• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Symptom update/when the doctor utters 'fibro'

Well, after a couple of bad days in a lot of pain and calling up for a doctor to come out to the house, I finally got to speak to a doctor... and I felt like she listened, heard me. She was here for an hour, a good 30+ minutes more than I expected from a home visit, and she read my list of symptoms, pressed the muscles in my back (I said it was my arms and legs that were bothering me), and took my list with her. She mentioned 'chronic fatigue' 2 or 3 times and said 'fibromyalgia' at least once, which I took as a great sign :thumbsup: that I wasn't being dismissed as mental, depressed, what have you. She said I need a blood test and reflux medication. I got the reflux meds, which dissolve in water, haven't started them yet... I used to take them, but can't swallow tablets any more. I'm still waiting for a blood test form so I can actually get this blood test... she also said she'll contact the hospital. Get them moving.

I feel very faint in the heat, I'm always scared, with my head, that I might actually drop one day... my head is... funny. Sort of light... it's not new (it's been like this for years), but it's much much worse than ever, and I feel like I have to drag my legs when I'm walking, because it's like my legs suddenly turn to lead, or I'm wading through treacle, like my body is mechanical and my brain is struggling to move the muscles. I think it starts with my head... but I'm not sure. It's hard even for me to know what's going on.

I wake up with my arms, back, and neck in so much pain, and to a lesser extent my legs, like I've been badly beaten in the night. Yesterday the pain was terrible and I could hardly walk as I tried to make breakfast; I was wobbly, off balance, my back hunched over. But it eases later.

There is another thing I want to write about... but I will write it another time... perhaps. If I decide it's safe for me to ask, to confess, to put out there for advice and admit to myself, as a real issue.
  • Like
Reactions: Wolfcub and alkt

Comments

I am very glad that at the very least, she did listen, and read your list, paid attention as you deserve, and took your concerns seriously, and took some actions. I am sorry you have been feeling so terrible.
 
I feel very faint in the heat, I'm always scared, with my head, that I might actually drop one day... my head is... funny. Sort of light... it's not new (it's been like this for years), but it's much much worse than ever, and I feel like I have to drag my legs when I'm walking, because it's like my legs suddenly turn to lead, or I'm wading through treacle, like my body is mechanical and my brain is struggling to move the muscles. I think it starts with my head..

Possibly low blood volume with POTS can cause that. If you have not had had it checked out by a tilt table test.. maybe see if a doctor can do a test for POTS in his office. (you'll probably have to take in good info to him on how to do it or find one who knows the condition)
 

Blog entry information

Author
PoorlyPixi
Read time
2 min read
Views
1,498
Comments
4
Last update

More entries in User Blogs

More entries from PoorlyPixi