rapid onset/progress of joint pain? Also, pain significantly worse on one side

[LilliaT]

Since I started being evaluated for Sjogren's earlier this year, my primary symptoms have been dry eyes/mouth/nose, as well as some fatigue.  One knee has felt wonky -- almost as if whatever's holding it together is a little lose, and it could pop out -- but I hadn't really had any other joint pain.

But just in the past couple of weeks, I've suddenly started to have joint pain.  It started out mild -- slightly aching wrist, slightly aching fingers -- but seems to be getting much worse pretty quickly.  Today, suddenly, my foot started hurting when I walked (I think the metatarsals?  the part that bends with your toes when you take a step forward), and my ankle aches as well.  My wrist and fingers have gone from just-achy-enough-so-that-I-avoid-lifting with that hand, to actually being kind of painful.

I had hernia surgery about 3 weeks ago.  Is it possible this is just a temporary flare triggered by the surgery?  Or is this some new stage in the progress of the illness, which will likely require more serious medication?  (Right now, I'm not on plaquenil or any immunosuppressive medication.  I'm a little scared of plaquenil because of the retinal toxicity, and I'm scared of prednisone because of all the side effects -- the bone-weakening, the bloating.) 

Also, this is mostly happening on my left side -- the wonky knee, the aching wrist/hand, the pain in my foot.  Is that strange?  (I do feel some mild discomfort in my right hand, but much less than on the left side.)  I thought maybe it was because I tend to sleep on my left side, and maybe put too much pressure on that side.  But I see (from a quick search online) that pain on one side of the body can be a characteristic of certain disorders. 

I apologize, again, for contributing not much to this forum other than questions.  I just find myself freaking out again, because things seem to be progressing so fast and I'm afraid of what it all means.  But, as always, I really appreciate any help.

[wendyoh]

hey that sounds like it could be scary for you at times. I can relate, I had some similar symptoms emerge after a surgery many years ago and it can be confusing to ferret out. I didn't notice one side particularly worse than the other, altho lately I have had a bit more of that, which could be related to cervical spine problem I have. 

Have you ran the symptoms by your doctor or nurse on call? I would do that just to rule out anything pressing. Beyond that, another thing I would explore and in  my case I have and my doc and I feel it could tie in to all of this, is Ehlers Danlos Syndrome. There is good info on line and I wanted to post about it one of these days and probably will. It is just helpful to consider it but there are no big cures or anything but can help explain hypermobility and pain in joints etc

Take care of yourself and hopefully its a flare of some sort that will pass. things tend to wax and wane with autoimmune, spinal and other illnesses.

[wendyoh]

also, surgery is a trauma for the body and in my case I think was a precipitating factor in causing certain problems to emerge. whether they would have eventually anyway is an unknown.

[belovedchaos1]

I'm still fairly new to how Sjogrens affects the body since I've only been recently diagnosed, but I might be able to help with information on the other stuff.

Do you mind if I ask why you were going in for surgery? Was it due to a disc herniation at your spine or something else? There are two types of herniations, one is when an organ becomes displaced and needs to be fixed or netted into place... and then there is a disc herniation when the inner part of the disc bulges out causing nerve pain on one side of the body, muscle spasms, and altered sensations or functions to the area of limbs affected.

From a Sjogrens perspective (please correct me guys if I'm misinformed on this aspect) - from what I've read can affect the way our body heals and how it creates and filters inflammation being an autoimmune condition... so surgery recovery might be prolonged specially if the spine is involved - being very close to our nerve tracts. Are you feeling weakness, or pain, or both below the surgery area on that one side? Have you noticed the pain changing for better? For worse? Are you doing any physio or rehab (massage, acupuncture, etc) for your recovery? Regardless it's something to consult with either the surgeon or your family doctor about, and to have them give you a rough estimate of what they expect for a recovery time with possible complications. Every person has a different recovery time, but it's good to know from their experience what they have seen... and also if they have any experience with recovery for people with other inflammatory/autoimmune conditions.

