Short history - I have hashimotos thyroiditis. I recently suspected Sjogrens syndrome. Endocrinologist ran labs for me even though he was opposed to it stating there is no treatment. Ana/ssa/ssb all came back negative. Ra came back positive at 64. Family history of osteo and rheumatoid arthritis. I've had severe hip pain off and on for a while, dr put me on vitamin d, I no longer have any hip pain.
Over the past 3 months or so, I have been experiencing severe shoulder pain. It started in one shoulder, lasted 2-3 days, could barely move my shoulder it was so painful. It then went away and appx. 2 weeks later, same thing, other shoulder. I thought this was happening as maybe I was sleeping wrong on my shoulder, but it has since occurred late afternoon just out of the blue. This has happened 4-5 times so far, each time alternating shoulders. I took a handful of motrin today, no relief. I am in severe pain right now. I cannot even move my left arm today; I can't get a shirt on.
It never occurred to me prior to the lab tests recently that I could have arthritis. Does this sound like arthritis to anybody?? I am in so much pain and just very confused. I do not follow up with my endo for at least 2 going to try to get in to see gp today.
And then to top it off, I have been crying and I don't have any tears. Having a hard day :'(
I have arthritis related to SJS, but I also have arthritic reactions when my TSH gets too high.
It sounds like your problems may be because of RA (occurring in only one location bilaterally), but it might be your thyroid flaring up again. Have you had your TSH tested lately? Your emotional roller coaster makes me think it might be worth checking even if it's not the cause of your pain. I know that I need to keep my TSH down around 1 if I want to feel OK physically and emotionally (the AACE recommends it be no higher than 3 anyway: http://www.aace.com/public/awareness/tam/2003/explanation.php).
I was first diagnosed w/ Hashi's when I woke up to find that my whole body had gone arthritic; I was only 28, but I could barely move and was in tremendous pain. My TSH was only 5.62, barely out of the lab's normal range. My GP started treating me with levoxyl and the pain began to disappear. By the time we found the right dosage for me at the time, the pain was gone. I now have arthritis in my hands b/c of SJS, which is bad but not as intense as the sudden arthritic symptoms I developed when my thyroid first stopped functioning properly.
By the way, you may want to share with your endo that there are lots of treatments for SJS. Since doctors have realized that it's more like lupus w/ excess dryness than simply a disease of dryness alone, plaquenil and prednisone have become pretty standard treatment options. There are also drugs like evoxac and salagen which stimulate salivary flow and Restasis which increases tear production in some people.
Yes, I have arthritis. BUT not all joint pain is arthritis. I get severe hip bursitis and have torn both rotator cuffs in my shoulders! Get that checked out before you get frozen shoulder. I treated mine with PT and it worked pretty well. Bursitis responds to a cortisone shot into the bursa.
Hi
I have rheumatoid arthritis and your symptoms are the same as I experienced when I first had a positive RA factor. My doctor called it migratory since it moved around and I invariably got the pain in the opposite joint. Early treatment is very important so keep digging for answers. If you do have RA, aggressive treatment can keep permanent damage at bay.
Hope this helps.
Joyce
Thank you everyone. I was in so much pain yesterday and then up at 2am this morning, literally in tears (minus the tears). I called in sick to work today and have to wait until my doctors office opens at 8 - hopefully they can fit me in. :P
Dear Autoimmunity:
I have had osteoarthritis for over 20 years, progressing continuously.
At one point I had a bone spur impinging on my rotator cuff, and the pain you are describing sounds like rotator cuff pain.
Please see either your rheumy or an orthopedist to have an MRI to find out the source of the pain.
I have had a couple of surgeries to ease pain of osteoarthritis, one on that shoulder, and one on my hand. And I live with constant pain in my neck and back of my head from very severe osteoarthritis in my cervical spine. In fact my neuro looked at the results of my cervical MRI and said, haven't you ever considered having surgery? No, I haven't actually. I have a pretty high tolerance for pain, and live with some of it all the time.
There are lots of possibilities for the source of your pain. You won't know until you have some tests.
I don't have rheumatoid arthritis, which is much more damaging, but does have treatments that can slow its progress.
Keep us posted.
