Sjorgrens I appear to be allergic to just about everything
Posted , 10 users are following.
I have primary Sjorgrens and been on hydroxychloroquine 400mg daily since Feb 2015, and now all of my muscles in my shoulders and legs have become really painful. I tried taking pilocarpin and this caused my right armpit to swell as well. Seems like everything I take just creates another problem. I have now been out and purchased some sea buckthorn from hb so I hope this is not another waste of time. Getting quite depressed with trying everything and nothing working. Most night I don,t sleep due to all the symptoms.
Does anyone else have all these allergies? I am now down to one perfume , and that is channel no. 5, I have the same issues with soap, shampoo, conditions and laundry soap, getting a bit sad now lol, rant over.
Mandy x
2 likes, 70 replies
jean34329 mandy95
Posted
yes I also am affected in exactly the same way as you are.
I also have a gluten, suy, wheat, soy and milk intolerance. I am at my wits end with it all. I have subclinical hyperthyroidism and 20 nodules on the thyroid. This has still not been treated .
I am fed up with being in pain.
pam_87693 mandy95
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mandy95 pam_87693
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No I don,t have any fertility problems. After my last child was born in 1984 I had 10 years of irruglar periods that was about it. This also started my allergies to Pencillin, now the list is much longer. I do plan on joining the British Sjorgrens, can you inbox me the numbers please.
thx Mandy
pam_87693 mandy95
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jean34329 pam_87693
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Have you got any immediate advice about diet. I feel terrible today. I jhave gluten, yeast, wheat, soy cows milk intolerance. I am having gluten withdrawal symptoms.
I detest the taste of GF bread. What can I eat that is easy to get at.
I have subclinical hyperthroidism as well as Sjorgrens. I am having a flare up at the moment.
Jean
Jean
tracy79802 mandy95
Posted
I'm taking 400 mg x day too and sometimes my muscles (especially my shoulders) get really sore. It's an exhausting disease.
My experience with Sjogren's is when I get a flare I become utterly exhausted and sore. My eyes have been hurting lately and my mouth is always dry.
One thing that has helped tremendously is going on the Paleo autoimmune diet. In less than two weeks I feel less bloated and have a lot more energy - consistently. I'll stay on it because I"m finding that soy and gluten doesn't agree w/me. Not sure what your diet is like but google it and see what you think.
Having said that hang in there. Experiencing Sjogren's is a real challenge and it sounds like you're having a tough time. It's okay to be sad and frustrated. But get right back up and fight it.
Tracy.
jean34329 tracy79802
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Do you know where I can buy the PALEO diet books from please?
Are they available in the supermarkets etc?
I cannot use any perfume either. I can only have aloe vera soap and even then have to avoid using it on sensitive areas of my body. Same with deodrants, talc, shampoos and hair conditioners.
use a laundry gel for sensitive skin from M and S .
Stopped using furniture polish etc because I always got severe headaches and nausea.
Still do.
I avoid eye make up now.
Mascara and eye shadows no matter what make or shade definitely causes swelling and headaches.
DIET.
I feel that I cannot face up to going on this or any other diet but I know that I must in order to feel better.
I will feel differently about it tomorrow I am sure. It is because of not yet eating anything today that I feel a sense of deprvation etc of course. My hubby has just gone out to do the food shopping so when he returns I will quickly snatch a banana before I faint!
I wondered where you bought your book on Paleo diet from?
Please PM me if you wish. Thanks for everything I feel as if I am getting somewhere at long last . Nearly two years is a long time to feel ill and to be fobbed off by drs.
tracy79802 jean34329
Posted
I felt like you right before I started paleo. Exhuasted, in pain, burning eyes, sore wrists and shoulders and the never ending dry mouth, etc.
After one week on paleo I felt better, the 2nd week even better. I still have the symptoms but barely.
Let me know how it goes.
You can do it! Order the book and google paleo recipes. If you google "paleo diet 101" you'll find a page that will give you the basics to start with on your journey. The book is called "the paleo approach" by sara ballantyne.
tracy79802 mandy95
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mandy95 tracy79802
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I have been having a hard time with this since Sept 2014, and my symptoms are no better. I have the paleo diet book but have not looked at it yet. But I will do.
thx Mandy x
jean34329 mandy95
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I am intolerant to gluten, milk, soy, yeast and wheat. I will join you on this paleo diet. Perhaps we can support each other because going on a diet can be very stressful. I am ravenously hungry and do not know what to eat yet I must.
Kind regards
Jean
tracy79802 mandy95
Posted
If you can, check out the paleo approach. I had no idea the impact certain foods can have. As I understand it, we're predisposed to autoimmune diseases and certain foods can prevent it or make it better if you do have one.
Reading about about it changed my life because it answered so many questions about autoimmune diseases. I went through a really hard time over a 4 week period -- exhausted, eyes hurt, dry eyes, etc. and felt hopeless as each flare seems to get worse.
Initially, I started juicing which helps but it's labor intenstive and less satisfying. Now I'm making roasts in my crockpot with beets, squash, and other wonderful vegetables. And I have leftovers so I can just heat something up when I'm too exhausted to cook.
The other chalenging thing is that most md's are clinical which is great but not one doctor recommended looking at food and the disease holistically food, lifestyle, etc.
At the end of the day, we have Sjogrens. For some it goes into remission and for others it hangs on. We can take control by fighting back with how we eat.
