Is the pain we experience with Sjögren's usually diagnosed as Fibromyalgia?

[MAT51]

Or is this more common in the U.K than elsewhere perhaps? Do people think that the idea that Sjögren's and Fibro go hand in hand for most sufferers is true or do you think it's a way for some doctors to give up investigating and researching the pain associated with our disease as I do? It really worries me that so many people just accept this additional diagnosis but maybe this is my problem not theirs?

I'm experiencing a lot of (SFN?) pain in my feet and legs just now and it is really driving me to distraction because I have never experienced pain without there being a serious cause. No doctor has ever called mine Fibromyalgia but I live in dread of this because I don't really believe I have it. I just can't tolerate any pain meds at all though and so far (five months) the Cellcept has only made my pain worse, or coincided with a worsening of my SFN - who knows. Anyway I'm very interested in this how others respond to this question because maybe I should just settle for the idea - as most others on a UK Sjögren's Facebook seem to - that this kind of pain is caused by oversensitivity rather than a progressive and destructive inflammatory  process occurring - as it feels like to me.

[A Mom on Spin]

My pain has never been diagnosed as fibro because it doesn't correspond with those pressure or tender points those with fibro usually have.   Most rheumatologists know that a separate  muscle and joint pain usually accompanies Sjogren's.  And as for the pain from SFN?  That, too, has never been confused with fibro because of the burning and numb sensations which accompany it.

If any doctors tells me that either of these symptoms come from fibro, it would be time for me to find another doctor. 

Liz

[MAT51]

Thanks Liz. I think I'll just stick to this forum and HU from now onwards because I find it upsetting that so many call their pain "my fibro" as if it's a forgone conclusion.

I guess it upsets me for them but also selfishly, because I think it means that rheumatologists take longer to diagnose Sjögren's than other rheumatic diseases because Fibromyalgia is presumed - and also because it makes GPs and others assume that Sjögren's is always relatively benign? Yes there are specific tender points but a doctor friend of mine once told me that this is just a made up term with diagnostic criteria to match. Privately most doctors believe it's just an over sensitivity to pain. But to my mind it's more likely that many with connective tissue diseases are putting up with very real pain because, like me, they are fearful of being told it's just Fibromyalgia. I couldn't bear another assumed diagnosis that couldn't be confirmed. So far all severe pain I've ever experienced has turned out to have a real physiological cause so I want the cause of my present pain confirmed properly so I can manage it better. 

But then I'm not feeling myself just now because of this pain so it's possible that I'm just getting an oversized bumble bee in my bonnet!

[Jasper]

Sjogren's Disease can cause, pain either from connective tissue problems, inflammatory arthritis,  or small fiber neuropathy. Sjogren's pain is NOT "Fibromyalgia."

"Fibromyalgia" is a label used when doctors cannot figure out the true cause of the pain. It is not a diagnosis. I know that some doctors use it as a diagnosis, but it is just a label given to symptoms for which the doctors can not figure out the cause or are too lazy to keep looking for the cause. It's like saying a person has a cough without taking the time or effort to find out what is causing the cough.

I have never been told I had "Fibromyalgia." If anyone even suggested that, I would know that that doctor was ignorant and I would run, not walk, out of his/her office.

In a study that was done at Massachusettes General, they tested people who had previously been diagnosed with "Fibromyalgia" and found that 41% of those people actually had Small Fiber Neuropathy, so that 41% of people who were previously diagnosed with "Fibromyalgia" finally had an actual diagnosis for their pain, Small Fiber Neuropathy.  People need an accurate diagnosis in order to obtain appropriate treatment for the underlying disease, as opposed to just treating symptoms or not treating at all).  A label is not a diagnosis.

If you type in the following, an excellent video by Anne Louise Oaklander, Director of the Nerve Unit at Mass. General Hospital, will come up. It is an hour long and is well worth watching. It talks about small fiber neuropathy.

