Hi. New to this site. Would like to hear what kind of natural approaches to MCTD you have used that have helped you. Also, how do you go about finding a rheumatologist/Dr that is open to a naturopathic as well as medicinal approach to treatment, in the Portland, OR area. Thanks
I recently got a cricut and I'm obsessed! I do have to be mindful not to overdue it though because it involves a lot of small repetitive movements with my hands. These are my first two products to sell!! These gave me lots of joy to make!!
#Fibromyalgia #MixedConnectiveTissueDiseaseMCTD #ChronicPain #Cricut #Crafting #Etsy
Hello, I’m not new to this forum but never posted before. Before I start I want to thank each and every one of you for sharing your stories. I gain so much insight about others suffering from chronic illness and don’t feel a alone in this world because of all of you! I appreciate your honesty, courage and tenacity to live your life hurting everyday and then find the energy to share your story. It is inspiring !
Now for the question at hand… Does anyone have debilitating foot pain with fibro? I have always had foot issues and have gotten cortisone shots in the past for plantar fasciitis but never have before experienced the burning pain that is crippling me at this time. My feet are constantly on fire and are so incredibly sensitive to the touch. It is difficult to wear shoes and walk. I also had Covid in January and it seems to have gotten worse since then? Can anyone relate to this issue? I appreciate your time and look forward to your responses! Gentle hugs and good vibes always🤗✌️ #Fibromyalgia #MixedConnectiveTissueDiseaseMCTD #Depression #Anxiety #
Hi Gina, I couldn't agree with you more on your post. It was so amazingly spot on. I too am a RA/Mixed Connective Tissue Disease/hefty dose of Fibromyalgia. I think the list goes on, but you get the drift. Awareness of our diseases needs to be more visible although im not sure how that can take place. I know about all the drugs and effects they can have on you. But living without them would be much worse. I think a good support system helps tremendously and
I would be happy to leave you my number if you would like to talk. Im from NY state in the upstate region. 65 years old and diagnosed 6 years ago. I owned a boutique at the time and worked 100 hours a week from home and loved it!!! Well the boutique is closed and im fully disabled now. So hit me on my email, [email protected] privately if you want to talk and I'd be happy to visit with you. Best of everything to both of us...Robbin
Gracious, 2022 is starting off with a bang. I was diagnosed with Myasthenia Gravis in January after reporting symptoms, and I told my doctors (Neurologist and Rheumatologist) of new symptoms progressing fast. A variety of symptoms that didnt seem related to any one thing but they’re there. After I got the Myasthenia Gravis diagnosis more of the labs came back and holy crap, it’s positive for Smith (Lupus), Ana Titer Pattern and Rheumatoid Arthritis.
After getting released from the hospital for the second time in 30 days for treatment of difficulty breathing swallowing and leg and arm weakness, my Neurologist and Rheumatologist referred me to a specialist and everyone is waiting on his test they assume he will do after our consultation which will be another 2 months out. As I’m waiting and reporting leg weakness that’s so bad despite the pyridostigme and prednisone I can’t stand or walk for more than 15 minutes tops, they’re telling me to relax. I ask how I’m supposed to get around, be a Mom and go to the zoo, be a wife and do dishes or cook, and they tell me to get someone to help me with it.
I understand the need for an accurate diagnosis before taking a big medication step like a big immunosuppressant, but am I being unreasonable by asking my Rheumatologist to at least look into the Mixed Connective Tissue Disease possibility in the interim? Because she’s holding off on everything entirely until the specialists nerve conduction test comes back.
Its been three years since my last hematologist told me I didn't have systemic mastocytosis and I am finally having my next bone marrow biopsy on Wednesday. By now, my spine and pelvis are damaged from the disease and being denied meds to prevent it from getting worse. Heres to research and the new meds that can save my life!!