Could Sjorgren's alone cause this much pain?

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 4/28/2010 8:53 AM (GMT -7)   
Hey Everyone, I usually post on the Lupus board because that was the direction my docs were pointing me for a long time.  I'll give you my story, so bear with me if this gets a little long.  It all started about four years ago with a sudden outbreak of severe hives and I mean really severe.  I had to take two benedryl just to sleep at night.  Huge red welts about 8-10 inches long at the largest all over my body, sometimes pressure induced, sometimes not.  Itchy, painful, hot and all the way to the bone.  Had allergy testing, nothing.  Had auto immune panel, Positive, speckled ANA 1:640 titer, Positve RF(don't remember original number, but it always been positve). Was put and claritin and zantac, helped some.  Then I got pregnant and lost the baby very quickly.  Ayear later I was pregnant again and was able by the Grace of God to carry him to a strong , healthy full-term.  During my preggy time,  started to develope joint pain and swelling in my hands.  We had no insurance and the clinic doctor suggested that this was the start of it all and I need to see a Rheum as soon as the baby was born and that it was probably SLE.  This was 2007.  At my first Rheumy visit, I was put on plaquenil and pred.  At the time, was nursing so my options were slim.  I didn't notice the affects of the pred at first because I would clean the house all day and do all the things I hadn't been able to do for so long and then call the Rheumy and tell him how crappy I felt at 30 mgs of pred.LOL my bad.  Anyway, this whole misunderstanding was his fault for not explaining how wired and jittery the pred would make me and mine for not seeing what I was doing to myself.  Hell, I cleaned a whole carpet with a spot cleaning machine.  So this doctor went on the whole Fibro path, I had none of the pressure points, but I did have sun sensitivity, sore in my nose and mouth, rah on my face, joint pain in my hands and feet requiring ever increasing doses of pain meds(I'm allergic to ALL NSAID's), migraines, fatigue like the first day of a flu, trouble concentrating and two young boys to try to keep up with.  I tried to find another Rheumy and had to find another PCP because my former pCP thought I was drug seeking.  I now have a great PCP and he ran some test that were suggested by the Lab on labwork run by the first Rheumy nearly 3 years ago.  All of the Sjogren's markers were very positive.  I have very mild dry eyes, very mild dry nose, vaginal dryness, dry skin etc all of which are fairly easy to maintain.  My worst issues are the migraines, sometimes 2-3 times a week, the fatigue, and joint pain is still the worst.  I see a pain mgmt specialist and am taking way too much pain medicine (ER Morphine and Lortabs) but what can I do since I can't take NSAID's and without anything I can barely move?  I started MTX about a month and a half ago and although I do feel somewhat better, it isn't enoug to feel like I can start to taper off any of the pain meds or the 5mg of pred I take everyday.  I'm going to a new Rheumy at the Emory clinic in Atlanta, but not until July 1st.  I hoping for some answers, but I'm realsitic as to the way this diagnostic process goes.  I guess my question is this:  Could all of this really be attributed to just Sjorgren's alone, or is it more likely that I probably have a Lupus or RA overlap?  Just wanted some input.  Thanks to you all.  
 
P.S.  Please excuse any typing or spelling errors, I thinkl that's the most typing I've done in one sitting in years.

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, Zomig for migraines.  Allergic to all NSAID'sand Ultram.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain and swelling, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, with speckled pattern, positive RF and positive for Sjorgen's Syndrome.

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 4/28/2010 9:31 AM (GMT -7)   
Hi Jennifer,

The Sjogren's Forum is new, and we don't have regular posters yet. From what I've read of Sjogren's, it is directed at moisture-producing glands, thus more related to dry tissues, both internal and external (eyes, nose, mouth). Mine is pretty mild...I've read of problems with internal organs, but not with sun sensitivity or headache. But the Emory dr should be able to clear this up for you.

There isn't a lot of info out there on Sjogrens from reputable places (cdc.gov, lupus.org, rheumatology.org or possibly webmd.com), but here are a couple of general descriptions.

www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/sjogrens.asp
arthritis.webmd.com/tc/sjogrens-syndrome-topic-overview

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 4/28/2010 10:39 AM (GMT -7)   
Thanks, Lynnwood. I'm the one that sent you the email out of the blue. I told you that I would eventually get around to posting the whole story, well as consise as could make it. Sometimes it seems that the patient knows more about what condition they have then the doctor. These diseases seems so obscure and scary that the only sense of empowerment we can get is from aquiring as much knowledge as we can and keeping detailed symptom lists, med lists, medical histories etc. Beyond that we pretty much have to just follow orders and take each day as best we can. I feel like I'm more where you are, where the Sjorgren's is a mild secondary to the big nasty beast, Lupus. Take care.

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, Zomig for migraines.  Allergic to all NSAID'sand Ultram.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain and swelling, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, with speckled pattern, positive RF and positive for Sjorgen's Syndrome.

 

 


ErinG
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 4/29/2010 10:08 AM (GMT -7)   
Hi Jennifer,
It's possible you have an overlap of RA or Lupus, but it's not uncommon to have a lot of pain with Sjogren's.  My pain isn't too bad, usually just my knees or hips, and occasionally I get the feeling that my skin is bruised and it's painful to the touch (from my neck to my knees).  Once in a rare while I will wake up and feel like I have the flu or that I've been hit by a truck.
 
Sun sensitivity is common, I get a rash when I'm out in the sun or heat for an extended period of time.  I started getting this in my late teens (I'm 29 now).  Some medications can increase your sun sensitivity, too.  It's recommended to wear sun-protective clothing, hats, and high-SPF sunblock.
 
