Fibro or Sjögrens? Sjögrens or Fibro? (1) Pain

[soycoffee]

Whatever myI  complaint, my rheumatologist says "It's probably Fibromyalgia." Now the Fibro may be post traumatic, from being a pedestrian in a cross walk and getting hit by a car. That would make the start about 1989; but the diagnosis of Fibro came in 2000, ten years later.

In 1996, I had the sudden beginning of dry mouth, extensive dental damage, and other signs of Sjögren's. I didn't pursue a diagnosis then, because a) I didn't think the diagnosis would lead to any effective treatment, and b) it seemed that the dental damage had been done already, and would be fixed by a denture. (Little did I know how pervasive the problem can be!)

So -- and the rheumy has this history -- Sjögren's came first (1996) before Fibromyalgia.

I know about tender points with fibro, and with any pain, will test my body at the tender points -- even if the pain is just on one side, I'll check the other to see if there's weaker but also painful tender point on that side. If so, I'll conclude that the pain is fibro, and take acetaminophen or ibuprofen.

BUT if the pain is one sided, I tend to think it must be Sjögren's. But my rheumy still says Fibro. What I htink happens with what I'll call non-Fibro pain, is the my muscles are not necessarily swollen, nor my joints, but my *nerves* are swollen and painful, though not in a neuropathy sort of way. Possibly nerves and muscles, as I told one neurologist -- neuralgia and myalgia.

Does anyone have more thoughts on the distinctions about pain, either as taught by a rheumatologist, or through personal reflection?

I would appreciate more information, before concluding that my rheumy is unsympathetic.

Thanks in advance,
SoyCoffee

[Meld256]

Hi soycoffee,

If you're asking if we can distinguish one pain from the other, I would say sometimes I really don't know! 

I realize that's not a good answer, but that's all I've got.  I was first diagnosed with Fibro; I had 14 or 15 out of the 18 tender points, widespread pain and horrible fatigue.

Then my teeth decayed, and the dry eyes began. Later with joint pain.  So, some days I have a lot of joint pain along with the pain that seems like a deep muscle pain; those are the worst. Fortunately, those are few.

Took me 2 years to find a combo of meds that seems to help me the best for now; Relafen, Savella and Plaquenil.  This is just my personal story; I hope it helps just a bit. 
Take care,
Melinda

[Still in the hunt]

I just think whatever doctor you see will toss out what they think it is,, I wish they would quit just saying fibro without any real evidence of OTHER disease processes that mihgt be going on,, you sill might have a neuropathy,, you still might have fibro on top of it,, you might have a hundred things going on and thats the problem,, we go and seek  answers and get little in the way of any answers,, for almost three years I was told there was nothing worng with me when I was screaming that it hurt to take a shower,, it hurt to be in the cold, even after EMG studys It was normal,, until a punch biopsy showed small fiber neuropathy ,, they the sjogresn DX,, without positive bloodwork,and even after all this I still get tagged with fibro,, IBS,, and about ten other things,, I sometimes just think if were to complex and cant be solved in a visit or two,, were sent on our way to the highway of more specilist who then throw up there arms too,, good luck

[soycoffee]

Hi soycoffee,

If you're asking if we can distinguish one pain from the other, I would say sometimes I really don't know! 

I realize that's not a good answer, but that's all I've got.  I was first diagnosed with Fibro; I had 14 or 15 out of the 18 tender points, widespread pain and horrible fatigue.

Then my teeth decayed, and the dry eyes began. Later with joint pain.  So, some days I have a lot of joint pain along with the pain that seems like a deep muscle pain; those are the worst. Fortunately, those are few.

Took me 2 years to find a combo of meds that seems to help me the best for now; Relafen, Savella and Plaquenil.  This is just my personal story; I hope it helps just a bit. 
Take care,
Melinda

Hi Meld 256

Often I *know* when a localized pain is actually a signal of a minor flare/reaction due to fibromyalgia.  If the pain seems to be in one place, I poke around in that place for a nearby tender point that is hurting. If/when I find it, and it hurts, I go to the same tender point location on the opposite side of my body, and poke that. If the first tender point is, say, a 6, and the second matching tenderpoint is, say, a 4 1/2 or 5, then I know that the reason I feel rotten/in pain is fibromyalgia. That is simple enough.

