I am so scared and hoping that you wonderful bunch here with so much knowledge can help me.
After years of being treated for sjogrens syndrome, and PMR, it is now believed I don't have either. Bloods never really showed much and nothing was ever completely definitive, just probable, but recently, due to rashes headaches and blood vessel issues, Vasculitis became the front runner for a diagnosis.
However, after watching my mother die of autonomic failure (pseudo obstruction, sudden cardiac death) and having odd and random autonomic neuropathies myself, part of me couldn't help but think there was a connection, even more so when my daughter developed similar autonomic symptoms. Despite all this, sjogrens always seemed to remain the most likely diagnosis and even autonomic evaluation at a leading autonomic hospital 4 years ago turned up nothing but "anxiety".
The last couple of months though have been really tough for me and my daughter with strange symptoms and generally being quite ill yet with nothing showing on our blood tests.
Then this weekend I am rushed into hospital with an irregular and fluttering heart along with 3 day gastroparesis and vomiting. While there it is decided that my nasal and sinus problems are also more than likely autonomic along with my bladder issues, breathing, swallowing and visual problems, headaches, burning skin and ghastly sweats which have all worsened the last few weeks.
So what do they do about it?
An ecg to tell me that the irregular pattern is not AF or anything dangerous, a press on the tummy to tell me it's not hard enough to be worrying, and a check for pancreatitis. They then suggest I get my GP to refer me back to the autonomic unit I've previously been seen at and send me home.
I have emailed PALS at the autonomic hospital to ask if under the circumstances, ( as I am still technically under them having never been discharged, just forgotten,) could they please make me a follow up asap. I will also go to my GP practice tomorrow and have a tough time as my doctor is on holiday, but I will try to get a speedy re referral.
I am scared stiff. Is there anything else I can do?
Does anyone have any idea what this could be?
I have been reading through all the congenital, hereditary autonomic things over and over again and nothing really fits but it has to be something like this for me and my daughter to have similar symptoms. She is under cardio for irregular sinus rhythms and neurology for headaches and neuropathies, ent for dizziness, gastro for bowels, rheumatology for joint pains etc etc. So far just a diagnosis of UCTD and possible early RA.
I know it can take years for a definitive rheumy diagnosis but I'm 12years on and still nothing so I can't help but worry.
Do you think I am being silly and that it is probably just the autoimmune thing causing all these problems?
Thank you all X
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Georgie-girl
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PMR IS a vasculitis - and associated with large vessel vasculitis and GCA. But your daughter is unlikely to have PMR/GCA unless she is in her 40s at least.
It's a shame the end of your post has disappeared - were you going to say you have a cardiac arrythmia? Mine is due to the vasculitis of my PMR/LVV diagnosis.
I did think this initially Pro as I know all my symptoms could be explained by vasculitis but my ESR and CRP are never raised above 5 or6. I'm still under a vasculitus specialist and he is keeping an eye on me but he doesn't really buy the idea of vasculitis.
Hello GG...earlier today i read your post & exchange with PMRpro ...then refreshed my memory of your stuff via your HU profile...have been mulling things over...for what it’s worth (am feeling v shy to even say this, cause you’re v well informed so am sure you’ve already thought it through, but here goes):
i keep feeling your immune dysfunction, whatever it is, overlaps with a multisystem connective tissue disorder in the Hypermobile Ehlers Danlos Syndrome/Marfan spectrum. As does mine. Like you, my genetic predisposition/family profile etc fits with/substantiates this. Like you, i’ve spent many scary years in the diagnostic wilderness before finally achieving convincing diagnoses + effective combined multisystem treatment plans. Like you, chronic progressive mouth to a*s GI dysfunction/debilitation , vasculitic stuff & dysautonomia feature etc etc...
Am relieved you’re under a good vasculitis expert. I hope you begin to see more light at the end of that tunnel
Don't ever feel shy or worried about saying something dear coco. We are all pretty well informed but there is always someone who knows something that you don't or even sometimes someone can say something that refreshes your mind or makes you look at things differently. I never cease to be amazed at some of the knowledge you all have on here and how you have helped me through some bad times, so never ever feel shy to say something. OK, telling off over.
