Please, help me understand my symptoms!

Hi I am new to discussions and would love to hear some feedback on my symptoms.I have had sjogrens since i was 21 and have had no treatment as yet as there was not much know about it and have never been prescribed anything, I was also diagnosed at 16 with a sliding hiatus hernia, servear gastric reflux and my trap door flap does not shut. Now I am 35 and I am really feeling the effects sjorens has taken on my body. Untill now it has only been my dryness issues and swollen glands. Now I experience exhaustion. I feel like i have been hit by a truck all the time my whole body ache’s like under my skin, electricity is flowing through my body. I find it hard to breath with little shallow breaths, constant headaches, and i find that i am having trouble writing and mind fog is really bad, i also have a constant nausea felling. I am now starting to read and learn more and it is all quite scary. I am still breastfeeding my 4th child and know that i cant go on meds whilst feeding so would love any feedback on natural remedies that can help relieve any of my symptoms as I just feel like I am getting worse every day. I think it is all making me a little depressed. I am also worried that I have passed on my illness to all of my children is it passed on through birth and gene’s? Please help me better understand what my body is going through.

It's time for you to seek a rhuematologist as soon as possible. The meds do make you feel better. I hate taking pills but without them I would have a poor quality of life.

It sounds like you are coming into a lot of the symptoms most of us deal with. I am sorry to hear that. I don't know if it's calming to know you aren't alone in it but we all know what you're going through. For me, the symptoms flare and settle so the severity of them isn't always at the peak levels, thankfully.

I would be very hesitant to offer any kind of advice on taking anything, natural or otherwise since you are nursing.Natural remedies don't always mean safe. I agree with ladyDi….get to a rheumy as soon as possible. I wonder too, what affect the change in hormone levels is having you on as you adjust from pre- to post delivery. You may want to ask the doc if that could have something to do with the severity of the symptoms right now.

And yes, the whole thing is scary. There a lot of unknowns….just do the best you can with each day and don't worry too far ahead about what may or may not happen.

Keep us posted!

Hi Brenda,

Good to hear from you! Sorry you are getting hit so hard with this, I agree totally with Ladydi, that you need to see a good Rheumatologist! They have to be Internists first, so there are few Doctors that will compare with their knowledge, and experience. Considering that most who have autoimmune are women, they surely have patients who are nursing children, and would be of great value to you.

Even natural supplements could be risky to your nursing child, so please speak to a specialist before beginning anything.

Everything you describe is part of Sjogren's. Unfortunately there is yet to be a cure or a fix for it. They have began genetic and stem cell research for a cure, but due to the fact that different genes are activated in different races who have this disease, they have not yet come to a conclusion with the research for a cure. China is leading the way, SGoddess gave us some good info on that. They have a huge population of Sjogren's suffers.

Thankyou to everyone for your response it is nice to have some reassurance. It makes me feel a little normal, and understood as it is hard to explain how i feel to my husband as he can not see the effects that i feel he just thinks that i am being lazy how can i make him understand more how i am feel and suffering in constant pain and fatigue,but still push through it to keep up with all house work, washing, our four kids and there sports, schooling, dinner, bills, and all walks of life to try and not let my kids see the effects it has on me as the older ones r starting to notice and they are getting worried about my health. Was all of you would probably be going through as well it would be interesting to get some tips on how to handle things better. I have an appointment this month with my ruemi keep to get some help soon.

Boy, you do have a lot to handle, know wonder you are tired, even without SS. First, have your husband read all about SS, then he 'might' understand. Also, maybe you could get some help around the house, or even maybe have some of your kids help, what's appropriate for their age. Also, maybe you could have one of the other mother's take your kids to sports, so you could get some rest. Rest whenever you can. Good luck with the Rheumatologist. Take care of yourself, feel better.

May I suggest your husband go to the Rheumatologist with you! Perhaps something will sink in there! It's hard for others to understand these invisible illnesses!

