Fibro,RA, and Sjogrens

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Djcks
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 11/6/2009 8:52 AM (GMT -6)   
Hello Everyone, I am fairly new to this site, I was on the Lupus chat but recently found out its not lupus I have, It is Sjogrens,Fibromyalgia and Rhuematoid Arthritis. My Doctor put my on Plaquenil just started it yesterday, I am also on Percocet, Gabapentin, Meloxicam,and cymbalta. I have been living with awful pain and no strength for long time. Since Janurary this year I have not been able to work. I am waiting for disability hearing which can take up to 2 years. I have had thick saliva and sore tongue due to dryness it is hard for me to swallow even liquids at times. I suffer with eye pain in mornings mostly, I was wondering if anyone has Fibro,RA, and Sjogrens on this site and recieving disability? and would be interested in knowing your symptoms your going through. I have had trouble with bladder retention and etc.
Thank you for being here to help.
Deb

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8003
   Posted 11/6/2009 9:37 AM (GMT -6)   
Find a good eye doctor and get into see him/her...you might need eye plugs, my eye's got so scratched from dryiness I had scratches on the cornea's, they'll heal with the eye plugs and restasis...Sjogren's can really bother the eye's and on plaquenil you'll need feild vision checks as it can have a bad side effect with your eye's...I'll be starting plaquenil soon too.....I did a google search and got more info on plaquenil..
Hope this info helps...
HUGZ
((((((((((((((((((((((((((((((((((((((((((((((((Deb))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


moggy914
Regular Member


Date Joined Jan 2010
Total Posts : 62
   Posted 3/9/2010 10:28 AM (GMT -6)   
Djcks,
           I have all 3 also! I was dx'ed with fibro a couple of years ago. My rheumy long suspected RA but with more symptoms happening over the past couple months, she finally decided to make the diagnosis. She said "You probably have Sjoegren's too" because I wake up every morning with dry crusty eyes. I had an eye dr. visit about a year ago when I thought I was developing Grave's disease, and the eye dr. did a Schirmer tear test. He put a small piece of special paper in my eye on my lower eyelid and I had to sit there for a few minutes. They measure how much tear production you make and then diagnose you based on that. He said I definetely had dry eyes, but we were'nt thinking about Sjogren's then. He recommended eyedrops and either fish oil or flaxseed oil. I use the eyedrops and I have to go back soon because I just started Plaquenil and have to get the eye test that goes with that.
 
  I take Lyrica for the fibro, and I just started the Plaquenil less than a month ago. My doc keeps throwing prescription NSAIDs at me and they work for a couple days and then stop. I don't even bother with over-the-counter pain meds because they do nothing. I am still in the process of learning how my body reacts to the fibro and now to the RA. Sometimes I can't tell what is caused by which! Here's what I do know: I have to parcel out my energy and decide what I am going to do each day. If I go out to the store, then I have to make sure I have somethig easy to make for dinner because I won't have the energy. I can clean for about 15-20 mintues but then I have to sit down and take a break. The fibro makes me stiff all over and tired. The RA makes my finger joints and now my larger joints (elbows, knees, ankles, hips) ache. I have had to give up alot of stuff that I used to do (like making jewelry) because if I use my hands too much I am in terrible pain. I call my hubby my sous chef because he preps all the food (peeling, slicing, etc) and I just cook it! I have a stool that I sit on when I am cooking dinner if I am not having a good day.
 
Now that the weather has gotten warmer I am not in as much pain. When we had all the cold weather and snow last month I was miserable. It seem that I am much more sensitive to the cold now. During the summer, the humidity really bothers me too and if I am outside for even 20 minutes I can feel my body getting stiff & achy. I don't know what I am going to do this summer, because I have 2 school-age girls and a 3-year-old boy, and they are all active and love to play outside in the summer!
 
  My eyes are dry a lot and I wake up with crusty eyes. My mouth is dry a lot too. It seems like now when I read my kids a story at bedtime my mouth gets really dry and I start almost choking, but then , my mouth has always been dry!
 
  Please know that you are not alone! I know how hard it is to always be tired and in chronic pain. Even dealing with being in pain tires you out! Keep talking to your doctors and try and get some more answers. And keep comong back here for support and to vent if you need to!
 