Funny, but I came across Marfan recently while researching things. I got quite engrossed with things like Mast cell activation syndrome and mitochondrial things and I never finished reading about it so that is on my list for tomorrow.
It is so reassuring though to know that there are others who have been through similar things and have similar symptoms as sometimes I do start to wonder if I am going mad.
Hope you're well coco and have had a lovely Easter. xx
MCADs, dysautonomia, GI tract dysfunction etc etc are ALL VVVVV hEDS/marfan etc. You probably inow the wonderful EDS UK support group website, but in case not:
Am about as well as i can be, all this considered...just had my first anniversary off food & on Exclusive Enteral Nutrition due to the Intestinal Failure: EEN suits me brilliantly! Having hEDS-scoliosis correcting spine surgery on friday: another big adventure...bound to make my dysautonomia take off 🚀...but that’ll settle down eventually 😉
Oh my word, how do you do it? You are one strong lady.
I am so pleased that the EEN works for you. I have to ask though, do you not miss food at all? I have been 4 days with next to nothing and I'm climbing the walls already planning a meal for when I can eat again.
Good luck with your surgery on Friday, not that you need it of course, you'll sail through it and we'll all be here for you afterwards. xx
THANKS again 💐. It’s the amazing solidarity & support here that keeps me going...every thoughtfulness & kindness & chuckle & advice counts 👍.
EEN predigested amino acids are giving my small intestines the total holiday they’ve badly needed for a long, long time...after decades of progressive debilitation, the chronic abdo/visceral pain has damped way down, as has the chronic malabsorption...which has settled down so thoroughly that i’m even benefitting more than ever before from all my oral medication. EEN is so totally satisfying my appetite & bodily needs & generally easing things so much for my disabled GI tract + helping my meds help me so much more that i don’t miss food at all...i figure: of course EEN has its scary side, but why would i miss food when i’ve been hyperreacting so severely to it for decades? It’s all V STRANGE, but true 🤷🏼♀️
What exactly was the problem with your GI tract if you dont mind me asking? Was it slow motility or gastroparesis or something? How did you cope? You must have a lot of useful tips for coping strategies.
Thanks for asking...explaining this always helps me come to terms with it. I think you know quite a lot about this subject, so i’ll TRY to be brief (🙄) but this is a complicated business
Another term for my type of Intestinal Failure is Chronic Intestinal Pseudo Obstruction, but, as you know, because this tends to be a default diagnosis, establishment medicine shies away from using it lightly or at all. My case is complicated further by the positive way my GI tract issues respond to daily mycophenolate + prednisolone...it’s this + my positive response to long term EEN that make my consultants suspect i have an unusual crohns-like IBD.
And yes, for 65+ years gastroenterology has been busy diagnosing & treating the chronic childhood onset individual conditions affecting my GI tract mouth to a*s: from angina bullosa haemorrhagica, oral inflammation & lesions, dysphagea, severe slow transit dysmotility, pre-Barrett’s oesophagitis, gastritis (including small intestine bacteria overflow), gastroparesis, duodenitis, the intestinal hyperreactivity + pseudo obstruction + lazy colon + acute sigmoid angulation, teen onset prolapsing strangulated piles etc etc. This combination is very hEDS, especially alongside the dysautonomia & MCAD-type hyperreactivity to food stuffs
🤷🏼♀️ Well, i gather that, as with ALL immune dysfunction diseases & connective tissue disorders - MS, RA, SLE, SS, SSc, vasculitis, crohns, diabetes, hEDS, marfan etc etc, science doesn’t know exactly what is “the problem” with our stuff. So, HAPPILY, my university hospital multdiscipline gang’s ‘best guess’ is that my infant onset mouth to a*s progressive GI tract debilitation, hyperreactive & inflammatory illness is due to the effects of my 3 simultaneous underlying primaries (hEDS, Systemic Lupus Erythematosus, & the Antibody Deficiency Disease - a PID ). I’ve read the current comprehensive official reviews of The Literature on the gastro manifestations of my primaries, and this ‘best guess’ makes sense. In particular, the recent concensus re the mouth to a*s gastro manifestations of hEDS agrees with this ‘best guess’.
