Thoughts on Fibromyalgia with Sjogren's and :) observation about MMF/ Cellcept

[MAT51]

 Hi All. I've been so fatigued and struggling with the widespread peripheral toothache pain at night (many have suggested Fibro?) - that I've only just clocked that my longstanding disequilibrium appears to have settled - just as it did while on steroids. As I'm told I don't have a vestibular disorder and my SFN seems very active - I'm a bit baffled by this but perhaps it is at last something very positive I can attribute to the Cellcept? I haven't had to use my cane for my balance for many weeks now and have shed the drunk sensation!

Thinking of surge in night pain, especially in my knees, I did just put Fibromyalgia into the search engines here and saw lots of posts mentioning it or querying it as a diagnosis. This link interested me:
http://www.news-medical.net/health/Fibromyalgia-and-Sjogrens-Syndrome.aspx

I've always been very resistant to the idea of it tbh in case it halts thorough investigations - and none of my doctors have ever suggested that I have it yet anyway - although all the Fibro medications are offered to me for my SFN. But I'm thinking perhaps that many who have Sjogren's or other - are misdiagnosed or fobbed off with Fibro or ME for years? But then, reading this Med.net page I find myself wondering if it is just a name for non erosive/ benign connective tissue pain after all? And is that so bad really?

And looking at UK SJS support group FB pages as I've been doing - people seem to be generally much  more resigned/ reconciled to Fibro coexisting with Sjogrens than I've been so far. Thoughts?

[SjoDry]

Mat51,

Dr. Julius Birnbaum (Hopkins) reported that they had found that when they do skin biopsies, they are finding that patients diagnosed with Fibro, actually have Sjogren's. There is no doubt in my mind that there are many mis-diagnoses happening on a regular basis.

Take care.
SjoDry

[MAT51]

Yes SjoDry - a day of considering this hard has led me to the same conclusion as yours. Sjögren's is a very underdiagnosed disease and Fibromyalgia is a very over diagnosed condition. And if they don't yet understand the mechanisms behind Sjögren's pain then how can they know it's benign. SFN isn't benign when it affects diabetics so why should it be viewed as benign when it affects Sjögren's sufferers?

[Joe S.]

I think there is more understanding of the connection than most would think. With Fibro you are not allowed to donate blood or bone components. You are often considered to have an auto immune disease.

I was told that Fibromyalgia was was waste basket diagnosis by lazy doctors. It is in the WHO book of diseases. I was also told that it takes 5 - 7 years after diagnoses for you to reach a state of management then you have about 20 years of what may be considered remission before it comes back and hits hard until you die. I do not like this outlook.

in 1983 an auto accident triggered Fibro symptoms. It took until 1989 roughly to get a DX of Fibro. Things got worse in 1998. The Rheumy would not say what it was but sent me to a neuro to be checked for Sjogrens. I had no idea what the symptoms were. Since I had been dry for most of my life, I considered that normal. When i finally got the DX I asked the new (4) Rheumy what he thought I had with "Dry eyes, nose, mouth, skin, and A$$". Sjogren's / SICCA was his answer.

This path led me to believe that Sjogren's is an under diagnosed disease. I also pray that those that received my 8 gallons of blood that I donated before diagnosis of Fibro do not face this challenge.
 

[MAT51]

Thanks for your thoughts Joe. I've just had an interesting chat with a helpline person and we concluded that my pain is most probably due to small fibre neuropathy and vasculitis - because of the colour changes in my legs and feet, shiny wrinkled skin and non muscular location of the pain. I don't think I would allow for Fibro myself because my symptoms don't fit the diagnostic criteria re location of pain points, headaches, mood swings and musculoskeltal pain.

Those who have said that to me that they have similar/ identical pain to what I describe, and it is due to Fibro, have probably been misdiagnosed by lazy doctors. That's what I believe. Those who have a more myalgic pain in large muscles may or may not have Fibro - if it even exists as a condition. There are vascular diseases such as PMR that present in this way so I personally wouldn't accept this diagnosis I've decided. Good job no doctor has ever mentioned it to me yet really!

Interesting about blood and bone donors and Fibro - never knew that? Yes I agree if it was only a manifestation mental health/ stress/ anxiety as doctors often imply -then why would they spurn the blood and bone of Fibro sufferers in this way?

[irish]

Some more information for you folks to think about. I have had a really miserable year with pain in my body. I had to quit my plaquenil because my reflux was so bad after I took the pills---even with food. My stomach felt so much better when I quit the plaquenil but might be some of the reason I am aching. However, I did have aching and pain about 5 months before I quit the plaquenil.

So, it has been one episode after another with hardly ably to walk because of tendon pain in feet or really bad back pain. I was to neurologist yesterday and she told me I was a mess, but she has a good sense of humore and had funny way of putting it which I appreciated. She told me that my ferritin level is low all the time and I am anemic much of the time. She did a whole bunch of blood work and said that the chances are good that I will need IV iron. She said that low ferritin levels cause dizziness, body aches and pain, bad fatigue, which I have. I also fell 2 times last week from weakness just as much as balance.