 
Diagnoses: Depression/Anxiety, PTSD, Hypothyroidsim, High Blood Pressure, Fibromyalgia, Raynaud's, Rheumatoid Arthritis, Osteoarthritis, Sjogren's
 
Meds: Celexa (once a day), Buspar (2x a day), Levoxyl (once a day), Metoprolol (once a day), Lyrica (3x a day), Plaquenil (2 times day), Clonazepam to help me sleep for the moment until I find something else.
 
Allergic to: Sulfa, Ceftin, Augmentin, and Synthroid (probably the filler).


ContraryMP
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 3/20/2010 12:19 PM (GMT -6)   
Hello, I also have Fibro, Sjogren's with peripheral neuropathy, RLS, and osteoarthritis.  Most of the time I can't tell which is attacking from day to day.  I've been on Ultram, Relafen, Plaquenil, and Restasis for quite a while and started Lamictal for the neuropathy a few months ago.  Neurontin didn't work, and Lyrica just caused too many side effects.  Like most people with auto-immune diseases, my vitamin D3 and B12 levels are low so I take supplements for them.  My opthalmologist did the punctal plugs on my lower tear ducts over a year ago.  I still use Systane drops and chew sugar-free gum for the dry mouth.  My lips are chronically chapped which means lip balm is my best friend. :-)  I am having trouble with burning mouth and throat and acid reflux, so it may be time to see the Gastro and have it checked.   
 
I still work full-time in an office job.  It's getting more difficult because of the chronic fatigue and pain.  Some nights I have an intense attack of neuropathy pain with RLS and don't sleep at all.  I used to stay home from work the next day, but I'm taking off too many sick days.  Now I try to catch a few hours sleep in the morning and go in late, or just bite the bullet and go to work.  Yesterday was such a day.  It is *very* frustrating. 
 
Living in Florida, I find that heat and humidity are harder on me than the cold.  Stress aggravates my symptoms more than environment does.  Thank God my office manager is very sympathetic, and my husband tries to help out as much at home as he can.  We are raising our 10-year old grand-daughter since her mom was killed in an auto accident a year ago in Dec.  That challenge overwhelms us both at times.
 
I agree that pacing yourself, asking for help, and taking plenty of breaks are the best things you can do.  Getting approval for disability should not be as difficult now that SJS is on Social Security's list of disabling illnesses.  With RA, FM, and SJS, your case is even better.  Good luck and don't give up hope.  Reapply if necessary.
 
Blessings and ((hugs))
        

Fibro-Sjogren's-OA-Neuropathy-Hashimotos


mightym
New Member


Date Joined Apr 2010
Total Posts : 1
   Posted 4/18/2010 11:03 AM (GMT -6)   
I am new to the forum and find your posts very helpful.  I was diagnosed with Fibro about 15 years ago and about a year ago got Raynauds, and now I seem to have Sjogrens.  I am having such difficulty with the fatigue, anxiety, and pain in my neck and head area.  I see a holistic MD and she has me on a compounded thyroid med, adrenal support and some other vitamins.  I take cod liver oil, fish oil, and GLA for my dry eyes.  I recently had plugs put in both the upper and lower lids, but still have crusty eyes in the a.m. and sometimes pain.  My rheumatologist said I have fibro, raynauds, and undifferentiated connective tissue disease since none of the specific tests were positive.  I have high ANA but that is all that came back.  I do get the dry mouth at night and have a terrible time sleeping. 
 
I still work a full time job but lately applied for Family Medical leave act - intermittent days so I can protect my job.  I have been missing more and more work and having to go in late or leave early.  The fatigue seems to be intermittent since some days I feel ok and then I am down and out for several days.  Is this normal with Sjogrens?   
 
I read a lot of posts that you all take plaquenil and a lot other meds.  How are the side effects and do they help?  What about using low dose naltrexone?   I have read good results with that.
 
What do you all take to help with depression/anxiety?  I am getting so frustrated since I use to be able to bike, run, and be very active. 
 
Getting so tired of the pain, and fatigue....it can be so overwhelming. 
 
Thanks all.
 
 

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/2/2010 8:26 AM (GMT -6)   
I so wish I could take NSAIDs or Ultram. One dose of NSAIDs and I start getting itchy allover and on ds of Ultram and my throat starts to close up. I'm also highly allergic to adhesives and anythig that is shellfish derived. I feel like my options are so limited.  However, I do find that at least Lortabs seem to give me a little boost of energy that at least gets me moving.


Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg, super B complex, multi- vitamin, folic acid, 15mg er morphine twice a day and Lortab 10 3-4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7.  Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 

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