Type in:     youtube  a name for the pain

The video will come up. If there are several videos that come up, you can pick it out by the time, 59 minutes. 

[MAT51]

Jasper I could so easily gush lovingly and approvingly at your reply - but I'll try and show some restraint! Ironically I've just had to walk off a closed UK Sjögren's FB page because of exactly this thing of some people almost seeming to embrace their Fibro diagnosis because they are told it's secondary to their Sjögren's. In fact the term "they go hand in hand" was banded about with hugs and smiles. My alarm bells started to ring violently! I don't know why these people seem to feel more status from having Sjögren's AND Fibro but this is how it seems to me to be?

The very idea that I mooted that this isn't a real diagnosis caused several to call me patronising and ignorant and post links about how, increasingly, Fibromyalgia is being acknowledged as a real condition. I don't doubt their pain is real but I do genuinely have misgivings that the name they give it has any validity. What if they actually have PMR, RA, Sjögren's, Vasculitis, PsA, AS, Polymyositis? Calling it Fibro is such a high risk strategy I feel?

However I think I briefly went where it's better not to go - because I hate the idea of rheumatologists and GPs bandying about these fob-off non diagnoses as doctor code for hypochondriac or "suffers from health related anxiety". If you have Lupus, RA, Sjögren's or other then surely it is important that doctors locate source of the pain because it could be something erosive or very serious?

But for me;  well here in the U.K I'm told that the SFN of Sjögren's is usually self limiting so it seems I'm stuck with this pain flaring up on and off - more on and on and on these days. I've had it for long enough to know what it is and grasp the basic mechanisms. I struggle to perceive it as benign and I'm fairly sure it goes hand in hand with systemic inflammation - for me anyhow. I wish it had shown itself up in skin biopsies taken a couple of years ago. I wish my sudden onset Raynauds had shown up in nailfold cappileroscopy run last week. But I'm glad that at least my PV/ ESR and CRP usually fluctuate to tell my tale and that I had paired oligloclonal bands in my CSF and my lip biopsy was 100% positive.

I do think diagnostics based on presumptions are sometimes misleading and potentially dangerous so I guard my own signs like a crazy woman in order to make better sense of my symptoms.

[irish]

Fibro pain is not sjogrens . The latest I have learned is that fibro is pain that is accentuated by over sensitive nerve endings and especially in the trigger areas. This situation has been found to respond to some of the SSRI antidepressants. Fibro is a real condition the docs now feel and people are getting better since on the meds. It isn't anything that should be considered a neurotic or hypochondrial issue. For years this was the case. Fibro was a household word in the USA not so many years ago. This was probably back in the 70's and 80'S when the fibro was considered to be a hypochondriacal thing.

Also, people can have all kinds of fiber neuropathy pain with out a Sjogrens diagnosis. The thing that would be interesting to know is how many of these small fiber actually have the sjogrens and the nerve involvement is the only symptom. A lot of sjogrens cases have neuro issues before the dryness.

Fibro also affects trigger points and I believe that there are 11 trigger points. I can't imagine any doc diagnosing Fibro without the trigger point involvement being positive. I know that one of the rheumatologists I had was always checking me for trigger points and I was having some pain but never that much. I did not know what her problem was. I just figured that she was looking for some other disease to diagnose me with. Unfortunately she missed 3 other autoimmune diseases that I had. Irish

[MAT51]

Hmmm my former GP said that most of these trigger points are tender if people are extra sensitive to pain or have referred pain. But I do agree with the premise that some people may have heightened sensitivity to pain for any number of reasons. I would just like doctors to work harder, like good detectives, before landing their patient with a diagnosis of Fibromyalgia. And as you yourself have experienced - many don't look further.

I wouldn't accept this for myself and I feel that too many doctors are far too ready to assume that a patient who comes back over and over, talking about generalised pain - may get fobbed off with this Fibro label and find it very hard to then have their pain taken seriously by anyone.

