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Sjögren’s with anxiety plus virus, pulmonary hypertension or underlying asthma?

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Tumtum1963
Tumtum1963

I’m trying not to over think here but not succeeding! 

I have had tremors so subtle that I didn’t know them to be causing this strange limb fatigue, trouble standing, feeling of imbalance until they have made themselves very known to me over the past few weeks. Now I feel like there’s permanent earthquake across  Scotland all the time. 

I have been blaming this and twitches and just about everything on small fibre neuropathy. But I have read up about tremors and twitches, ataxia and balance disorders and it clearly states on all the info I read, that only large fibre involvement can cause this. And my neurologist (who clearly despises small fibre neuropathy as a minor player  and me for making such a fuss about it!) says I definitely don’t have large fibre involvement. 

These all body fine tremors may be benign and could be due to my having been unwell with a cold virus in January. They could also be a new manifestation of severe anxiety. But it would make more sense to me if they were part of my Sjögren’s because I’ve had them progressing for so long and I don’t think I’ve been anxious for eight years.

The other thing I wanted to ask about is this: dry throat with horrible cough- feeling of sinuses dry but my throat will grab at any moisture it can get hold of including nose bleeds and sweet tasting semi clear white gunk. 

I’ve been given a ventolin inhaler and am on day 1 steroid free after a 5 day course for probable post viral asthma.

However, due up a mix of pulsatile Tinnitus, being taken off Mycophenolate (after a year) a few days ago and having a real horror that they might be missing atherosclerosis which killed my mum, or pulmanory hypertension - which I believe can accompany Sjögren’s (lip biopsy) and Scleroderma (I have the right ANA pattern).  

I also have been getting pulsatile Tinnitus and waking all through the night with cough or to try and clear the horrible sweet glue paste at back of throat that stops me from speaking of drinking without having to throat clear. I know this can be part of the disease but nevertheless it’s causing me much panic and distress of itself just now. 

So my question of fellow Sjögren’s sufferers is - are these worsening tremors (with night time drops in BP and constant low level dizziness)  likely to be part of a related flare or does this sound like additional vascular stuff.

My lungs are completely clear. My brain only showed normal wear and tear, my chest X-ray and barium were all normal. I could ask for an ECG but I don’t think anything will show up and then that’s more reason for further investigations to be refused and for potentially serious conditions to be discounted without most thorough investigations.  Basically there’s a possibility that my all body tremors relate to being unwell from a virus on top of Sjögren’s and to anxiety. But how on earth can I know with my whole body in a state of tremor, breathless, coughing and dizzy? I am used to numbness, tingle, burning pain etc and have rationalised abs just about accommodated these over the past 7 years. But tremors and asthma - could these just be this wretched disease all by itself without further systemic involvement? 

0 likes, 5 replies

5 Replies

  • Tumtum1963
    Tumtum1963

    Posted

    Ps should have said that severe chest pain on my heart when I coughed disappeared with steroids but the intermittent choking cough has carried on and there’s always white-ish mucous plugs in back of my throat now. 
  • lily65668
    lily65668 Tumtum1963

    Posted

    Hi tumtum,

    My only contribution to this would be that this latest virus is a very nasty one, and seems to cause a lot of symptoms.

    I went down with it just over two weeks ago. The respiratory symptoms weren't too bad - cough, cold, sore throat for about a week - and I didn't bother my doctor with it, just got my pharmacist to give me a mucolytic. In my case, the difference from a normal cold was that I felt utterly exhausted. I could scarcely put one foot in front of the other for two weeks, and am only just starting to recover now. I also felt icy cold the whole time - in spite of the fact that my flat is very warm and well-insulated.

    The dryness in my mouth and throat is the worst I can ever remember it being. I wake half-a-dozen times a night completely unable to swallow and when I do - with the aid of a mouthful of water - it feels as if I'm swallowing gravel. My nose is packed with crusts, and even though I'm careful not to disturb them, I've had several brisk nosebleeds. I also have mild tinnitus all the time. Needless to say, my current flare-up of dry eyes hasn't been helped either.

