Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Sha on January 18, 2011, 10:07:34 PM

Title: Update
Post by: Sha on January 18, 2011, 10:07:34 PM
Got my labs back today 3 pages of mumbo jumbo...sjogren's was positive, Vit D is super low, iron low, positive ANA....those ones are easy, but the rest.....well forget it! Had my GP look at em and she said they didn't show much that she could see other than the above listed. I definetely have a sjogren's dx, which I already knew!

I have to call them tomorrow cuz his letter said to call or make a followup appointment. I already have a call into him asking the nurse to ask him about all the other AI diseases he was talking about (spondyloarthritis, Lupus, firbro, antiphospholipid acids  and some other hearing sensory one ...so I wonder why he hasn't called back yet (I called on thursday or friday of last week). I figured he would call today, but no message on the answering machiine on either phone....I don't worry that he will be thorough when I do get a hold of him, though ;)

My GP said she couldn't do anything more for the pain other than allow me to take 3 tordal a day instead of 2 (along with the 4 hydrochodone) I take until she hears from my rheumy as to what dx's he has confirmed since he believed sjogren's was secondary to something....Until then  :o Pain! So...guess it is try like heck to get a hold of him tomorrow cuz my back is KILLING me! 

My GP said just cuz my labs were neg for Lupus (got results today) doesn't mean I can't be seronegative (she was the one that brought the seronegative part up). I guess you can be seronegative for just about anything that you have symptoms for, but test neg...If it walks like a duck, quacks like a duck, I guess it is a duck!!

I do love all my docs so i guess that I should at least be greatful for that!!

Does anyone have primary sjogren's that their doc said sjogren's was the cause for their back pain??

My joints are getting much worse in a VERY short amount of time ::)
Thanks for listening and caring!!

Sha
Title: Re: Update
Post by: Meld256 on January 18, 2011, 10:17:27 PM
Hi Sha,
Isn't it interesting that so many of us have very low Vit D? I hope you are able to find out more with the followup appt.

I'm somewhat in the same situation with joint and back pain. My knees have become much more painful (they hurt all day, everyday and burn) and my lower back is killing me, too. It has gotten worse in the last month or so; I can understand some of what you are going through.  Also joints in feet, ankles and sometimes wrists.
My former PCP told me the back pain was from fibromyalgia, but I didn't think it caused a great deal of joint pain like I have now.

I'd also like to know if anyone has been told their primary sjogren's has caused back pain, too.

I hope you hear from the doc soon and they can find you some relief!
Take care,
Melinda
Title: Re: Update
Post by: dbab on January 18, 2011, 10:22:30 PM
Hi Sha,

Did your doc mention the posibility of Fibro causing your back problems?   I know that it is a VERY common complain for Fibro.  Did the doc do the Fibro pressure tests on you at all? 

Lupus is a tough one.  I received a Sjogren's diagnosis, then a UCTD, then a Lupus w/ Sjogren's overlap.  My Rheumy would not acknowledge I had Lupus until my dermapathologist confirmed my rashes were caused by SLE and that was even after I had a few anti-dsDNA antibody tests come back positive which are pretty specific for Lupus.  See my presenting antibodies were ANA and SSA first as well so that's where I started.  It's a tough journey.  That unfortunately never ends (don't know if you caught my liver antibody story *sigh*)

Good luck and I hope your consult with your rheumy goes well.

Take Care
Title: Re: Update
Post by: cremer on January 19, 2011, 01:13:28 AM
I have asked my rheumy on many occasions if my lower back pain is Sjogrens related and he keeps saying NO. His quite happy to say Sjogren's is causing my knee pain but not back.
Title: Re: Update
Post by: Linda196 on January 19, 2011, 03:09:46 AM
Sha, I'm curious as to whether labs were run to check for Calcium levels in light of the extremely low Vitamin D. In addition to the blood work, have you had a bone density (DEXA) scan?

