Author Topic: Could it ONLY be SS??  (Read 3789 times)

missmeri

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Could it ONLY be SS??
« on: June 19, 2015, 03:13:31 PM »
According to my blood tests, I ONLY have SS.  However, the aches and pains I get, especially in my joints makes me think it's not just SS.  Is it really that painful?  The diagnosis was given after I went to a rheumatologist to see if I had RA based on my symptoms.  He (and the other 4 Drs I've seen) said it's not RA.  Some days I'm in so much pain... my entire body aches and every movement hurts.  Is SS really that bad?  I guess in my head I feel like it's only a mild illness, or not really an illness at all.  Maybe I'm not respecting the diagnosis enough?  ...I'm just a bit confused by my body.  Thoughts...?
Miss Meri

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Tharrell

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Re: Could it ONLY be SS??
« Reply #1 on: June 19, 2015, 05:03:22 PM »
Hi Missmeri! I can totally relate! And yes, sjogren's joint pain or althralgia can pain this much with out it being ra. Everytime I see my rheumatologist she checks my hands and says no joint swelling no inflammation and I say yes I know, but it still hurts! I only have her since February. Right now she blames the cramps from my Isaac's syndrome refering the pain to my joints and asked my neurologist to up her meds to control the Isaac's better. I know there is some truth about that, but I also know my joints were hurting before Isaac's showed up.
So I'm patient, use Aleeve, and wait for my appointment with her in August and make another push about my joints. By that time I will have been on increase of meds from neuro for two month so that can't be an excuse. At least my blood tests show it's not inflammatory so I know there won't be any joint damage.
I heard that the parafin bath for hands is most soothing and am thinking of getting one. Meanwhile I did get a nice compounding cream from rheumatologist containing three different pain and anti inflammatory meds that help as well so you may want to ask your rheumatologist for some.
Hang in there!
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sixty

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Re: Could it ONLY be SS??
« Reply #2 on: June 19, 2015, 11:17:11 PM »
HI, I've been diagnosed with only Sjogrens and I have terrible pain.  I take oxycodone several times daily.  I also take gabapentin for pain.  Sjogrens can be horrific all by itself.

warmwaters

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Re: Could it ONLY be SS??
« Reply #3 on: June 20, 2015, 01:51:21 AM »
Joint and muscle pain can definitely be a part of SS.  I know they are a real problem for me. As in I feel like I have the flu aches and pains.

Talk with your doctor about pain relief. Ibuprofin or some other anti-inflammatory might be appropriate. 

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cccourt1942

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Re: Could it ONLY be SS??
« Reply #4 on: June 20, 2015, 08:49:05 AM »
"just" SjS.  Yes.  Or at least, I believe so.  The step before (and sometimes all  the "Arthur" we have) is osteoarthritis.  It hurts...it hurts a lot.  Is it as crippling as RA?  I guess not  as it isn't deforming.  But I can tell you its  onset made me ache from about age 40 on.  I am 73 so I was swept into the fibromyalgia craze when it occurred.  Patients can easily believe fibro cripples them.  Why is it difficult to believe SjS can be that debilitating...especially with natural age onset of osteoarthritis?  I ask that as it was QUITE difficult for me.  About 15 years ago I had a GP who insisted I take Celebrex.  I objected..I resisted...I used the computer in my work.  I finally relented.  It kept me working.  Since I turned 73 my rheumy has put me on ldp (low dose prednisone) to replace the Celebrex.  I have already had one NSAID ulcer.  It took about a month for the 5mg prednisone to kick in.  I still have knee probs...but overall the pred handles the rest of the inflammation and aching.  (I have been on plaquenil since Feb this year--which helps too.) 

Most of you cannot take the ldp.  You are too young.  When I objected to the Rx my doc gently touched me and said >>>>"at your age."<<<<   I had to laugh.  I had a GP who once treated many of us working in the schools with Medrol packs for sinus infections.  He dosed it sparingly and was quite set in his time intervals for an Rx.  He would tell each of us, "you will need this when you are old. You can't have too much now."  I am thankful he was prudent!!

Best to you.
ccc
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litliwlowa

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Re: Could it ONLY be SS??
« Reply #5 on: June 21, 2015, 02:53:17 AM »
According to my blood tests, I ONLY have SS.  However, the aches and pains I get, especially in my joints makes me think it's not just SS.  Is it really that painful?  The diagnosis was given after I went to a rheumatologist to see if I had RA based on my symptoms.  He (and the other 4 Drs I've seen) said it's not RA.  Some days I'm in so much pain... my entire body aches and every movement hurts.  Is SS really that bad?  I guess in my head I feel like it's only a mild illness, or not really an illness at all.  Maybe I'm not respecting the diagnosis enough?  ...I'm just a bit confused by my body.  Thoughts...?
Adding to the replies you've received thus far, I noticed you have Hashimoto's listed. Another possible contributor to muscle aches and pains is if your thyroid levels are in the hypothyroid range. Another possibility - low on magnesium.