So, that was something I did not know. I should know more next week. I have infusion and will be at my sons for almost the whole week. I am not happy about having IV iron but it may be that I have no choice cause I can't live the way I have been the past couple of months. Not good all year but worse now. It is the pits being ill and then getting old on top of it. Good luck all. Irish

[SjoDry]

MAT51,

I also saw a Rheumy once who did not even examine me, spoke in the most condescending way a doctor has ever spoken to me (in my entire life). He announced from across the room that I had Fibro and then followed it up with, "You might want to get a counselor". I think you are correct lazy docs or docs who have decided with a brief conversation, that we are neurotic...so we have Fibro.

I resisted the urge to write one of my "I will be heard" letters and gave him a very deserving review on a few rate your doctor sites.

Hope you have some relief soon.
Take care.
SjoDry

[warmwaters]

My rheumy sees the fibro situation like this - That you have it if you meet the diagnostic criteria, and there is no other diagnosis that explains those symptoms. But, she points out - many of the symptoms of Sjogren's overlap with fibro, so if you have Sjogren's you probably don't have fibro.

I think that some day, we'll actually have a much better model of how many of these help problems work, and then we'll really understand the relationships.

[irish]

The medical definition of fibromyalgia makes perfectly good sense to me and it sure doesn't mean that people are "nutz". These doctors sure don't get it. I always wonder how life would be if their wife or hubby had one of these diseases. Might change their tune. Irish

[MAT51]

MAT51,

I also saw a Rheumy once who did not even examine me, spoke in the most condescending way a doctor has ever spoken to me (in my entire life). He announced from across the room that I had Fibro and then followed it up with, "You might want to get a counselor". I think you are correct lazy docs or docs who have decided with a brief conversation, that we are neurotic...so we have Fibro.

I resisted the urge to write one of my "I will be heard" letters and gave him a very deserving review on a few rate your doctor sites.

Hope you have some relief soon.
Take care.
SjoDry

Appalling! Thanks for telling us though. I rest my case about doctors and Fibro then

[MAT51]

The medical definition of fibromyalgia makes perfectly good sense to me and it sure doesn't mean that people are "nutz". These doctors sure don't get it. I always wonder how life would be if their wife or hubby had one of these diseases. Might change their tune. Irish

Hmm it does kind of make sense but the problem is when they apply it to all unexplained pain. For instance your story that in fact your pain was due to low ferritin levels makes much more sense and your rheumy was astute enough to look for the actual cause - many aren't. Fibromyalgia isn't a disease but it is probably a good indicator that something is wrong that needs further investigations until the source of this awful pain is found.

I spoke on the phone about this to a Sjogrens expert and fellow sufferer yesterday. She said Restless Leg Syndrome sounded a bit like what I have. She said here comes on when her iron levels are too low. So by diagnosing people with Fibromyalgia and RLS they might end up missing an important clue? Good luck with the iron infusions - hope they aren't too awful and your son looks after you very well.

[quietdynamics]

I have a Dx of both Sjogren's and Fibroyalgia.
My experience due to med trials is that the pain experience with Fribromyalgia when Sjgrens is controlled is significantly different.

Chief Rheum at teaching hospital Dx'd Fiibro with Sjogrens (and took off Dx of Lupus).
Dr. Vinino @ PennMed Sjogrens Center concured when I questioned Fibro.
Drs. Baer and Birnbaum @ Hopkins Sjogren's have articles noting occurrence of both in patients.
Treatment protocol is different and not one size fits all.

Before any Dx when I went to GP, I was waking in AM exhausted, falling out of bed and bouncing off hallway walls on way to get ready for work.
My legs would feel like they were weighted down with lead, and I would stumble, falter, stairs where tricky. Exhaustion could bring me to tears.
Test and MRI to check for MS.. then GP determined Fibro.. but other issues did not get better .. so off to Teaching Hospital and later DX

There now is a test for Fibro 
"Once we have a biological test, we will know that study participants do indeed have fibromyalgia. There will be no skewed results, and the talk of psychological illness will be in our review mirror.  This is a savory thought."
"Another team of researchers in upstate New York has found that fibromyalgia patients have excess sensory nerve fibers in the blood vessels of their hands, which may disrupt the flow of blood throughout the body."  (I have short times when my extremities turn reddish purple, sometimes an odd greenish hue.. but thankfully not often of late.)
http://nationalpainreport.com/new-fibromyalgia-blood-test-is-99-accurate-8821072.html

"Past imaging studies of patients with fibromyalgia had shown abnormalities in cerebral blood flow, also called brain perfusion. In some areas of the brain, blood flow was below normal, and in some areas, it was above normal. In this study, by using whole-brain scans on the participants, researchers were able to analyze how perfusion in each area of the brain related to measures of pain, disability, anxiety, and depression."
http://www.webmd.com/fibromyalgia/news/20081103/fibromyalgia-a-real-disease-study-shows

Fibromyalgia Stamford Uni Video: Pain management
https://sjogrensworld.org/index.php?topic=25284.0

Podcast: Is There a New Explanation for Fibromyalgia?
Dr. Anne Louise Oaklander is Associate Professor of Neurology at Harvard Medical School and an Associate in Neurology and Assistant in Pathology at Massachusetts General Hospital in Boston  http://relief.news/new-explanation-fibromyalgia-podcast-anne-louise-oaklander/