A question. A theory?
Posted , 8 users are following.
Has anybody wondered like me, about the Fibromyalgia - Sjögren's Syndrome bedfellows?
It seems that a number of people get a diagnosis of Fibromyalgia before (sometimes long before) they get their diagnosis of Sjögren's Syndrome (S.S).
However what if it is really S.S. all along.? What if for some, S.S. encompasses as part of its symptom manifestation these 'Fibro like' symptoms? We know the level of ignorance which seems to pervade the medical world about many aspects of S.S, and particularly regarding extra systemic involvement, so is it possible that science has not yet put it all together as part of the aggregate of symptoms?
It seems impossible that it could be so in 2017 but have you experienced people any ideas or thoughts on this?
1 like, 20 replies
elisabeth38130 Megheart
Posted
I've wondered that for a long time. About 25 years ago my optician suggested to me that I had Sjogies. About 23 years ago starting getting pains in joints, went to GP, had a blood test and was told that a had a form of RA. My rheumatologist though has only JUST decided that I actually also have Sjogies.
Megheart elisabeth38130
Posted
They're not fast are they?
Actually the number of times opticians or opthalmologists are ahead of the game in suspecting S.S is quite amazing.
Tumtum1963 Megheart
Posted
Others are those like me whom, despite dry eyes and poor teeth, were told that my SS was mild secondary to RA. I knew as soon as I read about Sjogrens that this was my main disease but, once on RA meds and steroids, my Schirmers and saliva flow were too normal for Sjogrens to be diagnosed. This only changed once I was found to have no erosive damage and taken off all meds with wait and watch approach. Dentists and Opticians said my teeth and eyes weren't bad enough, neurologist said small fibre neuropathy was idiopathic/ "functional" despite spinal fluid showing a systemic disease was occurring.
Fought my way back into rheumatology in a new hospital - ANA turned positive and lip biopsy 100% for Sjogrens - now thought to be primary. For some the SS presents very much like RA and MS - not as very dry eyes or mouth at first - although they are pretty severe now, as they were when I was a child. These people are very often seronegative (i.e. lip biopsy positive).
deidra40034 Megheart
Posted
Hi Megheart,
?Anything is possible, and would not surprise me! My SS is my primary, then came everything else, I also have RA, Lupus, as well as fibro now too. My SS went inside, caused havoc with my adrenals, and kidneys, which havoc with my BP, then my liver, intestines and stomach. Also have peripheral neuropathy in both of my feet and lower legs, and just had an awful flare up of my left foot. Had to have ultra sounds of both feet, and they saw the inflamation in the left foot, so had to up my dosage of imuran. It's like living on a roller coaster daily!! My immune system is so compromised, I have had the flu twice in a row, and it's trying to fight the SS issues, and the flu, I feel like a mess, and I am so tired all the time. I swear, it's one thing after another, it really gets to me sometimes!! But, we have to keep going, I wish they could find some way to help us!!
Megheart deidra40034
Posted
Sorry to hear that things are so tough for you at the moment, Deidra. Certainly having crucial organs affected really makes it quite a dangerous condition for some.....yet SS is often trivialised.
Although SS has really no individualised specific treatment per sé, it is necesary and helpful, as you know, to treat the allied conditions which arise as a result of/or part of, SS. This way at least one can have a measure of relief. I'm very thankful that each of my major 'symptom/conditions' have been adequately treated.
Strange though how SS produces a rolling wave of various symptoms at various times. For me at the moment it is musculoskeletal - one thing after another. Other times it may be G.I.or neuropathic or pulmonary etc😀 as you seem to be finding.
That's another mystery of SS.
Tumtum1963 Megheart
Posted
I have been asking myself and others this exact question Megheart. My conclusion is so far just the same as yours.
I have much pain, originally diagnosed as RA, now pSS. I know some of it is tendinitis and have been told that much of it is small fibre neuropathy. No doctor has ever told me that it's Fibro yet. But now my rediagnosis has been histologically confirmed I think they probably will. I feel very resistant to this idea that my pain is Fibro because it doesn't correspond with the criteria, I don't get headaches, my IBS-C is non painful and I don't feel pain in shoulders and am not depressed.
