Venus Williams Has Sjogren's Syndrome

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Aug 31, 2011.

  1. Mikie

    Mikie Moderator

    She withdrew from the US Open due to fatigue and pain. Until I got this, I didn't realize that SS causes extreme fatigue and pain, in addition to dry eyes, dry hair, dry mouth, dry skin, and dry everything. SS is an autoimmune illness and it isn't uncommon for those of us with CFIDS/ME or FMS to pick up autoimmune conditions along the way.

    I feel bad for her and pray she can get back to tennis soon. I also hope the publicity helps shed some light on immune and autoimmune illnesses for those of us who suffer away from the limelight. We really need high-profile celebs to speak out.

    Love, Mikie
  2. Yes I saw that too on GMA! I also didn't realize sjogrens had all those symptoms as I had a friend yrs ago have it and all she said was dry mouth and eyes. I listened to the program as I was hoping (no offense) that maybe she had fibro and it would help us that suffer with it, like you said we need someone to step up and speak out for us.
  3. joanierav

    joanierav Member

    hi, im skeptical. i immediately thought cfs/fibro. the celebrities like to keep this a secret. maybe because they are afraid they wont get hired or whatever. it is annoying, because we do need all the advocates we can get. i will give her the benefit of the doubt however.

    love, joanie
  4. Mikie

    Mikie Moderator

    Is that she probably does have CFIDS/ME and/or FMS along with the Sjogren's. These other conditions may not have been diagnosed by her docs or, because there can be such an overlap of symptoms with these conditions, she may not have been completely diagnosed. The thing about SS is that the dry eye and dry mouth are pretty unique and make it easier to diagnose tentatively than other conditions like ours. Like with Lupus, MS, and a whole host of other illnesses, SS can take more than six years to diagnose, especially if the ANA comes back neg. I have been tentatively diagnosed with SS but my ANA is neg. There is a new eye test which reveals the unusual type of dry eye associated with SS which I have. My tests did reveal a lot of inflammation in my body. As I mentioned, I never realized that the pain and fatigue could be so severe with SS. Perhaps not everyone with it has the pain and fatigue but evidently she does. Also, perhaps she had a pos. ANA.

    I had healed my CFIDS/ME and FMS to the point that I could work part time until the SS hit. The fatigue was about as severe as when my CFIDS/ME got so bad. I had to quit my part-time job but I decided never again to push myself until I was bedridden again. I am not on steroids but am trying to build myself up to the point that I can get the peptide injections which have been used in Europe for 35 yrs. with a high degree of success. They have no side effects but are not approved by the FDA so I will have to pay for them myself.

    Love, Mikie
  5. Mikie

    Mikie Moderator

    She evidently has a more severe case of SS. I still think she likely also has CFIDS/ME and possibly FMS. These illnesses so often travel together and the overlap makes it difficult to separate them. It's actually easier to diagnose SS because of the hallmark dry eyes and mouth, even when one does not have a pos. ANA. FMS and CFIDS/ME are often what's left after everything else has been eliminated. I think that's why so many with Lyme are misdiagnosed.

    This is why I'm such a big proponent of using antibiotics to try to treat what ails us. Lyme and mycoplasmas respond to them. They are also being used to treat RA. The Roadback Foundation has a lot of info on this. They aren't even sure why ABX work. Could it be that many of our illnesses are triggered by infections, especially in genetically-predisposed people? I also had to take antivirals as I seemed to have a chronic viiral infection, like from the Herpes Family.

    If researchers could make a big breakthrough in any one of these illnesses, I think it would lead to real progress in all these illnesses. Let's hope.

    Love, Mikie
  6. simonedb

    simonedb Member

    sjogrens is why I was posting the other day about my ssb/la antibody, I found the American-euro consensus classification criteria for sjogrens and it would seem to me that I meet all the criteria, dry eyes, dry mouth, ocular: positive schirmer, positive anti-ssb/la----for a primary dx one must meet 4 of the 6 criteria and i have the 5 above and the 6th one the abnormal salivary flow test-I never had it done but doesnt sound like i need to.