    Worst of all is my current mental state. I only realised on Friday - when I was on the verge of resigning from my voluntary job - that I'm in quite a severe post-viral depression, which is affecting my judgement.

    I'm not saying this is all you have - just that you shouldn't dismiss this latest virus as  a normal cold, even if the respiratory symptoms don't last very long. I'm just beginning to realise this is the nastiest bug I've had since the big flu outbreak in 2003, and I think I'm going to be suffering the knock-on effects for quite some time.

    I hope you'll soon be feeling better. Hope I will too!wink

    • Tumtum1963
      Tumtum1963 lily65668

      Posted

      Thanks Lily. I’m honestly not dismissing thus virus as potential cause for all my new and flaring symptoms. I had the cold, with all the stuff you describe, back in the second week of January - six weeks ago. Please do post and let me/ us know if yours continues in this way - although I do hope it doesn’t of course. But my biggest worry is that the fine tremor that started in my right toe about 5 years ago has now spread up my right foot and leg, into my entire body. A really sticky cough is one thing and extremely unpleasant - sometimes a bit scary until I’ve spat up some of the clear mucous. And maybe it is asthma after all because I’ve always been highly allergic and super sensitive. But the inhaler doesn’t seem to help much although my peak flow has gone from  250 to nearly 400 in five days since steroids - which suggests some mild asthma I guess. The neuro side really bothers me more I admit. I’ll wait until my nerve wracking big deadline is over on Friday in case the mega tremor is anxiety -  and then, if tremors continue I’m going to have to ask for a second opinion from my hospital neurology department because being in a constant state of tremor now is not good! It’s a chicken and egg thing - anxiety causing tremors or tremors causing anxiety is the questions?! 🙃😊

  • beverly39559
    beverly39559 Tumtum1963

    Posted

    Hi TumTum

    your symptoms are so much like mine I just had to laugh😊😥and cry at the same time. 

    I have Sjogrens of course and small fiber neuropathy......I should say that my neurologist says it’s small fiber but I have so many symptoms of large fiber too. I have constant feelings of dizziness, and unsteadiness. I bought a cane a couple days ago but haven’t taken it out of the packing. My husband says I’ll never use it but you never know. I have such leg, ankle fatigue along with numbness that I feel like I might fall. Hang onto things a lot, like a wall or my husband. This is such a poor quality of life although I do try to ignore all this stuff when I can. I have so many friends and a loving family. I minimize my symptoms to them but sometimes just need someone to talk to. 

    Then you talked about pulsatile tinnitus and I couldn’t believe it. I have this too!!  I’m mainly aware of it at night in my left ear when I turn on my left side. I just had a MRI of the brain when I told the neurologist about this. I need to have a carotid artery scan. I go for results in March. And I wrote a few days ago about this weird feeling I get in my left ear......a numb, fullness feeling that comes and goes all day long. Very strange. Need to see a ENT doctor soon. 

    I don’t have tremors except get twitches in my legs at night along with numbness. Sometimes can’t even feel the sheets on my toes. 

    I too had this flu virus that has been going around the USA this winter. During the first two weeks that I had it had a low grade fever, profound fatigue, cough for a month (had bronchitis and on a antibiotic). A Sjogrens flare with increased numbness and also numbness in my arms and legs which has finally gone. Was so scared I wouldn’t be able to drive but okay with that now. 

    I exercise on my stability ball and lift small weights daily and also back to a little golf with the girls. I’m 72 and love life but it doesn’t love at times. 

    Hope you start to feel better TumTum.....you too Lilly 

     

    • Tumtum1963
      Tumtum1963 beverly39559

      Posted

      Thanks Bev. We do sound as if symptoms are very similar! But I’m a bit younger than you at 55 so I feel daunted at this being the state of play for me forever more - even if tremors and cough/ asthma settle down. I can’t even recall what it feels like to be well just now although I’m perfectly functioning in real terms. I’ve been living with low level dizziness, exhausted limbs, diffuse small fibre neuropathy (everywhere) since 2013 - prior to that it was two years of RA. I just can’t come to terms with it all somehow - still waiting for remission, reprieve, liberation so I can get on and fulfil my ambitions. I certainly would struggle to play golf. X
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