Possible sjorgrens

[Nellies47]

Hi . I have,PBC and possible sjorgrens as per rheumatologist. I have joint pain and mucle pain. Numbness in lower arms and hands. Dry eyes and mouth, and now itchy painful ears. Waiting to see rheumatologist again re ears, saw ent and he says pain in ears isn't usually sjorgrens. Anyone have this Please.

[Jody1964]

Hi I have RA & Lupus I have had dry eyes for 4 years eye dr put plugs in my tear ducks and it helped but my eyes weren’t real dry but I started getting dry mouth a few months ago and it was awful I saw my primary dr first and she gave me a prescription that helped than I finally saw my Rhematologist she told me I had sjorgrens I was just miserable I couldn't sleep the medication eirther didn’t work or worked to well I’d wake up with. My shirt, pillow and sheet just soaked from saliva. On top of that 3 or 4 times a week I’d wake up with heavy legs and had to stay in bed. I do have the numbness and heavy ness in my arms also but it might be nerve damage I’ve had a lot of cervical and spin surgeries I have nerve testing this week, But since I started a gluten free diet it has gotten much better it’s been about 4 weeks I still get dry mouth but it’s a lot better I don’t have to take the medication anymore I break up a surgar free peppermint candy and stick a piece in my cheek. This all started after I got my first Covid vaccine so I didn’t get my second one. I don’t have the metallic taste but I do get this weird taste and smell at times. Make sure you go to the dentist, in just a few months I had 3 cavities and a crown my gums are residing with more decay so I now am going every 3 months for check up and cleaning. I hope you feel better soon.

[Nellies47 in reply to Jody1964]

Hi.Thank you for your reply. Sorry your having such a rough time. I saw rheumatologist last week. She feels that I have a connective tissue autoimmune disease, not sure if its lupus or sjorgrens or a mix of a few. I'm going for more tests. Emg nerve conduction studies, mri of face and head, have terrible ear pain , and a biopsy of salivary glands.

Fatigue is debilitating at 5he moment. I hoping I get some relief soon.

Take care.

Nelly

[Jody1964 in reply to Nellies47]

After reading about your symptoms and the test your having I am going through the same I’m having EMG test again I’ve had them before in the past and there not fun I go in 2 days for my arms than back again for my legs, I see my ENT in a few weeks to discuss the Silvia glads hopefully get a facial xray the weird thing is after 2 months of dealing with dry mouth it has gotten better I could sleep a lot better but I do still have bad days and nights. It is comforting to read about other people symptoms I thought I was going crazy and I’m always asking myself why why is this happening nobody else in my family but one aunt has any auto immune issues and will I pass this on to my children.

I’ve made appts with every specialist I can to get help and answers it’s so frustrating waiting to get in to see them waiting is not my cup of tea.

Do you ever wake up with heavy legs it use to be just my legs but my arms have started to it’s not everyday maybe once a week since I’ve started wearing compression socks I’ve seen cardiologist she felt my pulse on my feet says it’s good and blames it on Lupus and SS causing to much inflammation and there’s no treatment, but going bk in for an ultra sound of legs and treadmill test but some these DRs look at me like I’m crazy just frustrates me.

Keep us posted on your test results I hope you get answers and feel better soon take care. 🥰

[Nellies47 in reply to Jody1964]

Hi.Wow so similar. Sorry your struggling too. Yes the heavy legs and arms but not every day and yes some mornings I feel I have to drag my self down the stairs.

I use to run 10k no problem, recently I have to force myself around the house.

[Jody1964 in reply to Nellies47]

I was just searched heavy legs on this site and came across some interesting information seems it might be caused my cervical spine issues have you had and spine surgeries? I have C2-T1 fused and L4&5 so I’ll add that specialist to my list of doctors to see. Just a bit of information I’d share.

[Nellies47 in reply to Jody1964]

No spine fine had mri. Thank you

[harmony2]

Hi Nellies47 . I'm sorry for your difficult journey. I wrote something very long here and I am now wondering if I should have put so much detail. I realise I wish I knew at the onset what I know now. So I have written about a myriad of some of the symptoms I have experienced over the years. When I first was sent to the rheumatologist I got the impression, of it is just dry eyes and mouth and merely unpleasant but not very serious. That is some person's experience. Another 1/3 get serious flare-ups but are not impacted all the time. Another 1/3 have more extreme cases. I am in no way suggesting what category, if any, you fall in but I wish I had known not to be so concerned and weirded out with each new symptom. In hindsight I think I would have had less investigations because I left so many appointments with no answers. Not that I wanted to but I began to tell my friends that I got to play "stump the doctor" today. I was just trying to cope with some poor attempt at humour. So, if you don't wish to read about a somewhat hard journey then skip the rest of this since it is not my intention to discourage you or anyone who reads this. On the other hand, I wish I'd know there may be a lot more complexity to Sjogren's that what I first understood. And I wish I had known some more people who got the difficulty and confusion I felt along the way, when even doctors were saying they hadn't seen x, y or z before and didn't know what to tell me.

