A few ago months ago I was a beaming Bride-to-Be, planning day in and day out, trying to ignore the pain and swelling I was having in my hands. As the pain got worse, my fingers started changing colors, and the swelling reached a point where I couldn’t even get on my engagement ring. I decided I should probably go see the doctor.
My doctor kept saying that I probably just had a bad case of Raynaud’s (bad blood circulation to your hands and feet) but I just didn’t feel right. I was tired more than usual, losing hair, sleep, and my joints ached. My hands were excruciatingly painful, my thumb especially, it would lose all feeling, and I started getting severe tissue damage. I asked to see a specialist and my doctor finally agreed.
The Rheumatologist took one look at me and knew it was more than Raynaud’s. After more blood tests than I can count, I was diagnosed with Multi Connective Tissue Disease (Scleroderma, Lupus, and Polymyositis all rolled into one disease – primarily, I have Scleroderma). I was blown away! No one had ever had auto-immune diseases in my family, and I was always very healthy, even through childhood. I was immediately put on 5 different medications, and have monthly visits to my Rheumatologist, and of course monthly blood work to see how the disease is progressing. I have to wear gloves and keep my self bundled/warm at all times; I really had to change a larger part of my life style.
I have now been happily married for almost 3 months! The disease has set us back financially and, of course, constantly keeps my wonderful Husband, and myself, worried but I know I will make it through this! I have family and friends who love and support me and, of course, I have my amazing husband to hold my hand through it all! I love him so much and will never let anything, not even a disease, take me away from him! I will ”Fight like a Girl” for him, my family, and myself!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
I too have MCTD. I also have an under active thyroid gland, fibromyalgia, swollen glands everywhere and trouble with my tum – check me out I’m a lucky thing!
Anyway here’s some things that I’ve found to really help –
A SAD lamp – cured my insomnia straight away and no more antidepressants needed.
A diet free from gluten, lactose and unfortunately alcohol. I’m still having trouble with the latter 🙁
The biggest thing and I mean the worst is processed foods and refined sugars. As soon as I eat sugar my joints hurt and swell and the tiredness is unbearable.
Wishing you well x
Thank you for sharing your story. It is inspiring! I have recently been diagnosed with MCTD. The physical problems are very frustrating. I have not been put on any medication specifically for this disease yet. Your symptoms are very similar to mine. Good luck to you!
Hello. I too have mctd. Recently calcinosis has occurred in my elbow area. Anyone know of a cream or oil that can help to reduce the nodules? I also took the natural course after years of drugs and do much better. Instead of mainstream meds I am juicing and vitamin. My naturopath in dc has helped hugely.
He calcinosis is new for me and I’m really trying to figure out what to do to reduce the size.
All ideas would be great. Good luck all
Hello. I have the same cluster as you…. Scleroderma, Polymyositis, and Lupus. I was diagnosed in 2001. I would strongly recommend that your husband get involved in support groups for those with spouses that have chronic illnesses. Build a great support system for you and rely on it!