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What could this be?

1 reply

deflatedbirthday · 28/02/2023 17:04

I have several chronic diagnoses which include endometriosis, fibromyalgia and FND.

I have generalised pain and fatigue due to fibromyalgia. This is managed quite well usually. I suffer from restless legs and take Amitriptyline for this which is usually effective and helps with my sleep also.

The FND manifests itself with migraine usually. I experience migraine with aura and silent migraines by way of smell. After any type of migraine I am wiped out the following day. I also experience strange instances when waking up whereby by left arm will not move and I cannot speak for approximately one minute. I have been investigated for seizures and epilepsy which were NAD.

Over the last month the following has happened:

  • I have had several instances where my hand have swollen, have a bright red appearance on the palms and I feel lighted headed and hot. The swelling lasts for minutes to hours. On two occasions this has happened at work and I have been able to take my blood pressure which was slightly raised.
  • I have experienced an increase in silent migraines (smell). I have increased my triptan use in line with advice from my neurologist and although this helps with the length of the migraine it doesn't help the next day fatigue.
  • My sleep has really gone down hill in addition to restless leg symptoms (which have brought me to tears several times). I have increased my Amitriptyline. I am now taking half of the maximum amount I can take as per my neurologist. Whilst this helps with the leg symptoms and sleep, I cannot function on a morning. Tasks take me 2-3 times longer, I feel foggy and emotional.

-The widespread generalised pain has increased from 3/10 to at times 8/10 particularly in my hands, knees, ankles, lower back and neck.

This morning I got up. The pain was unbearable. Despite a full nights sleep I was shattered. I attempted to get ready for work but could not. Luckily it work and manager have been incredible since my diagnoses. I have a very flexible agreement with regards to sick leave to manage my worst days. I have done nothing today but sleep off and on. My DH is WFH and I can tell me is concerned about me. I fell asleep on the sofa and I could hear everything on the TV (and relay this information afterwards) I could not wake up and in my mind I felt like I was laying on the floor. When I came around it was still on the sofa, feeling tingly all over, and I just feel strange.

I have an appointment with my neurologist in 3 weeks. My GP will not advise until I have attended this appointment.

This could be a flare up of my conditions. But something is niggling at me that there is something else.

Sorry this turned into a very long post!!

OP posts:
deflatedbirthday · 28/02/2023 19:53

Hopeful bump

OP posts:
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