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Lupus V M.E?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by justy, Dec 20, 2011.

  1. justy

    justy Senior Member

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    When i was first ill, 17 years ago, i wondered if maybe i had Lupus - i didnt have a dx of M.E then, infact i only got it last year after having the mito test with Dr Myhill.

    What im interested in now is wehter it could be Lupus as opposed to M.E.
    I did have an ANA test (i think) last year - it was negative. I dont have unbearable pain, but i do get some joint pain and my knuckles on one hand have been swollen for two years and before this they swelled whenver i was more ill.. I do have longstanding involvment with my lungs and have had pleurisy and pneumonia more than once. I also have dry gritty eyes and lots of other eye problems including sudden loss of vision for short periods, blue flashes (all day long) severe eye pain - including when i touch them and move them around etc.

    I read these alternative criteria by Dr Hughes at St Thomas's hospital (world Lupus expert)

    http://www.lupus-support.org.uk/Crit.htm

    And apart from the actual tests i have this exact history he describes - growing pains, teenage migraine, agoraphobia, glandular fever, pr menstrual worsening etc.

    How can we know if we really have something else, when that something else is hard to diagnose as well.

    I also have had in the past two years tiny red spots on my cheeks and my nose - not the typical malar rash but i never had them before and they dont go away. I was always very pale and despite hardly ever gpoing outside i often have a very flushed complexion (BP not high)

    What to do about this in the UK? should i just come right out and ask my GP to test for it or play the old game of suggest the symptoms and let him think of it himself or try and find out privately or just give it up and accept i do have M.E.
    Im just so scared that they are missing something and im so very very very tired of being scik and being in pain and i HAVE HAD ENOUGH of not being listened to by doctors. They dont listen to your symptoms - if you have more than 2 or 3 they just switch off.
    Ill stop now before this turns into a rant.
    Justy

    Forgot to add, apart from the lungs it was the constant nose and mouth ulcers i had wehn very severley ill that was a red flag for lupus too and bruising and severe nose bleeds.
     
  2. undcvr

    undcvr Senior Member

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    I have had CFS/ME for almost 20 years. It started in my late teens. Supposedly about the time that autoimmune conditions would usually start too. Recently I self diagnosed myself with a kind of autoimmune condition not unlike lupus but one that doctors just haven't figured out that and what is causing my CFS. I am taking supplements for lupus, I have not looked back since. I have been getting better, I mean like crazy strangely better.
     
  3. justy

    justy Senior Member

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    Hi Undcvr, may i ask what autoimmune disease you feel you have? apart from CFS. Also what supps are you taking for it that are helping so much. If you dont want to say on here could you pm me please?

    Thanks, Justy.
    P.S glad you are feeling so much better - good news!
     
  4. Kina

    Kina Moderation Team Lead

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    Hi Justy, have you ever been assessed for Sjorgens.

    2 main symptoms: Dry eyes. Your eyes may burn, itch or feel gritty as if there's sand in them.
    Dry mouth. Your mouth may feel like it's full of cotton, making it difficult to swallow or speak.

    Some people with Sjogren's syndrome also experience one or more of the following:

    Joint pain, swelling and stiffness
    Swollen salivary glands particularly the set located behind your jaw and in front of your ears
    Skin rashes or dry skin
    Persistent dry cough
    Prolonged fatigue

    Some of your symptoms reminded me of Sjorgens as well as Lupus.

    Kina.
     
  5. rlc

    rlc Senior Member

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    Hi Justy, theres some good information on this site about Lupus that you might find useful http://www.lupuscanada.org/english/living/1000faces_sle1.html

    RE What to do about this in the UK? should i just come right out and ask my GP to test for it or play the old game of suggest the symptoms and let him think of it himself or try and find out privately or just give it up and accept i do have M.E.