    So I don't know why, would there be any reason not to give me the dx? I saw exclusionary reasons such as if on anitcholnergenic meds but I didnt have any of the exclusionary stuff. I don't know why any physician wouldnt have looked into this for me esp since I had the positive schirmers like 5 years ago with photophobia and eye pain from sun I got that summer (after trying provigil, it worsened eye symptoms by far) and I also had a spontaneous corneal abrasion in 04 and eye doc told me to use drops all day from then on to prevent in future...I just don't get why anyone wouldnt have tried to connect the dots then. I think its partially cus once you have fm/cfs dx they stop caring or looking for other things. but its a validation for me to acknowledge the autoimmune component, it doesnt seem like a typical fm/cfs symptom to be likea complete vampire and have to avoid sun and heat like the plague until it gets below 68.

    I am going to see a rheumatologist about it, it helps explain a lot to get the dx, my inability to be in sun and getting rashes from sun, the dry everything etc and maybe my pain and fatigue too altho I think I have m.e. as well since positive xmrv etc
    [This Message was Edited on 09/02/2011]
  7. Mikie

    Mikie Moderator

    My new PCP is very knowledgable of our illnesses. He was suprised that the one test which showed such a high level of inflammation was never done by my former nurse/practitioner nor the doc who supervised her. I told him I didn't know but figured it was either ignorance or lack of caring. I think these two reasons are rampant in the medical community.

    There is actually a newer test for dry eye which can confirm whether the dry eye is of the type with oil glands which are not producing oil, a hallmark of SS. It was my eye doc who caught this. If one has an osmolarity (not sure I spelled this correctly) of 316 or higher, it is one of the markers for SS. Mine is 311 so it's not officially SS according to the requirements but it is high enough to be suspicious. When one adds in the other symptoms, one can make a tentative diagnosis.

    Despite the bone-crushing exhaustion, dry eyes and dry mouth (pain is a given) I don't qualify for a definite diagnoses. With my current doc, it doesn't much matter because he uses the peptide injections to treat all these conditions. When I am feeling a bit better, I will try them. If they don't work, I will not use steroids unless it gets to where I absolutely have to. I had a bad flare of SS a year ago and then, about a month ago, had a flare of what I think is interstitial cystitis. Both these seem to be lightening up and I'm grateful for that. So, at this point, I have things fairly well under control. I've been running a slight temperature so can't get the injections until it's back to normal. A couple of courses of ABX did help and might even be responsible for my newer conditions' improving.

    I don't know why your doc is reluctant to diagnose. It's not that unusual for docs to be hesitant to diagnose any of these conditions. I think it's because what ails us isn't well understood. Heck, some docs don't even believe that CFIDS/ME nor FMS are real. It's frustrating. I'm sorry because I know that a diagnosis validates our symptoms and how they make us feel. I hope the rheumy can help you. Please let us know how the doc visit goes and what he has to say. Good luck.

    Love, Mikie
  8. simonedb

    simonedb Member

    thanks Mikie for info and support

    hmmm well then if they do the new eye test and I dont have that one then maybe they won't diagnose, I just want confirmation of auto immune because I don't know many people in my area who are as intolerant to heat and sun as I no matter what their age or health is, bizarre

    I think because so many systems gets symptoms the primary docs get burnt out and its just easier to say its fibro and leave it at that

    interestingly I was given some sort of steroid inhaler briefly when had bad cold or flu or something like 10 years ago and I felt closer to normal on it energywise and told my doc at the time and he said he would be ok with me taking it regular and renewed prescrip, I cant recall how long I used it, not that long, weeks maybe, but then I started to feel liek those guys with roid rage, hateful and argumentative so I went off of it

    then I tried flonase 2 years ago and it felt magical for a couple days, again like I was more complete,improved energy and concentration, it was like a missing link, and then shortly it turned into an awful thing like crack cocaine or something, felt sort of nuts and manic and angry so had to go off that too

    my point is I don't see how I could ever do any steroidal tx for any possible autoimmune if a little bit of flonase makes me nuts. I don't understand my friends who take flonase all the time for years and don't think a thing of it, what the heck is my deal! mcs is the worst, limits options.