Please note: Everyone's Sjogren's journey is unique and this in no way predicts yours. Please forgive me if this is in any way unhelpful.

I got diagnosed with Undifferentiated Connective Tissue Disorder at first (almost 20 years ago); then Primary Sjogren's and Fibromyalgia were diagnosed when the rheumatologist had monitored me for a while and determined that it was not developing into Lupus--though I have ongoing monitoring, which include bloodwork to check that there is no sign of effects on my organs or other indicators of lymphoma or worsened inflammation. It has been a challenging journey in part because of what you have mentioned, that there are so many -- seemingly random, symptoms. I have seen lung specialist, endocrinologist (I showed up with viral thyroiditis and then permanent hypothroidism at about the same time as all of this started), nephrologist (kidney specialist), dr who does endoscopy (forget what that kind it), dermatologist, neurologist (re migraines and, separately, for nerve pain and odd and painful sensations), spinal specialists, rheumatologist, etc. So another reason it has been a challenging journey is because I would end up see specialist after specialist and often left in tears with, "hmm, that is not the usual presentation" but no explanations for my numerous unusual manifestations of symptoms. As you say, burning or pain in ears is not typical but some of us do have it. Mine is worsened by lying on or some sort of pressure on my ear that seems to shift the ear canal ever so slightly but I wouldn't be surprised if yours is different! [By the way, to use a dry ear bud makes discomfort worse for me. If I must insert something I have to put a little extremely-mild no allergen lotion or else just water on the earbud. This is because a dry earbud makes the irritation in the ear canal worse.]

Other symptoms to list a few: Itching skin. Bowel disruptions best described as years of Irritable Bowel Disease. Migraines. Nerve pain and odd sensations (e.g., ant bite sensation, stabbing pain, legs I cannot hold still but have been told it is not restless leg syndrome), tingling and sometimes numbness. Intermittent joint swelling and pain. soft tissue pain, hypermobile joints (which come out of joint and hyperextend connective tissue which makes me see starts and can have lingering pain from minutes to weeks), cognitive changes (less ability to plan, organise, be decisive, recall words, remember events and facts, and sometimes when my brain is particularly "foggy" even stringing a sentence together is difficult). Dry mouth, dry sinuses, dry ears, vaginal dryness, changes to skin which neither looks nor feels dry to the touch but is chronically itchy and a source of a lot of frustration (careful in using topical steroid cream because it thins you skin and after about 10 years some of my skin is so thin that a light scratch will cause bleeding). I'm pretty convinced that any system in our bodies which need moisture (yes, that is all of them) are affected by Sjogren's Syndrome; e.g. the digestive issues that are not well understood. I also think that just as our tears are now known to not have the correct ratios of normal composition (such as a much reduced or near absence of the lipid layer that keeps the tear film coating our eyes), moisture in other parts of our bodies may be altered. I also experience times of extreme sensory sensitivity to noises, odours, bright lights and visual stimuli, being jostled in busy places, vibrations and bouncing on journeys, etc. My skin reacts to all sorts of substances that never bothered it before; e.g., wet nose of a dog will make me very itchy; all sorts of cosmetics, lotions, detergents, soaps, metal (even earrings of gold and silver I can no longer wear), inks (e.g., newspaper), some dust (e.g., rough edge of cut cardboard), on and on.

I have learned to report new symptoms to my doctor but make a very succinct list and accept that it probably is related to Sjogren's although the etiology (root issues) are not well understood. Then the hard part is coping well -- in a way that doesn't feed depression and long-standing frustration, but also be healthy and grieve when further restrictions are the result of so many health concerns. Ugg, I think I've gone on too long.

Because of debilitating fatigue I don't get on here a lot but if you want to ask anything (ha ha you may not after this!!) I will eventually reply. A highly important coping mechanism for me is know I am not alone. Be in contact with people who "get it". It is a lifeline.

May God give you strength for your journey and hopefully it seems less complex and more straightforward after reading this. Everyone's Sjogren's journey is unique and this in no way predicts yours.