Low VitD, low Calcium and decreased bone density can all cause back pain, and you've demonstrated at least one of those.
Title: Re: Update
Post by: Joe S. on January 19, 2011, 03:56:44 AM
It would be interesting if flutterfly had the same or similar blood work results.
Title: Re: Update
Post by: mink on January 19, 2011, 06:08:25 AM
Sha !! By blood work... your officially a Sjroggy ;) Just like you said... You knew it all along...and am happy you are happy with your Docs :)

I have Fibro and my back kills me at times (like now) lol...but I haven't asked my rheumy. I have an appt this Friday and boy do I have questions! will let ya know what she says about back pain
Hope you feel better and get some pain free days ;D.
Title: Re: Update
Post by: Sooki on January 19, 2011, 07:34:16 AM
I'm guessing he probably is not planning to call to talk about the big picture; he's probably waiting to talk big picture and strategy in an appointment.  So grab the first appointment you can get to and ask the desk to find out from him if he'll order more tests that they could schedule on the same day.  It's worth it to talk face to face at this point - he'll outline diagnosis and possibilities for treatment etc.  It's a good chance to get all the info he has and tell him what approach you're most comfortable with and figure out how to get some relief.  Good luck.
Title: Re: Update
Post by: flutterfly on January 19, 2011, 10:33:05 AM
AHHH SWEET SHA BEBE!!!

i already knew this but just wanted ya ta know i feel awful 4 ya!!! it's such a double edged sword!

ya want no scary sh#t ta cum back positive but when it cums back neg u are still @ a loss of what ta do or where ta go!!!

JOEY~ ummm...i gotta take care of the other stuff b4 i go up ta rhemy so i might get the 42 vials a blood takin'
UMMM...probably by our happy u were born day! (april 9th) but 4 right now i have ta get nerve doc & colon cancer ruled out!!!
(cea came back high 4.9) but i'm a smoker so...hopin' 4 that ta be reason 4 elevation!

(sorry sha 4 the hi^jack!)

luva u extreme uber gooobers!!!

~*flutterfly...yellin' @ pixies...she STILL don't feel good!!!
PLAY NICE OR I WILL BE OVER THERE IN A MINUTE!!!*~   :P
Title: Re: Update
Post by: CAT1962 on January 19, 2011, 06:06:06 PM
Flutterfly: I TOTALLY hijack threads! I'm SO naughty! I apologize, everyone!

SHA: I, too, have the low VIT D. My low cortisol levels lately may explain a lot, too! Let us know what else comes up!

CAT
Title: Re: Update
Post by: irish on January 19, 2011, 06:22:44 PM
The other thing I was thinking was that kidney issues can cause back pain. I would think that they have checked you for the kidney issues before this. Also, sjogrens and other autoimmune disease can cause tendonitis and this can occur in the spine and into the pelvic region. I suffered from tendonitis in my lower back and pelvic region when I was pregnant. It was just terrible. Hope you can get relief. Irish ;D
Title: Re: Update
Post by: BonusMom on January 19, 2011, 09:27:28 PM
Sha-

I'm glad that you got some lab results today.

I have secondary SjS and SLE. When I was diagnosed in 12/08, I had a positive ANA 1:160 (homogenous and speckled), positive SS-B, positive histone Ab, elevated ESR and PTT.

Since dx, I have had periodic low WBCs, but never a low vitamin D.

I have had low back pain for the past three months or so and posted here a month or so ago about it.  I'm going to see my rheumy next month and will be asking her about it.  My joint pain has increased also.

It may be a coincidence, but I decreased the Plaquenil from 600mg to 400 mg when I began taking Imuran on September 9th.

The rheumy added the Imuran because of cog fog.  She was hoping the Imuran would alleviate some of those cog fog issues.  I didn't think the joint issues would rear their ugly heads like they did since I was still taking 400mg daily.  Anyway, I digress.

It sounds like you've got Primary SjS and perhaps Fibro overlap, but I'm certainly no expert.  I know Primary SjS can give you a wallop of sxs that those of us with secondary SjS don't experience at all or in the same intensity (sorry, I'm having a hard time finding the words to say exactly what I'm trying to say, but I think you catch my drift).

Stick with that rheumy of yours because I think he's interested in treated you based on your sxs, not just your labs.