Have you asked your doctor about a higher dose of prednisone?  I'm not sure what your inflammation markers are like, but I was started on 60mg (due to my kidneys...another story) and it was like someone flipped a switch.  I felt great!  The only time I hurt was after a few days of no sleep and my body started giving out.  I know no one loves being on prednisone (the jitteryness, weight gain, long-tern side effects), but maybe a higher dose is something to ask about
 
A good resource (as well as another message forum) is sjogrensworld.org.  There are links to articles as well as books on Sjogren's.  I was able to find the books through my local library.
 
- Erin
29 year old female (full-time accountant/part-time student)
Dx'd 2009:  Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon
Rx:  Cellcept 1000mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 20mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin 
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 4/29/2010 4:37 PM (GMT -7)   
Hi Erin, and thanks. I just came off of being on a daily dose of 20mg pred for about 9 months. I starved myself to try to keep the weight off, the mood swings were unbearable, especially considering some major conflicts in my marriage last June. Yeah, my pain was less, but I was borderline crazy on it. I'm managing on 5mg, but everytime I try to cut back to 2.5, the pain and swelling in my hands is much worse that I go back up to ten and taper back to 5. I've always had some degree of sun/heat sensitivity. I once passed out at summer camp from the heat in Miami and was raised there. I didn't go to the beach often even though it was only about 20 mins. away, because I would be burned in about 20 minitues without gobs of white gunk all over me. Now, the sun and heat even give me migraines. I think its it's got to be an overlap, but since those test came back for sjogren's, I am noticing the the dry mouth, nose, skin, hair, eyes, etc. I'd swear it almost seems psychosomatic. LOL I wish it were. Thanks again for the input.

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.

 

 


Kesi
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/28/2010 8:39 PM (GMT -7)   
New member and just reading through posts (I have Sjorgrens). I take Plaquenil and my doctor said it makes you more sensitive to the sun so she cautioned me to use sunscreen daily and at least 30spf.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/16/2010 11:47 AM (GMT -7)   
Do you just want to feel better or get a definitive diagnosis? It could be that you have overlap disease or more than one auto immune disease. Have you tried any of the anti-depressants or anti seizure drugs like Lyrica to help with pain or cut down on the narcotic pain meds?
Here is the grid I got with a lab report from Labcorp. I hope I do this right

Pattern/ Antigen Detected/ Suggested Disease Association

ANA pattern homogenous/ smooth+DNA da,aa, HIstone High titer/=SLE

ANA speckled pattern/9m,RNF,SCL-70,SS-A/SS-B= SLE, Mixed connective tissue, Scleroderma Sjogrens

ANA nucleolar/SCL-70, PM-1/SCL,/high titers= scleroderma, polymyositis/scleroderma overlap

ANA centromere+centromere=PSS w/ Crest syndrome variable.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


Wobbly1
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/10/2014 6:20 AM (GMT -7)   
First off, congrats on being a mommy, and I am so sorry for the loss you had previous. I don't read these posts often but boy do I have compassion and empathy when I do. To answer your question, I have Sjogren's and Fibro and my pain level is pretty much off the charts. I would say on a good day I am between a 7-8, any weather change or a day of cleaning and sometimes for no reason I can figure out, I am up to 9-10. I can share some things that have helped as I am allergic to all NSAIDS, too, which really stinks because they really help. For the migraines, I keep imitrex and meclizine with me at all times, as well as Fiorcet. As soon as I feel one coming on, I will try a 1/2 a fiorcet because they knock me out. If it doens't kick out, but improves, I take the other fiorcet and know it will definitely be a down day. If it is still not working, I take the imitrex. I hate taking all these meds but was having chronic migraines with vomiting and this has at least helped me to kick them out and given me a little bit of an arsenal to fight back with. Having the Meclizine is great. If I feel like it will be a vomit headache, I take that and it has greatly reduced the vomiting episodes. The sun problem stinks...geez. I hate hats but purchased an Under Armour hat from Bob's Sporting Goods, specifically designed to protect from sun and UV rays. That helps some. http://www.underarmour.com/shop/us/en/cold-black I can't even go to the dentist without keeping my shades on to protect from that light shining in my eyes. I will say, from an encouragement standpoint, that a year ago I was living on Tramadol for the pain. Taking the 1/2 fiorcet and asprin when needed has gotten me off the meds that made me feel like a zombie. I am trying water aerobics and it helped but my skin broke out in a horrible rash. I am going to try again because the water really helps. You are getting hit from so many sides. Hang in there.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/10/2014 7:00 AM (GMT -7)   
It is possibly a over lap. Sjogren's can cause nerve pain. Call this new rheumy's office and see if you can get on the cancellations lists to possibly get seen sooner...Congrats on the new baby...
Many well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 3/10/2014 8:13 AM (GMT -7)   
Sometimes it's important to check the dates on the threads -- this "new baby" was born back in 2010!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/10/2014 5:16 PM (GMT -7)   
Thanks Lynnwood, ya got me....wow that goes to show how tired I was...
Hey Wobbly1, could I ask you to possibly start a new thread and introduce yourself, nice to meet you and sure wish it was under better circumstances than Sjogren's...Many prayers and well wishes and please don't be a stranger and come introduce yourself...nice that you tried to help someone else out....
You can post a new topic it's in the upper left hand corner...
Thanks Lynnwood and maybe lock this thread...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******
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