Hi everyone. My name is Phoebe and I and newly diagnosed with Sjogren's, I got a call from my doctor's nurse on Wed with my diagnosis. I have been pretty ill off and on for about 4 months, finally was able to get back in with my doctor (no insurance) and she did everything my new doctor didn't do. I lost my husband to suicide in September 2011, and since then, I have been very depressed and physically sick. I have 2 teenagers and they worry about losing me now. They have been out of town this week visiting their grandparents and I have been so lonely and sad. I haven't felt like doing anything. The last 24 hours I have had pressure in the back of my head and dizziness, I have had this before, but, not to this degree...I think it's my nerves and stress, also may be my sinuses. I am not sure what to do now that I have been diagnosed. My doctors office is supposed to be calling with a appointment time for me to see a Rheumatologist, but, I haven't heard anything yet. The last 4 months I have not felt "right" not that I have felt "right" since my husband passed, but, something is just off, and this diagnosis has answered so many questions I have had. Does anyone else have this pressure and dizziness? That is my main concern right now....I am so glad I have found this group.
Hi Phoebe - welcome, so very sorry to hear about your diagnosis, but glad you found us. You will find this forum so very supportive, helpful and knowledgeable. I am also so very sorry to hear about your husbands passing, sometimes autoimmune rears its ugly head during times of severe stress, this is what happened to me too. I lost my mother a year ago and my health just declined even more so until I was finally diagnosed this past January.
I recommend (and I only found out through other posters here) that you look up the spoon theory online and print out some copies of it to give to your family and friends who are finding your illness hard to deal with. It will explain allot to them.
I have had dizziness, pain in the neck and major sinus issues, to name only a very few of my many symptoms. I think once you visit with your rheumy (if he/she is really knowledgeable of sjogrens), you should get many of your symptom questions answered. If you are open to medications, talk about plaquenil. I have been on it since January and am just now in the last month starting to notice a huge difference. I still have bad days and my symptoms did not all disappear but I can lead a "fairly" normal life compared to what it was before. Nothing will ever be totally "normal" for me, but I am happy with what I have. Your rheumy will probably talk about eye drops and mouth washes/tooth pastes for dry mouth.
What helped me before my first rheumy appt was to write down my list of many perplexing, strange symptoms so that I was certain I left nothing out.
I wish you luck and am sending positive thoughts and prayers your way right now that you find the answers and some resolution to your troubling symptoms. Hang in there and keep us posted.
Thank you so much for your encouraging response. I have come to the conclusion I have these headaches and the dizziness because of anxiety. I have had anxiety since my husband passed and since my diagnosis I have been under some pretty severe stress. I cannot wait to see my rheumy. I am hoping she will help me. I have done quite a bit of research on this syndrome and have heard of Plaquenil and will ask her about that when I see her. Thank you again :)
Welcome phoebe,
You are in the right place. Here you can get information and support, and vent all you want.
What I find with Sjogren's, and probably all chronic conditions, is that it is so hard to tell what is the condition, and what is the rest of my life.
It doesn't much matter, I guess, since they do affect each other.
The keys are patience, acceptance and relaxation. Easy to say, very very hard to do.
Those happen to be the keys to life without a chronic disease, but for us, we must learn them to survive.
First, you are not alone.
Second, there are many ways to help yourself and to feel better.
Third, we understand, we aren't just WITH you, we are part of your experience.
Fourth, each of us is different, as well as alike in our conditions....which means you should take what you need from each person, but know that not everything will apply to you.
This also means that what is working for me, may not work for you. that is why we need patience while we find what works.
We also need to relax, to let go a little bit of the fear of the future, and what a symptom like pressure and dizziness might 'mean'.
I have had pressure and dizziness at various times, probably related to my Sjogren's, but not dangerous unless I stand up too quickly.
So I stand up slowly!
if you aren't taking something for depression, I suggest you find a medication that is also 'on label' for pain. I take Cymbalta and that works for me, but there are others, and you will learn about them.
You are well served to learn how to search the internet for answers without falling into quack places and lots of individual testimonies. You need scientific advice and good data to make decisions.
Especially you need a doctor you trust and who knows Sjogren's well.
But no doctor, or medication is going to 'save me'.......i have to put together a way of living that works for me, and a network of medical, spiritual, emotional, and physical support systems.
Keep posting.
Welcome, welcome welcome.
Hugs
Elaine
WOW! What wonderful responses.
Amanda & Elaine, I do have a group of very supportive woman and men via Facebook...we are there for one another when we need support, some are upwards of 9 years out losing their spouses and have days like they did right after losing their spouses. Suicide is s different beast, I know what I have to do to feel better, and I see a therapist...it's just so hard being with someone for 20 years and have them end their own lives. I will survive, it's just a very bumpy road.
I do experience some dryness. Not bad though. My eyes hurt, especially when I wake up in the morning or if I have pushed myself too much during the day. I have had oral thrush, and thought it was something else. I also had a yeast infection at the same time a couple of months ago. I have never had either before. I have had frequent sinus infections and allergies. I stopped smoking 4.5 months ago and that is when all of these symptoms started showing up. Constant clearing of my throat, hoarseness, dry cough. I have acid reflux...it has been so much worse the last few months also.