    My view is never give a GP an excuse to do nothing, or rely on them to work things out by themselves, because the chances are far higher that they wont. I always print out relevant medical information and take it to doctors and tell them what I want testing for, and if they dont want to, they better have a bloody good reason or they get sacked, or I bypass them and go private. Theres some advice on these sites on how to prepare for and what to do at doctors visits which you may find useful http://www.webmd.com/cancer/features/get-right-diagnosis http://www.rightdiagnosis.com/diagnosis/steps-doctors-visit.htm http://www.mmhs.com/upload/docs/Quality/PatientSafetyDiagnosis.pdf

    If you havent had the likes of Lupus ruled out it should be just in case. On this page http://www.lupuscanada.org/english/living/1000faces_sle2.html it says

    The fourth step is to rule out other diseases which may have symptoms or test abnormalities in common with SLE such as rheumatoid arthritis, scleroderma, mixed connective tissue disease, Sjgren's syndrome, and many other ailments. It is as important to identify those who do not have SLE as it is to find those who do.
    So if your doctor is ruling out Lupus properly they should also rule out all those other diseases.

    Personally I dont think anyone should give up and accept an ME diagnosis, the likes of Dr Hyde finds about 75% of people are misdiagnosed and have other illnesses, it is just such a shame that it is so damned hard to find doctors who will do their job properly and rule out other diseases, I know it especially hard in the UK, thanks to the useless NHS and Wessely school propaganda, but keep trying to get everything ruled out, there is a chance you will be one of the lucky ones who finds that their really suffering from something that is treatable.

    All the best with your doctor Justy!!
     
  6. justy

    justy Senior Member

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    Thanks Rlc, i do appreciate your quest to ensure everyone is properly diagnosed and not misdiagnosed. I dont feel my diagnosis was a proper one, and whilst it most likely fits M.E (i took part in a research study questionnaire and was told i fit ALL the criteria they applied to me including ICC) i think it is possible i have something else - until one has PROPER and full testing how can they possibly know?

    Pam - although i have the eye problems i dont suffer from a dry mouth at all so dont know if this excludes me from a diagnosis of Sjorgens.
    The other complicating factor is i have terrible PEM and we are always led to believe this is hallmark for M.E, but i think people with other chronic conditions can feel terribly fatigued if they overdo it.
     
  7. merylg

    merylg Senior Member

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    Hi justy,

    Thanks for this thread! This topic is very much on my mind too as you know. Today was an exhausting day as I had my Short Synacthen Test & had to be at a hospital early in the morning (after a night of very little sleep). The nurses were really nice & kept a Dr standing by in case I chucked a vasovagal when they cannulated my arm, & gave me the synthetic ACTH via the cannula. I felt a little nauseous before the whole thing started & a bit spacey but all in all I was OK.

    I was also re-tested for Lupus & Sjogren's. Awaiting results.

    As I understand it "Sjogren's can occur alone OR in conjunction with other Autoimmune diseases, most commonly Systemic Lupus Erythematosis (SLE) and Rheumatoid Arthritis (RA)".

    http://www.lupus.org/webmodules/web...aboutintroduction.aspx?articleid=104&zoneid=9

    It's interesting, as I have some vague symptoms that seem to tie in with Lupus (as well as the more well-known symptoms).
    I have puffy knuckle joints but they are not painful (a couple of doctors have looked at my knuckles and gone "hmmm" which really isn't helpful to me!!!) but was enough for a Rheumy to write "She has puffy knuckle joints".
    I have always had sun sensitivity ( and sun & UV sensitivity is common in Lupus & can apparently cause a flare of the condition). Also my eyes have always been sensitive to sunlight, more so now. Always needing to wear sunnies! :cool:
    I have suffered migraines since a teenager (as did my mother).
    Fatigue is now extreme, as is brain-fog & cognitive issues. Agoraphobia is another weird symptom that has only become apparent now (and I am sure it is not well-known by people in general, that it IS associated with Lupus).
    Depression fluctuates & seems to coincide with flares.
    An onset of symptoms at menarche & a worsening at menopause (rarely discussed).
    Have had nasal ulcers & sometimes mouth ulcers.
    Have recently developed severe dry eyes & low eye pressures after taking Gabapentin.
    Get flares of severe lower cervical/upper thoracic spine pain like a sero-negative spondyloarthropathy (Rheumy).
    Get muscle and tendon pain mostly in upper arms & shoulders. Have FM tender points.
    Get all over muscle pain one day post-exertion. Get post-exertional malaise (PEM) (?Post Exertional Neuroimmune Exhaustion PENE).
    Don't have malar rash of Lupus, but sometimes have flushing in that pattern. All a bit weird!
    Had pneumonia a few years back & a first time seizure (that accompanied a high fever).

