MCTD and all that goes with it!

Hi, after being diagnosed for MCTD with Lupus Myositis, Raynaud's and I don't know how many more on top. I broke my neck as a 14 year old and last year had a Cervical Disc Prolapse due to the old accident, so ended up having a discectomy last Sept on c6/7. My question is this, does anyone else out there have any neck injuries that could have triggered this disease? i also cut though the mains cable into the house (thank goodness I was wearing wellies), I didn't do it on purpose as it was dusk and I thought I was cutting through a large ivy stem underneath the guttering! So thought that could have contributed. Really suffering with shoulder pain, muscle fatigue (cronic fatigue), raynauld's relentless. Every time I sit down I seize up. Is this going to get worse? I am so stiff and uncomfortable! On Hydroxychloroquine only now after a year on predisolone. I am going to physio and doing excercises, they are such small excercises but knock me for 6. I'm on 3 blood pressure tablets and feel so done in. Can't possibly consider a wheelchair in the future as I can't even hang out the washing! I ran the marathon in 2003, what has happened to me, is this the best I can expect from my life now? I was told from my Rheumy to embrace what I have and thank goodness I wasn't getting worse. I'm embracing but I'm on a low, it has been such a huge battle so far. Are my legs giving up slowly? Any answers would be gratefully received x

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I feel for you. Mine seems to have just grown and grown slowly - acquiring more momentum with each flare and misleading all my medical team with each infection or drug reaction. My GP and rheumatologist tell me to "let the dust settle" after each flare/ hospital admission and they take and treat each symptom one at a time. I feel like you - I have RA, Raynauds and Sjogrens and Hypothyroidism. I'm now permenantly wiped out. Even a trip to the hairdresser this morning has led me back to my bed spinning. So you aren't alone.

Hydroxichloraquine might well not be enough on its own to control your MCTD. Can you try and speak to a rheumy nurse or your consultant about the way you are currently feeling? The fatigue is just the worst now for me but I've been off all disease modifying drugs for ages now.

Twitchy

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Hi Twichy, glad you are off the modifying drugs, but so sorry to hear about your admissions and fatigue, arghhhh! I have just had a 6 month review and the Rheumy said that I'm ok so leave it at that. My fingers are swollen and very stiff still and I can't make a fist but he believes it is the best I can be for the moment. They spasm all the time, all day every day but I'm used to that. I'm on pregabalin for the general all over pain so am very groggy! the supermarket and hairdressers are like a marathon! Totally get that! Very comforting to know I'm not alone, but horrid for us all to be suffering like this. Do you know what triggered yours?

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I am only off the drugs because I've failed to tolerate four so far - every rheumy's nightmare patient!

I sometimes wonder if mine was triggered by environmental factors because I am terribly sensitive/ allergic and every time we move I've suffered from these different environments - in the country it was the sprays used for intensive farming all around us so I had chronic rhinitis for example.

The hospital consultant last week asked me if I ever used lead paint as an artist because my symptoms correspond.

But after some hard thought, and chatting to an artist friend who has researched toxicity from chemicals in the work place - we both concluded that it's all down to genetics and childhood illness and trauma in my case.

I never got as far as Pregabalin - Gaberpentin was quite enough. I lasted three weeks maximum! The thing that worries me about this approach of our rheumies is that the inflammation continues to abound unchecked. So we may not see specific erosion or destruction for a while but what is this stuff doing to us while they scratch their heads? So far I've not been a medical emergency but these doctors seem to ride on this and I hope that when we move away the approach is less complacent somehow.

I know that supermarket shops defeat me just now because of the dizziness and fatigue. I'm lucky to have a husband who actually enjoys them! X

[Barnclown]

Hello ladybird: I'm also vvv much feeling for you. I think we probably have quite a lot in common, e.g. I too had a serious childhood accident (caused bad concussion & severe spondylosis in cervical spine...eventually was booked for an NHS double cervical discectomy (1997) but at the last mo managed to get a referral to the Pain Consultant who spent the next 10+ years giving me a series of vvvv effective bilateral cervical, lumbar & sacral facet joint Denervations instead). As I understand it, the damage caused by that early accident has been relevant to the progression of certain aspects of my version of systemic lupus....and yes, me too: I'm v interested in whatever could've triggered my version of lupus + sjogrens + all my other stuff.

For instance, my consultants are fairly sure my inutero exposure to the notorious artificial oestrogen DES (diethylstilboesterol) also played a big part in predisposing me to my autoimmune conditions ....and probably also to my chronic immunodeficiency. I'm 61 and have been dealing with this stuff all my life because I was diagnosed with lupus as an infant & teen (but my mother never told me. And I moved to the UK @ 21 where the NHS treated me for the secondaries but didn't spot the underlying lupus until 4 years ago). My whole body is affected, inc my legs & feet...so I can relate to your question big time....but, hey: having become mainly housebound & walking as little as poss, using a cane, & wheelchair too at times, I'm now walking without aids!!!!

I'll keep this reply relatively brief cause I gotta go to an appt, but I do want to wish you well...there is light at the end of the tunnel...I know cause I've found it & many others here have too...even relative improvement is wonderful....here I am, for instance, feeling less pain etc than since the 1970s....remember: diagnosis & treatment are an ongoing process...a collaboration between you & your Drs & complimentary therapists. This process has ups & downs, like any other process. And meanwhile this wonderful forum is here for you....it's made all the diff to me over the past 4 years and I feel certain it can for you too

👋🍀💐☺️

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Dear Barnclown, my goodness, after reading your comment I want to hug you, I can't believe what strength you have. I have only been suffering for 18 months and I feel so exhausted. I think the Myositis is having a huge impact in my arms and legs and every day seems such a challenge. Thank you so much for your wonderful upbeat reply, it gives me such strength to know that I'm not on my own. I have yet to meet anyone else with my symptoms so thank you 'Heathunlocked' for helping and to you Barnclown for letting me know about you. Huge hugs and thank you for helping, it means so much. Onwards (quietly and gently)! 😊 💐

[Renu]

Hi Ladybird,

I have MCTD (lupus and myositis, raynauds) aswell. I am doing ok. I lose muscle strength in my legs (thighs, hips) with flares and following surgery. I have had four rounds of surgery over the last year or so, so I have lost my muscle strength in my thighs and hips again and have to rebuild a third time since diagnosis. My arms ache so I can't lift heavy things/shopping. I do get really exhausted even after short walks/standing for a given period. I am now using a walking stick (started a few weeks ago). I feel much better for doing so because my pain in my legs has improved since I have been using it. I swim to retain muscle tone, and I think it has helped me keep hold of my muscle strength for as long as I have since diagnosis (5 years). I try my best to remain positive, and I know I am swimming, taking meds, following Dr's advice. Not much more one can do, so I accept the situation and do what I can. Whatever I can't do, I can't do, and has to wait for another time/day (or maybe not) ! I try not to think about it too much; there are so many people so much worse off than me! I think keeping positive makes a huge difference. I developed a rash recently all over my body (allergic reaction) so have just come off azathioprine. Fingers crossed I don't flare! Good luck and all the best to you too. We can definitely make progress and with the appropriate meds, our condition can be controlled/go into remission. We really have to celebrate the good times (periods of remission) and that is how I get through it. It gives me strength for times of flare. Hope my text is of some help to you.

Renu xxx