Also start printing out a small list of symptoms and hanging them on the bathroom mirror! Not too lengthy, and change it every couple of days, giving more info! It'helps them 'get it'!

To try to answer your question about passing it on.
There has been virtually no research into the genome of Sjogren's (as there has been virtually no research into Sjogrens at all even though it is the most common of the A.I. dseases).

The A.I diseases have a heritable tendency but the actual genetics is not understood. The diseases run in families but can change from generation to generation e.g. my mom had ME I have Sjogrens.
A friend has Sjogrens her daughter has ME and so far her son has nothing, another friend has scleroderma and her mom had RA etc. So no one can say with any certainty what the chances of passing on the gentic predisposition is or how it may appear.
This means that medics will be able to give little advice on this area.

I understand the problem with your partener not understanding - I'm sure we all do. Unless one has experience it oneself it is impossible to undrestand no matter how sympathetic or supportive they are - my wife is massively supportive has been to every pointless appointment with countless medics but she says she cannot understand as she does not know how it feels. Perhaps asking if he will look at the many web forums like this one might help him see how we are all affected - the medics should look too and perhaps they might stop talking such rubbish ie you can't have sjogrens your bloods are normal, you can't have sjogrens your'e male 'you don't get cystitis with sjogrens etc ....

The only good book that includes virtually all of the conditions associated with Sjogren's is by Robert and Carla Fox. It is very expensive but you can find some of it on line.
Good luck - do look at natural therapy - I don't yet know if it helps but as western medicine has nothing to offer and the drugs they borrow from other therapies to "treat" Sjogrens all have severe side effects possibly worse than herbs but ther is a lot or rubbish out ther as natural therapy - Chinese herbs appear to have the most potential finding a herbalist who is registered and qualified is the best solution unless one is perpared tom spend days onine reading Phd papers.

Good luck with your appointment.

Find a dr you love…ask for support…god bless

Hi Brenda, I have read a ton on Sjogren's. From what I understand, autoimmune diseases are through to have a genetic component and also be triggered by a virus or other environmental trigger. Thus, your children may have it. But I will say it doesn't help to worry now as they are here. My best advice would be to focus on their optimal health. Keep their immune systems healthy, keep inflammatory triggers away from them, eliminate toxins in your home, and feed them clean and organic foods. I do believe that if they do ever get diagnosed with an autoimmune disease, they will at least be on the right path to managing their lives. I believe you can go on plaquenil while breast feeding because you can be on it while pregnant. This is the only med I'm on. I have been on it for 4 months and it is helping with the fatigue and brain fog. You can read The Paleo Approach, a book that discusses the way autoimmune diseases are triggered in the body. It also include info on the Paleo diet, which seems to be the only diet that has helped a number of individuals with autoimmune diseases. Personally, I follow the Paleo diet, having eliminated al inflammatory food triggers. It's not easy, but it's worth it, as living with autoimmunity is worse than living without junk food. I also take Chinese herbs, go to acupuncture weekly, and see an Integrative MD. I also practice mindfulness meditation and try to walk daily. Positive thinking is also good for the body and soul...I do have my pity parties, but try to move through them as quickly as possible. I was diagnosed in February but am doing everything I can to see what works. Good luck and listen to your body on this journey!

1 Like

What meds are you taking. And what do they help? I to am new to SS. Thank you,


ladydi52 said:

It's time for you to seek a rhuematologist as soon as possible. The meds do make you feel better. I hate taking pills but without them I would have a poor quality of life.

The original comments I received from my Husband were as follows:-

I had heard of Sjogren's Syndrome so I looked it up on the net.

I decided after looking it up that I had all the symptoms so therefore I must have SS.

But in actual fact I was imagining that I had it but it was all in my mind.

This was his opinion for years even though I had regular appointments with a Rheumatologist.

The event that made him think I could actually have SS was last year when my holiday insurance company charged me extra to cover SS and again this year.