    Sometimes feel feverish for no apparent reason (No tender lymph nodes though).
    I get only slightly elevated C-Reactive Protein (CRP) but Erythrocyte Sedimentation Rate (ESR) is usually normal.
    Do get hair thinning in flairs.

    Lupus is also associated with Pleuritis, Pericarditis, Myocarditis & Mitral Valve Prolapse.
    I have mild mitral valve regurgitation. I have had some weird episodes of what felt like fluid around my heart ?pericardial effusion. Apart from this my heart has always checked out fine in numerous tests including ECG, stress echo, tests for Pulmonary Artery Hypertension, and Coronary Angiogram.
    I HAVE read that myocarditis is hard to diagnose.


    I have read that certain viruses are being studied in relation to Lupus & Sjogren's. The list was very similar to some implicated in CFS/ME which I thought was interesting. (I will try & find the reference to this).
    B cell lymphocytes seem to be involved in Lupus too.
    Rituximab has also been trialled in treating Lupus but a couple of patients got Progressive Multifocal Leucoencephalopathy (PML) :eek:
    Food for thought.
     
  8. justy

    justy Senior Member

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    Hi Meryl, you must be glad the synacthen test is out the way, how did it go? my doc last week tried to get my blood 4 times - was like a bruised pin cushion in the end!

    It seems we have some symptoms in common. Reading through the link Rlc posted above the description of the type of chest pain ios EXACTLY what i have experienced for many years, much worse when my health is overall worse. Its strange then when i described it to my lung specialist he didnt think anything of it - although i do now have scarring in my lungs from all the constant infections. I dont have much in the way of pain in joints but have the puffy knuckles too. I do get morning stiffness in ankles and all over as well as ankle swelling on both sides and general myalgia and aching.

    I would be interested to hear what others think about any possible similarities between the two illnesses, if as is suggested by the Norwegian study M.E is an autoimmune disease then it may explain some of the overlap, or i suppose it is possible there is an autoimmune subset OR that some have been misdiagnosed.
    Its a sad state of affairs when i would rather find out i had Lupus than have M.E
    Take care, Justy.
     
  9. Tristen

    Tristen Senior Member

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    I have some kind of autoimmune process happening, including most of the Sjogrens symptoms mentioned, and the bony nodules and other apparent autoimmune symptoms. Yet, all my autoimmune testing is negative, including for Sjogrens, Lupus, RA, etc.

    But I do hear that many with me/cfs test + for Sjogrens
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I know we keep looking at other illnesses but i wonder if these symptoms and autoimmune type responses are just me/cfs. I think Cheney has said in the past that one side of our immune system is over active/ the allergy side and the viral/infectious side is underactive. I dont know???
     
  11. drex13

    drex13 Senior Member

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    Yes. I think the immune system has two sides, TH1 and TH2. TH1 is underactive, TH2 is overactive. TH1 deals with viruses. I think this is close to being right.
     
  12. xrayspex

    xrayspex Senior Member

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    hey undcvr I would also like to know what supplements you are having luck with. I got diagnosed with sjogrens at end of summer after pushing my doc to test so I would be up for trying things to help autoimmune. The doctor has no new ideas, they did check my cortisol and wasnt bad enough for traditional treatment but an alternative doc I saw suggested trying a little rhodiola but it was too strong for me altho I might play with homeopathic doses of it later.
     
  13. merylg

    merylg Senior Member

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    Hi xrayspex,

    See http://forums.phoenixrising.me/showthread.php?13495-What-causes-sjogrens-syndrome/page2

    Retroviruses have been found in association with Sjogren's Syndrome and Human herpesviruses have been found in association with dry eye.