I have only been waiting a few days to get in to see my new rheumy. If I don't hear back by Tuesday I will be calling my doc again.
My kids will be back tomorrow night, late. I have gone and had coffee with a friend this week and it was nice. I don't get out much, sometimes I would just rather be at home....I know that's not good for my depression...
Thank you both for your responses...I already feel welcome. :)
Ahh phoebe,
It is known that smoking, which is of course not good for you, masks other conditions in the throat, mouth and lungs.
http://health.nytimes.com/health/guides/disease/nicotine-withdrawal/symptoms-of-withdrawal.html
The most common co-conditions of immune-mediated conditions like Sjogren's are:
Severe fatigue
Depression
Pain
Be easy on yourself. Move forward when possible, when you have a decision to make, make a decision that is positive for you, but be as gentle with yourself as you would with a beloved friend.
Hugs
Elaine
Welcome, Phoebe! I am brand new too and was just diagnosed last month. My symptoms are primarily dry mouth and hoarseness. I am still learning so many things regarding Sjogren's so don't really have any advice yet! :) However, I think we have both found the right place with great people and vast information to help us along this journey.
Hugs!
phoebe38
My sincere condolence on such a devastating loss to you and your children.
I am so happy to hear that you are in therapy. I hope your therapist is offering family sessions as well to include the needs of the children.
Sjogrens symptoms, change, come and go.
Diary: If you keep a short diary and not possible trigger...you will see a pattern of things you need to avoid, as best you can.
There are some easy lifestyle changes (that will benefit you children as well)
Myself: I noted the advice of an anti-inflammation diet. Sugar will wreck havoc with my body now, although I was not much of a "sweets" person before.
Direct sun between 11-4pm will give me a headache, etc. UV sunglasses help.
I need to keep my bedroom cool at bedtime...fan going in the summer, vents closed in the winter.
Nightime I use eye drops (not liquid tears) and an ointment. And I take a low dose 81mg (baby aspirin strength) at night to prevent, curb inflammation. Fish oil in the AM.
Just things we learn. I had dizziness and I believe it is part of the inflammation process.
Baking soda in water may help you with Acid Reflux..you can look it up. But, try to see if it only happens with certain foods, and if you are eating close to bedtime.
Here is a Patient guide
http://www.dry.org/fox20020816/guide.htm
Thanks everyone...again. Having a very bad day. Anxiety, nausea, dizziness and very tired and I haven't done anything at all today and just an overall bad feeling. I was diagnosed over the phone...the nurse called and told me. So I have nothing to go on yet. I am just not used to the severe fatigue and everything hurting and being so sick and dizzy
Can you try to get outside and get some fresh air.
Sometimes even a small thing like stepping outside has helped me...really.
Find a shady spot and just try to relax, sip water (liquids)...
...then think of those wonderful kids, something funny they do? Anything to try to lift you a bit.
Even a 10 minute walk in the fresh air can help.
I am feeling a bit better. Just worried about how I am going to do this all alone ans sick. I did go into the family room and play a bit of music and relaxed for a bit. Thanks for all of your support. Being newly diagnosed and put me into a tailspin and made me worry WAY more than I probably should. I wasn't as bad as I am now, before I got the diagnosis...go figure. :'(
Thank you, Thank you, Thank you for your post!! I like the one day at a time thing. I get so worked up...I need to stop that.
(((((((((Phoebe) ))))))));
I welcome to a wonderful group of supporting folks who are full of awesome information and advice.
My heart aches to hear your story.
I have days where I cry and worry about what I cant do instead of focusing on what I can do.
We all have bad days and deal with them differently but we all have learner to deal with it.
You will go through the stages of grief over this AI too.
Take time for you each day and don't beat yourself up if you don't get things done.
Keep track of your symptoms for your doc appointment definitely too.
I still get nausea with sjogrens and I take omaprazole and zofran for my reflux and nausea.
I still freak at the amount of RX I take but they and my supplements all are a part of what gives me my life back better than it was.
I wish you better days one at a time.
Thank you so much for your reply grammad97. I woke up this morning with severe nausea, dizziness and fatigue. I am also shaky. I never felt this bad before my diagnosis last Wednesday. I am thinking this is all the worry I have associated with being diagnosed. I don't know...I do know, I don't like feeling like this...
Phoebe38-
I take an over the counter medicine called meclazine for nausea and dizziness. It is on shelf at Walmart;Walgreens etc. I purchase it in the larger quantity bottle 100 tabs for less than $6. COSTCO sells it behind the counter and you just ask them.
It helps me a lot. It can make you a little tired or drowsy though so exercise caution. Peppermint helps nausea also.
No one should feel unwell all the time. Its the part I HATE about sjogrens.
Thank you again grammad97...I just started taking Zoloft 50 mg 2 nights ago and I think that may be one of the reasons behind the nausea and dizziness. Probably a bit of both. I called the doctor on call and she told me to take Dramatine? I will look for both. I am waiting on a ride to go because I don't want to drive alone as dizzy as I am..thank you again for the help. :)