Rare Fibro Attack ::: New Symptoms ::: Feel like dying,. Very scared. Please, help!

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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)

-Unusual tiredness

-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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  • Posted

    Hi everybody and thank you very much for your kind concern and all your ideas an advice.

    Yesterday I started feeling better. The pain started going down some days ago but the exhaustion didn't. I also started to display clear signs of a viral infection in the last week and today I felt remarkably better. Think that the virus has run its course. Although the dreadful cough remains. The flare is gone.

    I have attempted to reach out to my GP and ask her to be more pro-active in the management of my FM/CFS and all she does is to (sometimes) treat infections. No more than that.

    I have asked her to be put on a long course of anti-viral such as Nexavir. She absolutely refuses to do that. And she told me that if I want to take any other supplement (except Vitamin D which was found low on my blood work) I was on my own. So that is that!

    I have been recommended three things by a friend who also has FM and says she can not function without it:

    1. Inulin Powder (probiotics)

    2. Glutathione (nebulized)

    3. Immunocal (whey proteine)

    Ot trying the The Methylation Cycle

    Methylcobalamin 1 mg sublingually

    Methyltetrahydrofolate 800mcg (ActiFolate)

    Pyridoxal-5-phosphate 100mgs (50mgs twice daily)

    Phosphatidyl Serine 200mgs (100mgs twice daily) - BioCare

    Does anyone have any experience with this?

    Again, thanks a lot for all the amazing support and warm greetings from Holland!



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