[LilliaT]

WendyOh -- Thank you for your posts.  I've actually been wondering if the surgery was a bad idea and might have triggered symptoms that wouldn't have otherwise cropped up (or that might have cropped up much later).  I made a note to ask my doctor about Ehlers Danlos Syndrome. 

Belovedchaos1 -- First of all, I like your user name.  Second, thank you for the information.  My surgery was actually just for a run-of-the-mill hernia.  Years ago I had surgery to treat endometriosis, and one of the tiny laparoscopic incisions (in my belly button) turned into an incisional, umbilical hernia.  The hernia surgery site itself seems to be healing well -- it has been a surprisingly easy recovery.  But it was after the surgery that the pain in my wrist, fingers, ankle, foot all suddenly appeared for the first time.  It seems to be getting worse pretty quickly, which is scaring me a little. 

[wendyoh]

keep us posted, The Driscoll Theory has great info, here is the dr.s website who developed it
prettyill.com/forums/

word of caution, your physician may not know much about EDS or be eager to refer for testing........but maybe you are lucky to have someone not afraid to think outside of the box (or managed care) but good to learn all you can on own ahead of time

[warmwaters]

Both theories are plausible - it could be a flare, or it could be something else. One thing to keep in mind is that autoimmune diseases can come in clusters. When you were diagnosed with Sjogren's, you have also been tested for some other diseases, like RA. 

Get in touch with your doctors and check. Make sure you know what you can take for temporary relief (such as ibuprofen or other analgesics), and if it persists, do a followup with your rheumy.

[LilliaT]

Warmwaters, thank you for your post.  I contacted my rheumatologist's office when the joint pain first came up, and I have an appointment in a week and a half.  I wish it were sooner.  A lot seems to be happening all at once, and I'm back to being terrified.  For example, today when I left work to go pick up my daughter, my left leg felt just the tiniest bit as if it were asleep -- just a slight numbness, as if I'd been sitting on it wrong.  I just assumed I had been sitting for too long.  But the feeling has persisted, and then my left arm started to feel the same way -- just the slightest numbness/heaviness, and a tiny bit of tingling.

It's pretty mild -- if I weren't already worried about what's going on with my health, I probably wouldn't think anything of this.  But right now, I'm kind of scared.  I made the mistake of Googling for information on what this could mean, in the context of possible autoimmune issues, and all the possibilities seem dreadful (e.g., some kind of neuropathy, vasculitis, etc).  Even the treatments for these things sound dreadful. 

I'm just so baffled by how fast this is happening.  Ten months ago I was happy as a clam, with only the normal worries that an average person/parent has.  Then the dryness started.  Then, just in the past 2 weeks, the left-sided joint pain started (very mild).  Then it got worse and spread to my right hand, and then this weird numbness started.  I'm scared by how fast this is happening.  Does this mean I'm going to deteriorate very fast?  Or is this just how flares happen?  (I realize no one can really answer these questions, but it's just what my brain is doing right now.)  I still feel so young; how is it possible that everything changed so fast?

[wendyoh]

Ah sorry to hear that Lillia, Warmwaters had good advice, and if you can run the symptoms by nurse this week yet just to be on careful side
But my flares definitely wax and wane with my spine and autoimmune issues
take care of yourself in meantime

[belovedchaos1]

Hi Lillia, thank you for your kind comments. As for the hernia... I can't say for sure, but the surgery doesn't seem fully connected nerve pain apart from that fact in may (as the others have states) have induced a flare reaction. I've had odd numbness in my foot that lasted two weeks before it went away just like it was never there. In my case it was probably a flare.

If it helps any - things you should look out for are extreme weakness, loss of sensations (touch or temperature), and if pain is constant and worsening. These things are more related to nerve injury, something joint wise that may be out of place, a pinched nerve, or other things. I know it's hard, but there are so many things on the internet that can scare you... I know it must be hard right now, but you're already doing what you can. If you can - keep moving it gently, lightly, as long as it's not too painful. That can help to keep blood flowing to the nerves, and can help to restore some feeling a bit.

Please let us know as well what your rheumy says, and keep us posted on how you are doing. Want you to be feeling better soon.