Mixed Connective Tissue Disease Awarenes
Hello and welcome to the MCTDA forum!
This is a forum for MCTD sufferers, the first of its kind! (to my knowledge).
To be part of our community please click on the register button below.
If you are already a member please login.
For more information on Mixed Connective Tissue Disease, check out the website:
www.mctdaware.co.uk
Please note: this is the first time I have created a forum so if there are any bugs please report them asap so I can fix them. Contact me via email:
mctda@hotmail.co.uk
I hope you find the help, support and information you need and I wish you to be happy and flare free :-)
Abigail -
Creator of MCTDA
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New to Group

Thu May 21, 2015 12:12 pm by leeG

HI All, thanks for letting me join, i was diagnosed two yrs ago, altho had symptoms for much longer and now wonder if the MCTD started in my 30s when i was diagnosed with chronic fatigue. now also have raynauds, hashimoto's, blepharitis (sp?), asthma, and multiple allergies, Plaquinel has amazing effects until i had a severe reaction, and now on Atabrine (quinacrine) but its not as effective. …

Comments: 0

New to group, New to disease

Tue Aug 26, 2014 5:58 am by MissDaisy

Hello,
I am a 36 year old female with 3 boys, ages 4-9, and I work as a 911 Dispatcher. I started having symptoms about 3 years ago starting with lumbar pain. I put it off for well over a year thinking it was just over-exertion. When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. I got to the point that standing, sitting, and …

Comments: 1

How much pain before accepting medication?

Fri Sep 19, 2014 9:46 pm by josephine landau

Hi - My names Jo, I'm 42.
I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic.
I take B12 injections for fatigue, Levothyroxine for low thyroid and Tegretol for an epileptic seizure I had 10 years ago -So I was reluctant to add to my drugs list and I declined any …

Comments: 0

Not yet diagnosed teen from Finland

Thu Mar 27, 2014 6:12 am by finnishgirl

Hi everyone!

I was happily suprised when I found all this great stuff for us MCTD patients! And hope to get to know some people with this illness. Because there's not a lot of stuff for us in Finland.

I'm a 15-years-old girl from Finland. I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. And it seems to be logical, I have …

Comments: 0

Another Australian story

Fri Nov 29, 2013 9:50 am by Ozzie1954

First of all, it is so good to find a forum with people who have been going through the same issues. I was doing a search on earache/jaw pain which is afflicting me this morning and found this forum.

My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens. It started after I had a bout of the flu, went back to work where I was handling …

Comments: 1

New from California.

Fri Jul 26, 2013 10:28 pm by mollyingrid92

Hello! My name is Molly, 20 years old, California resident. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while. When I finally went to see my doctor, he moved my leg around to see how my knee was working. Then he did this weird on where he would put a hand flat on the side of my knee and with the other hand push on the opposite side of my …

Comments: 8

This is all new!

Thu Apr 18, 2013 2:35 am by Admin

Ive never run or created a forum before so there may be some bugs, please let me know as soon as possible so I can correct them! I hope you find it easy to use!
Admin Very Happy

Comments: 9

Hi from Australia

Tue Apr 30, 2013 12:46 pm by gorillagirl

Hi everyone Very Happy

A brief bio. Female, 45, Hashimoto's since young. Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus. Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah.

Found a good GP, …

Comments: 8

Newbie, new to the dx, but not to the symptoms

Tue Apr 30, 2013 2:20 pm by Lenorekitty75

Hello Everyone ! Smile

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have …

Comments: 4

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Latest topics
» New to Group
Thu May 21, 2015 12:12 pm by leeG

» Flare up PLEASE help!
Sat Feb 21, 2015 1:48 pm by aceequine7

» Help with getting a doctor to understand...
Fri Oct 31, 2014 6:16 am by nancehg

» Pain management/plaquenil vision issues
Fri Oct 31, 2014 5:49 am by nancehg

» New to group, New to disease
Fri Oct 31, 2014 5:37 am by nancehg

» Ear ache/Jaw pain - Anyone else?
Sat Oct 11, 2014 8:39 pm by finnishgirl

» How much pain before accepting medication?
Fri Sep 19, 2014 9:46 pm by josephine landau

» Burning sensation and peeling of skin on hands and feet
Fri Jun 13, 2014 4:41 am by Andazi

» Heartburn & reflux
Sun May 25, 2014 8:49 pm by finnishgirl

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Introduction

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Introduction

Post by shyrose on Thu Apr 18, 2013 4:48 am

Hi everybody!