Because, like it or not, Fibromyalgia is still viewed by the vast majority of medical practioners as a "functional" type of pain - meaning that they must be very often missing significant clues to diseases which need a proper diagnosis and treatment/ management. Interestingly the tender points used for diagnosis overlap significantly with enthsitis associated with spondyloarthritis - or Psoriatic Arthritis and Ankylosing Spondyloarthritis.

But mainly I just wanted to know what people here think about this idea that Sjögren's and Fibromyalgia go hand in hand for many sufferers. I feel, personally, that I would dislike this assumption being made for me immensely. Impressed as i was with my new rheumatolgist - I do know of someone who saw her the previous week with a lot of pain and a diagnosis of Polymyositis. My rheum told her that this wasn't active anymore (she's also on Cellcept) and,after prodding her gingerly in the rib (costochondritis - which I have too!) she declared this was Fibromyalgia and referred her for CBT and pain clinic. Maybe she was spot on (please forgive the pun!) but the person to whom this happened was not at all pleased with my rheum and has complained.

So I'm a bit on my guard always and admit that, over the years, I've kept quiet about my pain to a large extent and just self managed it as best I can. But just now the SFN in my legs and face is deplorable and I can't seem to tolerate any pain medications at all so I've made an urgent appointment to see a GP this morning to ask if I can try Nortryptilyne as my neurologist suggested a few weeks ago. I refused it then because I felt I was being fobbed off and didn't want to encounter the palpitations or increase in Sicca that Amitriptyline caused me. But needs must!

I almost started my Viagra this morning but my BP has only just settled down on increased dose of my BP med and I don't know if it would help for my mix of Raynauds and SFN indirectly. It seems rather a  long shot to me as I don't want headaches or hypotension on top of this intense foot and leg pain.

[SjoDry]

Dr.  Birnbaum reported a few years ago that when they do biopsies on Fibro patients, they are finding that they actually have Sjogren's.

SjoDry

[MAT51]

Interesting and somehow unsurprising SjoDry. I am not saying Fibromyalgia pain is of the mind - I don't believe that pain is ever the result of hysteria or subscribe to this idea that people are imagining or lying about pain. I mean why on earth would they?

But I do think there is often an underlying AI disease at work and once it has been identified then I'm not sure why an additional diagnosis of Fibromyalgia is necessary - since it only seems to help some doctors to discharge themselves of helping their patients effectively? I also wonder if it is holding back research into the mechanisms for the pain and fatigue of Sjögren's sufferers if so many rheumatologists are diagnosing secondary Fibromyalgia?

[irish]

Interesting about the biopsies and sjogrens. The thing I have heard is that they feel the pain receptors are involved in the fibro. As far as people on this site with fibro ---over the years I have not seen the word fibro talked about in great detail either alone or in relation to sjogrens. You might want to use the search listed on this site and plug in for fibro/sjogrens or just fibro alone. This should find you posts over the years about the subject. Irish

You might want to access Dr. Julius Birnbaum at John Hopkins. He is neurologist rheumatologist and the last info noted that he is the only one of these in the US.He specializes in Sjogrens. He used to come on this site and visit. Some people on this site go to him. Very smart man and seemed nice also. I researched him and I believe he had a masters in business or some such also.

[MAT51]

Thanks Irish - I did this and not that much came up. This is what prompted me to post here and ask. I'm in Scotland so I can't ask Dr Birnbaum much as I would like to as he's one of my medical heros. There is a Dr in England called Dr Elizabeth Price who is meant to be wonderful too and is the UK expert on Sjögren's. If I wasn't happy with my new rheumatolgist I was planning to pay to travel down and see her privately but my new rheumatologist seems good and thorough and so I don't think this is a necessary expense for me, bearing in mind that things are very tight just now.