    So perhaps serum antibody viral testing would be worthwhile, with a view to treatments that target viruses and/or support the immune system.
    I am having severe dry eye problems as well as losing eye pressure :(
    Currently having tests for Lupus & Sjogren's.
    About to go back to my optometrist (who agreed it seems a systemic problem) for a referral to an opthalmologist :eek:
    From my own reading, the tear film can also be tested for viruses.
     
  14. justy

    justy Senior Member

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    Heaps - it could be that all the symptoms we are discussing are due to M.E and not other illnesses - or that M.E/CFS is over diagnosed or misdiagnosed and we do have something else. I keep thinking of Dr Byron Hydes figures for M.E misdiagnosis ( i think that 25% have another illness - my figures might be wrong)
    I suppose it is the desperation for treatment that keeps us looking to other diseases for answers.

    I have spent a bit of time on some Lupus boards to see if it seems familiar. Some of the symptoms are very familiar BUT the overall experience of the illness seems quite different to mine. I find people with M.E describe my experience the most closely. Still think i might see my GP in the new year and give him another poke re testing for Lupus/ Sjorgens.
     
  15. xchocoholic

    xchocoholic Senior Member

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    Hi justy,

    I'm confused .. I thought Dr Myhill and all other holistic practitioners believe that all chronic illnesses
    are from a sub par or leaky gut, nutritional deficiencies and hormone dis regulation.

    And the variation in symptoms is based on the variations in the items listed above plus genetics.

    So a diagnosis isn't important. All chronic illnesses overlap .. Getting to the root cause is the goal. For example,
    all celiacs are prone to a wide variety of chronic diseases but these vary from patient to patient.
    Once the digestive tract is damaged, chronic illness is bound to follow. Celiac disease isn.t
    the only form if gut disease ..

    So far, diet and supplements have eliminated most of my me/cfs symptoms. That's roughly 80% of my symptoms. But since
    I still have oh, pots and pem, I'm still couchbound. And I just have to whine about gluten cross
    contamination one more time .. Lol .. Even freakin nuts are contaminated. :eek:

    This is why dr wahls story is soooo important. She tried traditional
    treatments, then supplements only .. Then she realized the importance
    of diet.

    Tc .. X
     
  16. xrayspex

    xrayspex Senior Member

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    thanks for info merlyg
    well I just happened to go to an optometrist today who works in a university eye clinic. Found out that my eye flare up is a corneal abrasion! I had one before about 7 years ago and it hurt much worse, had to have an eye patch and be in dark doing nothing a few days. This time I have been functioning thru it as am pretty sure it happened like 2-4 weeks ago, have to look at my journal. Its on the mend, all she did was recommend thicker eye drops and to check back in couple weeks. said if its chronic then its called dystrophy. This doesnt sound good. I cant read as well out of that eye now, sometimes not at all. I told her I found out sjogrens but she didnt suggest any other viral testing or anything, I was asking her if she thougth I should rule out other AI stuff like lupus or RA or MS, she was like why not but would rather i go to my primary care guy I guess.

    for some reason only test my doc did was the ssb la ssa ro and I only tested positive for the ssb so that means sjogrens whereas I think lupus is usually positive to both. I am not sure if other ways to test lupus, if that rules it out for sure, I cant go in sun and do get rash on face but not really malar pattern. I havent had an ana lately but I know in past they never caught attention of anyone, its been a few years at least since had ana tested.

    so then tonight I got horrible pain flareup, I thought it must be allergic reaction to something she put in my eye at appt, she put some yellow dye stain in to look at my abrasion, it didnt dilate eye, anyway I got killer headache, jaw pain, nausea, tight chest etc it ruined my night. I called on call doc to see if could be reacting to something in dye he didnt thinkso but said go to er if you think its bad so eventually I did and they said must just be tension headache, since she didnt dilate they didnt feel the stain she used or whatever the drop was, its not known to cause a reaction. but if its a dye it could cause an immune response I would think according to info from like Alcat, the food allergy testing place Cheney uses. I felt stupid tho that I went in but I had calld a 2nd time and the nurse on call told me to go she said its good with fibro to document the things we react to, but unfortunately they didnt even consider it could have been the dye I reacted to, they just thought the pain in my eye caused a headache. i really wish our healthcare system was more savvy about MCS people.
     
