This message is for the moms with autoimmune disease, who are still navigating the unknown of this terrible health issues, going from one doctor appointment to another, being gaslighted, let down, and who have to keep up at home with the kids and put on a smile on their face to not show too much of your own pain.
How do you do it through all the physical suffering and the lack of hope to ever feel normal again?
Hi! Are there online support groups for people with autoimmune disease ? Are there physical groups in Miami?
Hi all,
I’ve had an immune dis regulation since Dec 2021, positive ANA but no specific antibodies. I do have SFN because of it.
My inflammation was under control until I did 8 months of IVIG last year. Then my inflammation markers went through the roof, my SFN came back with a vengeance ( under control since November), and constant hair loss to the point where I am almost bold on 3 inch in the middle of the head.
Once again, no specific antibodies, no joint pain, nothing swollen, hormones are good, no Lyme or mold exposure. I have been tested for everything possible.
I’ve also gotten an iron infusion in February which has not changed a thing, apart from bringing more inflammation!
Have any of you ever been in this situation? Any advice? I’d like to avoid being on Minoxidil for life. I am sure whatever is going on has to be autoimmune triggered.
Hi! Just wondering if any of you have developed Ledderhose in the feet or Dupuytren in the hands. Those of fibromas growing because of collagen malfunction.
If you do, have you been able to do radiation therapy? Which autoimmune disease do you have?
Do any of you have an autoimmune disease? Have you done RT with this autoimmune disease and what was the outcome ?
Can anyone please recommend a therapist specialized in debilitating chronic disease licenced in Florida?
How to stop pain on the little toe joint outside of the foot and under the little toe?
This starting after walking for a long day in slightly narrower but comfortable shoes eventhough I had no pain while walking, it has been over a week and the pain remains the same. Pain only happens when putting pressure on the side of the foot and walking, not when resting..
I have stopped walking, applied ice, voltaren, taken advil, nothing help.
Xray and MRI do not show anything like stress fracture or tendonitis.
Has anyone had to receive radiation? Has it make your neuropathy worse?
Hi !
11 years ago I had plantar fasciitis that took 6 months to heal with proper orthotics and lots of stretching. In the past 10 years, I’ve had no pain, was warring new orthotics every 2 years.
Last summer, I started having a burning feeling under the arch of my feet. I was walking with sandales a lot.
My podiatrist said that it happens often after the summer to have the aponeurosis inflamed because people walk more in sandales/ flatter than usual.
He made me new orthotics ever and the pain went away.
I have been walking more than usual this year, like around 5 miles a day.
3 months later, the pain came back, this time I could feel a little bump under one foot. Long story short, MRI shows 4 mm thickening, scarring and nodularity of the medial cord of the plantar fascia with several nodules. Tendons are involved as well.
I am freaking out. No one in my family has this!
I am afraid of my plantar rupturing now because of this thickening and inflammation.
I know that surgery is a bad option because they come back and multiply.
I have heard of enzymes injections and radiations as options but it doesn t seem to work for everyone.
Some supplements like nattokinaze and lumbro help
Some people. Verapamil cream for life ….
had no plantar fasciitis pain anymore so I don’t even understand how this can happen.
Can anyone help?
Hi, I am a woman who wide feet, flat feet and plantar fibromas on both feet! Finding a pair a shoes is a nightmare. Can someone please recommend sneakers and sandales. I have tailormade insoles so I need to be able to put mine in sneakers. I know that Newbalance does not work for me because I have tried most of their shoes. I have tried most of Brooks (which I had been wearing for 9 years) and they don't fit me well anymore...