[Nellies47 in reply to harmony2]

Hi. Thank you so much for this. You have so much of what I have. I've been on the multiple Dr.s appointments for the past 2 years.last yr they thought I had M.S but PBC was diagnosed. , only last week rheumatologist diagnosed me with autoimmune connective tissue disease, and said my symptoms are not consistent with any one in particular. Had nerve conduction studies today(very painful) for numbness and pins and needles in my arms +hands and legs +feet. Fatigue and joint pain, dry eyes+ mouth and sinusitis is on going and I'm struggling to maintain my job as a public health nurse, I reduced my work to 3 day week last spring but I'm not sure I can maintain this. I also been diagnosed with facial migraine and IBS year ago.Yes my ear pain is also worse when I lie on my side. ENT doc very dismissive of my ear pain which is frustrating. Have been referred for a biopsy of my lip too.

So sorry you have had such a hard journey. I am grateful for your reply, like you it is supportive to know of others similar.

I also wonder if all the doc appointments are necessary, with the fatigue I'm finding it difficult to attend them , and they are expensive. Not sure if the treatment will be much different, I'm on plaquenil anyway.

I hope your coping OK now , some days I'm better able to pace myself and accept all this other days I just want to scream.

Take care and God bless 🙌

Nelly

[harmony2 in reply to Nellies47]

Nellies47 Wow. Yes. Lots of similarities. Some doctors don’t know what to think when it’s not a textbook case. To be fair, sometimes what we have truly isn’t evident. (Therefore no treatment is obvious.) Apparently my skin looks normal but wow does it itch! It’s definitely not normal. I, too, had to cut my hours of a job I loved. That helped me stay in work for another 7 years. This is NOT the result for most with Sjogren’s but now I am medically retired. Though it was necessary, that transition resulted in a major grieving process. It wasn’t my choice — as in, “oh, this will be easier” but my physical and cognitive abilities changed so much it literally wasn’t possible to keep working. So I really relate to your comments about acceptance and good pacing some days versus very sad, disappointed and/or frustrated other days. In my opinion these losses need both a grieving and learning process. I’m still learning! There’s so much adaptation to living in a limited body. Unwanted but essential adaptation. To “press through” just causes post-exertional malaise (PEM) so though I can sometimes keep going, it’s not wise. And I feel low not just physically as a result.

I’m sure your compassion for your patients is appreciated by some and you have a special calling to your work. I pray you are able to have wisdom in all your decisions and the financial provision you need. H

[Nellies47 in reply to harmony2]

Ah, thanks so much, I hope I do bring help and comfort to somebody. I am really struggling to work at moment. And yes it wouldn't be leaving my job for an easier life it would be cause I can't physically do it. I am hoping it's just a flare and I will improve, if not I'm not sure of the out come.

But I suppose quality of life is more important in the long run. Unfortunately my husband isn't as understanding about my illness and finds it hard to be supportive about my work difficulties at the moment.

So I have to persist for a little longer.

I know this is PBC fatigue and this autoimmune connective tissue disease too causing my symptoms.

And in a way its comforting to know there is a reason for all this, thank you again for your support. Do you miss your work

[harmony2 in reply to Nellies47]

Nellies47 Hi. Yes, I do miss my work. I really have had to work on my mindset that if I don't have my work I do not have purpose. Like I mentioned, I am still learning. But it involved (and continues to involve) examining my values. For example, I would say a person who is fully dependent on others for care is still a person of worth, has great value, etc. It also has been growth in acknowledging the ways I am still able to serve, though they are different. I'm genuinely sorry your husband is less understanding. He may be quite scared, though he may be unaware of his fear. I hope over time he can see your work ethic and because he knows your character he will see that you are not exaggerating, failing to "try harder" or other ways people try to figure out an illness that is invisible in many ways (to lay person and to doctors).

I had to look up PBC. Yes, sometimes as much as a diagnosis is not nice to hear, it can also bring some understanding and therefore relief. [ By the way, this looks interesting as a possible source of support since probably it is hard to know how to connect with people who "get" PBC: pbcfoundation.org.uk/ ]

How did you get that diagnosed?

[Nellies47 in reply to harmony2]

Hi.Thank you again.

I'm on the PBC foundation too, very help full too.

I got diagnosed when I had constant fatigue, weakness in legs. Had optic neuritis in 2018 and have family history of M.S so I was investigated for M.S . During that investigation my Liver function tests were abnormal and AMA positive, that autoimmune. So M.S ruled out thank God and diagnosed PBC.

Since that arthralgia and myalgia, numbness pins and needling hand feet and fatigue, then more recently dry eyes/mouth and ear pain....so that's were I am now.

Yes hope hubby will be more understanding, he doesn't understand the invisible symptoms well. Please God in time he will.

I agree we all have a purpose, and going to work isn't what life is about. I'm glad your coping OK.

Take care

[harmony2]

Nellies47 Thanks for sharing. (and amen to that prayer)