Hi everyone,
I'm new to this forum but was diagnosed with SS back in the early 2000s when I was in my late 20s. For a long time it was just a minor annoyance (bearable joint pain, sometimes looking like a chipmunk with a parotid swelling - annoyingly on my honeymoon but fortunately not on my wedding day! - dry eyes and mouth). Then it seemed to be a contributing factor to trying to have a baby and there were a couple of very difficult years - emotionally if not worse physically. Now I am a happy Mama to a 4 month old (today) baby girl and I'm experiencing post pregnancy flares. The joint pain is worse but bearable, but I have horrible pins-and-needles feelings in my arms and fingers and a bit in my legs. I may also be having some liver problems - still waiting test results. Things are starting to get a bit more scary, and I'm worrying that I won't have the energy to look after my newborn or the physical strength to play with her.
I am trying to exercise more (just joined the YMCA for water aerobics) and I do feel better while doing that. I'm interested in hearing any thoughts on diet modification and whether it helps symptoms (my sister in law with MS wants me to try gluten-free). I'm currently on 200 mg of plaquenil, 81 mg of aspirin, and really hated my one experience with prednisone.
Also, has anyone seen the movie "Fat, Sick, and Nearly Dead" about extreme diet modification and autoimmune disorder? I recently watched it on Netflix instant.
Thanks for reading!
Welcome to the forum.
Hi Caroline,
Let me also welcome you to the SJS World and family! Please look around as you'll find tons of topics by using the search engine located in the upper right hand side of this page (I'm often there as there as my rheumy doesn't say very much). And if you can't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.
You've mentioned pins and needle feelings, have you seen a neuro about it? If not, have you mentioned it to your rheumy or primary?
Thanks for the recommendation as I've not seen the movie, but I'll see if I can watch it soon.
Congratulations on the new little one, and hoping that you feel better soon.
Take care of yourself -
Patze
Welcome Caroline.
Lots of young mothers here, so you're not alone.
(I'm not one of them, of course). :-*
In life generally, it helps to deal what is right in front of me. The more I think of what might come next, the more I miss the present.
I've also found out that I pretty much have NO CLUE about what is coming next, so my 'thinking about the future' is pretty much a waste of effort.
For example, when I got up this morning I had no idea I'd have my 9 year old grandson, Sam, and Luke, the new baby beagle puppy, with me for the afternoon, AND for overnight. :P
They won't take a lot of work, and I will be useful to the family having them here. Especially the puppy. I think everyone is a bit overwhelmed with Luke, and he hasn't been part of the family for even a week yet! So everyone needs a little break at this point.
I like to be useful, but can't do so much any more, tho' I did invite everyone for a barbecue some time over the weekend. I'll try not to over do.
You will find your way, Caroline. Learn how to take care of yourself. Have the best possible doctor you can find. There are some medications that can help with the pins and needles pain, and for the joint pains, too.
Let others take care of you if possible. It is very hard, since I find that most of us here like to be the ones doing things for others!
I haven't seen the movie either, but I'm leery of extreme anything at this point in my life.
Sometimes 'extreme' things work for some people, but not for others. And of course it is hard to stick to extreme measures for the long term.
Sjogren's is a condition with many possible co-conditions, and there are lots of variations. A good doctor or two an a supportive family will help.
Keep us posted
Congratulations on the 4 month old. It is the most wonderful and difficult job in the world, and worth every minute. Enjoy it!
Water aerobics are my salvation. I'm free in the water, and feel better afterwards. What more can I ask?
Hugs
Elaine
Thank you all for the warm welcome (and the congratulations).
Patze - I just mentioned the pins and needles to my primary last week (actually she was the one who thought it might be sjogren's related - It hadn't occurred to me strangely, because I had been thinking it was a side effect of carpal tunnel since I'm on the computer for work all the time).
Carolina - I adore beagles - I'm jealous of your visit with the puppy! It's good to know that there are some meds to help with pins and needles. I'm wary of extreme diets also, and concerned about the ability to stick with it anyway, but I'm also afraid of medicine side effects. Complicated! The water aerobics are going great so far and my husband is being supportive about looking after the little one while I go. Sometimes he takes her swimming in the little warm pool.
Hi Caroline :)
Welcome to Sjogren's world. It's hard work being a new Mom - and worse with SjS! I'm not medical but I really believe that hormonal upsets cause women flares. (Obviously this doesn't apply to the men - who flare also)
After a baby and round about menopause it's seems to be very common for women to flare. It's also a time that many women develop thyroid problems if they are going to.
Maybe our hormones are why there are 9 women to every one man with SjS.
Take care - Scottie :)
Welcome Caroline!
Welcome Caroline!
Also, congratulations on your new little bundle of joy! :)
I hope you find this site helpful to you on your Sjogren's journey (even though you have been on this journey for a while). There's a lot of information here along with links to helpful information related to Sjogren's. If there's a particular subject you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about it.
The members here come from all walks of life and vary in ages from 6 yrs. into their 70's, possibly their 80's.
What works for one person, may not work for another. Lots of times we find this out by trial and error.
I've heard several of our members comment on the benefits of water aerobics. Especially with the achy feeling of some joints, knees, etc.
I've also heard our members talk about the benefits to themselves being on a gluten-free way of life. You can check out the threads about that through the search box above.
Again, welcome.
Bucky
Hi Caroline,
I too have Carpel Tunnel in both wrists, and I understand what you mean about thinking that there was a connection.
Can your rheumy recommend a neuro? If nothing else to establish a baseline for you?
And I'm so jealous of those that get to do water aerobics, with my work schedule, just can't seem to find the time anymore.
Take care of yourself and the little one,
Patze