Fibromyalgia

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?

Comments

  • Aj_x
    Aj_x Moderator Posts: 188

    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 more of a nerve disease. 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

    @Aj_x

  • 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.