In my case consultants tend to think decades of progressive neurological & vascular & mucoid tissue debilitation due to my lupus & PID going unmedicated + the deterioration typical of hEDS are the main underlying causes. But investigations are ongoing 🤷🏼♀️
Hope that makes some sort of sense
Yes, OH BOY have i spent 65 years developing coping strategies A Go Go....and now i’m getting great help from specialist gastro teams in our Bowel Retraing & Biofeedback + Nutrition & Dietetics clinics. Here is one of my fav references on CIPO...maybe you know it too:
Thank you so much coco, you are a star and a bit of a martyr with what you have been through. The link you sent me on pseudo obstruction has really helped ease my mind. I always thought pseudo obstruction meant automatic death but it doesn't. The link has shown me that so much can be done and that has helped me big time. It was the best thing I have ever read on pseudo. So informative and I want to give you a big hug for that. All I can say is a repeat of what I said before, you are one tough cookie. I don't know how you do it.
👏👏👏👏YAAAY: am SO GLAD that helps👍...i am LIVING proof we CAN live this life...+ that the right tertiary care centres CAN really help 👌
💐 THANKS again dear GG...it's chatting to you & others here + via my other support groups that keeps me coping...also i have a handful of friends+family & medics who REALLY get our stuff and relate to me in ways i can ‘bear’...without you lot i’d be ‘long gone’ 😉😘🍀
My daughter’s neurologist dr Goodman (many YouTube videos from his expertise on the subject) from mayo in Arizona thinks there’s always some mast cell activation with dysautonomia and treats aggressively even if blood and urine tests don’t indicate mca.
I have autonomic damage due to SLE. I know its terrifying to deal with - especially when you don't know what's causing it. Unfortunately there are a lot of moronic assumptions around regarding anxiety and autonomic dysfunction. And unfortunately anxiety does make autonomic dysfunction worse (not the cause of it).
All I can offer is a kind of band aid until you get an answer - and please don't stop looking until you have an answer that isn't based on assumptions about you're mind !
Ask you're GP to see if you can -
Take B6 - Proven benefits with for nerve conduction. 'BUT NEVER TAKE MORE THAN THE RECOMMENDED DOSE' its one of those toxic build up vitamins.
Take a lot of fish oil type supplements. All the omega's. and complex B's
Cook everything in olive oil. Google - the Mediterranean diet / for neurological stuff.
I'm not parroting the 'its anxiety' doctrine - but deep meditation twice a day. Or anything that helps with anxiety.
No caffeine or alcohol. Sad but true with my autonomic stuff anyway.
Keep up the fluids - drink as much as you can when you get up in the morning and keep drinking. Maintaining fluid volume is very important.
Perhaps work backwards and define the symptoms - find a well qualified medical physiologist. I was (rightly) or wrongly - diagnosed with POTs - and a very specific gentle but well structured/well researched but controversial exercise routine helped reverse some of my symptoms. Some of it was actually de - conditioning. Some of it was neuro damage. But as anti - intuitive as the exercise program felt and still feels - got me functional again. I also had the option of several medications that can help - but my GP insisted that I try the exercise rehab first - (Fludrocortisone was one of many tricky one's - already on prednisolone)
Thank you Freckle for this very informative reply. I do take fish oil, cook in olive oil and recently my respiratory doctor put me on high dose vit D but I'm not taking any B vitamins so I will definitely speak to my GP about this, thank you. I don't touch alcohol but until now, I never drank enough water. I just love my coffee, but my daughter has similar thoughts to you and has swapped the coffee for decaf and keeps shoving bottles of water in front of me shouting, "drink it".
I remember now reading something way back that said about drinking a large amount of water when you first wake up in the morning so thank you for mentioning that.
I'd love to try your exercise program, it sounds like it has really helped you. Did you get that when you got your POTS diagnosis?
B12, erm, yes I have but not recently so something else to mention to the GP.
