Sjorgrens I appear to be allergic to just about everything

Allergies, blood and immune system
1

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

Hi Mandy

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.

3

Mandy do you or have you had any fertility problems. If not worsening allergies are common in Sjögren's and its drugs. So sadly is depression. I run a FB group for BSSA members so if you are from the UK which I assume you are from HB why don't you join us in British Sjogrens as we do have knowledge of Sjögren's and its problems. 

4

Hi Mandy. 

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.

 

5

Hi Pam,

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

6

Also, check out "The Paleo Approach" by Sara Ballantyne. It has a TON of great information on autoimmune diseases. It gave me more hope. I know it won't go away but I can do something about it by how I eat.

 

7

Hi Tracy,

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

8

Mandy

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

9

Mandy- your symptoms sound like mine! I too had an allergic swelling reaction to Pilocarpine (my right hand and arm swelled considerably) and I have developed sudden allergic reactions to laundry detergent, talc, fragrance, soap, nikel, almost all creams and (really strange one) disintegrating synthetic material. I too am depressed over the whole thing, have been prescribed hydroxychloroquine (but am afraid to begin it) and am considering purchasing the sea buckthorn oil (please let us know if it works!).

I have been to 2 allergists and have had extensive testing done and have checked NEGATIVE to every allergy in the book despite the hives, red eyes and crazy itching symptoms.

All I can gather is that this damn disease makes our skin hypersensitive perhaps by harming its defences.

10

Shira

I agree with you. I am in exactly the same position. There is something weird about thyroid disorders . Something that is different and very complex if you know what I mean. There are so many signs and symptoms, allergies and sensitivities that we perhaps did not recognise as part of the bigger picture of say an auto immune disease affecting the thyroid.

It appears that we have a job getting treatment etc because of the complexities of this condition as well as the lack of knowlledge by those in the medical profession.

11

Hi Mandy - I think you may be pleasantly surprised. 

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!.

 

12

Hi Jean - good idea. 

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. 

13

Hi Jean, in my case Sjogren's was not deemed thyroid related, but yes, so many sensitivities. I'm afraid to go out in the sun because just a few minutes of exposure causes me some new spot on my skin. Never had such a problem before.

It's definitely a pain getting treatment. I have been to at least 20 docs in the past few months since things began just trying to find answers and get help. Some even kicked me out of their office and one went so far as to write in my records she believes I suffer from "body dysmorphic disorder"! Why? Because she couldn't detect my dermatological complaints by glancing at me from behind her desk.

So very frustrating...

14

Shira

Are you in the UK ? How dare these docs make these libellous, slanderous comments and make such subjective judgments.

What dermatological complaints could she not see? Surely she has the fact that you have a dermatological complaint  already recorded in your medical records!

If not then she is at fault for not keeping accurate records and also for not making sure that you are not  infectious LOL.

Have you taken photos of the skin to show the dermatological complaint and hence have evidence to show to anyone else that this condition exists and is  not a figment of your imagination.

Have you had a cyrex test done?

Did your dr or the allergists check you out for any food intolerancs? If so which ones/ Did they check you out for all of them?  \have you seen a naturopath at all?

15

Tracy 79802,

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!

16

Thanks Tracy.

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

17

Hi Morelia - I'm encouraged to hear your experience! I too was desparate and willing to eat beets and squash! lol. Seriously, my body loves the diet and am grateful to have something to works towards.

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. biggrin

Best of luck to you too!

Tracy.

18

You're welcome, Jean, and thank you. I was diagnosed about 6 months ago and my symptoms were getting worse and I was feeling very down.

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

19

I have allergies too. Please try a gluten free vegan diet. Cut out refined sugars and avoid aspartame. Taking good quality plant sterols helps to settle things too. I can recommend some if you message me.

20

Your welcome. Just in case you are looking, I have fund that "real" coconut cream and milk make an excellent substitute for dairy in many recipes. One day at a time. After two years of eating this was my kitchen and pantry only contain things that are good for me. I do have cheat days, but when I do, I take enzyme pills that help me digest the food easily. Best of luck!