Sjorgrens I appear to be allergic to just about everything

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.

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...

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?

I'm not in the UK unfortunately. My complaints had to do with pimentation changes, white hives and chronic eyelid swelling. I had pictures of the swelling that occurs later on in the day but she just glanced at the very obvious pic momentarily and declared "I don't see anything"! Strangely enough everyone else sees obvious eyelid swelling, dark red lids and even drooping in that pic. Yes, some of the complaints were already previously documented in my records.

Allergists claimed my complaints didn't sound food related so refused to test me.

I went to an alternative med. doctor but he just made my condition worse.

I have bloodwork that shows positive ANA, RNP, RNPa and positive Shirmer's test of 0mm tear production and have had to undergo salivary gland endoscopy.

You wrote ...

Allergists claimed my complaints didn't sound food related so refused to test me.

I would get a second opinion and not mention that you have been told that .

I know this is an older message, but I hadn't seen it before.  My mother suffered similar symptoms and suffers from Vitiligo, which is also an autoimmune disease.  She had trouble with her eye swelling and also with her skin on her arms at times becoming itchy.  At one point the doctors thought she had a severe infection because of the swelling of her eyes and gave her a large, unecessary, dose of antibiotics which made things worse for her.  This went on for years until she finally made the connection that she was and had been allergic to the sun.  She now covers up with a hat and long sleeved shirts when she goes out.  She also uses an umbrella if needed.  She has also started changing her diet, and this seems to help alleviate some of the symptoms.

She is not taking any prescription medications.  She tries to treat everything as natural as possible.

I also thought at some point the sun might be the culprit since I also have photosensitivity nowadays, however I've tried just staying in the house a few days and it didn't help with the swelling.

In any case I barely go out in the sun and always wear sunglasses and use SPF. I'm also trying a natural food diet now (on week 2), which is not easy but hoping I''ll see some (any!) improvement as I'm so fed up with this situation I'm considering a short course of steroids.

I was on plaquenil from Feb until last Thursday, I have now stopped taking it after confirming with the Dr that the medication was the cause of my muscle pain. I only have Primary Sjorgrens according to the RA.

Thx Mandy x

Dr in the UK do not like to admit that this medication causes muscle pain. So I went to my American Dr and he confirmed that it can. On Thursday when I went to the Dr my muscles in my legs were killing me, I stopped taking the medication on Thursday and by today the muscles that were hurting me are no longer hurting. So I believe also the medication was the problem. It also caused problems with my eyes after taking the medication within 45 minutes I was having trouble focusing when trying to read. This is a known side effect of the medication. So I certainly will not be taking it again.

Thx Mandy x

Glad to hear all your symptoms ceased upon stopping the meds!

There are numerous Reports on the net saying the same.

Sorry I eplied to Pam instead of to you . I just wished to say that there are extensive reports and comments on the Net confirming that hydroxychloroquine causes muscle pain. I am unsure if it is ppart of the quinolone family which have damaged thousands of people.

Thanks fr this info.

It has also been my experience that many but not all doctors appear very reluctant to disclose the side efects of drugs!

I do not know why this is the case.

Of course antibiotics can cause serious muscular problems especially the flouroquinolones.

What medication at you taking now for Sjorgrens syndrome? How long have you  had it for and how did it start?

Did you get pains/burning sensations in your legs?

Had you had an infection? Have you been exposed to the EBV glandular fever virus? How long was it before you received a diagnosis? What blood tests etc were done in order to make the diagnosis?

Thanks.

Jean