Lately I have deteriated more quickly than other years and I now get some consideration from him. When I fall asleep he now leaves me alone instead of keep waking me up to do things as he did before. His medical problems are always more important and worse than mine!!!! Ha! Ha!. I think not.

I am now 78 years old and must have had SS around 25 years that I know about. He is almost 82.

Don't know if this will help anyone but I feel better for writing it down.

My Daughter and her family live the other side of the world but she has now started with dry eyes. I hope it isn't the start of SS but I have a feeling it probably is as she also has Ekbom Syndrome the same as I do. My son seems OK so far.

I sympathise with all SS sufferers and wish them well as much as possible.


Dear Ali,

Yes, I have heard this, that once you look something up, bingo, you have it! Seems more than a few throughout the different BF communities have heard this from friends and loved ones! I just don't understand why you would say that to someone you care about. Do you think that maybe they themselves don't feel well enough to take on one more thing, or perhaps they cannot accept that you are not well? Could be that they have counted on us to be 'their rock'. At any rate, I am glad that you finally have some realization coming your way.

So sorry that you have suffered so long with this and am ever hopeful that tomorrow will be a better day!

Wishing you well,


There are several supplements that you can safely take while pregnant or breastfeeding. The following are ones my rheumy has me on - omega 3, calcium with D3 and glucosamine. She also said to cut back on sugar and artificial sweeteners as much as possible as they have inflammatory properties.

You may just have to let things go a bit so that you don't wear yourself out. Spending time with your children is more important than having a spotless house. If you only have energy for one thing than make it count and skip the cleaning. Go to counseling if you can afford it. Counseling is so important to help you realize that taking care of yourself is the best way to take care of your family. I have told both of my children about the sjogrens. At first they were worried but not knowing what is going on with mom is way more stressful than the basic facts. If they see me limping around the house or I am taking a nap in the middle of the day they know that I am going to be OK because I am taking care of myself. How much you tell them depends on their age but telling them nothing is not helpful to any of you.

Good luck!

Thanks Laura that was really helpful i will give the natural supplements a go. How old were your kids when tiu explained it to them?

I am so glad it was helpful! I was just diagnosed in the fall. My kids were 8 and 11 and I didn't tell them at first but they each noticed the difference in me when my symptoms flared. They definitely felt better once I explained to them what was going on and that I wasn't going to die as a result. I used to teach preschool and know from experience that if something was going on within the family the children always noticed and responded. Not knowing is frightening for a child of any age. How old are your kids? If they are young they only understand having a cold. You can explain that you have a kind of cold in your body that makes you very tired, achy, etc. For the older ones you can give them a more accurate description. Luckily for most of us we aren't going to die as a result of sjogrens. Most children just need reassurance that you aren't going away and will be there to take care of them. You are their world, after all, and they don't know how they will function without you!

Good luck and keep me posted!

Brenda said:

Thanks Laura that was really helpful i will give the natural supplements a go. How old were your kids when tiu explained it to them?

Mine are 13,11,3 and 18months. My eldest is the one that has noticed the most and she is scared that i am during, i have tried to reassure her but she does not believe me. As u said i am there world. This is why i really need to get on some meds as i am getting worse fast i need to slow it down as it feels like it is in my CNS and the flares seem to be more frequent and lasting longer.

Have your two older children read some info about the condition. Most of the sites reinforce that the condition is not deadly. Just avoid references to lymphoma occurrance as they don't need to see that. You could even take them with you to the rheumatologist. Doctors know so much more than your mom at that age!

Brenda said:

Mine are 13,11,3 and 18months. My eldest is the one that has noticed the most and she is scared that i am during, i have tried to reassure her but she does not believe me. As u said i am there world. This is why i really need to get on some meds as i am getting worse fast i need to slow it down as it feels like it is in my CNS and the flares seem to be more frequent and lasting longer.

Thanks for the advice I will do that.