  17. merylg

    merylg Senior Member

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    Hi xrayspex,

    Sorry you are having such an awful time! I just checked out orange fluorescein dye & it can cause hypersensitivity reactions. You can ask your optometrist for a copy of the Material Safety Data Sheet for the dye, or get the name of the product and look it up on-line.
    Corneal ulcer sounds painful, so sorry.

    I agree about healthcare systems in general not being very aware about MCS.
    I react to band-aid glues & the glues on those ECG contacts.
    I have delayed hypersensitivity reactions to most drugs.

    I just wrapped my Christmas presents & the wrapping paper & sticky tape made me feel ill :(
     
  18. xrayspex

    xrayspex Senior Member

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    oooh, I never paid attention to whether tape bothers me, interesting. I am not sensitve to everything but when I am sensitive watch out. thanks for that info on the dye, I just googled around now too and was seeing something about that as well, that the flourscein stuff bothers some, shouldnt the doc at urgent care know that if we can find it on google? geeesh. maybe its so rare they discount the possibility? I do not understand. unless that isnt what they used on me, maybe they used some magical reverse osmosis angel dew and it would never hurt a fly.
    it put me in a growly mood too if you can't tell ;)

    but I do appreciate your support
    happy hoidays and congrats on wrapping prezzies even tho it set ya back!
     
  19. xrayspex

    xrayspex Senior Member

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    so I finally talk to eye doc office today and they say no nothing should have bothered you that we put in your eye, but I press for the name and sure enough its fluorscein eye dye---so I have to tell them that some people do experience side effects from it. nurse said she didnt have time to look into it today but could try to find info next week. It doesnt matter now it already flared me, but just want it noted so dont use it again. I am not sure how they can check for abrasions without it though hmmmm

    anyway sorry to hijack thread. I am going to pc doctor too to ask him to more carefully rule out lupus, RA and MS etc to make sure its just sjogrens causing AI symptoms.
     
  20. justy

    justy Senior Member

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    Hi, im not sure what Dr Myhills ideas about ALL illnesses are, i guess you could be right about her ideas, but she is a GP and does prescribe drugs as well as looking more holistically. Her approach has helped me, but hasnt really shifted the underlying disease.
    For me a diagnosis IS important, Lupus can lead to death from heart and kidney problems if not monitored and treated properly, it is widespread inflammation in the body and im sure an integraqtive approach would help, but like for my lungs i DO need conventional medicines as well.

    X RAY - sorry to hear about your eyes and the dye problems - i turned down a brain CT scan recently because of the contrast dye - i have MCS, but not severely, but i never know what will affect me - sometimes its perfumes or tobacco, other times drugs or supplements. My sellotape made my lungs hurt last night from tearing it in my mouth - so often the medical people dont understand MCS at all!

    Last few days i have been feeling really ill again - have been on a general upward swing but now crashed down a bit again. I have sore and swollen ankles now ( both sides) and my lung with the fibrosis and scarring is threatening to become a nasty infection - green gunk this evening - luckily i always keep a broad spectrum anti biotic in the house, thats one area where Dr M disagreed with my NHS GP - she says i must take the antibiotic at the first sign of infection to stop further scarring, my GP always makes me wait until i am really ill and neat antibiotics and steroids. Have also upped my inhaled steroid which i hate doing because it upsets my adrenals etc. I cant believe that with my lung problems they dont think it could be something other than M.E - but then they also dont think there is anything wrong with my immune system (madness!)

    Hope you all have a good winter break, whatever you are doing - im finding it stressful allready and wish it could all be back to normal, but i will try and enjpoy!
    Wish i could have a massive glass of Rioja and a cigarette - biut those days are long behind me!
    Take care, Justy.xx
     

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