Hello. This is reallt a question for those with a very neuro presentation of Sjögren's I think.
I had a heavy day with CTD clinic appointment followed by an oral consultant appointment yesterday. All went well but the consensus seems to be that my main problems are neurological rather than relating to dryness and inflammatory arthritis as I had assumed.
I was over stimulated after these appointments and didn't sleep at all - nothing new there - but my mind was going round and round both appointments. So today I have this familiar feeling of chest being crushed, my voice feels hoarse - as if something heavy is sitting on my lungs or in my oesophagus. My GP thinks this is oesophogal spasms rather than gastritis or heartburn as I'm on max dose of Ranitidine and Lansoperazole doesn't help .
I have had all this before so not panicking - but wonder if anyone else's Sjögren's fatigue manifests in this way? I have such burning lips and gums, numbness and tingle in cheeks, aching jaw, oesopgogeal spasms, raging tinnitus and while body aching and weak - plus this hoarse voice and chest tightness?
The rheum doctor yesterday explained to me that my permanently high IgG and other inflammation markers are specific to my Sjögren's. The thinking is that this is why fatigue is such an issue for most of us. Our bodies are constantly battling with systemic inflammation so we have no residual energy for anything else a lot of the time. Our pain thresholds are skewed by this fatigue.
The oral consultant could find no trace of oral dryness to explain my burning lips and gums or the rancid (like off milk) taste I experience 24/7. She says she will write to my neurologist about this.
Meanwhile I'm on 3000mg of Mycophenolate daily and the rheum (a Scleroderma doctor - even though I'm diagnosed with primary Sjögren's) explained that even my Raynauds isn't real Raynauds - it's just a colour change reaction to cold because of my small fibre neuropathy. He thinks on balance I should stay on the maximum dose of Mycophenolate as it's all that's left for me and he hopes it's doing enough to warrant the risk.
I feel constantly cold even when it's warm. My GI system is hopeless. He's referring me to gastroenterology for a decision on whether my stomach and bowel issues are gastroparesis / dysmotility or IBS-c.
Does anyone else have a similar neuro presentation of seronegative Sjögren's and if so - what meds are you on or what do you find helps?
Hi Tumtum1963,
I'm so sorry you ar going through this. I myself am new to this and don't even know what meds are out there. My Sjogren's is still completely unmanaged. I too have esophagus spasms to the point where I cough and gag. Sometimes I feel like I'm bloated from the chest up. I don't take the acid medicine as I feel it worsens the symptoms. I do have the ringing in my ears. The only thing that helps is sleeping as I feel it relaxes the muscles. Hope you feel better.
Hi Tumtum,
i commiserate with you!
I have often tried to explain the crushing fatigue which seems to centre in my chest and of itself just wants to push me to the ground where I could lie and be trampled over and not particularly care. The hoarseness hounds me continually. I do not have tinnitus PTL.
The tingling around the mouth, the cheeks I have less of these days but still emreges when I have insufficient sleep and all my skin feels like it is burning and prickling like just yesterday, it was terrible. I told my chiropractor during my appointment yesterday and she suggested I get back onto the Turmeric for awhile to help reduce inflammation and some Melatonin to see if will assist my sleep.
For me I have had severe Gastroparesis with oesophageal and gut dysmotility whereby for five years from 2008 to 2013 I was on a liquid only diet as well as Domperidone (Motilium). Although I can now eat solid food I am a bit limited as to quantities and still on the Domperidone.
Temperature regulation is also skewed as you are finding. This has imoroved a bit with higher doses of Lyrica.
It's a real juggling match. But as my Rheumatologist says if you get a percentage of relief from each med then overall well being and QOL does improve somewhat and I have to agree.
I was seronegative for several years, then two years ago I asked to have the ANA's and ENA's etc done again (admittedly a few years in between testing) and the results were very positive. Have been on Plaquenil for about one year now with a 20-25% increase in energy.
So sorry you feel so dreadful! I felt very ill in the years when my Gastroparesis was bad. It was probably the worst manifestation by far......but then again 😀
Hi Megheart. Sorry you've had gastroparesis and that we have shared symptoms. But glad you are doing well on Plaquenil at least. I was initially mis diagnosed with RA so have tried four other DMARDs including Plaquenil but all gave me severe allergic reactions finally.
When I saw seronegative I only mean my ENA panel - my ANA is a clear positive but with a nucleolar pattern. My lip biopsy result was extremely positive so my RA diagnosis has been replaced by seronegative primary Sjögren's. The 2017 BSR guidelines and related burden of Sjögren's report suggests that lip biopsy positive sufferers are more likely to have neurological problems as their main systemic symptom so I'm guessing I'm one such.
I was really disappointed by the fact that the severe facial numbness, feeling of pressure and tingle in my lips and nose, sour taste plus even my Raynauds are all thought to be neurological manifestations. I can't explain why, to me this is worse than if they were classic Sicca related, but I think it's because I don't much like my neurologist and also because, if Mycophenolate isn't doing enough to prevent it all from progressing at the maximum dose - then there are apparently no other treatment options available to me. Rituximab is only used for those who are seropositive because it's not effective for neuro symptoms and IViG is used for small fibre neuropathy in the US but not in the UK where I am. The Scleroderma doctor seemed a bit bewildered that I'd even suggested it as a possibility but commented that this would be for my neurologist to consider and we both knew that there's no way that it would be considered by her. I think this is why I'm feeling rather low and finding it so hard to sleep - the GI involvement is just the rotten icing on the rubbish cake! 🙄🙁
Hi Nu2this - sorry you are struggling with unmanaged Sjögren's. Hopefully you will get help soon. I get mad for us Sjögren's people because they so often drag their heels about us and there isn't a targeted treatment as such. If it was RA you'd be on treatment straight away but doctors tend to be slow to treat Sjögren's. I hope that you will get to try Plaquenil soon perhaps and, hopefully it will help a lot. Interesting about the oesophogal spasms for you too. I've still to have mine confirmed but it looks less and less likely to be dryness as previously assumed.
Tumtum I am not Sjogren's but Behcet's so similar and I have mainly neuro of a nature you describe. Not really the other more recognisable symptoms.
So I had great success on interferon which was used a lot in ms I believe and the neuro stuff just went....just like that. Within a week nothing. Normal.
So I had to stop after 3 years because of an unrelated problem. I have inflammation return. Gastritis...plantar fasciitis...sinus problems due to inflammation and more. I started Plaquenil three days ago. Not sure how well it will work but certainly calming my gut and sinuses. Feet still sore. I increase it next week we'll see. Hope some of this is helpful.