Take care.
Title: Re: Update
Post by: Sha on January 19, 2011, 09:55:55 PM
Melinda~you sound so much like my joints....sorry to hear that! It is interesting that a lot of us are low on vit D...I'm gonna look into that! ;) Take care sweetheart! ;D

dbab~I had all the pressure points but 2. He gave me a pamphlet on fibro, but that is all I know...his internist jumped on that right away, but he really didn't talk about it that much other than hurt me with the pressure points!! I didn't catch your liver one, so I will have to check it out....doesn't sound good :( Lupus sounds so much like my symptoms...but neg on markers....I have all the rashes and it gets worse in the sun!! Thanks sweetheart!! ;D

cremer~so what causes the back pain...huh..huh...huh???

Linda~ My calcium was normal at 9.3 and my vit D was 28. I have not had a DEXA scan...should I ask him if I should have one? I am going to ask about an MRI also, which would show more?

Joe~Hi sweetheart!  ;D It would be interesting, but would also be full of questions cuz mine didn't say much more than I already knew...if ya know what I mean! ::)

Mink~I guess there's no kicking me outta the treehouse now...I got my badge (dx)LOL :D Sorry you have to join the back pain club too ;) Good luck on your appointment Friday....Thanks and please let me know what they say!!

Sooki~Thanks sweetheart....How did ya know that's what he wanted?!LOL Yeppers, ya were right...still asked what ya had said though...Jeff said he would give him the message. So, I guess I wait to see what he says ::) I hate waiting!!

Flutterfly~ Love you!! Yeh, all the unanswered questions SUCK!! ::) I hope you get some answers too! Send the minions! ;D btw, You can hijack my thread ANYTIME ;)

Cat~I wonder why a lot of us have low vit d?? Sounds like I gotta do some research on that...I will get back to ya :o

Irish~I have had a kidney infection in november and a kidney stone at that time. When I still had paiin after passing the kidney stone, my GP thought it was lingering pain from kidney stone....it continued for a couple of weeks and then she said it was sacroilliac joint dysfunctiion ::) Dr. Peng is going to talk to me about spondyloarthritis, but I was neg for arthritis as far as I could tell. It still feels like it is in my kidneys sometimes and lower into my pelvis :o It is like a cramping ache and sometimes sharp pain...always a constant ache I'm starting to get more used to which to me is SAD! :'( Thanks for the input, though!! Any other suggestions?

Bonusmom~Yeppers, I get your drift....I think I knowi have fibro...the docs know I have sjogren's so at least we have a starting point to talk aboutt. Sorry you're having issues with your meds!! Did ya have a lot of side effects when starting plaquinel? Thanks sweetheart!

UPDATE ON UPDATE: I did call my rheumy today and talked to someonoe (think he's the receptionist) and he told me that in my notes it says he wants to make me a followup appointment to go over treatment options for sjogren's. I told him I wanted to at least talk to him first cuz I live 4 hours away and want to make sure he doesn't want to run any more tests or mri that could be done first....if ya know what i mean!

He said he would have dr. peng call me, but set me up for feb 11th, cuz my 10 yo is having a tonsillectomy/adenoidectomy on Feb 3rd and I wouldn't be able to go until at least a week after she had surgery (told him sorry...it's a mom thing)  ;)

Asked if he mentioned anything in my file about the other AI diseases....he said that he has noted that he wants to discuss spondyloarthritis, sjogrens, and lupus....uh, labs came back negative for everything but sjogren's so wonder if I read em wrong or he also believes in symptoms bearing more weight than markers???

I just hope someone can tell me what the joint pain is and the back pain cuz that is what is killing me!!

Thanks all for listening!!

Sha
Title: Re: Update
Post by: Diane54 on January 20, 2011, 08:01:33 AM
I am currently on 50,000 IU of Vitamin D right now too! My Rhuemmy wants me on it for 3 months! :'(
Title: Re: Update
Post by: genko_b on January 20, 2011, 09:11:58 AM
It's great you got your lab results and have some answers. I presume the doctor will put you on a vit D supplement. I feel much more energy since I've been on one.

The back pain can be so many different things. Did you have any scans that showed changes in the bones back there? Sometimes it can be a combination of things as well, not one single cause.