To explain why I'm asking - I've actually just removed myself from a FB UK Sjögren's community because so many people were talking about their Fibro and some got very annoyed with me when I asked why so many who have diagnosed Sjögren's also get diagnosed with Fibro and admitted that I find it worrying. I probably should have left before allowing myself to get so riled about this though! But from what you are saying it does seem to be a UK trend and as the NHS is under huge pressure the cynical part of me thinks the worst.

I admit it really perplexes me to think of people with possibly serious diseases getting put on a shelf they can't get off by lazy doctoring. And since my own pain is flaring it seems pointless being unable to ask about it on a Sjögren's community without everyone telling me it's Fibro which they tell me goes hand in hand with my Sjögren's just as it does for all of them? And when I replied politely saying that I don't have Fibromyalgia (I've been under four rheumatologists for RA, now rediagnosed as primary Sjögren's and none have ever mentioned Fibromyalgia to me) they told me that I do have it as it's a secondary of Sjögren's - they think it's just a given.

Ach maybe all this pain is just making me carmudgeonly Irish?!

[Jasper]

Mat ..... I  think you were wise to get off of that other forum. It sounds like those people, at least the ones who were commenting to you, have no clue what they are talking about.

I think a lot of people just believe what their doctors tell them and never question if those doctors have a clue what they are talking about. There are good doctors and bad doctors, just like in every profession. Some doctors are well educated and keep up while others are not very well educated and do not keep up. Some doctors care and some don't. Some don't like to deal with patients who have chronic health issues and many do not like to deal with anyone who has chronic pain. Few doctors know much about Sjogren's Disease. Very few doctors like to admit that they do not know what is wrong with a patient.

"Fibromyalgia" is an easy label to plaster on every patient who has pain and every patient for whom the doctor cannot figure out what is causing the pain. Labeling the pain as "Fibromyalgia" allows the doctor to give a name to the pain, however incorrect and misleading, allows the doctor to quit investigating for the real underlying cause of the pain,  and allows the patient to get a "diagnosis," no matter how incorrect, unhelpful, and misleading. As you say, the doctor can then store the patient on a shelf and quit looking for the underlying cause, the real diagnosis.  For the patient it means that doctors will quit looking for the cause and the patient won't get the correct diagnosis or the correct treatment for the underlying problem.

The pain is real. What we need are doctors who will look for the underlying cause of the pain, not just give people a convenient label so they can stop investigating.

As far as pressure points, anyone can make up a bunch of criteria to meet what they propose to label. Actually, they have now changed the criteria so that pressure points are not even part of the criteria anymore.  However, most doctors forget one of the main criteria which is, "The patient does not have a disorder that would otherwise explain the pain."

We have a disorder that does explain the pain so we should not be labeled with "Fibromyalgis."  Actually, no one should be labeled with "Fibromyalgia" since it is not a disease that can be scientifically verified, but we actually already have a diagnosis that explains the pain so, even by their own criteria, we should not be labeled as having Fibromyalgia.

It was not that long ago that the medical profession had other erroneous diagnoses such as "Miasma." In my opinion, the label of "Fibromyalgia" falls into the same category as "Miasma."

New criteria, just more mumbo jumbo as far as I am concerned.:

https://neuro.memorialhermann.org/uploadedFiles/_Library_Files/MNII/NewFibroCriteriaSurvey.pdf

[irish]

I believe they also use chronic pain syndrome label for these patients. I am hoping that people with this issue are getting some appropriate treatment. I believe a psychiatric work up is also necessary with these patients. Irish

[sixty]

One of the first Rhuemys I had told me I shouldn't be feeling so much pain.  I knew after that I needed to find a new Dr.  I shared with her I was taking a narcotic for pain relief along with my other drugs and she always objected to the fact I was feeling so much pain.  By then I had read many books and experienced enough symptoms to know she was lacking in education and needed to go back to school.
Sometimes you need to think for yourself. 