Kisses
Carolina
Arthritis was actually the first symptom that forced me into the dr office. It has continually progressed and is expected to continue to progress. It has caused me to have surgery already. I take meloxicam, tramadol and darvocet for it.
Auto,
whaty ou describe fits me to a T. I have a RF of 160!! yet no RA dx. I do have OA. Voltaren is helping that- the shoulder thing could be bursitis or as anotehr dr. told me, rotator cuff... its been while since ive had taht " cant dress myslef" stuff. if I drink Monavie everyday I keep the sever stuff at bay. i also have fibro to com;icate it more... not sure what it is but I have it too and i do have OA confirmed elsewhere- lots of bone spurs... woo hoo ;D
lori
This sounds very familiar to me, too. I've always said that my major joints take turns - one hip, then the other; one knee, then the other; one shoulder; then the other.
RA is one of my MCTD issues.
Marla
Hi :)
I went to the dr with arthritis at least 20 years before I got dry. I have OA not RA but I also get a lot of tendonitis.
Take care - Scottie :)
Hi:
I understand a very larger percentage of Sjs also has Arthritis - in the order of 50% or higher- which contributes to the joint pain etc. RF factor in the blood would probably be positive then. Sometimes Autoimmune disease takes a long time to declare itself. On average, it takes 7 years to positively diagnose SjS. Darn!
So this works for me- I decided to ignore it as much as possible, as long as the symtoms are under control. That way, less depression, sleep better at night.
Pegasus
Shoulder pain, Oh yeah, lots of it!! Going to have bone spurs removed tomorrow, unfortunately the other shoulder is starting up as well as thumbs and feet.
Can't thank everyone enough. I couldn't get into my doctor, but saw the nurse practicioner - I can't stand her and normally refuse to see her, but since I can't move my arm and this is probably the worst pain I have ever had, I went anyway.
I gave her my symptoms and my recnt ra lab result and she said it could very well be rheum. arthritis. I have had severe hip pain off/on, but that totally went away when Endo put me on vit D. Also have history of rh. arthritis in my family. So, with all of that, this should not have been a surprise, but it is a shocker. And the pain, had no idea.
So she is referring me to a rheumatologist, I guess that will take a week or so. She put me on meloxicam (sp?) and vicodin, but I had taken a friends percocet last night and that did nothing, so my hope is on the meloxicam. Very surprised she didn't order an x-ray or ct scan or something. Ok, my arm is frozen in this position I am quite alarmed...and my other shoulder is hurting now too, but at least I can use that arm.
Then my blood pressure and pulse were quite high. I have never in my life had a high b/p, it is always on the low side. So she did an ekg. She thinks I may have armour thyroid overdose poisoning. Please.. This office truly is anti - armour. I thought it was funny because I haven't had armour since early yesterday. She said I cannot have any coffee (thats not going to happen) and I cannot excercise. Said take my pulse at home and if it is high I have to get to the ER. I asked isn't it likely all of this is high due to the extreme pain I am in? She said only if I were 70. I know that is not true.
So, thank you so much. I cannot tell you how helpful and reassuring everybody on this board has been to me! Truely appreciated!
Great, doctors office called, said the doctor reviewed my chart and prescribed me medrol dosepack. Wants to hold off on the referral :-[
Hoping this will work........I am in misery.
Plus, very nauseated with a migraine now. Wonder if that is from the meloxicam. She said it would be easier on my stomach than the motrin...I am not feeling well.
Auto, I have had both shoulders worked on. Frozen shoulder on the left and labrium repair and bursa removed from my right shoulder. Do you think this is all related? I had no idea.
good luck to you, harlin
positive ANA, Sjs and SSB
Please do not hold off on seeing the rheumatologist. I really think you can get an answer from him and if, need be, you can get the right treatment in the shortest amount of time.
Warm regards
Joyce
I also have had acute shoulder pain that lasted for months and months. They tried PT but only the ice packs had any effect on the pain. They also tried a course of steroids for pain. Nothing worked. My GP finally referred me to an orthopedic surgeon. He took x-rays and he recommended rotor cuff surgery immediately for my right shoulder. They did an S.A.D. (sub-abcromial decompression). Basically he went in and scraped out loose cartilage and bone chips. He said it was the worst he's ever seen - and he specializes in sports injuries! :o Anyway, he said if I hadn't had it done right away, the paralysis could have been permanent.
