MCTD help please...

[MCTDGus]

Hi, I was diagnosed with Mixed Connective Tissue Disease approximately 7 years ago, following 5 years of being treated as a hypochondriac by my then GP. I was put on Hydroxychloroquine which I tolerate fairly well, however I seem to be going from one flare up to another despite being medicated. I am back on a tapered dose of Prednisolone, which is gradually easing this most recent flare. However I am scared because of the unpredictability of each flare which have thus far affected my joints, muscles, lungs, swallowing and most recently my stomach.

I am a senior teacher and am not coping at all with the stresses and the strains of my full time job. I feel that I am dying, that there is nowhere to turn, no one seems to understand the constant pain I am in or indeed the worry when something else is affected. My consultant 'shrugs' when I tell him of the problems that I experience and I always get the impression that it is okay for me to go in and say that everything is fine, but not to tell him my full symptoms as he sighs and tells me how I am tolerating the medication well and that he will see me in 6 months - nothing more.

My elbows will 'stick' in one position regularly, my joints all over - including my neck are painful, I have regular flu type symptoms, pains in my chest, a constant pain in my right shoulder, problems with my hips, dry eyes, mouth ulcers all the time, ulcers in my nose, hair loss, bloating, feeling full, incredible fatigue and problems sleeping. Skin rashes appear at times but are infrequent.

No one seems to know very much about MCTD and I have never met a fellow 'sufferer'. Is there anyone else out there like me? Is it right to feel like this all the time with no release? Surely I should have periods where things are fine like I did when I was first diagnosed?

Any feedback, help or advice would be much appreciated.

[Hidden]

I can certainly relate to a lot of the symptoms you mention and no, you are not alone. I have SLE with Rheumatoid Arthritis which does require constant management in order to stay reasonably well and flare free. Switching to a more sympathetic GP might be one way forward. There are treatments available for dry eyes ect. For example; I use Lacri-lube which I find pretty effective and this is available on prescription.

Keep a daily health diary which you can show to your GP/Consultant at your next appointment. It can help also help you to identify where you might need to make changes in your lifestyle for a while.

Try to look objectively at your current work situation. Is your employer aware of your illness? If they are, are they offering enough in terms of adjustment. e.g. Are there pieces of work that could be delegated/relinquished? Have you considered building in rest/relaxation periods throughout the day or would it be worth taking a reduction in hours, perhaps? It's really important to address the stresses and any underlying depression as this is sure to exacerbate symptoms, like fatigue. Most GP practices are able to offer reasonably quick access to talking therapies etc.

I wish you all the very best and hope things ease up for you soon.

Valx

[MCTDGus in reply to Hidden]

Thank you so much Val, I will certainly start keeping a more rigorous diary re my symptoms. I have thought about getting a second opinion from a different consultant as I don't have a lot of faith in my current one, particularly as he makes me feel like I shouldn't have the symptoms that I do. He also says that he doesn't know why I have the pains in my shoulder, but hey ho...

I truly believe that my work is impacting seriously on my health. Unfortunately having a husband with his own business (estate agency) and me being the one with the main income at the moment and with us having 4 children, I feel I have little option but to work the ridiculous hours that I do.

At least the mini Ofsted is now over today so the additional stress of the last 7 days is at least at an end for now.

Really appreciate your support and hope you are well.

Keep in touch

Grace xx

[Acorn1]

I understand what you mean when you say you feel like you're dying, the symptoms can get so bad that I feel surely my body will give up soon. I wanted to pick out a couple of your symptoms instead of treating them as one big cluster.

I've just finished a night shift and was too tired to prepare myself any lunch to take with me so I just had brown toast and wheat cereal, and god don't I know it. All night I've had severe central chest pain and bloating, it was unbearable. If only I'd have taken just fruit or some soup. I'm sure if I radically change my diet some of the symptoms will subside.

I get nose sores when I'm feeling really low.

I have a constant pain in my right shoulder because the Lupus makes me feel so unwell I walk around hunched up all the time as if trying to get into the foetal position! Massage helps alot.

Sjogrens syndrome gives me dry eyes and dry mouth which as Val says can be treated with stuff from your docs.

The fatigue is the worst thing because I can't be bothered to look after myself properly and the mind fog makes things far too hard to deal with so I just muddle through. But things have to change. You've done the right thing writing down all your symptoms so you can see them as independent symptoms to be treated rather than one big ambush.

