If anyone on here is suffering from this, I really need feedback for her.
She is 47 and has been diagnosed since age 8 1/2 with fibromyalgia. This is longer than most on here.
This has been shocking and unexpected to both her and myself.
She had the flu and norovirus at Christmas.
She then got both a fibromyalgia flare and CFS.
She has been having joint pain for so long.
She has trouble going up stairs and has arthritis in her knees.
The rheumatologist said that she has extensive psoriatic… read more
Answer Summary
Members rallied around someone seeking guidance after their daughter received a shocking psoriatic arthritis diagnosis at 47, having lived... Read more
Haha, I get it Lore. It’s a triggering topic hearing of others having a late or delayed diagnosis.
Especially with a condition like PsA where the damage is considered permanent.
I was 39 when finally diagnosed myself. My rheumatologist estimates my onset as pre- adolescence.
To the point though, an Antinuclear Antibody test looks for antibodies attacking the bodies tissues. It’s used for conditions like Lupus, RA, and many other autoimmune diseases.
However, you can still have an autoimmune condition without a positive ANA. And in the case of conditions like PsA, they are often seronegative. It’s considered “clinically silent”, which lends to a delay in diagnosis.
🤓💛
I am lifting her up in prayer as we speak @A MyFibroTeam Member
@A MyFibroTeam Member
She is my daughter.
Her name is Alanna.
I will encourage her to join.
You have all
helped me gain so much information.
Many thanks.
Sue 💜💜💜
I’m with Peps- I hope you’ll encourage her to join herself.
I think it important to have a support team of people who are going through the same thing.
I have PsA Spondylitis and have had it since childhood along with FMS and Endometriosis, despite later diagnosis's for some.
I am not on any meds and control my flares with diet, exercise, sleep, and stress management.
Which sounds easy enough in a sentence, but it was hard work getting and keeping things in balance especially as I’ve aged.
PsA is closer linked to the gut so nutrition is a great place to start. And getting that sleep back to normal will help a lot.
It’s a lot to take in and digest, but taking small steps here and there add up.
I’m different on the exercise though, but I do think it’s key. With hyper mobility and enthesitis, that often goes along with PsA, yoga and most exercise was a disaster for me.
Happy to talk to her, listen, and answer any questions. Tell her to come on over. There are quite a few of us on here with PsA of some sort.
I’m not on it any longer, but there is a myPsorasisTeam as well. 💛
Its hard to deal with a new diagnosis chick.
All these things are very much the same. Eds is passed on by 1 or both parents. Once you have something like that (I don't know if she is the same as me) I believe as my joints have dislocated so much expecially In my back and knees elbows. My discs in my back have been dislocating for years and my right knee since I was 8yrs old. So you have bone on bone rubbing together and the older you get obviously the worse it gets osteoporosis. The bones become more brittle and the pain alot more pain. I sometimes wash my hair over the bath and that can cause a disc to dislocate I'll hear it crack then crack back. When bone is rubbing on bone it wears the bones down. The only time I now do my hair over the bath is when I'm.colouring it. I have many baths as hot water helps so much. The hands can spasm as can the feet. Cramps in the calf muscles. I use a tens machine everyday. My days are not like people's normal days. I'm.awake most of the night with pain your friend is probably the same. I sleep early in the morning and wake around 10.30 it takes a few hrs to get me going as P.O.T.s is also a problem with the Eds. I've stopped panicking I've stopped getting anxious. My body will do stuff in time and we must give it time to function. I always have a bath after making a coffee as it helps so much. I slowly do everything like housework so on. I like to get that stuff out of the way before I take a walk.or go shopping. One thing that is really important and that is keep the faith in yourself. I step.at a time. I do work out. So I keep as mobile as possible. I do not push past the pain. Simple slow exercise like Tai chi and yoga are helpful. I know how painful it is and I know how frightening that can be. That's why it's so very important to have faith in yourself and go at your own pace. I hope she feels better soon. My heart goes out to.you both. Things do.get better. Keep the faith ❤️💖💕 with so much love and prayers sweetheart Peps ❤️