I'm back and not sure where to start

[engy]

I haven't posted in a very long while.  I check in every month or so but 2016 was a good year for me.  I felt well and I've been busy working and living life. 

However... 2017 has been horrible so far.  It started with an upset stomach at the beginning of January that hasn't gone away.  The nausea is the worst in the morning.  I finally went to my gastro. Yesterday and he did a CBC, checked my celiac antibodies (to make sure I'm not getting CC'd) and did h pylori test.  Then gave me omeprozole. I took one last night and it was horrible.  I had a lot of symptoms that I had when I was first DX with Sjogrens.  Chills, anxiety, dizziness, feeling like pins in my skin and I had muscle tremors.  It scared me pretty bad.  I stayed home from work today because of the fatigue, nausea and just achy.  I'm a wreck.

Is this possibly a worsening of my diseases?Where do I go from here? I usually feel somewhat okay from about 10-6 pm (not without symptoms but not feeling like I will puke and have a nervous break down which is how I feel early in the morning.

I have my regular scheduled rhuemy appt. next week. 

My CBC all came back normal and thyroid meds all normal so far.

Anyways, I have always found comfort in this group and so I'm here to vent and cry a little.  I'm thankful for the good days but so worried about what is up ahead now that I feel so awful again.

I'd appreciate any words of wisdom, advice and comforting thoughts as I am having a pity party and you're all invited!

[Joe S.]

Do not Panic.
Remember to breath through the pain.
Management is key.

[engy]

Thanks Joe!  I am trying some relaxing breaths now.  I am struggling with calming myself down and not worrying.

[Joe S.]

It takes practice when you need it and when you do not need it. I use it to sleep each night.

[JoannaP79]

Hi Engy,
I have recently started having these exact symptoms quite severely. I haven't hadn't he autonomic issues diagnosed but feel it is exactly what's happening. The morning is the worst, the panic, the stomach spasms and inability to eat, palpitations and awful shaky weakness. Once gone to the toilet and about two hours later things are better. I dread each morning and what will come. I thought I was going crazy until I read more about autonomic issues.
I hope you can get these issues under control :-)

[engy]

Joanna, I'm sorry to hear you're not feeling well.  I have been diagnosed with dysautonomia (POTS) which seemed to get better when I started Plaquenil and all my supplements. I wonder if that is flaring up for me now too because my mornings are so awful! I will bring this up to my rhuemy next week and my neurologist is next month.  Ugh.  I hope you feel better soon too.

[SjoGirl]

egny has there been some change in your circumstances that might have triggered what may be a flare, e.g., death in the family, increased stress on the job, etc.? I've found that such matters can end up kicking off a flare.

I also have learned that it's possible to have panic attacks in your sleep. Could that by any chance be what is happening?

FYI I'm not attempting to suggest that this is "all in your head" and not real, rather that if your stress levels have risen for some reason it could be one of many possible causes for what is transpiring.

[engy]

SjoGirl, good questions. I don't think anything has changed to cause this.

I don't know what is happening in my sleep but I definitely end up panicking!

Getting ready for bed now & im scared about how the night will be

[warmwaters]

Just a hello, we hear you, and you'll find a way to sort this out. It's good you've got a rheumy appointment so soon.

Keep us posted on how you are doing.

[irish]

Welcome back but sorry that you feel so rotten. I have to tell you that I suffered with nausea for about 4 years. I woke up every morning with nausea and it drove me crazy as it ruined my sleep. I would be so nauseated and saw many doctors and did the blood work to no avail. I was nauseated and I sure had to put up with it.

I tried a lot of things and the thing that worked for me was gingersnap cookies and cold 7-up with ice. Gingersnap cookies are anti-nausea cause ginger is an anti nausea spice. It is mother natures drug for nausea. I sometimes would put about 2 ounces of orange juice in my pop and it seemed to satisfy something ---- my only thought was maybe I needed a little potassium.

This nausea stayed with me off and on all day and just seemed to hang around. I got really sick of it but the good thing was I did not vomit. I was able to eat but had appetite aversions and some days could only eat cold cereal. I had to watch what I was eating cause I didn't want to miss out on any of the essential nutrients.

The research I have done over the years has talked a lot about the nausea of autoimmune disease. I am still nauseated every day and am nauseated as I do this post. Again it comes every day but thankfully it doesn't wake me up at 4 AM every day.