Early on the docs considered ankylosing spondylitis for me because of so much lower back pain, but as my condition progressed they settled on RA because of the other joint involvement and the lack of progression of back changes. So the underlying back pain was chalked up to injuries from a horseback riding accident in high school. I've also had a couple of kidney infections which can cause terrible pain back there.

Take care,

Genko
Title: Re: Update
Post by: flutterfly on January 20, 2011, 11:46:29 AM
 :-* hey sha bebe~'member when we called doc d the vitamin ^D^ natzi? well maybe just maybe she knew what she was talkin' 'bout !

i know it sounds so simple huh!

the sun vitamin was depleted in this pixie also! MINE WAS 16! Yay me!
but after the last drug reaction she's 2 scared ta put me on anythin' but flinstone vit & that new mantex super b6 b12 & folic so i REALLY hopes she passes that tidbit on ta the other arsenal of new docs!;D

me luva u terri※bly!

~flutterfly...lookin'up vit.D side effects @ mass doses! uugghh! sorry kid!*~
Title: Re: Update
Post by: Sha on January 20, 2011, 07:24:44 PM
Diane~have ya had any side effects? Uhhhgggg dreading starting that dose!

Genko~Thanks Genko! I did have a x ray that showed a bone island and spurring, but I don't think he is worried about it. He has mentioned spondyloarthropathy of some sort. I agree....it could be any of a number of things...I have had kidney stones, which can cause terrible  back pain...ya never know what it could be...isn't that why we have the docs!LOL :D

Flutterfly~Yeppers I do, but she only wanted me on 1000....that's not bad now that I think of it!LOL Love ya too!

UPDATE TO UPDATE
Missed dr Peng's phone call and he had left message saying if he understood the message right....I wanted more info on Lupus, RA, spondarthropathy, and sjogren's. He then gave me some websites to check out and said he would cover those dx's on my next visit, but if i had any other questions to call back....UH, YEH....didn't get the message right cuz I was ASKING if he had dx'd me with any of the other AI stuff he gave me pamphlets on besides sjogren's cuz that was all my labs and test were definite on...positive for sjogren's!!!! ???

So I called back and talked to same guy that took the first message and he said he would have dr peng call me first thing in morning cuz he gets in early and call before I go to work! YAYYYY!!!

So now I wonder if that is what he has dx'd me with since he again was giving me places to find info on those!!

Thanks for listening!!

Sha
Title: Re: Update
Post by: Sha on January 20, 2011, 09:50:05 PM
Quick question....what should I ask him tomorrow morning? gotta keep it short cuz he is doing it as a courtesy cuz I have an appointment on feb 11th, so I'm sure he will refer a lot til then...
Title: Re: Update
Post by: Sooki on January 20, 2011, 10:39:12 PM
Feb 11th?? That seems so far away.  Be sure to ask how to get some relief from your back pain.  Sorry it's so long until then...  Ask about the vit D, but make sure he knows what's the most urgent issue.  Hang in there!
Title: Re: Update
Post by: Sha on January 21, 2011, 06:48:31 AM
Thanks sooki~ It is soooo far away, but I gotta be a mom first....my 10yo is having her tonsils and adenoids out on the 3rd, and I can't make the appointment before then, but also  have to wait til I feel like i can be 4 hours away in case of emergency :o So, I told em I would be okay with 9+ days out from her surgery, which of course, Jeff made me one at 9 days out from the 3rd :D

I am right now waiting for his call  which he should be in the office around 7 am....did i mention i hate waiting!!!LOL ;D

Sha watching the clock like I was a kid waiting for xmas! :D
Title: Re: Update
Post by: JannaLee on January 21, 2011, 07:36:00 AM
Sha,

Do you have a copy of all your lab results?  My doc is kind of mysterious like yours.  He said things like, "These diseases have a way of morphing into one another." and "Your hair loss is due to the Lupus component." and his nurse gave me Lupus pamphlets.

About a year ago he did more tests and never said a thing about the results.  I got a copy of them and read in the "notes" he dictated I have "serologic change to indicate Lupus."

Well, I certainly would have liked to hear this!

Good Luck and keep asking questions!  After a couple times of having to call you back he might learn you are one of those patients that want to know what's going on!

