Posted , 5 users are following.
Hello. This is really 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 then so over stimulated after these 2 appointments and didn't sleep at all - nothing new there - my mind was just 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 on my oesophagus. My GP thinks this is oesophogal spasms rather than gastritis or heartburn as I'm on max dose of Ranitidine already and Lansoperazole doesn't help .
I have had all this breathless feeling before so not panicking - but wonder if anyone else's Sjögren's fatigue manifests in this way? I also 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 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 many of us. Our bodies are constantly battling with systemic inflammation so we have no residual energy for anything else a lot of the time apparently. Makes total sense to me. Our pain thresholds are also 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?
0 likes, 14 replies
morelia100 Tumtum1963
Posted
Hi Tumtum, I don't have that level of neuro presentation as you put it. I have Raynauds, and have also had hoarseness at times due to the dryness. However, I really feel for you dealing with all those symptoms and can only imagine the frustration when your doctors can't even seem to figure it out. My only suggestion, if you haven't seen a naturopath, maybe try one? The naturopath will often work in conjunction with your doctors, as they can do what they need to do without taking you off medications. They also may offer a different perspective. Best of luck. I hope you find relief soon
Tumtum1963 morelia100
Posted
Hi Morelia - I seem to have posted twice - can't get my head around this Patient site at all I'm afraid but it's the only place with an active Sjögren's community so I stick at it rather badly! I can't go to a naturopath as I'm in the UK and NHS doesn't cover this so I'd have to pay and haven't the funds.
My doctors are great actually apart from very conservative neurologist - but they just say that there is no treatment for this presentation of Sjögren's beyond what I'm currently on. They know it's the Sjögren's manifesting in a neurological way but there are no targeted treatments for the MS- like form of this disease. Of course I do have all the topical meds for dry eyes etc and am under opthamology soon - but I've managed Sicca all my life and my eye surfaces are still relatively unscathed - same with teeth so I'm thankful for this. I'm also under ENT for nose bleeds which are thought to be due to dryness and a deviated septum but waiting for confirmation from ENT based on CT of sinuses done last week. All my really nasty symptoms seem to be caused by the nervous system and I do have small vessel disease of brain and very early stage kidney involvement which the Mycophenolate is effectively treating. So there are good things among the lousy ones. It's just rather lonely having this unusual presentation of Sjögren's.
amkoffee Tumtum1963
Posted
First I want to address the burning lips and mouth. That sounds like you have burning mouth syndrome or also known as burning tongue syndrome. It's a terrible thing to have and people who have it are very miserable. There is no treatment for it. You can look up more information about it online.
Secondly the aches and pains of Sjogren's is very similar to that of polymyalgia rheumatica. And it presents with inflammatory markers as well. But the pain that you get in your joints and muscles can only be controlled with prednisone. However this disease is typically only found in people 50 and older. It can be found in younger people but that's unusual. I'm only bringing it up as a possible diagnosis for you if your rheumatologist misdiagnosed you with inflammatory arthritis.
shaq26875 amkoffee
Posted
Not sure if I believed him but further googling on it ...maybe my body pains are due to fibro and serious brian fog....especially short term memory (within minutes I forget what I am supposed to be doing
misplace things and when found ..no memory of putting them there in the 1st place ......
so now not sure now what symptoms are caused by SS or fibro or other GI issues I have been dxed for last 2 yrs.
anybody on here told they also have fibro ? If so how long have u been taking meds for it.
I am expat in Middle East so its only specialist drs who are available (no alternative) and all they push are drugs...
Tumtum1963 amkoffee
Posted
amkoffee shaq26875
Posted
Hi shaq26875 I'm not sure why you commented here. My post was directed to the questioner, tumtum. And I am sorry that you're having problems yourself. It is common courtesy to start your own thread with your own question. Do you know how to do that? There is a button down at the bottom of the comments that says "start your own discussion." You can use that to start your own question if it's in the same category.
On another note about your memory issues... I too have the same problem. I forget words. I'll be dictating into my tablet as I am now and have to stop because I can't think of the simple word that I want. Frustrating isn't it.
Tumtum1963 amkoffee
Posted
Sorry if I caused confusion but it was my first rheum who misdiagnosed RA six years ago - the new rheumatology team seem excellent and appear to be quite sure that my high inflammatory bloods are a hallmark of Sjögren's rather than PMR or anything else. My mother in law has PMR and it affects her shoulders and muscles. I tend to get tendon pain and nerve pain. I do have severe arthritis in my lumbar area and neck but my rheum was clear that this is osteoarthritis rather than inflammatory arthritis. He said imaging last year has confirmed this. Apparently, with Sjögren's, it's all about the high IgG concentration that makes these very raised levels become our norm.
The burning lips and gums are undoubtedly a type of burning mouth Syndrome I agree. It is really horrible. However, even more distressing to me is the rancid taste I have (sour milk and garbage!) that no dentist or oral consultant can find a local reason for. So my oral consultant is fairly sure that both are neurological rather than dryness, oral thrush etc. Same goes for the constant tinnitus. I find it hard to accept that so many seemingly "real" are related to my nervous system or brain. I keep wondering if the confirmed arthritis in my neck could be causing these problems and I have pushed hard for imaging of my jaw and sinuses. I would be strangely relieved if a mechanical cause was found even though there isn't much that can be done about osteoarthritis either.
amkoffee Tumtum1963
Posted
I can certainly understand the desire to have a firm diagnosis. Even if there isn't a solution at least you have an answer. As for the nasty taste you're getting that is also a sure sign of burning mouth syndrome. I don't know if you use Facebook but if you do there's a wonderful group on there for sufferers of burning mouth syndrome. You might consider joining it. You'll get some suggestions on things other people have tried to relieve the problem and of course moral support.
