Fibromyalgia AND Sjogrens

[lesleyo]

  I'd been dealing with pain in my joints for a while before that. I'd mentioned it to my doctore MONTHS before.  I said I'd seen commercials for Fibromyalgia and wondered if that was what my problem was.  He kinda blew it off and was like, "Oh well, thats really hard to diagnose."  He did bloodwork to check my thyroid and ran an arthritis panel.  They called like two weeks later and said it was all normal.  So, I went on about my every day life and grunted and groaned every morning when I got up.  I joked about "Oh Im getting so old!"  I had a hysterectomy in June of 08.  Within days my pain levels exploded.  But not only that, I began to show other symptoms.  My mouth was on FIRE.  I couldn't eat.  It felt like I had needles in my entire mouth and throat. I called the Gyno who did the surgery, he didnt know what it was. He said to call my primary dr.  I called them, went in and they said to call the gyno.   
I ended up going back to see my primary and he decided I had a bad case of thrush due to all my body had been thru--the surgery itself along with complications that occured when my bladder ripped during surgery.  I had to wear a catheto for SIX weeks.
He put me on a swish and swallow compound and I was on that for like 3 months.  Nothing helped.  Finally, I just decided I'd have to deal with it.  Symptoms slowly started to go away and then they'd come back.  And they'd go away and then they'd come back.
My eyes started becoming more, what I thought was allergy prone..but apparently it was something else. 
Finally I went back to the dr yet again, in January of 09.  I was in tears b/c of the pain in my joints.  Dr decided to run ANOTHER arth panel--and I guess they did an ANA then too, but it was normal.  He sent me to a rheumy anyhow.  That guy was a JOKE.  He poked and prodded on me and finally said I had the classic signs and symptoms of fibromyalgia.  He put me on a low dose of Lyrica.  I would go in every 3 weeks and each time he would act like he was suprised I was still hurting.  My hands and feet were swollen.  He'd simply up the meds.  I was up to like 150 mgs of Lyrica when I finally decided that was enough.  In the course of seeing this particular rheumy, I came across some information on Sjogren's Syndrome. As I read the information I was like, "wow..this is exactly how my mouth feels all the freakin time!"  I printed it up and took it with me to my next appointment.  That day was the last day I would see that doctor.  He looked over the print out and threw them back at me and said I was stupid for even asking about that.  That my problem was just simply the fibromyalgia. 
Fast foward to Sept 2011..I decided to go to the doctor to have some other things checked out--and they said they'd do some bloodwork.  I asked about having an ANA done again and the Dr asked WHY?.  I simply stated that I was told in 09 that I have fibromyalgia and that my joints hurt horribly.  And that various joints hurt worse than others.  So, blood was drawn and two weeks later, I got the results.  All the tests they ran were normal..except the ANA.  It came back positive--speckled--and had a titer of 1:320.
I have friends in the medical field and they were like, "OMG!"
I just saw a new rheumy this week on Monday.  I had NO idea what to expect.  First thing they did was xrays from head to toe.  He went over them right there with my husband and I.  He said my bones/joints looked great---a few tiny bone spurs on my spine but nothing to worry too much with at the moment.  He said I've got some arthritis in my back, between vert 5-7.  I asked him why my knees and joints hurt SO bad and he said it was b/c of the fibormyagia.    As far as all of my other symptoms--like the issues with my eyes being so dry and my mouth burning all the time and being so sensative, etc, he said he believed that I did indeed have Sjogren's Syndrome as well as the fibromyalgia.  GREAT!....No seriously..at least I have more answers.
They put me on a low dose of Cymbalta to see how it works, b/c I said I refused to try the Lyrica again.  So far, the pain in my knees is less...my feet and hands still hurt though.
So, with all of that said..how many other people on here have Sjogrens and fibro or something else.  Have you changed your diet any?  What have you found that helps with your pain levels?

[KellyG999]

Hi lesleyo,

Welcome.

I have sjogrens and Fibro too. I have tried Lyrica, Cymbalta, Savella, and voltaren. Nothing helps, and I couldn't tolerate most anyway. I have to use real pain meds to get any relief or functionality...I have tramadol and Vicodin.

Good luck,
KellyG

[4Kids]

I can only help with your mouth. You need some sort of fungal control, the Nystatin with sugar in it won't work. If they make a truche, with sugar free sweetener, it will help. There is also liquid Diflucan which will help too. Same deal, ask for sugar free sweetener.

Try and get Salagen etc to help that part.

The rest i can't really help with...

[Bucky]

Hi Lesleyo - welcome.

I bet it's a relief to you to finally KNOW that the symptoms you've been having for years really was something and not just something you were imagining.  That story is repeated here often.   

I've read in others threads how some doctors DON'T like it when their patients have been researching and then come into their office with copies of information or asking about certain procedures, etc.  Yet, it should be a teamwork effort where doctor and patient work together to put the puzzles of our health in order.  The ones (doctors) who don't like it, are usually the ones people leave and move on to someone who will listen and work with them.  Doing research for yourself is called being proactive in your health - a doctor should want that!!

Yes, many members here have both Sjogrens and Fibro.  It is not unusual for auto-immune diseases to run in packs - misery loves company 'ya know.   

If there are certain topics 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 that topic.

Diet and Sjogren's comes up often here on the forum - if you do a search on it, it will bring up many threads in reference to that.

Have you also been to an Ophthalmologist for your eyes?  There are drops, plugs, etc. that can help with the dryness there.  If you use eye drops, make sure they are preservative free.

One little favor please . . . when you post, please leave space between your paragraphs as "block" paragraphs are hard for many of us to read.  Thanks.   

I hope you find this site helpful to you on your Sjogrens journey.

Bucky

[Joe S.]

Welcome lesleyo. I believe that I am on the SEE FOOD diet. You know the one: you see food you like and eat it. I also have a 6-8 oz glass of carrot juice every day to help with pain relief.

[KellyG999]

Welcome lesleyo. I believe that I am on the SEE FOOD diet. You know the one: you see food you like and eat it. I also have a 6-8 oz glass of carrot juice every day to help with pain relief.

I am with Joe. I have so many issues including tummy issues, I eat what I want. I am a vegetarian, so I don't eat meat but I do eat dairy. I try to make sure I get fruit, veggies and protein every day. I also enjoy treats so I don't dent myself when I want one!!

I do take vitamins, supplements, etc to help.

KellyG