You might want to keep a notebook of your nausea relating to your other symptoms plus keep track of any infections that you have. The one thing that could be giving you problems is your gallbladder. People with sjogrens tend to have problems with their gallbladder and often feel better after having it removed. The liver secretes the bile and it is stores in the gallbladder and when we eat fatty foods the whole process is kicked into motion. If there is a hitch in this sequence and there are some gallstones or low grade infection in the gallbladder or failure of gallbladder to empty itself of bile, plus any other issue, then one could have symptoms.

Keep track of any pain your might have in back, stomach and all over plus heartburn. You may find the answer to the nausea on your own. If you can find a good gastroenterologist who understands autoimmune diseases you may luck out. Also, the pancreas can be involved in this also. Look up pancreatic insufficiency and see if this rings a bell with you. This can also be a problem for sjogrens patients. It is not real common but worth investigating. Good luck. Irish

[engy]

Thanks Irish! I started my notebook of foods/symptoms again and it has helped me find some foods that are soothing for me to eat at least.

My gastro. Really wants me on an acid reducer like Pepcid AC.  However, everywhere I read it says don't take if you have lupus.  I have lupus symptoms but only Sjogrens bloodwork so my DX isn't lupus.  I tried omeprazole one night and had horrible side effects like whole body tremors.  I'm scared to try Pepcid now.  Any suggestions on what I can take?  I do not have heartburn but he seems to think it's the acid causing my upset stomach (nausea, gnawing, churning- different feelings that come and go all day).

[Nymph]

Hi Engy,

I, too, have POTS. I sometimes get nauseated in the morning and have diarrhea. It is not pleasant, and especially annoying when I am trying to get to work. Sometimes just have to eat a few nibbles of dry Cheerios or something to calm it down.

Back when I was eating gluten up to five years ago I was nauseated all the time. I sucked on two the three peppermint Altoids a day and that really helped. I would occasionally get ulcers. Gluten free cured me of that problem.

However, sounds like this is a new thing for you so more likely related to POTS. I would recommend trying peppermint or ginger when the nausea hits, then nibbling on something soothing like Cheerios or crackers to ease yourself back. Do you take in enough salt? Minimum for me is 4 g daily in capsule form. I take 2 g in the morning with 8 oz of water before I get out of bed. You may need more or less. Experiment with your morning routine to find what works for you. You might also be getting too dehydrated at night. I also drink about 12 oz before bed with 2 g salt and drink some more if I wake up during the night.

You will find a routine that helps, I am sure of it. If not, saline infusions might be an answer. I know they help a lot of people.

[engy]

Nymph: Thank you so much for the tips!
I am strictly gluten free (my whole family is due to Celiac) but I know I'm not getting enough salt.  I cannot take capsules/tablets or I vomit.  Maybe I'll try some Lays potato chips because they always seemed to make me feel better ?! I haven't had them in a while because I had been cutting out potatoes and rice.

I'm sure I need to increase my fluids too.  Especially at night.  I will try to get in 12 oz. before bed with some salt.

I made some ginger tea and that has seemed to help too.  I love ginger ale but hate all the sugar in it so I'll stick with my homemade ginger tea for now!


Warmwaters: Thanks for the well-wishes.  I so appreciate you wonderful group of people!

I ate breakfast okay today but barely ate dinner last night.  Luckily I'm able to be home for the weekend to rest and take care of myself.  I have an extremely busy week coming up- one day at a time though.

[Scottietottie]

Hi 

Sorry the start to your year has been so bad.

We all react so differently to medications. Obviously Omeprazole is not for you! There are other meds that may do the same job but suit you better.
Hope you find answers.

Take care - Scottie 

[irish]

Engy, I have to add that I have Sjogrens blood work and my immunologist and dermatopathologist have thought for years that I have lupus but the blood work never comes back positive. I have been on the plain Pepcid years ago without any issues. I took it for years. I have taken many different meds like that and have been on omeprazole 40 mgm twice a day for many years now.

I am suffering from an increase in my thyroid blood work and hypothyroidism is much worse right now. I did some research and found where nausea was one of the symptoms. Have you had your thyroid checked or had the TPO blood test for Hashimotos autoimmune thyroid disease. The treatment for Hashimotos is usually the thyroid medication. Just a thought. Irish