It just goes to show.........

[Francelle]

I have been coming to this board since early in 2010 lumbered with a diagnosis of Fibromyalgia and probable M.E.....and that may still be the case!

My earliest symptom diagnosed unequivocably as a stand alone condition one week before getting very ill, was peripheral neuropathy. Exactly one week later on the 3rd of August 2007, whammo - extreme fatigue (four months in bed), nausea, joint pain, muscle pain and many, many other symptoms which I'd have to check my notes for.

Most of my symptoms have been referenced in the literature as related to M.E. and to some extent Fibromyalgia, including a diagnosis checked off against the CCC.

Over the time since diagnosis I have as able, researched my individual and collective symptoms....yet some of my symptoms were not often mentioned for instance on this board, which always left me with an element of doubt. Also many say that these conditions are a wastebasket diagnosis or similar, so one tends to keep ones antennae up looking, just in case something has been missed. Does anyone else do this?

Well last week I went to my very experienced M.E./CFS specialist doctor (only second time I've seen him) and I innocently told him I had two new symptoms which had emerged since I last saw him in September. I told him that my mouth was peeling skin everyday from around the gums and palate and the skin of my mouth felt rough. He looked at me intently and asked me how my eyes were. I mentioned that my vision is often blurry, eyes often feel gritty and irritated and have had heavy eyelids off and on for four years now.

He then said he felt that I probably had Sjgren's Syndrome and after a moment of being taken aback, I then thought, no big deal.......dry mouth and dry eyes that's ok, nothing compared to what I've had. Then I started to think....what if???

So back to doing some more research, this time on the specific symptoms ofSjgren's and what do I find? Dry mouth and dry eyes the least of my symptoms and worries relatively speaking (but progressive evidently - something to look forward to.... yuck) ....however just a little digging and I find peripheral neuropathy to be one of the non-glandular symptom. So too are problems like gastroparesis, swallowing and gut problems! Over active bladder too......and

......until five minutes ago I felt that one other symptom I have - orthostatic intolerance didn't fit but I just read this "Orthostatic symptoms related to dysfunction of autonomic control of blood pressure and heart rate is associated with increased severity of Sjgren syndrome". Phew I thought I'd have to come off the beta blockers which are very effective.

So although the online sites and literature tend to labour the dry eyes and mouth (which are essential components) the people with more severeSjgrens can have many other symptoms as it is an autoimmune condition which can affect many organs (multisystem).

Also paradoxically....perhaps....I read "Reports on the use of rituximab in patients with primary Sjgren syndrome have emerged in the literature". (sorry too late to put in my references but can if anyone wants them).

So although this diagnosis is not confirmed yet it explains a lot of things.

Perhaps Dr Hyde and others who say that a fair percentage of people withthe diagnosis of M.E./Fibromyalgia really have other undiagnosed conditions are quite correct. I'm beginning to see that is possible although I did not expect that outcome for myself, as I got tested for almost everything four years ago.

 

[Seven7]

Funny because I have being wondering for a while about me too. I have an uncle with Sjgren syndrome so I know it runs in my family. But I always disregard it because I very rarely have dry eyes. In the case of saliva I have more than normal I think. I have swallowing issues but I attribute to Acid reflux, when on meds it gets better.

When I have felt red gritty eyes, I have always attributed to allergies so never had mentioned it to Dr before. I have Dysautonomia and a lot of neuro symptoms but the symptom that always made me wonder about Sjgren syndrome is this deep pain in the joints (always same ones) like left arm meet the shoulder join, like they are dry and I feel bone over bone. And when I rotate my neck it feels stiff and sounds like when you eat rice krispy. Not Sure if all CFS have this???!!!????

Seven

 

[peggy-sue]

I get dry eyes, but I've always put that down to being past "the change" (yippeee!).

I use hypromellose drops when they're bad. Cheap and effective, over-the-counter artificial tears.

I think Sjorgen's is another of these things that can take years and years for a diagnosis to be made.

 

[runner64]

Hi Francelle, I have the eye tongue rough and coated stuff like you. I got the same diagnosis 2 weeks ago. I didn't buy it.

If you read my head brain eyes thread in this section you'll see what my deal is. I believe my CFS with joint inflammation and other things to be pathogens.

