MCTD (Mixed Connective Tissue Disease)

It's really hard to tell you how I deal with fatigue. It can really get you down and I am being as honest as I can be. Rest can be a good way to deal with the fatigue you have. It makes me more and more depressed and it can make me quite upset. I am still learning about the MCTD and any input on it I would be very grateful so I can learn more to understand this disease. On my bloodwork, my level was 100. The value is supposed to be 0-19. Mine is pretty high. Ugh!!!

Hello. I just got diagnosed with MCTD. I had been feeling very tired and had no energy. I was noticing that my body was aching for no reason. Right now I am waiting to see a Rumitoid Dr in June. Thats the earliest I can get in. UUGH. Been reading about this and it is very scary. I am 52 and feel like my life has been turned upside down. I am not where you are and I can still get out of bed but the aches and pains through the day is driving me crazy. My shoulders and arms ache the most right now. When I go anywhere my legs and hips hurt. So here I am in limbo for over a month. I hope your days are more better than worse.

I was diagnosed with giant cell arteritis ten months ago and had my first appointment with a Rheumatologist last week. What is MCTD?

Hi @imjustmissy and @captainkenny- Welcome to Connect!

Missy, sorry about your new diagnosis- and Kenny, you too. I hope you can both spend some time looking around this community. You will find a ton of great information and very kind people- willing to share their stories and what they have been through, medically. I find it encouraging and easy to relate when I read a post about someone who has been living with a disease and they talk about how they get through. Peace to you both.

Missy, here is some information I was able to find on Mayo Clinic's .org site on MCTD- https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/diagnosis-treatment/drc-20375152

Kenny, how did you first appointment with your Rheumatologist go?

Mixed Connective Tissue Disease

Thank you for your post. I don't get to see my Dr till June. Just want to know what I'm up against and what to expect next.

It went well except it’s been six days and still waiting for approval from my insurance company for Methotrexate.

After being treated for an itchy rash by a dermatologist for six months, including lots of blood work, two biopsies, and several meds to determine if the rash was a result of an allergy from all the meds I take, or related to my Giant Cell Arteritis (temporal). It was the right decision to start seeing a Rheumatologist, who regularly works with autoimmune disorders. I feel more confident with his care. Based on my pathology reports and initial exam, he added Methotrexate to my list of meds, which I started taking last week after my insurance finally approved.

I know everyone has different symptoms at different times. I am not having to much problems with my hands yet. Some soreness and a few of my finger tips has numbness. My main thing is aches and pains in my shoulders. I usually have a headache every day. I have had some days that I felt pretty good but by the end of the day I am exhausted. Ive also had some pain in my legs like I have done major leg exercises. I'm just venting. would like to have more discussion with anyone that wants to chat. It feels like I am a lone wolf in my family. just feel like I can't talk about this because no one knows what I am feeling. ok thanks for reading.

I know how hard it is when people don’t understand the fatigue. I have learned to set boundaries up for myself and limit my activities. I avoid stress, eat very healthy food and do stretching exercises and yoga. I am proactive and try to stay rested and being aware of my limitations has helped me decrease the number of days I feel fatigued. I go to physiotherapy which has helped with the numbness and as soon as my rash starts to show I take that as a warning I’m doing to much and I reduce my activities. Everyday is a new day with a variety of challenges but it is. Ice to know we can share on this forum.