I also have OA in my knees and fingers. And weather fronts wreak havoc with Fibro and pSJS. My rheumy has everyone fill out a 1-page questionnaire every time you visit and one of the questions is to rate your pain level on a scale from 1 thru 10. This gives her an idea where you are and what she can do to help with the pain.
I hope you get some relief soon. There are so many suggestions here that may help you. Take good care of yourself.
LeoLady
Quote from: LeoLady on June 03, 2010, 06:48:55 PM
I also have had acute shoulder pain that lasted for months and months. They tried PT but only the ice packs had any effect on the pain. They also tried a course of steroids for pain. Nothing worked. My GP finally referred me to an orthopedic surgeon. He took x-rays and he recommended rotor cuff surgery immediately for my right shoulder. They did an S.A.D. (sub-abcromial decompression). Basically he went in and scraped out loose cartilage and bone chips. He said it was the worst he's ever seen - and he specializes in sports injuries! :o Anyway, he said if I hadn't had it done right away, the paralysis could have been permanent.
I also have OA in my knees and fingers. And weather fronts wreak havoc with Fibro and pSJS. My rheumy has everyone fill out a 1-page questionnaire every time you visit and one of the questions is to rate your pain level on a scale from 1 thru 10. This gives her an idea where you are and what she can do to help with the pain.
I hope you get some relief soon. There are so many suggestions here that may help you. Take good care of yourself.
LeoLady
So that just happened out of the blue? Was it from the arthritis? Yikes!!
Yeah, I couldn't even get my steroids today as they weren't called in. That plus I became very ill from the meloxicam - sorry if I am repeating myself, I don't remember.
Hey guys, quikie question. Doctors office originally was going to refer me to the rheumatologist yesterday, then they called me last night stating the Dr. reviewed my chart (I had seen the nurse pract.) and she didn't want to refer me and wanted to start me on medrol dosepack - which has yet to even be called in. Should I call the Drs office back and insist on a referral? Does a rheum. need a referral? Wonder if I should find one on my own. Or should I just try the medrol, which I think will help, but that doesnt really address the underlying issue. Plus, having lots of pain in my right and stiffness in my right shoulder now - still can't move my left arm.
Thanks.
Hi
Moving around muscle/joint pain, an excruciating headache, a toothache with no cause, along with really dry eyes and dry mouth were what came on "out of the blue" and signaled my introduction to a SJS flare. It lasted 2 weeks. Over the counter drugs did not seem to have an impact and the pain moved around the neck and shoulders randomly and within the hour. At some points I did not want to raise my arm over my head.
You need to see a rheumatologist.
Only your insurance knows for sure whether you need a referral...you should call the number on the back of your insurance card. If they say yes...do not give up on your GP. Pester him/her to take care of your pain. If it is a flare it will eventually resolve but life is happier with treatment.
Meloxicam is a prescription anti inflamatory...try taking it with food. The good news is if you are diagnosed and treated...plaquenil (which takes awhile to work) really cuts down on the aches and pains and slows progression of the disease...I now just have lower back pain when I wake up...and that too started in the course of a flare...out of the blue. After I "warm up" with moving around it goes away....that was not the case with my earlier pain.
With the + RF and family hx of RA and the symptoms you have, I would want to see a rheumatologist.
Referral depends on what type of insurance you have if you are in the US. HMO's are more likely to require a referral, but you need to call your insurance to find out for sure.
If you don't need a referral then you can call and make an appointment for yourself. I would ask around to find one who treats autoimmune diseases like sjogren's, lupus, RA etc...not all do. Tell them your positive RF, severity of joint pain and family history. If you are having significant pain, positive bloodwork and a family history sometimes they will squeeze you in sooner, but don't be surprised if you can't get scheduled in right away, a lot of rheumies are booked out. If you ask to be put on their cancellation list you might get in quicker - they will call you if they have a cancellation to try to fit you in a last minute opening.
Good luck and let us know how you do.
Nancy
Thanks guys. I know with my insurance I do not require a referral, but was wondering if it was like an endocrinologist where most require a referral from a different doctor before they will accept you as a pt. I will have to call around and see.