Yep. The exercise program was due to the POTs diagnosis. I keep doing it despite a bit of a re - evaluation of the diagnosis. As Melba said - a lot of its about restoring the BP dropping reflex by strengthening leg muscles ( or even as many bodily muscles as you can) along with other exercises (possibly to strengthen lower left ventricle of the heart ? - don't quote me on that one)
Simple exercises you can start off with at home - are just stepping up and down on one elevated (stair) step or equivalent. (better with weights in you're hand) Lead with the right foot and do it ten times, then change over to the left. Another is standing with you're arms crossed over you're chest like an (X) - then keeping you're back as strait as you can- slowly using you're knees and stomach muscles - go as slow as you can into the - I'm going to sit down motion - get as low as you can without hitting a seat - then slowly - go back up to a standing position. 10 Go's at a time again.
Also. And I hated this the worst. When you're sitting at home - don't recline - and put both feet flat on the ground. That helps restore lost reflexes too.
I do a heap of other stuff - but its important that you see a medical physiologist one on one who can check you're BP while you're first trying the exercises and determine what you need as an individual - and can help you with more exercises once some improvements start kicking in. Its a slow process - and - Its important to go at you're own pace when you have an exercise plan in place. It really was the most anti - intuitive thing I've ever done and you have to be careful when you start. You don't need an over adrenalized gym junkie breathing down you're neck. Its just important to keep doing it - no matter how slow - or - how many rests you need in-between exercises.
But its important to know that for some people - those with ME or Chronic Fatigue type diagnosis - that this kind of stuff can backfire badly. There's - I feel weak and I feel like I'm going to faint - and then there's - I can barely move and feel like I'm going to die. Just be very aware of the difference when taking on this stuff otherwise it will backfire.
* B6 is almost a prescription medication here (Australia) for all things neuro.
Wow, so much knowledge there Freckle. Thank you so much for that, I am going to try a few of those step up ones and the squats later. Just a couple. To be honest though, I don't think my BP actually drops. My heart does weird things but my BP just recently is more on the high side. I agree, I definitely need to see someone to put all this into something that makes sense, and I am off to see my GP as a first instance later today. Hope she gives me some B6.
Oh Georgie - girl, so hard with all the unknowns and with your poor daughter having it too, always worse when’s it our children and we’re still not feeling we’re getting the right answers 🙁 but as freckle says there are loads of lifestyle things that can really help autonomic dysfunction.
I agree with coco and freckle, EDS is very genetically linked and also linked to connective tissue diseases and autonomic dysfunction. My twin sons have recently been diagnosed with EDS which made total sense once we knew (very bendy, always tearing ligaments, joint pains, chest pains, breaking fingers because nothing to stop the bone just going straight back and breaking if they caught a ball) They also kept saying that as they stand up they lose their vision and feel dizzy. They haven’t officially been diagnosed with autonomic dysfunction but it fits and i went to the autonomic centre a couple of months ago and was diagnosed with it as part of my lupus flares.
The problem with any of these tests is that you may have been in remission/ a non active phase when you went to the autonomic centre so nothing would show? Definitely worth contacting the autonomic centre and asking to be tested whilst in a bad phase although if you’re in the uk and it’s the national neurology centre I tried that and no response - just a 9 month wait and tested when in mostly remission. They did admit that is a problem with those of us with relapsing/ remitting diseases but mine had enough to show autonomic dysfunction although nowhere near as bad as it can get.
Most of their tests are postural though so does your heart rate rise/ blood pressure drop on standing? If not you might need more advanced testing to get to the bottom of it as your symptoms seem definitely linked (bladder, heart rate, digestion etc).
As freckle said, drinking loads is very important, makes a big difference to me. Might sound obvious but if your symptoms are much worse when standing still then lie down wherever you are and that can reset the heart rate/ blood pressure very quickly. At my worst my heart rate was going to 190 per minute and I was blacking our straight onto my face so I’ve learnt now to just go down to the floor when I get the pre- fainting feeling. Strengthening your calf muscles really helps too, if standing isn’t too hard going up onto your toes is a good exercise and do exercises lying down if not.
It’s very hard for the hospital drs to understand if they don’t have specialist knowledge. Are you near any of the bigger teaching hospitals. I was told similar to you at my local one then was transferred to a London one where they kept me for 9 days and said they weren’t letting me go until we got to the bottom of it, so getting the right hospital may get you closer to the correct diagnosis overall too?