I'm suffering from fatigue but this is Sjögren's not Fibro - because my eyes are so dry and my mouth is so sore all the time and I'm dealing with more and more fall out from longstanding SFN so my balance has been compromised - which is very tiring in itself. It's hard work for our bodies dealing with an autoimmune process constantly of course. Why wouldn't we be whacked out?!
Someone posted on the Sjögren's World Forum attaching a link to new research on chronic pain of pSS. Fibro barely gets a mention but neuropathy is at the heart of this pain. The main differential they were looking at was seropositive and seronegative pain. Seronegative = lip biopsy positive which I feel to be important. Diabetic neuropathy isn't dismissed as Fibromyalgia so why is the neuropathic pain of Sjögren's not seen as an intrinsic characteristic of the disease as well?
I also feel that it's high time that diagnostic criteria were tmore respected and Sjogrens was less associated with more benign pain. They can't at it's benign if they haven't understood the mechanisms yet. It's important that it's a less woolly diagnosis in doctor's minds, because only then will the chronic pain be researched further through proper clinical trials and more targeted treatments become available at last.
Megheart Tumtum1963
Posted
Absolutely agree regarding the intrinsic nature of the pain or in fact any of the other associated symptoms which seem to be repeated over and over again in Sjögrens patients.
When I was being diagnosed with peripheral neuropathy, then gastroparesis, then bronchiectasis, fibromyalgia etc all within a six month period I KNEW that these were not disparate diagnoses. I knew they were under one umbrella so to speak. Hats off at least to the specialists I saw as individually two of them did tests for SS which were all negative at that time. A lip biopsy was not offered.
So obviously a big issue is the seronegative status that many patients express. In my case I suppose the doctors were on the ball regarding suspicion of causation but the negative results deflected them for ongoing management.
I guess subsequently I did receive excellent care for each of the manifesting major symptoms (or what they though were stand-alone diagnoses).
So there are two major issues in SS. management:
-The first is more sensitive and specific testing, which reveals the true SS status much earlier than the current ANA's and Anti Ro's and La etc.
-The second is targeted and specific treatment for Sjögren's Syndrome.
rhoadsclan5 Megheart
Posted
I have only been diagnosed with Primary Sjogrens Syndome. Oddly, my dry eyes have improved dramatically but today I am having a flare up again of aches and pains, stiffness, fatigue and hot and cold flashes. So many of these autoimmune symptoms overlap. Sometimes I wonder if the recurring symptoms may be another autoimmune disease brewing. I am having blood pressure issues and unable to handle any measure of stress. I have had to go part time on my job and wondering now if I'm even going to be able to work at all. Don't know if I can blame this on Sjogrens but I have a feeling I can.
Tumtum1963 rhoadsclan5
Posted
Yes we shpukd all stop saying "only" about primary Sjögren's I feel. In about 5-10 years time I suspect it will be up there with the others and maybe at last we will be able to look our doctors in the eye and say "this is what Sjögren's is doing to me - please can you help me?" rather than trying to find other diseases to fit our symptoms to all the time.
rhoadsclan5 Tumtum1963
Posted
We need more doctors that specialize in nothing other than autommune disorders. I have a Rheumatologist that I went to but didn't really have the need to continue regular follow up visits due to the fact that I don't need meds for pain and my blood work is stable for now. I went to a cardiologist for my stroke level blood pressure (I wonder if Sjogrens related) and was told that there are so many autoimmune diseases cropping up and they are so new that the doctors can't keep up with them.