Janna
Title: Re: Update
Post by: Sooki on January 21, 2011, 08:26:57 AM
Sha,  Mom work does seem to come first.  I hope your little one weathers the surgery well.  Tonsils are a bigger deal to kids than surgeons say.  It's good that she knows you're there for as long as she needs you.  Take care.
Title: Re: Update
Post by: flutterfly on January 21, 2011, 11:13:39 AM
 :-*  hey sha bebe~

WHAT'D HE SAY?

HUH? HUH? HUH? spill it!

luva u brat!

~*flutterfly…now forced ta wait 'til sissy gets break & thumbs us!*~
Title: Re: Update
Post by: Joe S. on January 22, 2011, 05:40:55 AM
Sha, it is Saturday and you have been processing for a while. Good, Bad, or indifferent, what did he say?

Title: Re: Update
Post by: Patze on January 22, 2011, 05:52:46 AM
Count me in as also waiting for some info. :)


Patze
Title: Re: Update
Post by: tired of it on January 22, 2011, 06:48:10 AM
Sha,

Do you have a copy of all your lab results?  My doc is kind of mysterious like yours.  He said things like, "These diseases have a way of morphing into one another." and "Your hair loss is due to the Lupus component." and his nurse gave me Lupus pamphlets.

About a year ago he did more tests and never said a thing about the results.  I got a copy of them and read in the "notes" he dictated I have "serologic change to indicate Lupus."

Well, I certainly would have liked to hear this!

Good Luck and keep asking questions!  After a couple times of having to call you back he might learn you are one of those patients that want to know what's going on!

Janna
Janna,, dont you just love how they seem to (forget) to tell us what they think,, good, bad or whatever,, and if it did indicate Lupus, that seems to me like thats kinda something you might need to know, we start piling on these AI things, and treatments change,, yet there content on just writing them in there notes, then your folder goes back on the shelf with the other poor souls
Title: Re: Update
Post by: JannaLee on January 22, 2011, 07:13:14 AM
Tired,

I am struck by your last sentence.  The mental image of my lab results, medical notes, diagnosis, etc. filed in a room/computer with a million-jillion others makes me realize how important it is to get copies for myself.  How tenuous the chance they never lose my very expensive and hard earned medical story!  Then what would I do??!!

Certainly putting it in that perspective, it's no wonder the doc. didn't remember to tell me his analysis.  I wasn't there when he looked at the lab results.  Too bad he didn't read back a paragraph (to his own remarks) when I was there.

Thank you for letting me vent.  I love you all!
Janna
Title: Re: Update
Post by: Sha on January 22, 2011, 03:18:07 PM
UPDATE TO UPDATE AGAIN: ::)

First off....thanks to all of you guys for ALWAYS being here for me! I have been super busy the last couple of days so haven't had a chance to post to anyone, so i am going  to try to make it quick cuz gotta go get soccer stuff back out cuz it may be starting as early as tomorrow for private lessons!!  :o

Dr. Peng called just as I was going out the door for work, but got to talk to him for about 10 minutes before I had to RACE out the door.

He said he has a definite dx of sjogren's and spondyloarthropathy (probably ankylosing spondylitis). He said the others like Lupus , RA, fibro are probably mixed in there some how, but not as severe as the first 2 right now. He said no matter what I get dx with, most are treated with the same treatment , but he would try to clarify all that on Feb 11th.

He is the type of doc that cares more about symptoms than a positive blood test!! He actually said that they used to not dx ankylosing spondylitis til it had gotten where the spine was completely fused together, but now if ya show the symptoms they are more apt to dx early so it can start to get some treatment!! Same with all the other AI stuff...If it looks like a duck, quacks like a duck and walks like a duck.....then it is probably a duck!! :D

He also said that he wants me to go to a hearing specialist cuz he thinks I may have NEUROSENSORY HEARING LOSS and that is why I can't stand the lil sounds and smells etc....said it can affect more than just the hearing! He wants me to bring my report with me!

Oh yeh...I may be going through early menopause ::) Dear god....I'm only 35!! Won't go into a lot of details otherthan my time of month has lasted 22 days so far and no end in sight!!!!!! ::) so a gyno appointment is also in the near future!!

