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.

Warmly,

Valeria

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  • Posted

    Hello Valeria,

    ?I have had ME/CFS for 25yrs but never suffered as you described.  The first thing is to try to calm your emotions (I know very hard but your thoughts are making it worse).  The more you mentally check which bits are hurting or not at each moment the worse your emotions are feeling.  I always find distraction is my way of coping the best (and the pain killers). If you are dying it probably already would of already happened, so I would recommend crossing that off your list. That will help calming too.

    ?The best thing is to note when it started and what happened before it so that the doctors can help the most.  I would think it is either your body reacting to a medicine or an illness.  So note when you changed the medicines and how that relates to when the symptoms started / just before. 

    ?Secondly I'd recommend some internet research on if there are illnesses in South East Asia and Holland which have symptoms you are feeling.

    ?Good Luck & stay strong. 

    Jx

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    • Posted

      Hi Julie,

      thank you so much for your kind reply. You are absolutely right. I need to calm down. This has been so unexpected and overwhelming and, the fact that in the Netherlands ME/FM is simply not taking seriously has really freaked me out. I think I will try some mindfulness when I'm unable to sleep. That often helps to calm me down.

      As for the doctors, they will not be of any help and I know that. I have made a fairly accurate list of my symptoms and linked them to a time line. Yesterday my husband took me to the GP (in Holland you only have access to a GP and then, if considered appropriate, they will send you to a specialist) since the fever went up to 41C. I listed all the symptoms to the GP and told her about my concerns. Her reply?: 'And what do you expect from me?'.

      At the end all I got from her was a 'You have an unknown virus. You need to wait for two weeks. Take Fentanyl when needed'.

      So yes, I will start doing some research about possible illnesses in South East Asia and see if something match with my symptoms. If I find something I may be able to give some ideas to my GP...

      Once more, thank you for your kindness and empathy and receive warm greetings from the Netherlands.

      Valeria 

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  • Posted

    Hi.. i would say how old are you? I ask this as i started with the worst flare up of my life also having lived with CFS/MS for over 20 years .. the doctors thought it was just the CFS having a really bad flare etc.. but there where many new symptoms and i was not recovering as i normally would.. Fast forward a few years and i get another huge flare with more weird symptoms and my my periods stopped.  To cut a long story short it was Peri Menopause.  It can start any time from early 40s.. some women even get symptoms in their 30s.  It makes any current illness you have far worse but you also get all the new Menopause symptoms on top of it. There is a really good menopause forum on here and it has a list of all the symptoms that come with menopause. Its been a god send to me as i thought i was goings nuts. 
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    • Posted

      Hello, Little You!

      thank you very much for your concern. I am 45 yo. So yes, menopause is a possibility that had not even crossed my mind. What a scary thought! I am really sorry that it has been so though for you.

      I will certainly take a look ad the Menopause Forum and also make sure to bring it up with my GP (not that I expect much from her...). I think it's time to do some research about it and start trying to find way to cope with whatever this new stage may bring.

      I appreciate your advice a lot and send you greetings and good vibes from Holland!

      Valeria

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  • Posted

    These do not sound like the typical symptoms associated with CFS, and since you were out of the country, you could have been exposed to something there. I would see a doctor and let them know you were out of the country. I had to get several vaccines and take preventative medicines for yellow fever when visiting South Africa. Not sure about Asia, but I would check into it. Did you get any vaccines before your trip?

    Do you need vaccinations for Southeast Asia?

    Vaccinations for South-East Asia. Most travellers on short trips to South East Asia will receive two vaccination shots at least two weeks before travel. Additional vaccinations to cover Hepatitis B and Rabies should be considered by travellers planning to: Visit poorer countries (Laos, Cambodia, Burma)

    Please keep us posted. Wishing you the best. KPD

     

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    • Posted

      Wow!  That's something! Sounds a lot like My current symptoms but I'm tapering off gabapentin!  I awaits look to my medications first now. Research side effects anfd combined side effects if more than 1.  I take things fine and all of sudden can't tolerate. Plus I agree about going out of country. Good luck

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  • Posted

    I have had ME for ten years. I had very similar symptoms at one point. I also had a dry mouth. I put it down to another viral infections. The problem with ME is the immune system is often weak so it's possible you have picked up something. The jaw could be inflammation, check symptoms for foot and mouth.

