I have been diagnosed with fibromyalgia in 2019 it has just been reconfirmed now by a second rheumatologist in March 2021. I cannot understand how someone who does suffer from the condition can understand how really debilitating this disease is. The very time I had an attack or episode I had no idea what was happening my joints my wrists, knees and fingers as well right into my elbows and shoulder blades were red and swollen stiff i went to my Gp and he said that I had some sort of an infective arthritis by the looks of things. At the same time I was admitted they ran a series of autoimmune tests i have had this battery of tests before since one of my identical twin son's died at 28weeks gestation and I had to deliver his brother by emergency c-section because a blood clot formed in my placenta and passed down his umbilical cord cutting off his circulation for 10yrs i was put on covocort and dx with Addisons disease on the 5th of January 2021 I was told I have fibromyalgia and antiphosolipid syndrome, so what advice can anyone give me? I feel like running to the hills a nurse myself no one really has been my patient advocate through all these years?


  • Aj_x
    Aj_x Member Posts: 206
    edited 21. Sep 2021, 12:18

    Hi @Jasmine_2021171830

    It must be so difficult to have Fibromyalgia and not realise what the disease is and how it affects you.

    Fibromyalgia is thought to be caused by your nervous system. I will attach the link to the Versus Arthritis website regarding Fibromyalgia for you to have a look on. I have also attached the link for Antiphospholipid Syndrome as well.

    It would be really lovely to have a look around the forum as well as there are other members with Fibromyalgia. Have a look in some of the other Discussions. We are all very friendly and one big family.

    Take Care & Stay Safe


  • GrandmaT
    GrandmaT Member Posts: 13

    Hello Jasmine, I can offer you my sincere sympathy as I have recently been diagnosed with fibromyalgia after years of being treated for a lot of the individual symptoms with no effect. I also have osteoarthritis. No GP has tied the symptoms together into a group that makes sense. It doesn't help to know that fibromyalgia is not fully understood or that the treatment amounts to self management. I am struggling to come to terms with that.

    And I question the thinking that lists depression and anxiety as a physical symptom ,when I find it is as a result of having to live with the other symptoms and getting no relief! I may be wrong but that's what it does to you!

    Basically it means that we have to summon up all the determination we can muster just to get through a day and that is so difficult. This site is really good for support and I have found that the exercise programme with Leon helps me get moving as I can do whatever I can manage and leave the rest. When I am struggling to deal with the pain and exhaustion I try to keep a diary of positive things I have achieved even if it is something other people wouldnt think of as an achievement. When I read my diary it helps me to keep going.

    I am also in touch with a local support group that are very supportive so it may be worth looking online in your area. There is a lot of support out there because we are not alone!

    Sending big hugs.