I'm sure I left more out than I will post later, but am trying to catch ya up before I am back on MOM mode!LOL

Sha who is off to see if we need new cleats or shinguards etc...now where are those soccer bags :D
Title: Re: Update
Post by: brownskin510 on January 22, 2011, 07:04:57 PM
Wow Sha, I'm glad to hear that you finally got some definitive dx, although I hate that it is AI. But at least maybe now you can get started on a workable tx plan. At this point because your dx is AI, I, personally, don't think it matters which you have because like Dr. Peng said, they are all pretty much treated the same, hence the MCTD [mixed connected tissue disease]. It seems like once you get one, you get several. Well, Sha, girl, we are ALL in this 2gether :D.

Ps, you need to SLOW down a lil
Title: Re: Update
Post by: Sooki on January 22, 2011, 10:26:28 PM
Hi Sha.  I glad you finally got to talk with him.  Sorry about the spondylitis dx.  It sounds like he has some treatment options in mind.  Interesting  about it being hearing loss that makes you sensitive to sounds.   Here's a wish for you that the next few weeks slide by easily; your daughter heals quickly; your back chills out; and your daytime kids run slowly.
Title: Re: Update
Post by: Sandisue on January 23, 2011, 12:24:02 AM
Hey Sha,

I have Primary Sjogrens, and my back and shoulders hurt a lot. My lower two discs have small holes that leak fluid out at times and makes it inflamed in the area. But heck the shoulders and neck is driving me nuts. I have and appointment with the Rhemy. next week and I'm gonna ask him about all this. I hope you find something out soon. Let us know.

Hugs,
Sandisue
Title: Re: Update
Post by: Joe S. on January 23, 2011, 04:22:31 AM
Sandisue, for your neck and shoulders, you can use reflexology to help you feel better. There is a thick fleshy ridge between your thumb and index finger. Massage that ridge to trigger endorphin release. Do not massage it so hard or long that it feels like tenderized meat. When I use it, it works effectively for at least 99 out of 100 if not 999 out of 1000.
Title: Re: Update
Post by: JannaLee on January 23, 2011, 07:17:36 AM
Sandisue,

I use heat also on my neck and shoulders. 

Hope the doc can help you.

Janna
Title: Re: Update
Post by: Sha on January 23, 2011, 01:38:11 PM
Kelly~ya can always be my buddy in crime ;D LOL Slow down....HAHAHAHAHAHAH :D Not in my vocabulary, but my body wishes it was!!

Sooki~Thanks sweetheart! I really love dr. Peng...you were sooo right  about his personality!! I like it when the kids run slowly!LOL

Sandisue~Let me know what ya find out....Dr. Peng said the pain in my back stems from the spondyloarthritis and would discuss that more in my next visit. He also said that sjogren's can cause joint pain and like knee pain, but rarely causes back pain...that is usually attributed to an injury or another AI disease like spondy...makes sense since AI diseases usually comes in packs! I don't like it when the docs stop looking past the first dx cuz they start attributing everything to 1 disease which I think is why so many peeps don't get their full dx!!

Joe~ I still use that trick and it does help a lil, but my pain is so severe in my back right now...still gotta get the cherries ;)

Jannalee~I am on a heating/massager pad every night and that does help a lil too.

I cannot wait til my appointment on the 11th!! I have sooo many questions for him!!

I got 7 books from library on AI  diseases and some specialty ones like lupus so I can be prepared to ask questions at my next appointment!

Thanks to all!

Love ya all :-*

Sha
Title: SOS!!!!!
Post by: nancylee on January 23, 2011, 01:43:25 PM
I am not new to computers or discussion boards but I swear I CANT NOT figure out how to post a new subject. I have tried EVERYTHING and all I can do is read what you write or reply. So, forgive me for posting to this thread but i wanted to ask for help in a post that is being read!

Nancy
Title: Re: Update
Post by: Sha on January 23, 2011, 02:00:06 PM
No problem....if ya still can't figure it out from what lizzy said...pm me and I can help try to get ya where ya need to be ;)

To pm me...hit on my name on this thread or any other thread I have posted on....scroll to bottom of page.....hit on "send this member a personal message" and that's it!