This Dr. Nicolson has found many that were told they had many of these diseases Sjogren's included, to have mycoplasma, bacteria, infections. It refers to just that in these links which I posted here and on my thread too.

He mentions causes of Sjogren's and many other autoimmune disease caused these pathogens here. The pdf's on the bottom of these are good.
http://www.immed.org/illness/autoimmune_illness_research.html

Many Fibro and CFS causes being the same.
http://www.immed.org/illness/fatigue_illness_research.html

His symptoms list says the tongue and eyes as well as many more.
http://www.immed.org/signsympt.htm

I sent my blood down to the states from Canada to get tested.

I thought this might be interesting to you for another plausible perhaps to add in.

I did go to a Gulf War Vet forum and read their experiences as he "discovered" why they get CFS, and these symptoms and it seems many of them and we civillians contract these pathogens. I am using his doxy treatment. Some of the people on those forums I read improved with his treatment and I read improvement through letters and the FAQ thread on his site too. I did read on his letters, or FAQ thread, someones tongue symptoms and blurry eyes disappeared on treatment. You can find it in there. I'm hoping for that.

I'm letting all of you know what my test results yield in 2 or 3 weeks and how I feel the further this treatment progresses.

*Steven, I also have that shoulder thing you described and milder bone pain and knee joint inflammation.

 

[Ocean]

Francelle you mentioned the heavy eyelids. Do the muscles around your eyes hurt? I get that and have no idea what it could be from. I do feel an overall sense of dryness also. I have other symptoms that you list but there are so many overlapping symptoms with so many of these conditions it's just so hard to know what is what. Do you get PEM? Because I get it so noticeably and clearly, I feel confident that my CFS diagnosis is right but that doesn't mean I may not have other stuff going on in addition. What will it take for you to get a certain diagnosis?

 

[runner64]

Oh gosh. I have the heavy lids off and on too. It's like there's lead in them sometimes. And I have soreness in the extra ocular muscles that are connected behind behind the eyes and I feel it looking right to left. It used to be around as well, but now just behind. It's strange to see these types of symptoms are not out of the norm.

 

[Wayne]

Remission from Sjogren's Symptoms

He then said he felt that I probably had Sjgren's Syndrome...

Hi Francelle,

You may want to check out this thread by a woman whose Sjogren's has gone into remission as a result of a therapy called peptide injections (which are fairly extensively used in Europe):

Update--3rd Peptide Injection Today

Best, Wayne

 

[Francelle]

I have no vested interest to be in either camp so will wait and see. Just want to know the truth. Lymphomas are very common with Sjogrens so don't like that very much, but then they seem to happen in M.E. also.

I am due to see an Opthalmologist is May - the best one in the city evidently thus the long wait, otherwise I could see one next week. Doctors can do lip or salivary gland biopsies also, so relatively easy diagnostic procedure.

Whatever it is I have all these symptoms anyway so it doesn't change much.... except I will take it to its end conclusion and try and find out one way or another.

Will read any links that have been posted.

 

[Francelle]

Francelle you mentioned the heavy eyelids. Do the muscles around your eyes hurt? I get that and have no idea what it could be from. I do feel an overall sense of dryness also. I have other symptoms that you list but there are so many overlapping symptoms with so many of these conditions it's just so hard to know what is what. Do you get PEM? Because I get it so noticeably and clearly, I feel confident that my CFS diagnosis is right but that doesn't mean I may not have other stuff going on in addition. What will it take for you to get a certain diagnosis?

Occasionally the muscles around the eyes hurt but sometimes this is associated (so I've heard) from (extra) rapid eye movement during sleep. Don't know if this is true or not but the occasions I've had it I have woken with it so assume it has something to do with a process during sleep.

To be honest yes I've had these eye and various mouth symptoms for four years but compared to my other symptoms they have paled into insignificance somewhat. Yes I have written on this board about my heavy eyelids and wondered if others had it.....and have written about geographic tongue, and mucocoeles in the mouth etc but just to see if they were symptoms in common.

Yesterday I went to an optician just to get a sense of what may be happening while waiting for the opthalmologist and he said using computer screens a lot causes dry eyes and irritation. Also age. So there are factors common to all. He felt that it was useful for anyone experiencing dry, gritty, irritated eyes to use lubricant drops which can be purchased at pharmacy outlets or opticians.