At the beginning of September -- now I'm calling the whole ball of wax not just a flare but a storm -- I would go to get out of bed, or out of my wheelchair, step out my left leg, and scream. The pain was a 10 +.  In ten years of having fibromyalgia, I've never had that degree of pain from fibromyalgia, particularly not sudden, and particularly and especially not one-sided. Opposite side pains were there, but at a 4 or 5, not nearly a ten.

Also, the left sided 10 pain was spread over several areas of tender points, and subsided when I stood still without trying to walk.

Then I went to my PCP on an emergency basis, and could not reproduce the pain. My whole left hip to my waist hurt, but the standing and screaming didn't happen for my PCP. How embarassing, or how helpful if I could just have stayed there! :-) I resorted to pointing, and identified a bursa, at level 8. Found the opposite side place and it was also inflamed, at level 4. But there were two other areas on the left side that were also painful, the lumbosacral area, and the tender point halfway along the diagonal between the left lumbo sacral area and the left hip bursa. 

So you could call it bursitis, or generalized inflammation, or something, perhaps helped along, or involving, the fibromyalgia tender points, but NOT a simple or even complicated flare of fibromyalgia. Grr.

My teeth began major decay four years before the dx of fibro; I don't know when dry eyes began. Seems to me that I've been using eye drops my whole life. Then the dx of peripheral neuropathy, narrowed down to CIDP -- an autoimmune version of neuropathy, controlled with megadoses of Methyl b12 and Adenosyl b12 (dibencozide), and Gabapentin/Neurontin, decreasing from 3600 mg daily to 300 mg/day.

You mention plaquenil, Savella, and Relafen. Don't know any of them. My fibromyalgia has, for the most part been under control with  guaifenesin (Mucinex), for a long time just with 400 mg twice a day. Now with 800 mg twice a day, which I find drying.

The *storm* brought more peripheral neuropathy, and my peripheral neuropathy neurologist suggested I increase the dose of gabapentin again -- I've done that.

OK, so CIDP is not Sjögrens, nor is it Fibro, just part of the *storm*. Then I got Bell's palsy, which has been reported in people with Sjögrens -- just not part of the diagnostic picture of Sjögrens. Bell's palsy is due to swelling of the 7th cranial nerve, while in the same eye, I had an existing 3d cranial nerve injury. Together, they combined to persuade my right eye to spill out all tear production, and leave the eye completely unprotected. I don't know how long it took, but by the end of September I had corneal opacity in that eye, could only see as if through a heavy layer of gauze.

None of September's woes, it seems to me, was due to Fibro! I did find a new med that really helped. It was prednisone; I felt like 1992 was happening all over again. That seems to include the corneal opacity, which has gotten worse since weaning from the prednisone.

Where it doesn't matter, I would agree with you that "I really don't know" how to distinguish one pain from another. Here, I think it *does* matter, or perhaps it does matter, and it's worth the effort to make the distinction.

Thanks for your response to my query. This was my personal story.
Soycoffee

[Still in the hunt]

with everything you got going on,, how dare they say fibro,, fibro does not cause everything like that to happen,, again,, I thnk we look at fibro and see some symptoms and push ourself to thinking,, oh its just fibro acting up,, when we might have something more going on,, you say you have CIDP?,, that can cause a lot of stuff like what your going through,, FIBRO,, what a mess,, for the patient and teh doctor who just wants to say,, well its prob your fibro actinging up,, I thnk its just there way of getting you out of the office with a scrip for more pain pills,, JMO,, and only mine

[soycoffee]

Thank you, Still in the Hunt, for the support and the backing. While I won't show your response to my Rheumatologist, I might show my original post.

Best,
Soycoffee