The worst thing is having to work because we have no choice. Last night I just wanted to come home and go to bed, I'm considering dropping my hours or even completely changing my career which is hard as it's taken me 10 years of hard work to get where I am, but something has to change before I completely loose my mind!

I'd seriously consider changing your consultant.

I just wanted to empathise with you to let you know you're not alone, now off to bed.

xx

[MCTDGus in reply to Acorn1]

Thank you too Acorn1, in an odd sense it is good to hear that we have such similar symptoms and that (hopefully) I haven't developed some additional hideous illness on top. I too suffer with diet and was diagnosed by an immunologist as being wheat and nut allergic (as well as latex) and dairy intolerant. I also have asthma, hayfever and eczema. I later saw an allergy doc who advised that the Hydroxychloroquine should have a positive impact on my allergies... I suppose I can get away with eating a little wheat, but boy do I know it if I overdo it! So I know exactly what you mean about the chest pain and bloating. My face puffs up too!

I've never been diagnosed with Sjogrens syndrome. Before being diagnosed with MCTD and taking Plaquenil it used to feel like my eyes would rip apart. I would wake up at night and it would be awful, feeling like I had sandpaper in them or by just moving them they would crack. The optician once mentioned that I would need artificial tears, however my consultant seemed annoyed when I mentioned this and begrudgingly prescribed something, but I felt so bad I didn't use them. It had improved but recently has returned, enough to be uncomfortable but nowhere near as bad as it was. My mouth is dry though...

I agree, fatigue is unbearable and I fully understand the mind fog you refer to. I used to be completely on the ball and now I get so frustrated with myself for forgetting so much! I have only told a few trusted colleagues about my condition. I teach in a very large secondary school and I am not sure how sympathetic the 'powers that be' would be if they knew. I know about disability discrimination, however do I fall under that category? With the current climate as it is, I constantly worry about having to keep up and ensure that nothing slips, but I am tired... more than tired and sometimes, like you, I just can do no more. Sometimes I'm so tired I shake and throw up. I have to work. I have 4 wonderful children. My husband has his own business (estate agency) which has taken a real battering in the current climate. Initially I was very optimistic and would breezily say 'at least I'm working!' Now, 4 years on the optimism has gone and I feel if I do any more I will die.

A dreadful sign of the times, but at least I've found this site now to give and receive support. Sometimes that is all you need to pick yourself up and carry on just that little bit more.

Thank you for being empathetic, I really appreciate it. I do hope you start to feel better soon too.

Keep in touch

Grace x

[kittykat68]

hi ladies, this site is brilliant as u dont feel totally alone anymore, i to keep a diary and i dont let them brush me under the carpet, every hospital bisit ir dermy/rheumy/throracic meds i ask them to copy me in on my results, i have my full medical history for the last 12 years, i dont trust any dr or consultant and i m sure like a lot of us lupuys r , i take over a hundred meds a week, ever now and then i rebel and dont take then but my god do i know it the next day, ive alway worked up and till 2 years ago even though im a lone parent with an autist 14 yEar old , i even worked at the job centre many years ago, it sickens me the way we r treated and i educate anybody and everbody about lupus x

[MCTDGus in reply to kittykat68]

Hi Kittykat68,

Apologies for taking so long to respond...

Agreed, this is a wonderful site for support, I only wish I'd joined it ages ago! It's amazing how many people are in the same boat and although it's very sad to hear the similar stories of a lack of medical empathy and understanding, it's a huge comfort to know that actually the symptoms we are experiencing are pretty much the same.

I am keeping a detailed diary now and have done for a few months. I looked through it the other day and realised that even the minutest detail is common in each flare up, even if a different part of my body is affected.

It is frustrating that the medical professionals who are treating us do not always have the knowledge and understanding to reassure and explain what we are going through, which in turn leaves us feeling understandably distrustful. It is important that they are fully educated in lupus and lupus disorders to accurately educate us, emotionally support us and ensure that we are confident that we are receiving the best possible treatment.

phew... off my soap box now

Hope you're going through a good phase at the moment.

Grace x

[Samx]

Hi Grace,

I was told almost a year ago that i had mixed connective tissue disease, my rheumatologist only recently told me its actually lupus, i think there's a really fine line between the two of them, i never had any of the symptoms of scleroderma or myositis which are commonly part of mctd along with lupus. I have high levels of a lot of autoimmune antibodies so i think he was playing it safe with the mixed verdict! I can completely relate with a lot of what you are saying, i have constant flare ups, there is not a lot of information or suport for people with mctd, i think its an even more confusing disease than lupus!