[quietdynamics]

I have Sjogrens and Fibromyalgia. They are for me distinctly separate pain experiences.
For myself I felt the Fibro pain alone, while on an extended prednisone trial. The Fibro pain, I can explain as 'bone crushing, unrelenting". during this pain I have thought " they take horses out their misery".  And I would wake in the morning with utter fall down fatigue. 

The 'old school' thoughts were the cliche 'mind/body connection', which I would counter a Drs. quip with the "Ah, yes.. then there is the reality of the 'body/mind connection' ---> pain causes stress and is exhausting, loss of quality of living and so frustrating, depressing as one grasps at straws for relief.

The treatment protocol is not the same as for Sjogrens. And a pysh evaluation is not part of criteria for Dx. I am taking a combination of Cymbalta/Gabapentin to manage symptoms. "However, such side-effects can be minimized and abrogated by slow titration. Although the complex pharmacokinetics and gradual titration of gabapentin may warrant a therapeutic trial as long as 8 weeks in other syndromes, the slower titration in Sjögren patients may necessitate a trial of 3 to 4 months".. additionally Gabapentin is to be taken 3x's/day.

MRI's do show  Fibromyalgia in brain, and "There is a blood test -- called FM/a -- that identifies markers produced by immune system blood cells in people with fibromyalgia. One study showed the test can also help distinguish fibromyalgia from other conditions that can have similar symptoms, such as rheumatoid arthritis or lupus.Jan 2, 2017". Perhaps this test will help accurately Dx and to treat patients with Fibro. 1.3-1.7% of population has Fibro, and it is present in 30% of patients with Sjogrens. (Additionally indications are that those with an AI can present with other conditions. Bearing in mind that there is the subset of SJS seropositive patients who never prsesent with symptoms and then the subset of seronegative patients. So it is a quandary for Drs. who do not specialize and have clinical expertise in Sjogrens.

So as medical professionals due to research and more advanced diagnostic tools learn more, so too does the 'old thinking' about the wonders of the human body.  For those of us along the disease spectrum it can take years to find Drs. beyond the older cut and dry General definition of Sjrogens as "A Sicca Syndrome".

Sjogrens with Vasculitis, Livido Reticularis tingling, etc  another chapter. These symptoms are due to inflammation (Cellcept is reported to help manage).  Methotrexate has helped manage these areas for me, among other things.

http://americanpainsociety.org/about-us/press-room/fibromyalgia-clauw

"We need to be ruthlessly paranoid that we might be overlooking the spectrum of infection in these patients," said neurologist and rheumatologist Julius Birnbaum, MD, MHS, associate director of the Johns Hopkins Jerome L. Greene Sjögren's Syndrome Center in Baltimore. Dr. Birnbaum and an expert on lymphoma risk in Sjögren's both offered tips for rheumatologists to screen and treat patients in the session, Clinical Challenges of Sjögren's Syndrome: Neurological Complications and Lymphoma Risk, at the ACR/ARHP Annual Meeting in Boston on Nov. 17, 2014.  http://www.the-rheumatologist.org/article/2014-acrarhp-annual-meeting-sjgrens-complications/

Neuropathy in Sjs: Review by Julius Birnbaum 2010
"  This review article will discuss the clinical features, the differential diagnosis, salient immunopathogenic mechanisms, and the evaluation and treatment of CNS and PNS syndromes which occur in Sjogren patients. In the first-part article presented here, I review the daunting array of PNS syndromes, which may occur in Sjogren syndrome. The second part will highlight the CNS manifestations which occur in Sjogren patients." http://webcache.googleusercontent.com/search?q=cache:WjtkTTzkQv0J:www.sjogrensforum.com/from-the-doctor/neuropathy-in-sjs-review-by-julius-birnbaum-2010/+&cd=6&hl=en&ct=clnk&gl=us

Towards a neurophysiological signature for fibromyalgia    http://wanirepo.github.io/pdfs/LopezSola_2016_PAIN.pdf