Tumtum1963 amkoffee
Posted
Thanks Amkoffee. Unfortunately I'm all too aware that burning mouth syndrome exists and is directly related to the awful rancid taste.
But me being the person I just am - I can only begin to process and attempt to deal with bad symptoms if I know, at least approximately, what underlying process is causing this sinister and debilitating symptom. BMS is the title used for this condition only when it is idiopathic i.e. No known cause.
In fact, for me personally, I'd go so far as to say that it's not burning mouth syndrome as such - it's part of small fibre neuropathy of Sjögren's. My sister has lived with BMS for many years now and is profoundly deaf, and otherwise very laid back and not of anxious disposition with no underlying autoimmune disease. She doesn't have a bad taste and nor has it affected her sense of taste or smell as it has mine. It doesn't drift up into her nose or cause numbness in her teeth or severe tinnitus (unlike my other deaf sister). Unlike me she hasn't searched for answers or bothered seeing her dentist and doctor for follow up. She hates it with a vengeance and I have searched on her behalf for information. I will tell her about the Facebook page but I'm not really looking for support myself - I'm looking for the cause.
I think I've got quite a long way now for myself because I know that Sjogren's can present as a neurological disease and I know that mine does. So the BMS is actually small fibre neuropathy in the form of triegeminal neuralgia - same as I have throughout my peripheries - particularly severely in my fingertips and even under the tips of my nails. So joining a BMS support group would be as hopeless for me as joining a IBS or Fibromyalgia support group. I'm firmly of the view that the reason no one has used these labels for me is because I don't actually have them - I have Sjogrens. In my case this seems to have brought on symptoms very similar to BMS, IBS-c and idiopathic SFN. But none are idiopathic for me although they are very isolating and debilitating, just as MS is for many sufferers. When I want to understand my symptoms these days I return to Julius Birnbaum at John Hopkins excellent paper on the neurological manifestations of Sjögren's - I quote: "Trigeminal neuralgia and glossopharyngeal neuralgia
Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy."
morelia100 Tumtum1963
Posted
Hi Tumtum, I'm sorry to hear about all your symptoms and cannot begin to imagine how you live with it each day. I looked up trigeminal neuropathy and noticed that the cause is not really known other than age or damage to the nerves. Also, I read, mostly women are affected and mostly people over 50 and that there are similarities to MS. This sounds so much like autoimmune diseases. Traditional doctors can only medicate, and often this is just temporary. True healing requires figuring out the contributing factors to your disease and reducing or eliminating them. For this, a naturopath might be most helpful. I sincerely hope you find relief soon.
Tumtum1963 morelia100
Posted
Thanks Morelia. Yes my form of Sjögren's is very like MS although it started out just like RA (was even misdiagnosed as RA!). Average age of trigeninal neuropathy is actually 30-40 but might be different if it's part of Sjögren's.
Unfortunately I can't afford to see a naturopath but I like my connective tissue disease doctors and have good GPs too. I don't like my neurologist much but hey we can't have it all?!
shaq26875 Tumtum1963
Posted
I have been suffering bad neck pain, shoulder pains, biceps (debilitating...to point couldn't raise my arms above waist level. I went to rheum for follow up about SS which had recurred (since January but got progressively worse coz was not taking hydrochloroquine ..roll forward 2 months went for follow up) he attributed my neck shoulder arm rib pain to fibromyalgia and prescribed cmybalax (or something like that...) haven't started it yet ...but started to take lyrica....still don't sleep well at night but has helped with muscle pain which he said was not related to SS.
?So I don't know if the lyrica is finally helping (had stopped it after taking it for 1 month coz wasn't helping my arms and restarted last week) or now into 3rd month of hyrochloroquine which is helping which I take 200 mg x 2 daily... (even though my weight indicates I should be on 260 mg a day but he wasn't duly worried ) and lyrica at night. quality of life is slowly getting better ..though still cant pick up or hold heavy items like grocery bags etc but cant do normal daily chores like washing hair, brushing teeth, getting dressed/undressed
Tumtum1963 shaq26875
Posted
Thanks Shaq but couldn't tolerate Lyrica or others of this family. I don't have Fibromyalgia? I'm never sure why they use this label if we have a clear diagnosis of Sjögren's?
However I was misdiagnosed with RA initially so I'm very resistant to receiving more diagnoses now unless can be clinically evidenced. Maybe I'd feel differently if I could tolerate the meds used for neuropathy or arthritis pain- but I really can't! I feel more comfortable with medications such as DMARDs which are used to modify the disease at source because they are generally much easier to get back off and I'm well monitored on them.
shaq26875 Tumtum1963
Posted
Hello Tumtum, in light of what you have said I will give lyrica a miss over the next few days and monitor my so called fibro......maybe hydrocloroquine is all I need to resume life
?I also have the burning mouth which the rheum said was not related to SS and nor was the crazy itchy skin in random places at random time (since then my skin has turned darker where I have scratched like crazy...maybe due to my blood Factor 7 borderline score..i just don't know, but recently it has stopped so maybe hydrochloroquin kicking in ...hope so ) also other posters have said in reflux forums that burning mouth could be due to silent acid or vagus nerve being affected by acid (and hydrchloroquin hasn't sorted this yet)
?My ailments seem not so bad compared to yours so maybe I shouldn't complain now that I am beginning to see light at end of tunnel. Hope you get some answers and relief soon
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