    mostly worried about this new symptom that feels like asthma and congestive heart failure, came on in last few weeks to where not only do I get the normal breathlessness/o2 hunger and need to lie down after upright for a number of hours, this new thing comes on anytime and in the prone position when at rest, breath feels hot and feels like cannot breathe in deep like lungs compromised, had an ekg, chest xray and spirometry and doc didnt feel they explained whats wrong but see a cardiologist next week.....I wonder if autoimmune could tie into that or if my heart is getting worse. the one tiem I consulted with cheney he empahasized how much he thinks slow heart failure is a deal for cfs folks.
  9. CelticLadee

    CelticLadee New Member

    It was interesting to read about Ms. Williams having S.S. I thought of you immediately Mikie. Was wondering how you were doing so came here to check on ya. ;) You have had a tough row to hoe and hopefully you will soon have much better days.

    I have horrid dry eyes at times. Presently I get a reddish patch of irritation on the white of my eyes. Use to just get almost totally blood shot eyes but still do get burning, sore and always been so sensitive to light. I have overactive saliva glands so don't think I have S.S. But I have been fighting persistent C. pneumonia which causes such eye symptoms as well as many that Simonedb referred to having. IE. The breathlessness, air hunger and heart symptoms I did have have improved greatly on the Wheldon Protocol. We all are such strange mix of pathogens running amok. Like you I have herpes issues as well with EBV and HHV6 but for me they are secondary to the Cpn. Seems the daily Lauricidin is helping keep those back for now.

    I am developing the white patches in my skin called vitilago I believe. The newest ones on the back of my hand along with older one on neck area sunburn quickly bright red so that is how I first found them. Ouch. lol So anyway, I believe this is an auto immune disease. You had mentioned to us in the past so many of us end up with that so was strickened by it. Told my husband that you had said that! I do find it humorous that often times you tell me things my physicians neglected to tell me. Although now I have a wonderful MD much more thorough. Yay!

    I was wondering Mikie if you could specifically tell me what the test/tests you had done for inflammation? I may have missed it in my reading. Other than the ANA for S.S. I did not note it/them. My MD is willing to run any test I request so I am fortunate. I just need to find out the name of them. ;-) It is well worth it as so often I find out another area that needs worked on so to speak. Like you I am a work in progress. lol Getting older makes it more difficult for sure but I feel better than when I was in the 50's so guess I must be doing something right. Just hope I can maintain it as our illness can be so fluid.

    Hope you can get that fever gone so you can try the peptide treatment. I am keeping you in my prayers for great success with it. Take care. Thanks for all your help now and over the years. Bless you!

  10. Mikie

    Mikie Moderator

    Simonedb, I think having respiratory and cardiac symptoms is something that should be checked into. At one point, some years back, I had heart palpitations. I had a complete cardio workup and passed just fine. I have found that taking my BP meds, my thyroid and my hormone-replacement meds every day keeps the palpitations at bay. When I had knee surgery and was going over my meds with a seasoned nurse, I told her about this. She said that it is important to make sure all our hormones are in balance. She said I had obviously found that balance.