I just did a bit more of a reply to Georgie - girl - and thought the reply might help you ?
I have a 24 hour - 7 day a week membership to a gym. I use the rowing machine, and leg and arm press thingi's that allow me to do the exercises while sitting. There are other torture devices where you can have you're head so much lower than you're legs that you're almost upside down. (for muscle building) I sneaked a go at these : ) but I'm meant to keep seated with torso vertical.
You are very correct about just lying down wherever you are ! There were times where I should have and didn't - due to embarrassment - and payed a big price later.
Thanks freckle, yes it's such a pain isn't it? I find the autonomic problems one of the worst symptoms because I just want/need to lie down! I've learnt to not care where it is as that's better than blacking out... I have autonomic neurology next week so hoping for some help although I'm lucky that mine almost recovers between flares
Hi Melba, I am so sorry to hear about your sons. It does seem that some of these disorders are more hereditary than at first thought. I hope they are ok though bless them and that you are able to get them assessed.
I have never really suspected EDS (even though it comes up everywhere when I am researching) as I am the least bendy person I know. I was tested for it I believe at the autonomic unit too. Having said that though, I did smile when you mentioned tearing ligaments etc as I recently tore tendons while doing virtually nothing more than folding a t.shirt. First time ever I have broken or torn something.
You're right about being relatively well when I had my autonomic testing. Plus back then the symptoms weren't that bad. They were scary and I remember thinking how odd some of them were, but they were no where near as serious as I feel they are now. I'm hoping they feel sorry for me and make me an appointment but I doubt it, and yes, it was the national neurology hospital.
As of yet I haven't noticed a blood pressure drop and funny enough, that has never been an issue despite everywhere saying it's the most common and usually the first symptom of autonomic dysfunction/failure. My heart rate though doesn't increase when it should and that's a fairly new symptom. I have had episodes of palpitations, ectopics, racing etc randomly for years but never had this or an irregular rhythm before. Like your sons, my vision does go blurry and I am dizzy a lot of the time at the moment, but it isn't any worse on standing up. I'm just strange.
I can't begin to imagine what 190 beats per minute feels like. My goodness you poor thing. I'm sorry you had to go through that to get to where you are now. These diseases are just the pits.
I do go to a large teaching hospital but sadly, they are just so full of people with broken finger nails or a tickly cough and from such a wide area that they are overstretched beyond belief and can't wait to get you out.
Thank you so much for the tips and advice and I hope your boys get properly assessed and can manage their dizziness. As you say, it's always worse when it's our children. xx
It could be Behcets Disease with those symptoms. Take photographs of any unusual rashes and collect reports and evidence of all the things you refer to and seek an opinion.
Thank you cpops. I've just had a quick look and it does seem to fit somewhat and I did have some strange blisters in my mouth last week and thought nothing of it. Think I need to look into this one a bit more. I do have photos of my rash from both times it appeared on my legs and leukocytoclastic vasculitis was suspected but again, my esr was just 7. Off to do some Behcets reading. Thank you .
As a psychotherapist specialising in chronic pain and illness, I have particular experience and training in methods to help with the trauma, acute distress and anxiety associated with long term, complex illness and pain. Freckle1000 mentions deep meditation so I am taking the liberty of writing to you about two tried and tested methods of guided meditation which might help you on your journey. Having spent 6 years in constant pain, I too am a big fan of regular meditation but it can take some time to develop the skill and get the full benefits, especially when you are in a state of major distress already and guided meditations take you much deeper, quicker, I often find. Davidji on davidji.com runs daily guided meditation courses (payment is flexible according to what you can afford so $10 to $30 for example for a 40 day course. They just drop into your email in box every day and if you miss a few days you just catch up when you can. Choose courses on his website and follow the links. Also learningstrategies.com offer a deep relaxation download (more expensive at circa $30 but once you have it in your personal digital library with them it is there forever and can be accessed as and when you need it. They will try and suggest you order the whole suite of paraliminals but just ignore this and drill down to the individuals that strike a chord with you). With learning strategies you get two voices in left and right ears and it gets to the subconscious very fast. Just thought I would mention these in case they were of any interest or help to you. With my very best regards, Lily
I’m finally getting to read your posts and all the excellent comments GG. So sorry about the dreadful time you’ve been having and your daughter too. What a nightmare.