I just wanted to say I'm really excited about this forum as I've wanted to participate more on the facebook page, but haven't for fear of having my name linked to MCTD search results - which might not be the best while job searching! I'm really excited to have a space where I can be involved without worrying about that.

I received positive text results for MCTD last January. I'm still trying to find a good rheumatologist - the last one I saw dismissed me as 'only' having fibromylagia, without discussing my test results. Meanwhile I keep getting more MCTD style symptoms - notably today joint pain and arm numbness/tingling. Lately I've been feeling really down about trying to do deal with near constant chronic pain, and how little relief I'm getting from pharmaceuticals. I'm hoping that by reaching out to you, my internet MCTD friends, I can find some more inspiration to keep going.

Looking forward and a BIG THANKS to Abby for the amazing amount of works she's done with the new FB page, the forum and the website. Wow!

~Rose

shyrose
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Join date : 2013-04-18

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Re: Introduction

Post by Admin on Thu Apr 18, 2013 5:48 am

shyrose wrote:Hi everybody!

I just wanted to say I'm really excited about this forum as I've wanted to participate more on the facebook page, but haven't for fear of having my name linked to MCTD search results - which might not be the best while job searching! I'm really excited to have a space where I can be involved without worrying about that.

I received positive text results for MCTD last January. I'm still trying to find a good rheumatologist - the last one I saw dismissed me as 'only' having fibromylagia, without discussing my test results. Meanwhile I keep getting more MCTD style symptoms - notably today joint pain and arm numbness/tingling. Lately I've been feeling really down about trying to do deal with near constant chronic pain, and how little relief I'm getting from pharmaceuticals. I'm hoping that by reaching out to you, my internet MCTD friends, I can find some more inspiration to keep going.

Looking forward and a BIG THANKS to Abby for the amazing amount of works she's done with the new FB page, the forum and the website. Wow!

~Rose

Hi Rose & welcome! So glad you have joined! The forum is just a baby but is starting out slowly so hopefully the bigger it gets, the more conversations there will be! Smile

I understand with the job hunting thing & not wanting to be associated with MCTD! There is a such a huge enigma with MCTD & working! I've been in & out of work for 3 years since diagnosis!
I was very down too. It can take a while to get used to living with MCTD. I still get down days even now.
I've been getting really bad sciatica as well as the usual symptoms & codeine doesnt seem to help much.
What pain killers are you taking? & what medication have you been put on?
I hope you find a good Rheumy soon!
Thank you for your kind words too I love you
Abby x

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http://www.mctdaware.co.uk

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Re: Introduction

Post by jesszilla23 on Fri Apr 19, 2013 6:48 am

Hi all!

My name is Jess, I'm in the US, and I've been having disabling joint pain, severe fatigue, and numbness/tingling/burning in my hands and feet for about a year and a half now. My rheumy is still not sure if I have MCTD, or just lupus, or possibly just RA, because my antibodies are inconclusive. This forum looks great, and I look forward to getting to know you all and sharing information!

I totally hear you, Rose, about the job search issues - I've been forced out of work by this illness, and I hope to go back as soon as I find a medication combo that puts me back on my feet. The job market here in the US is awful as it is, even for folks without chronic illness. I'm thinking a change of careers is definitely in the cards.

As for painkillers, I know some of the drug names are different, but the active ingredients are the same. I took Mobic for a while, but it didn't work at all. I take Trazodone for sleep, which helps some with pain also. For a while I was taking sertraline for depression, which also helped with pain. Now, I mostly use Aspercreme (trolamine salicylate) and Tiger Balm ointments directly on my joints. At the moment, I'm not taking any oral painkillers - the only thing that seems to work is the prednisone. Taking any kind of narcotics would wipe me out - the brain fog and sleepiness is awful enough as it is.

I know other folks have used duloxetine (Cymbalta), pregabalin (Lyrica), and gabapentin (Neurontin) for pain from neuropathy and fibromyalgia. I haven't tried any of these, and they're generally very expensive here in the US. But they might be worth discussing with your doctors.

Wishing you all peace, health, and success in your various endeavors!

Jess

jesszilla23
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Join date : 2013-04-19

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