Maybe get a second opinion. I'm going to go to one of the support groups for the first time next month just so i can meet other people going through the same thing as i don't know anyone else with this. Maybe you could do that too if you haven't already it might help you feel less alone.

Hope you start to feel better,

Sam x

[MCTDGus in reply to Samx]

Hi Sam,

Apologies, I've been up to my eyes in work over the last few days and haven't managed to log on. Thank you so much for your response. Yes it is incredibly frustrating being given the MCTD diagnosis, I don't have the symptoms of scleroderma although with the constant pain in my joints, organs and muscles, I'm not sure if that is the myositis. Either way, I am worried about the constant flare ups and the affect it is having on my body as a whole.

I would like a second opinion and discussed this with my GP just over a year ago when I had a really bad flare. It just so happened that my consultant was particularly helpful and understanding when I went to see him a week or so later. (Probably because I had been due to see him during my flare and he cancelled my appointment due to annual leave but failed to tell me. I turned up to the appointment, scared as to what they might find, only to discover that he wasn't even there. I complained to his secretary and advised I would take it higher. I got another appointment a few days later, so I never did complain.)

I'd like to try a support group but I'm not sure that I'm that brave yet... stupid, I know. I suppose if there was one in the area I would go, it's just finding one and having the time to make the effort.

Hope you're well.

Take care,

Grace x

[Amj781]

I have your same symptoms. I was diagnosed 7 yrs ago. I was first diagnosed with polymyositis.

[KarenC]

I was diagnosed with MCTD and Lupus about 8 months ago, I can't believe how bad the symptoms have become in such a short space of time. I am in constant pain in my hips, elbows, shoulders, feet and hands. I occasionally get a really severe headache the pain goes down my neck and into my shoulder. I am constantly tired and understand when you say mind fog I feel fuddeled all the time.

One good thing is my Rhumatology team are brilliant, I can ring them anytime if I am worried and they see me every month for blood tests (because on methatrexate) and my consultant every three months. My GP surgery is great as well so feel very lucky. I have just found your site and until now had not found any body else with MCTD so don't feel so alone now. I can understand when you say about work I had to give up my business about six months ago because I just could'ent cope anymore.

The stress you are under must be a nightmare, and not help with the MCTD syptoms but Try to find a good consultant then you may get more help with the condition.

Take care hope you doing ok

Karen xx

[jetchickwithmctd in reply to KarenC]

Hi Karen, I'm Lisa. You describe my symptoms. Sadly, I too had to give up work. I tend to pass out when I dont keep my fatigue in check. Do you? Unfortunately Methotrexate increased my pain and stiffness, weird. How are you feeling these days?

[KarenC in reply to jetchickwithmctd]

Hi Lisa, hope you got my message, not sure if I sent it, another syptom so forgetful.xx

[jetchickwithmctd in reply to KarenC]

Yes, I did. Thanks so much! I noted your symptoms came on quickly. Mine were low lying for 25 years. I too was treated like a hypochondriac and trudged on through life passing out here and there when symptoms became too great. Anyone else pass out/seizure?

[USAhousewife]

MCTD seems like, at times, worse than a death sentence. . . No end in sight to the painful crap w have all day every day. It can be depressing, to say the least. The best treatment I have had is the weekly Enbrel injections. The injections don't cure, but sure do lessen the many symptoms. Between the injections, Prednisone and pain meds life is 1000 times better than without. My first Rheumy told me IF I would take the meds he Rx'ed, do my joint exercises everyday, he would keep me out of a wheel chair. I followed his advice and though he has passed away 20 years ago, his methods still work. I'm not talking serious exercise, just moving fingers, hands, feet, etc everyday.

[jetchickwithmctd in reply to USAhousewife]

How are you feeling these days? I've known I've been sick for 25 years and diagnosed 3 years ago. Every 3 months a new med to try and lessen pain and fatigue. Next up is Enbrel. Can you share your experience with it?

[jetchickwithmctd]

Hello, I'm new to the forum. I'm 49 years old. Flares since teens. Diagnosed MCTD 3 years ago. I don't know anyone with my diagnosis. I'd love to share insight and learn more about the disease. I agree, low dose daily Prednisone and pain meds have given me part of my life back. My new Rheumy prescribed it. I agree having a Dr who you connect with can make a huge difference. I also agree daily range of motion movement helps. I was sent home from work a year and a half ago and have not been back; just too sick.