deidra40034 rhoadsclan5
Posted
Hi rhoadsclan5, This is for all of us that have high blood pressure, I worry for all of you! I was finally sent to a kidney specialist because of my high bp. One time my bp would be normal in the doctor office, then another time it would be so sky high they were worried I was going to have a stroke. Then they wanted me to monitor at home, it was all over the place. I was beginning to think they thought I was nuts. Finally they had me on a twenty four hour moniter, that took my bp every 15 minutes. When they read the results, they were shocked. I finally felt relieved, they finally believed me!! That is when they sent me to the kidney specialist. As it turned out, my adrenals were being affected by my SS...btw...my kidney doc was very well versed in SS!! The adrenals affected my kidneys, which of course affect our heart and bp!! I was in kidney failure! It has taken nearly a year, but with adjusting my bp meds, and adding meds to regulate my adrenals and kidneys, I am finally on the road to healing, and my bp is running normal...still have to be on bp meds, but much lower, as I do have a naturally high bp...due to family inheritance, BUT, it is stable, and not jumping all over the place anymore!! I urge those of you with crazy high bp to at least go be checked by a kidney specialist, to make sure your adrenals and kidney functions are working properly, believe me, you don't want to end up in the situation I was in!! As SS IS what caused my problem directly. This darn SS can and does go inside to our organs, it has also hit my liver, so please be checked, don't ignore it!! I don't want to see you have a stroke, or go into kidney failure, it is not a good place to be in, and like me, if you wait too long, you might not be as lucky as me, I have a great doctor, and luckily he knows a lot about SS, thank God!! He has been working his tail off to get me well!!!
?I really do wish you all good luck!!
Tumtum1963 deidra40034
Posted
I'm on a kidney transplant rejection drug called Mycophenolate for my pSS. I have high BP that goes up and down like yours. I take Losartan for it and also get my blood regularly monitored. My eGFR is always okay and my liver function tests are alright too.
So not all people with SS and high BP have kidney or liver disease. They should have been testing your renal bloods to monitor your SS. Everyone's SS is different. Mine affects my small nerve fibres everywhere and my blood vessels rather than my kidneys or liver. I also have small vessel disease of the brain but fortunately it's not progressing.
deidra40034 Tumtum1963
Posted
Hi Tumtum1963,
?I do get regular blood work, knew about the liver issue, but didn't know about the kidney issue. I'm on Sprironolactone for my kidney issues, and my kidney doc has had to adjust my bp meds, lower one, up another, a few times to get things right. Finally got everything right, but taken nearly a year. I'm still considered in "accute" kidney failure at the moment, but no longer in danger like I was in the beginning of the year. And my bp has leveled out, no more crazy high one minute, and crazy low the next.
?I know not everyone with SS will have this, I just worry aobut those with super high bp will ignore it, and "could" end up like us. I'd just like to see them be checked out, and be ok, than not. What I've, and I am sure you as well, have been through with this, has been hell, just don't want others to have to go through it too. I have peripheral neuropathy in both of my feet and lower legs, and always off balance too. I walk with a cane, as I often can't feel where my feet are, has kept me off the ground many times! lol Sometimes I just have to laugh at myself...have to keep saine some way, so my husband and I use humor!! I'm very lucky to have a wonderful understanding husband!! We've been married going on 39 years now, and he is still hanging in here with me, and he can still make me laugh, thankfully!!
rhoadsclan5 deidra40034
Posted
I'm sorry SS has taken you down this road. Glad you have a doctor familiar with SS. You've given me some valuable information and I will make an appointment and make sure I'm not in danger. I had a CAT scan on my kidney function and adrenal glad only to get the result back from my kidney scan. My do your is not about to find the other report. I wondered if my bp problem may involve the adrenal gland. Ummmm..I will check on that.
Megheart rhoadsclan5
Posted
I think that should be the goal for the future. After all there are Immunologist's and Hepatologists, so the field of autoimmune conditions seems to be any bit as broad as them.
Perhaps I don't understand the purview of a Rheumatologist very well but it has always struck me as strange having to see a Rheumatologist for conditions that affect so many systems, eg. neurological, gastrointestinal, renal etc.
Tumtum1963 deidra40034
Posted
Yes I've had same proprioception issues as you too because of loss of sensation everywhere. I am finding that I've needed the cane much less since taking Mycophenolate. It might be worth asking your nephrologist about this as it's a kidney disease drug first and foremost, but might help with the neuropathy too?