I want to hear how it's going! You've go tthe book so take the next step. You can do it!.
tracy79802 jean34329
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Please let me know how it goes! I'm excited for you. I'm having a good time planning menus. I do batch cooking on Sundays so I have meals for the week. The nice thing about the paleo diet is you can eat as much as you want. The only hard part for me initally was eating 3 meals a day because I wasn't used to it. But now my body loves it.
morelia100 tracy79802
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I couldn't agree with you more. Changing my diet has been a life-saver, and now, after two years, I feel like I have no problem enjoying wonderful healthy meals and no longer feel so deprived without sugar, dairy, wheat, etc. My symptoms have diminished and I am feeling great these days. I cannot say enough good things about changing my diet. I never did take any medications either. I opted for radical diet changes instead and it has worked for me. I will say though that it wasn't an easy change, I think I succeeded because I was desperate to get better. I'm glad to see that changing diet is helping others too. Best of luck with your continued success in overcoming this autoimmune disease!
jean34329 tracy79802
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I would be very grateful for any ideas and recipes to try to kick start the thyroid.
I understand that the thyroid needs adequate levels of protein to keep healthy.
Paelo diet sounds very promising I will look into it in more detail.
I am glad that hyou are feeling better than you were.
I look fwd to hearing from you.
Kind regards
Jean x
tracy79802 morelia100
Posted
Good for you for not taking any medications. I think eating well makes the world of difference. I have my 83 mom eating healthy with me but we both cheat once in a while.
Best of luck to you too!
Tracy.
tracy79802 jean34329
Posted
It sounds like you're part paleo since you can't eat gluten, soy, etc. so hopefully this should be easy for you. If you eat sugar it's one of the first things you should give up.
If you can eat organic great. Either way, buy all of the protein and fresh vegetables you want (especially root vegetables like beets, turnips,etc.). Frest Fruit is fine in moderation.
I'd recommend a big roast in a crockpot with beets, sweet potatoes, onions and green vegetables and eat WHENEVER you're hungry (avoid night shade veggies like eggplant and tomoatoes, etc.). I also sautee liver 1 x week now. Some people don't like it but my body loved it.
If you can, pick up the paleo approach book. You'll learn a lot about autoimmune diseases and how eating certain foods helps / hinders - particularly for thyroid issues which usually accompany an auto immune disease.
For ideas I've been googling paleo recipes for the paleo 30 day elimination diet. It's the same as the paleo diet only cutting out soy, eggs, nuts, etc. After 30 days you re-introduce one at a time to see how your body responds.
Overall, it's personal preference. I'd recommend making a lot of it to have on hand to heat up. If you're ravenous a crockpot is perfect. I've been using my crockpot a lot simply because it's easy and makes a lot to ensure I'm eating healthy 3 x day.
I'm very happy to share any other information or tips with you - anytime. One thing to consider would be a soup with bone broth. Google it. It is very healing physically.
Please let me know if I can share any other information.
Be patient and gentle with yourself. And the best of luck to you. I hope you're feeling better.
Tracy
morelia100 tracy79802
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mandy95 jean34329
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Happy to give this diet a try, though I am a fussy eater and don,t like loads of vegetables so think I may struggle a bit.
Mandy x
jean34329 mandy95
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jean34329 tracy79802
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Moderate being couple of helpings of a green vegetable. Some are higher in Vit K than others.What a nightmare.
Many thanks
Jeanh
tracy79802 morelia100
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jean34329 tracy79802
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I hd a cholecystectomy in 2003 as I had a large gallstone. Could this be responsible for the thyroid problem and query Sjorgrens syndrome?
I had never heard of ox bile until just now.
In what ways has ox bile made a huge difference to you?
Thanks.
Jean
jean34329 morelia100
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Have not eaten today and it is 3pm in England. Gluten, wheat, soy, yeast and cows milk intolerant. Have to watch Vit K intake as on warfarin. Jean
tracy79802 jean34329
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Ox Bile is a supplement that aids the function of the Liver and Gall Bladder. This is an essential product for someone who has had their gall bladder removed. It helps to produce more bile to digest, process and disinfect fats and proteins.
For me it processes food more efficiently - I'm more regular and much less bloated. It also helps to reduce gut bacteria which can create other issues - like increased Sjogren's symptoms which can lead to other issues.
I don't know about your situation but overall it helps to reduce gut bacteria which, without a gall bladder, creates more of it.
Here's what i learned about autoimmune diseases - we're predisposed to autoimmune diseases and how we eat will determine if we actually get it. For some it can be avoided by eating paleo, for those of us that have it we can manage symptoms through a heathy diet.
My Sjogren's won't go away but I can lessen the symptoms through a paleo diet, pro-biotics, and ox bile.
Up until two weeks ago I was feeling pretty awful and discouraged so I've been doing a ton of research.
Thanks to the gracious people in the SJogren's forum who provided tips on eating paleo I've been able to manage the symptoms. My body loves it.
jean34329 tracy79802
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I have just eaten a gf tuna sandwich. I hate that Gf bead it tastes like glue.
I am drinking tap water.
Feel terrible at the moment.
tracy79802 jean34329
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I'm sorry you're not feeling well. The symptoms can be pretty awful. If you can, move away from GF breads, etc. and shift to protein and veggies. It will give your body a chance to heal.
Take care and let me know how it goes.
jean34329 tracy79802
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Pls can you uggest a breakfast for me, i keep worrying all the time about food. No use going to the ds they are not good dieticians!
jean
tracy79802 jean34329
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I'm sorry but I can't recommend a bread because I don't eat it anymore.
My meals consist of protein, vegetables and fruit.
Yesterday, I made a really good chicken, kale, zuchinni and black bean soup that's healthy and satisfying.
For breakfast I sometimes eat eggs, meat, and spinach -- or whatever I had for dinner the night before.
For me, it helps to batch cook on Sundays so my meals are made in advance. That way I'm not tempted to eat poorly.
Hope you're feeling better.