SS is not a "mild illness", it is a systemic autoimmune that attacks the exocrine system - any of your moisture producing glands can be impacted
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

cari

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Re: Could it ONLY be SS??
« Reply #6 on: June 21, 2015, 03:51:36 AM »
According to my blood tests, I ONLY have SS.  However, the aches and pains I get, especially in my joints makes me think it's not just SS.  Is it really that painful?  The diagnosis was given after I went to a rheumatologist to see if I had RA based on my symptoms.  He (and the other 4 Drs I've seen) said it's not RA.  Some days I'm in so much pain... my entire body aches and every movement hurts.  Is SS really that bad?  I guess in my head I feel like it's only a mild illness, or not really an illness at all.  Maybe I'm not respecting the diagnosis enough?  ...I'm just a bit confused by my body.  Thoughts...?

I don't have RA either but I know exactly how you feel. My whole body throbbing with pain and inflammation, pain in my joints and now my knees.  It seems to affect my knees and hip joints most but my hand were painful last week.  Apparently Primary Sjogrens can be more severe than Sjogrens as a secondary disease.  My rheumatologist was quite dismissive of Sjogrens as well and I was surprised when I went home to look it up.  Are you on Hydroxychloroquine?  It's supposed to help with the joint pain and body pain; I'm waiting for mine to kick in and have been on it for about 10 weeks.  In the meantime you could try acupuncture as that's supposed to help relieve the pain or supplements like Tummeric :)

Carolina

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Re: Could it ONLY be SS??
« Reply #7 on: June 21, 2015, 05:56:57 AM »
The hallmarks of all inflammatory conditions like SJS are:  PAIN, Profound FATIGUE, DEPRESSION.  There may be others, depending on your individual situation.

Cymbalta is on label for the pain of inflammation. 

Good luck with finding your formula for managing these hallmarks. 

And welcome to our forum.  Ask all the questions you have, and share your own experiences.

Hugs,  Elaine
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Nugget

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Re: Could it ONLY be SS??
« Reply #8 on: June 22, 2015, 03:30:44 PM »
Joint and muscle pain can definitely be a part of SS.  I know they are a real problem for me. As in I feel like I have the flu aches and pains.

Same thing for me.
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Navigator

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Re: Could it ONLY be SS??
« Reply #9 on: June 24, 2015, 06:43:01 AM »
Are you on plaquenil???  It can help address the muscle and joint pain.  It takes several months for some for the drug to kick in so the sooner you get started the sooner you may feel better.  I would ask your Drs. if they have not yet prescribed it.

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quietdynamics

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Re: Could it ONLY be SS??
« Reply #10 on: June 24, 2015, 06:53:41 AM »


When I first heard about Sjogrens the Mantra was "Sicca: Dry eyes and Mouth" per general practitioner at the time .. " you can live a healthy and active life"
MS had been dismissed and a diagnosis of Lupus/ Sjs was changed to ONLY SJS .. so I thought well that is better.. no bad.

But, I was not healthy and was no where near the active life I had prior.
So like you: Could it ONLY be SJS..was something being missed? What is going on?

So after time and research I learned that some people Dx'd with SJS: about 20% have more symptoms (Systemic Sjogrens) Some people with antibodies have NO symptoms. A complex situation for specialists.

Jasper just posted a very clear article: Systemic Sjögrens: More Than a Sicca Disease
http://www.the-rheumatologist.org/article/systemic-sjgrens-more-than-a-sicca-disease/
For those in the 20%:
The triad of dryness, fatigue & pain
A large percentage of patients present with a clinical pattern totally dominated by severe dryness, fatigue and pain, which are not life threatening, but have a serious impact on the quality of life [/i]

It does take time for the meds to have greater efficacy and we learn patience, adaptations in how we do tasks, time ourselves.

I hope this helps you.
« Last Edit: June 24, 2015, 11:05:48 AM by quietdynamics »
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susanep

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Re: Could it ONLY be SS??
« Reply #11 on: June 24, 2015, 04:44:58 PM »
When I look back now to those years of hanging in there working on my job, I am surprised I did as well as I did with all the pain, and fatigue I had. 

When I got home, I would crash big time. My mom would often say how tired I looked, and that was after I had rested or even on the weekend.

You do need to trust what you feel about your pain, etc. Only you live in your body.

Hugs,
susanep :)
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trejonina

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Re: Could it ONLY be SS??
« Reply #12 on: June 25, 2015, 01:44:39 PM »
Yes, pain definetely.I stopped my meds. for 1 week and yesterday the knee pain overwhelmed me.So went back to meds. and pain subsided .SJ has many cousins, lupus, RA (including the seronegative type) fibromyalgia,etc. Quite a family we got ourselves into, God knows how and why.