We are all very helpful here so no worries!

Sha ;D
Title: Re: Update
Post by: Joe S. on January 23, 2011, 07:01:48 PM
Sha, Here are two more things to try:
1. Take two tennis balls and tie them tightly into the toe of an old sock. When laying down with your knees up place the sock under the base of your skull. This should trigger a still point release after 5 to 10 min. (relaxes all the muscles on your spine).
2. Roll up a towel until it is comfortable under you neck close to the base of your skull. Lie on your back for a short nap. This can trigger a partial release of the upper back, neck and head.

Bonus points: There is a yoga technique that I learned called a neck hang. You start out with the base of your skull hanging off the edge of a massage table for 5-10 min. When I was younger and doing this, I got to the point where most of my upper back was hanging off. It took me a while and I had to have spotters. I could not tolerate the inversion tables so this was as close as I could get.
Title: Re: Update
Post by: quietdynamics on January 23, 2011, 11:43:37 PM
I saw mention of Vit D deficiency ...there is some general consensus that it is true for the general population. But, in sjogren studies, in Japan, Sweden and elsewhere there is evidence of low DHEA in our population. Sometimes I search for new studies on PubMed. I am close to concluding that more innovative research is done in other countries.
...Just an observation.
Title: Re: Update
Post by: Sha on January 24, 2011, 10:27:01 PM
Joe~You are always so helpful!! Thanks! ;D

quitetdynamics~ I believe there has to be some correlation between the vitamin D and pain cuz both my rheumy and GP have tested my levels and started me on a high dose, which I haven't started yet cuz they didn't call it in. I think I am going to call my GP and ask her to call it in.

If I haven't welcomed ya to the treehouse yet....welcome, and make yourself comfy! ;D

Sha
Title: Re: Update
Post by: quietdynamics on January 25, 2011, 01:19:25 PM
Hello Sha and Thank you for the welcome

From your post I looked up Vit D and found this: 
From Medscape Medical News
Musculoskeletal pain symptoms linked to vitamin-D deficiency, again
http://www.medscape.com/viewarticle/538290

I was pointing out that there is evidence that a wide pop. is testing low in Vit D. ( not limited to AI patients),but, for example children as well.
After reading I will start taking them again. I do sit in the sunlight in the AM for 10 to 15 minutes with the cats.  :D
I am hoping to feel well enough to get out and walk, which would really be a win-win situation.
Title: Re: Update
Post by: Sha on August 11, 2013, 01:25:51 AM
I guess this is a 2 year update haha I have been MIA but came to check on the forum and am now a guest on the other "Sha account." I replied here cuz it kinda gives my history. My dx's as of now are secondary Sj√∂gren's, spondyloarthropathy undifferentiated (possibly enteropathic arthritis due to being dx'd with ulcerative colitis), fibromyalgia, MCTD unspecified (crossovers of lupus and RA), chronic migraines, and osteoarthritis in a few joints.  :o I am currently on the fentanyl patch, oxycodone, flexeril and diazepam. I have tear duct plugs for my eyes and have had several new Rx's for new glasses as my eyesight gets worse each year

Hope all are doing well! I see some familiar faces still and some who turned into guests like my account did. Hugs to ALL!!  ;D
Title: Re: Update
Post by: SjoAmy on August 11, 2013, 09:34:10 AM
Have you had any MRIs of the spine done?  Cervical, Thoracic, Lumbar?  If so, what were the results?  Perhaps I missed that.

Anyway, got LOTS of back pain myself.  3 Schmorl nodes in Thoracic, and entire cervical is undergoing reconstruction with T1.

Here's hoping you'll have better days.
Title: Re: Update
Post by: Sha on August 11, 2013, 10:41:40 AM
No, I have had X-rays of my spine and hips and it showed osteoarthritis so my rheumy and GP didn't request an MRI since the rheumy in Seattle already dx'd spondyloarthropathy. I have continuous back issues but they still refer to it as undifferentiated cuz it could change to ankylosing spondylitis, but they are leaning towards enteropathic arthritis.