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I have lived with EM/FM for over 30 years. Know my body well. Have experienced countless flair ups. Some have been really bad; but I always recover to my normal Fibromyalgic self.
I live in Holland where approach to EM/FM is very conservative. Only approved medications are Tramadol/Paracetamol mix and Amitriptyline. And sleep management (I take 2mg of Clonazepam to sleep for last five years, Works well but am aware of problems associated with Benzodiazepines. I only take Tramadol when I'm in pain or have a busy day ahead.
I am able to write now as the doctor has finally prescribed Fentanyl for the pain. This is what's happening to me now. Please, if somebody is familiar with this picture or have some ideas, help me. I'm very, very scared and fear that I will die. I have three young children!
Two months ago I made a 6 week trip to South East Asia, with my family. Although I felt exceptionally well, the trip was extremely demanding and I was physically exhausted. I didn't feel my best in the weeks following the trip. But it was not terrible either. So I was happy I decided to take the plunge and make such a trip.
However, las week I had the worst flare up that I had ever experienced. Every part in my body that usually causes pain (lower back, knee, hips, ankles) became exponentially painful. And new pains arose. All joints and muscles hurt non stop. Then the skin started to hurt so much that I would shout if the bed sheets touched me ever so slightly. Also all the mucosa (mouth, nose, eyes, vagina) seemed to be on fire or like scrubbed with sand paper.
I spent about three hours wriggling in pain in my bed; shouting and crying non stop. In a scale from 0 to 10 of pain I was in 9 (9.5 when got pain stabs... it was as bad as giving birth) Finally the doctor (via telephone) prescribed Fentayl (opioid) spray. It took about 20 mins to work but it did. And I could sleep.
In the following days the flare up pain receded, but new symptoms appeared. Mild fever (between 37.7 and 38.5 C). It's not common for me to have fevers. Unbearable throat pain that extended to my ears and glans in the area. We visited the doctor and ad had some bloodwork done. Nothing out of the ordinary. No bacterial infection. told us it may be a virus my body is finding difficult to fight.
It's been a week now and things are getting worse. Symptoms:
-Not so much muscular or joint pain (less than usual)
-Insomnia despite sleeping medication
-Splitting headaches that manage to wake me up when I manage to sleep.
- Fever that comes and goes but is never too high.
- Throat and ear pain (also pain in glans around the area).
- Pain in my skin (in particular where the headache of throat pain is localised)
- Painful cough (upper airways)
- The worst pain is inside of my mouth: mouth roof, tongue, gums
- Facial pain (jaws, ears)
- Plus flue like symptoms.
if anyone recognise this, please be so kind to share. Also if you have some ideas. Never felt this way before. Never was so scared before. Do not know what to do anymore. I'm really afraid that I'm dying now.
In advance, than you for your kind reply and I wish that you all are as good as possible.
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