A question. A theory?
Posted , 8 users are following.
Has anybody wondered like me, about the Fibromyalgia - Sjögren's Syndrome bedfellows?
It seems that a number of people get a diagnosis of Fibromyalgia before (sometimes long before) they get their diagnosis of Sjögren's Syndrome (S.S).
However what if it is really S.S. all along.? What if for some, S.S. encompasses as part of its symptom manifestation these 'Fibro like' symptoms? We know the level of ignorance which seems to pervade the medical world about many aspects of S.S, and particularly regarding extra systemic involvement, so is it possible that science has not yet put it all together as part of the aggregate of symptoms?
It seems impossible that it could be so in 2017 but have you experienced people any ideas or thoughts on this?
1 like, 20 replies
estelle44124 Megheart
Posted
It all sounds so familiar. Today was my asthma clinic check-up. I don't have asthma. BUT when I get a choking coughing fit because something's stuck in my throat, my clenil inhaler helps tremendously to ease things. In order to retain the clenil inhaler on my prescriptions repeat I have to be asthmatic!! The nurse knew absolutely nothing about SS. I treated her to a lecture covering most f this post. But neither my dentist (I have appalling teeth), optician nor consultant optician (went specifically with gritty and painful eyes) said SS. I am now 74, and only diagnosed six years or so ago!
Strikerlm Megheart
Posted
Hello Megheart and all others following this thread on the theory of the connection between sjogrem's and fibromyalgia. I have also been diagnosed with fibromyalgia although I don't fit the criteria. I believe my doctor just threw his hands up and threw the diagnoses out there to try and shut me up. It is my opinion (and may anger some), that no one has fibromyalgia. I believe all of us diagnosed as such are there because our doctors can't or won't try to find the cause of our symptoms and because a lot of us don't have testable conditions like failing organs or high enough autoimmune markers. My eye doctor also suggested I get tested for sjogrem's based on my lack of eye lubrication. My family doctor refused to test me. I believe people diagnosed with fibromyalgia as a secondary condition are also misdiagnosed and are likely developing another autoimmune disease that could take years to truly show its self. Or that science has not discovered that fibromyalgia symptoms are actually part of many autoimmune diseases. Doctors and scientists have a real hard time with things they can't see or test like extreme fatigue or joint pain without swelling.
Tumtum1963 Strikerlm
Posted
I couldn't agree more with you Srkerim. I count myself extremely lucky that I've never yet been diagnosed with Fibro because of very high, fluctuating levels of inflammation in my blood. I was originally diagnosed with RA despite only some just visible inflammation in my knuckles and fingers and lots of bilateral joint pain and a weak positive Rheumatoid Factor. I knew somehow that RA wasn't my main problem and failed to tolerate four DMARDs and 3 drugs for neuropathic pain. Still no one said Fibro although one rheumatologist undiagnosed the RA and called it polyarthritis unspecified. Then I finally came off even the steroids, ANA turned positive and I was offered a lip biopsy for the second time - this time went ahead and it came back 100% positive.
Now they think I had primary Sjogren's all along and I agree. Treatment now is a last ditch attempt at immunesuppression -agreed to reluctantly by rheum- so I'm on a trial of Mycophenolate which is the first drug I've tolerated. Otherwise I will only be offered more Fibro drugs which I refuse to try. Pain and weakness in all four limbs and mouth is as bad as ever though.
Although I always dreaded a diagnosis of ME or Fibro - I can tell you that being diagnosed and treated aggressively for the wrong disease is a very alarming experience too. It is not a win win situation with a disease like Sjogrens I'm afraid.
I feel everyone with so-called Fibro or ME should be offered the full gamut of blood tests and a lip biopsy if they want one. It's important that there are tight diagnostic criteria though because there are lots of other diseases, conditions and reasons why a person might have very dry eyes/ orafaces. Only when more people are properly diagnosed with Sjogrens will research and trials get underway for more targeted treatments.
linda80939 Megheart
Posted
Hi Megheart,
I think once you have an autoimmune disease then your susceptible to having more than one.
So definitely a case of bedfellows.
I was diagnosed with rheumatoid arthritis in 2002, I managed to cope with this as I was put on to the newly formed anti TNF trial in 2004, which had a big impact on my life.
I managed to hold down my part time work for a few years but I then was diagnosed with osteoarthritis in my wrists, knees and spine. There is a connection with RA and osteo.in 2008 I was diagnosed with raynards and tinnitus,again a connection.I then went through a period of time when I was diagnosed with extreme post traumatic stress disorder and needed to have psychotherapy. I then had a diagnosis of SS followed by a hiatus hernia,stomach ulcer and acid reflux.
Over a year ago I was diagnosed with fibromyalgia, when I didn't feel I could have any more diagnosis Sept 2015 after scans and lung function tests I was diagnosed with pulmonary fibrosis caused by rheumatoid nodules in my lungs and scaring. In the 18 months since this diagnosis my lungs have deteriorated quite quickly.
My main point, that I feel everyone should be aware of is, once you have one autoimmune disease then you
are more susceptible to having others.
Sometimes I dont like to mention my illnesses as it makes me feel like I am either very very unlucky or lying but what the truth is every one of my illnesses leads back to rheumatoid arthritis. My rheumatologist doesn't even call it RA anymore but rheumatoid disease,because it affects so much of your body. I think this is what we should call it as....1 it affects all your joints,muscles, organs and all connective tissue. 2... when we say that we have RA how many people say that they to have aches and pains,they may do but arthritic pain due to wear and tear is nothing compared to RA pain.
Linda