    Dee, the only tests I had were the sed rate, which was in the "normal" range but higher than usual for me; the ANA; and when when I changed docs, the CRP. It was the CRP which was sky high, surprising us both. We thought it strange that only one of the three tests was so high. Still, with Sjogren's, it can take years to get a pos. ANA. I know that there are more sophisticated tests but this doc really isn't interested in getting an abslute diagnosis as much as he is in trying the injections. When diagnosing some of these illnesses, one has to use the "if it looks like a duck and quacks like a duck..." assumption and then try treating empirically. I'm a big fan of empirical treatment as long as the risks are minimal. I'm in a good HMO/PPO plan but it doesn't pay for much more than the usual tests unless the usual tests and symptoms are pretty dire. Still, my docs and I have made good progress treating on the cheap.

    Love, Mikie

    My eye doc has me on two capsules of pharmaceutical-grade omega 3 fish oil capsules. I bought the Ocean brand from the pharmacy at my supermarket. It's sold OTC. It's cheaper than the one I originally bought from him. I am supposed to put very hot wet packs on my eyes twice a day and then massage the eyelids, upper and lower. I've had problems with the heat where I had laser treatmnts under my eyes so cannot use the very hot heat packs. This is supposed to help keep the oil glands in the eyelids running better.
  11. CelticLadee

    CelticLadee New Member

    I appreciate you getting back to me about those tests. I do believe I have had those but will check my records to be sure. I like to keep on top of such things myself. I'm with you on empirical treatment. This concept has kept me out of deeper waters of trouble I believe.
    Glad you shared how you help keep the oil glands in the eyelids running better. I often use a warm wash cloth for relief so will add your measures to the mix now. I do take two caps of krill oil daily also.
    Mikie feel better soon and thanks again. ~Dee
  12. Marta608

    Marta608 Member

    I'm so sorry to hear that. A friend recently asked me if I thought she had CFS/FM. I told her the same thing, Mikie, about us needing a spokesperson. I'm sure getting some help will come first for her.

    Also, I call your attention to the thread I just posted.

  13. Mikie

    Mikie Moderator

    Dee, just don't rub too hard. I got a litle over zealous and gave myself two black eyes in the beginning. BTW, it isn't just up against the lashes. Massage out on top to where the eyelid creases and below to where you feel the bone of the eye socket.

    Marta, I'll check your post. Thank you.

    Love, Mikie
  14. CelticLadee

    CelticLadee New Member

    Will do, I don't want to end up with "raccoon eyes". lol
  15. Mikie

    Mikie Moderator

    Puddle, thank you for the info. I knew there were more sensitive tests but never having had a pos. ANA, I don't know what they are. I didn't realize that there were people with pos. ANA's who do not have autoimmune illnesses. Again, thanks for the good info.

    Dee, if you put a wet wash cloth into the microwave and also put a rice sock into the microwave, you can put the cloth directly on the skin and put the sock on top of it. That helps keep the heat in the pack without having to keep jumping up and reheating it.

    Love, Mikie
  16. CelticLadee

    CelticLadee New Member

    Do you use any eye drops? I have been using Similasan dry eye relief drops as needed as recommended by my eye doc.

    I agree that was interesting about the ANA test! It must not be reliable then whether it is negative or positive if that is the case. So it must be like many other tests we have done. I suppose it must need the clinical evaluation and maybe some other tests to back it up then.

    Presently I am trying to figure out what testing I need for my neuropathy. Been wondering if auto-immune related or infection related or structural as in spine adjustment needed.

    A few years ago it started in the ball of my left foot but now has spread up the back of my left leg. This leg has been problematic since getting sick never before then. Circulation also involved as varicose veins erupted above & below knee on inside of leg.

    One MD said perhaps it is my sciatia nerve but not so sure about that.

    I know my antibiotic treatment worsens it at times (herxing) and walking or being on my feet more often can also increase the numbing, tingling pain. The Cpn may be behind the symptom I'm thinking but not positive about anything. Always speculating. ;)

    Cpn does block arteries but so far I think I just have some blocked capillaries and the varicose veins. Wondering what you would do and if you have any knowledge about such things? Trying to figure out what to do so any tip you may offer would be received with gratitude.

