioned it would be a good idea to formerly introduce myself, thus here goes:
Name: Shelley
From: Queensland Australia
Age: 35
Diagnosed with Sjogrens approximately 2 years ago.
Lifestyle:
I currently work fulltime for the IT industry, thus my day consists of sitting at a computer all day. Outside of work I love to cycle and walk with my dogs. I consider myself a pretty bubbly happy go lucky type of person but the fatigue is challenging the amount of hours available to me in a day, instead of be out and about I prefer to go to bed. The fatiuge outways the other symptoms I feel.
Current Symptoms:
Suffer from dry mouth causing dental problems, regular visits to my dentist helps combat tooth decay and gum problems.
I suffer stiffness of the joints but doesn't cause pain, thus not taking any medication for this.
I also suffer from regular nose bleeds caused by the dryness.
My main problem I suffer is fatigue, I'm constantly tired. I have always been a get up and go person, I have always competed in sports and train regularly to keep fit and active, normally where I enjoy this I'm finding it a battle to get up and get going, I'm afraid the fatigue will win and that I will give up the fight and end up sitting at home tired and miserable.
To help me with my symptoms I currently visit a Rheumatoid Specialist, my local GP and a dietitian.
Nutritionalist:
My nutrionalist has put me on a multivitamin, iron table, fish oil, rehmannia complex, probotic and also a lactose and gluten free diet, also excluding things like avocado, onions and fruit. I haven't really found any real improvement in my fatigue since I have been taking these but continue to.
Doctor:
My doctor has just prescribe Cipramil for the fatigue, which I have posted a message about my concerns, I haven't commenced taking this to date as I have doubts that this will help.
Specialist:
Has made the diagnoses and make yearly visits to update on condition.
Hi Shelley,
Welcome!
I responded in your other post as did many others but I am wondering if you have had your thyroid tested. Did someone else already bring that up? I felt very fatigued for years until I got on thryoid medicine. Its one of those things that if you need it, it can really where you out. Constant yawning, dry skin, hair, nails, everything, tired, fatigued, cold. I realize many of these symptoms overlap with SJS thats why it is important to make sure that is not contributing to your problems.
Cindi
Hi Cindi,
Thanks for your response i will have to ask my doctor about it, I have never had my Thyroid tested. I read your symptoms below and yawn, have dry skin, fatigued and imparticular feel the cold all the time. Thanks so much for your advice.
G'day there Shelley QLD Aus not a good spot for AI illness but you live where you live and that can't be helped. I hate reading from people like what you said the old USE to be its sad when you CAN'T anymore OR don't enjoy as much because of symptoms. Welcome to the sjs world. I was told If I feel tired sleep listen to your body my Dr told me but that is not always possible ::) Nice to met you.
G'day Gerty, when you point that out the used to be thing it's actually quiet scary, does help make me try and snap out of it and try to battle through it a little more though. Its funny your doctor says to listen to your body and sleep when your tired, my doctor said the exact opposite and said battle out through the day and don't take naps. That's why I'm really enjoying talking to you on this forum, its good to get it from the horses mouth about what works and what doesn't :-) Nice to talk and met you also Gerty take care.
Haha Shelley yes its funny diff Dr's have diff ideas that is for sure but I was also very sick and housebound for a long time. I don't crash or at least try not too spent to long in bed asleep in the past letting my life past me by but I just could not stay awake what so ever but that was lupus not sjs.
Welcome
I was wondering if you have had your vitamin B12 checked. I am vitamin B12 defecent. Once I started getting regular injections I had a little more energy. I also have low thyroid levels and I am anemic.
Welcome to Sjogrens World. I have received so much valuable information here. Keep reading.
We are all in this together...
Hi Shelley :)
A warm welcome to you.
I don't know whether the fish oil is any good for fatigue or not but it is good for our eyes. I was advised to take it by an opthamologist and I take 3000mg a day. For those who can't tolerate fish oil - I believe flax seed oil is good.
The fatigue is all too common with Sjogren's. Personally I seem to have sort of 'flares' of fatigue - like I can have a bad couple of months and then several good ones.
I hope you find the site useful.
Take care - Scottie :)
Hello and welcome Shelley!
I read that you are currently taking rehmannia complex. I was wondering which one in particular and what the dosage is? After researching, it seems like a very promising supplement.
Thanks.
Hello Steps13;
Nice to know you.
Have you tried
Acetyl L-Carnitine and alpha lipoic acid combination? It seems to help me with my Fatigue.
I also take TheraLife Fatigue formula that boosts energy during the day and help me sleep better at night.
I take TheraLife Autoimmune Dry Eye for dry eye, dry mouth- natural product, no side effects.
Welcome aboard
Pegasus
Welcome to the group.
It has been so lovely to hear from everyone, all the information is so helpful. It has educated me greatly and has given me the power to ask the right questions when I'm speaking about my condition.
Hypermobius you asked a quesetion about the Rehmannia Complex I'm currently taking 2 tablets per day, they are by Medi-Herb, sorry I did read something in the introduction about medications thus I hope its okay to put this in, they are just over the counter vitamin so hopefully okay. I have only been taking them for a few weeks now so haven't really felt any change but will give it time and let you know if it has made a difference :-)
Take care and have been reading and absorbing all your replies, I highly appreciate using your valuable time responding. Thank you.
Welcome to this family. You have come to a good place.
susanep :)
Welcome to the group!
I live in Iowa and also sit and "bang" at a computer all day. I work with pensions, 401(k)s, etc and basically move $$ around in the computer all day. I've learned to get up and move around every so often. Sitting all day is just not good for you.
My main problem with SJS had been teeth cavities. I am 53 and up until 10 years ago I had 5 cavities my entire life. Now normal is 5 a year. I am not sure how much more can get filled. I am doing everything short of not eating.
I have noticed some fatigue problems but I usually feel it coming on and get a bit more rest and that takes care of it.
I am being monitored for a bunch of stuff by three -ologists.
Welcome Shelley.
Hi Steps 13,(Shelley)
Welcome!!! I have been visiting the boards for about two years, but don't post as often as others. I was Dx about 10 1/2 years ago. The folks here are very supportive and caring from my limited times of looking for answers to questions. May you find lots of support here!
Catilee 2
Welcome to the group! I am a recent newbie and have found such great support on here as well as great information!
-Y