Well! Regarding getting PEM I would have thought so. Used to spend three days in bed after overdoing it by a tiny amount. So I believe I did get it for four years and therefore adjusted by pacing my lifestyle (tough learning process) and still not always successful. However since starting on beta blockers six months ago I haven't had one major episode at all, even though at times I feel I have pushed the envelope with chores. I have found the beta blockers to be totally awesome in giving me my life back. That is not to say I don't get terribly sore, stiff and painful muscles still, nor troubled by the gastroparesis etc etc but PEM is SOOOOO debilitating. It takes away the centre of your life.

I have really identified with the M.E./CFS camp as I felt that was all diagnostically I was left with. So wherever this all leads, I will always feel incredible empathy with you people as our struggles are very parallel.

I think I mentioned in my previous post that a lip biopsy is usually diagnostic....but to be honest I haven't checked up on much of that yet. There may be other ways to make a definite diagnosis. A rheumatologist manages the condition primarily but other specialties are needed if and when other organs are affected.

Warm regards

Francelle

 

[Ocean]

Thanks for answering my questions Francelle. It's so good to hear how much the beta blockers have helped. Was that given for orthostatic intolerance? What type of doctor prescribes that for OI? I really would like to try them for that, it's good to know there's a chance they may help me with PEM as they have you. You're right that PEM is an absolutely miserable symptom. It's the worst part of the illness for me I think. Hope you get some definite answers soon. Even though it doesn't change the symptoms you have, it always feels good to know what's going on I think.

 

[runner64]

Well, that's an interesting link Wayne posted. Inside his link there's this one with the peptide site and here's testamonials. I've not extensively looked at it.
http://www.autoimmunedoctor.com/testimonials.html

I have lot's of neuro stuff though and it doesn't seem to discuss that. Is this the PEM brought up? I'm unfamiliar. I found a few different definitions for the acronym. Paraneoplastic Encephalomyelitis = PEM?

 

[taniaaust1]

Francelle .. sorry to tell you this but Stojgens is a well known coexisting condition to ME. Having ME increases someones chances of getting it. Its listed as a co-morbid entity to watch out for in the Canadian consensus document but under the other name for that condition (Sicca syndrome)
I do hope you do turn out only to have that and not both things.

runner.. PEM when used on ME/CFS forums tends to stand for post excertional malaise

 

[Francelle]

Runner64, PEM means post exertional malaise. PEM occurs typically in true M.E. anytime from a few hours but more often 24 to 36 hours following activity. Sometimes called 'payback'. It can lay one low then for days or even weeks and some have found months at a time whereby one cannot resume everyday activities. There can be some variations in time of onset for some but generally the above is roughly what happens.

Ocean, sadly I don't know what doctor generally would prescribe beta blockers in M.E. I am fortunate to have been going to an M.E./CFS clinic for almost twelve months and one of the initial tests they did was to test for OI. It was just in the nick of time for me as I was having dreadful problems with palpitations, missed beats and tachycardia.

Strange that for me at least as soon as the cardiac stuff was dealt with, the worst of the PEM (if that is what it was) stopped.

If only our GP's/PCP's would do something about these type of symptom complaints.......I had an idea tonight....I don't know if emergency departments where you are take all patients seriously when they come in complaining of chest symptoms but they do here, in fact they say 'better to be safe than sorry' even when nothing conclusive is found. Perhaps what more M.E. patients need to do is when they are having distressing chest symptoms present at an emergency department (just as anyone else would) but DO NOT under any circumstances say that they have M.E./CFS (as it doesn't exist anyway does it wink, wink?) and get them to do the full work-up and see what they find.

Unfortunately tests for OI like 'the standing test' or tilt table test may need some more devious schemes.......you'd think by all this intrique that I was such a devious person but I am really as pure as the driven snow and hopeless at trying to advocate for myself into the bargain!

 

[runner64]

Hi ladies!! Thankyou for the definitions of PEM Taniaaust1 and Francelle. I have this, since July 2011 and it's steady, not waxing and waning. That's when I got really sick and more symptoms came in at 8 weeks. There's is NO way I can do daily life right now and I was a goer.

And good one Francelle. I like your attitude. After I got caught in 2 medical things in a two year period that are misunderstood both making me sick, I'm like you. Do what you need to do, have-atter.