I really don’t have much to contribute but, like you and Coco and most of us here, I have come to rely on this community above all of the others for the common sense, knowledge and sheer kindness I find here. Also, like you, I get the initial high alert response followed by the thing of attributing everything to either functional or 🤷🏼♀️.
I’ve just had a neurology appointment after EMG and NCS tests that were more or less certainly very normal. The doctor said same as last time a few years ago - they aren’t even equivocal.
My barium swallow, tilt table and all ultrasounds and other imaging are normal as are my blood tests apart from high PV and raised CRP - which are apparently the normal FOR ME?!
So even the abnormal results are now judged as my normal. Same goes with ectopic beats, skin rashes and other systemic or organic manifestations. They are always “just ageing, just blood, just functional, just you”.
So how come I feel so crap all the time then? “Well that’s just you too!” they probably think.
I’m trying to push them now to assess me for EDS - I emailed my rheum and vascular dr this morning to request this as no one has ever even run the beighton scoring system on me to check my joint hypermobility. I’m 99% sure it sits alongside my Sjögren’s and Hashimoto’s and has been with me since the day I was born and is in my sisters and my late mum and gran.
Like Sjögren’s it has been argued “well what does it matter if you have it or not as there are no treatments apart from physio and topical ones?”. I hate the idea now of having anything sitting undiagnosed, the colossal impact of it is then lost on our friends, families and doctors.
Next week I hope to persuade my doctors that I’ll be so much less bothersome to them all if they can just correctly diagnose and put in writing a list of my conditions at the top of each letter now. I’d settle for only being seen once a year and self managing all this but I need diagnostic clarity about the conditions such as Raynaud’s and Livedo and I need this in writing!
I so hate going to GPs and saying I think I have this that or the other because these have been mentioned previously - but now I have to risk humiliation of saying I have something that has never actually been listed or confirmed in writing? It’s the dreaded “do you?” Frown..”no I don’t think you do I can’t find it on your notes?”.
But they can find plenty of stuff no one has ever told me about eg fatty liver, essential hypertension, anxiety and of course functional!? Xx
Oh poor Twitchy. There is always something isn't there. I can't remember the last time I actually felt normal or alive without something somewhere hurting, malfunctioning, or just not being right.
Good on you for going down the EDS route, it is definitely worth a shot. I don't know why this isn't tested for routinely when there are family members with similar conditions. It would surely save them a fortune in the long run.
Like you, all my tests are always normal and I have had to fight for every last one. In fact, my lung function tests showed I had the lungs of someone half my age. It wasn't until I fought for further testing knowing it wouldn't show up on normal LFT that they found small airway disease. WHY DID THE DOCTOR NOT KNOW THIS???? Why is it left to us to have to push and fight for everything, like we are not exhausted enough. It all makes me so angry. I have noticed this even more so this last week with all my autonomics messing up. Doctors just can't make the connection. You have ibs, a bit of tummy irritation or you should eat something. I can't eat or I would and it is not ibs!!. My stomach has stopped functioning, that is not bloody ibs. Grrrr. I am just going round in circles.
On top of that my sjogrens diagnosis is being seriously questioned as there is just no evidence to suggest it even exists let alone is causing any of this.
I so agree that a diagnosis is important. Maybe not so if it is a clear cut straight forward case of a mixed connective tissue, but when other things are involved it makes a big difference. In my case, I need to know for my daughter who is recently married yet scared to death to even think about starting a family with all that is going on. I just want her to be able to do what other young women do and make plans but even that is being denied her at the moment. She watched my mother die with a pseudo obstruction and cardiac arrest and then while suffering her own stomach bowel and heart issues, watches me grow weaker and weaker with gastroparesis or whatever it is called and a fluttering irregular heart. We need answers so yes, I definitely agree with you there. It is vital in some cases.
Personally Twitchy, I wouldn't worry about being bothersome or feeling humiliated, you deserve answers and have a right to know what is going on in your body. xx
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