Hi, I'm new to this site and sites like this in general but I'm at a loss and seeking some advice.
Over the last year or so I've been diagnosed with an undifferentiated connective tissue disorder, Raynauds syndrome, Sjorgrens syndrome and I also have rotated patellas (twisted knee caps). I should also mention that I have quite bad emataphobia due to a procedure that went wrong when I was a child which causes severe anxiety attacks when I feel nauseous.
This is all something I've pretty much known about since I was a child, but only really looked into getting a diagnosis when things started to worsen about 2 years ago.
I'm only 28 and at the start of my career after years of university, I'm recently engaged and saving up for a house with my fiancé so my life was going quite well. I have been dealing with everything that's been thrown at me so far with a smile and cheerful attitude, but over the last 3 months or so I've started having severe dizzy spells that are now affecting my day to day life worse than anything I've ever had previously (I say dizzy but it's more of a constant unbalanced feeling that sometimes progresses to dizzy and faint spells).
My managers very kindly allowed me to work from home the odd day when it's really bad so I don't have to drive and for the ridiculous amount of hospital appointments I have, but it's getting to the point now where it's bad the majority of the time and dread going back into work which causes anxiety and fatigue.
I'm not sure where to go from here in regards to work etc... I'm concerned that at some point in the near future the arrangement I have to work from home for the odd day is not going to cut it and I don't want to make a fuss or take my manager for granted.
I've been in my current job over a year and awaiting to receive my permanent contract, but because I don't have an actual piece of paper saying permanent on it yet I feel as though I can't say anything to HR or go off sick etc for risk of loosing my job or feeling as though I'm 'taking the mick'.
Has anybody else been in similar situation and how did you deal with it in regards to work?
Also has anyone else had this unbalanced/dizziness with any of the above auto immune diseases? I've been taking Betahistine for it and have been given some exercises to do but to no avail unfortunately.
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Croft1987
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I'd recommend getting tested for coeliac-related antibodies. Gluten Ataxia can cause this sort of dizziness, along with other symptoms (tingling in hand/feet, unsteadiness when walking, fatigue) verywell.com/what-is-gluten...
The good news is, if it is gluten ataxia, a gluten-free diet can help a lot. But don't go GF until you've been tested.
Hi, Thanks for the response, I think I was tested for coeliac at the start of all my investigations a couple of years ago and it all came back fine (although I am lactose intolerant and allergic to eggs)!
Might be worth being checked again though, thanks!
I get dizzy spells intermittently....no idea why though as it comes and goes. Have to lie down but it isn't really any better but it stops me falling over. I know it must be disruptive to your working life and wish I had an answer for you but....have you had your ears checked out for infections....have you had your tablets side effects checked out....etcetera! I have Systemic Sclerosis so I think it might have something to do with autoimmune disease.
Wish I had some answers for you but best people to give answers is your rheumatologist....hopefully! Good luck going forward!
Thanks for the response! Nice (technically not nice) to know it's not just me!
I went to an audiologist this week and she's said that it's definitely nothing to do with my ears and balance etc... I do wear glasses so that's my next port of call to see if it's associated with my vision.
I had an MRI a few months back to double check my brain too and that all came back clear.
Hopefully I should have an appointment with my rheumatologist coming up!
Interestingly enough though I haven't been diagnosed with systemic sclerosis but on my last report it was stated that I have some of the 'signs' of it developing so it could be related!
Hi, When I was new to all this I had dreadful balance issues and had to move my head around very slowly to look at things or I would get dizzy. I am on a few closed FB groups and it is quite a common symptom of this disease. Once I saw a good rheumy and started on some medication my symptoms lessened. It is vertigo but caused by sclera. Make sure that you get the best experts in your area as my docs know very little about this. You can check on the sclera site and they have a list of consultants. Don't be fobbed off you can ask for a referral to whomever you wish.
Thank you that's really helpful, I've been racking my brain to think what it might be if it wasn't related to the auto immune side of things!
I'm off work sick at the moment but it's really been getting me down and feel like I can't even leave the house now! I go on holiday in a few weeks and I'm so anxious about how the planes going to affect it that I'm tempted to cancel!
If you don't mind me asking what were you given to take? I've been taking Bethaistine Dihydrochloride but I don't think it's doing anything useful.
Hi, I was started on Methotrexate to try and halt progress of the condition and it did help. I have had other treatments over the last 3 years but as each of us is different I don't want to influence you. I am still on Methotrexate and with this drug I have to have monthly blood tests at the GP,s. Feel free to ask questions and I know what it is like to feel down at times. Good luck with the doc
No that's great thank you ☺️, it was more to let myself know there's other things out there if all else fails (if that makes sense)!
Been to see the doctor again tonight and had all my bloods re done, he confirmed that it is systemic sclerosis and he's changed my medication to stemitil to try help with the dizziness.
To be honest the whole conversation has scared me a bit as I didn't realise things were that bad! I've never looked into systemic sclerosis because I didn't think it was a possibility and some of the stuff on the internet about it makes for damn scary reading!
He's recommended that I go private to get it investigated further, apparently I'll be a hot case because I've started with it so young!
Vertigo perhaps ? - my boss has it and she had an associated autoimmune condition. Or pregnancy - have you checked yourself?
Try not to get too anxious (i know it's nOt easy) but it vertainly doesn't help. Keep researching and investigating - try to get in touch with the best rheumatologists. Life will sort itself out - don't be shy to be honest and upfront at work. If this job doesn't work because of HR issues - then it's not the right one for you in the long run. You will find something else! Stay strong and be positive.. things will turn for the better
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