    I want to start short walks this fall for my exercise now that I am feeling stronger. But this is problematic with my neuropathy flaring up.

    I do have a doc appt. next week so if anyone can suggest some ideas for me to present as far as testing to hopefully get to the bottom of this I would really appreciate it. Hope I'm not asking too much. But I find the folks here are very experienced and helpful so hoping for some good ideas. TIA

    Blessings. ~Dee
  17. Mikie

    Mikie Moderator

    Since my dry eye isn't uncomfortable, doesn't hurt nor feel gritty, my doc said I didn't need the drops unless I feel I want them. The only thing I hate is that I can no longer wear my contacts. Otherwise, the fish oil and massage is keeping this tolerable. Also, the symptoms of the SS let up and flare again.

    My Mom had periferal neuopathy and she found that sitting on the side of the bed before she got up and kicking her legs up and down helped control the tingling, numbness and pain. She and her best friend would go over to the pool and walk in the shallow end which also helped.

    Good luck to you. Like most of us, you have lots to deal with and I know how hard it is.

    Love, Mikie
  18. Mikie

    Mikie Moderator

    I had the ANA when I was seeing Nurse Ratchet and she was reluctant to even do that. Now, I am seeing a good doc who is very knowledgable in our illnesses but he isn't all that interested in specific diagnoses beacuse he uses the peptide injections. The same serum will work for CFIDS/ME, FMS and autoimmune illnesses. I'm just waiting for my health to improve enough so that I can try the injections. If they do not work for me, we will likely do more testing.

    It's interesting how many people have both immune and autoimmune conditions. I wonder which comes first. The autoimmune can come on seemingly instantly or so slowly that one doesn't notice for years. Do the autoimmune conditions lead to the immune or vice-versa? Or, can either be true? My Sjogren's symptoms came on over about two years but I've been suffering from CFIDS/ME for 21 years and FMS for 11. I attributed my dry mouth to the blood pressure meds which contain a diuretic. Then, my eye doc did the test which revealed the type of dry eye I have.

    I see my doc in Nov. for a six-month followup and will discuss whether or not I'm well enough for the injections. I hope so. I'm getting along so so with the SS symptoms but the fatigue is overwhelming.

    Thanks for your input. I also believe there is a lot of misdiagnosing or diagnosing one condition and missing others. With so much overlap of symptoms, it isn't easy to diagnose. The average time to diagnose SS is 6 1/2 years. I know people with MS and Lupus who waited years for a diagnosis.

    Love, Mikie
  19. Puddleglum

    Puddleglum New Member

    I was thinking...since you have the diagnosis of might want to have a more in depth panel of blood work, depending on your symptoms.

    I am sorry I cant remember the symptoms of Sjogrens...

    Could your dr. look at anti-double stranded DNA, RNP (antibodies), C3& C4, and of course the SED & creatine. Check your urine for protein...liver & kidney check & WBC? Just to make sure your body is not making antibodies in response to another auto-immune disease.

    Do you have thryoid disease too? I cant remember. I have Hashimoto's along w/MCTD & possible Lupus.

  20. Mikie

    Mikie Moderator

    Unfortunately, my ins. will not pay for further testing unless the ANA is pos. It's a Medicare Advantage HMO/PPO. Without a pos. ANA all I can get is a "tentative" diagnoses of SS. Still, because of the type of dry eye, it is SS. There isn't much one can do to treat it anyway and I don't want steroids. If I can get the injections, and they work, it would be the best outcome.

    With Sjogren's, the most noticibe symptoms are dry eyes, dry mouth and fatigue, at least, for me. The symptoms come and go but the fatigue seems to stay with me.

    Yes, I am hypothyroid but not much. The doc says the shot should address that too. I also now appear to have interstitial cystitis with symptoms which come and go. Basically, I'm falling apart :)

    Thanks for your input. I appreciate it.

    Love, Mikie

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