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  • Posted

    Have had every one of your symptoms listed above.  This was how I pull out of a mega flare:

    You must get someone to write you a prescription for an antiviral (take daily)

    Buy and take a mega dose of the following daily:

    Lysine

    Vitamin b-12

    Biotin (unbelievable - how it will help)

    Zinc

    Vitamin c

    Milk thistle

    If you can afford or find an information and sauna -mortgage your house to buy it.  Worth every penny of it.  I am in mine daily.

    Be extremely careful of the fentyal - it will a killer - we have 13 deaths  per weekend in our state due to fentynal - highly additictive-  will be banned in American and his year.

    If you can get Celebrex and low dose nakextrone you can beat the pain .

    Most of all do nothing but red while in a mega flare.

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    • Posted

      Hi Debbie,

      thanks a lot for the advice. It was definitely a mega flair triggered by a combination of putting my body through serious activity for a long period of time and a virus. I think that the virus has ran its course and, although tired, I feel much my old fibroself!

      When you mention to take an antiviral, do you mean just now, while the virus is active or a long course of an antiviral often used for FM, such as Nexavir, for a long period of time. If that is the case, is almost imposible that I get a prescription here in the Netherlands. My GP has flatly refused to do so.

      About the Lysine, Vitamin b-12, Biotin, Zinc, Vitamin C and Milk thistle, do you mean also to take this indefinitely and, if so, in which dosis. 

      I will definitely ask my rehumatologist about the Celebrex and Nakextrone. She prescribed daily doses of Paracetamol/Tramadol. It helps but I refuse to take it daily.

      In advance, thanks a lot for your kind reply and warm greetings!

       

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  • Posted

    I have experienced many of the symptoms you described , the burning skin particularly in my feet. Sore jaws that caused swelling, which I got an incorrect diagnosis of mumps. Painful tounge, and stinginging eyes and gums, I believe it was a viral infections I couldn't fight. It definitely sounds as if you picked something up whilst away and it has triggered the CFS. Debbies advice is spot on. Do everything thing suggested. And keep heart, you are not dying. You are just going through CFS, FM and you are not be treated by medics appropriately. Hopefully by the time our children they will have researched this awful condition and named it . Recently enough They used to think MS was a psychiatric condition.

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  • Posted

    HI Valeria,

    sounds hellish.

    And your GP is awful.

    Can you see another GP?

    I did think Peri-menopause straight away.

    I've had M.E. 26 yrs and Fibro 2yrs.

    I have heard of people with M.E. who worked full time then Peri-Menopause hit n they can't work part time, so can hit hard.

    Maybe you have a tropical diseases but I see some replies think it's peri-menopause but you might have picked something up and the peri-menopause has hit at the same time.

    This forum is fab n you have lots of helpful input.

    All I can say is keep on keeping going.

    We some how manage to get through - while pulling our hair out!!!

    Yes I can't wait for a breakthrough in diagnoses and treatment.

    Hope you're having a better like day.

    Take care

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    • Posted

      Hi Haziej,

      I noticed you talked about your symptoms getting worse during peri-menopause. My symptoms did not get worse until menopause when my doctor had to take me off the hormones I'd been taking for many years. This makes me think the hormones or hormone imbalances play a big part in CFS/ME. 

      Have you found anything that has helped your symptoms? Appreciate if you could share since my symptoms have gotten much worse the past few years, too. Thanks, KPD

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    • Posted

      Hi KPD,

      I seem to have a problem on my iPad that when this page reloads I lose my messages so ere goes again but on my phone!

      I certainly hope I don't become even worse once I hit the actual menopause!

      Initially to get it under control I took 

      Soya Isoflavones (50mg) and

      Wild Yam Root (Dioscorea Villosa - you get 2 types available) (1,000mg)

      But, then the flushes became much worse.  Possibly because of the stress of losing half my benefit n having to reapply....time will tell on this one though.

      In my panic n feeling I can't wait to try one at a time, I started taking

      Sage (2,500)

      Rosehip (10,000mg)

      Black Cohosh (540mg)

      I would like to be able to get Evening Primrose Oil on prescription ( I am in the U.K. Are you?), but my G.P. is rather awkward and I've not worked up the confidence to talk to her about it yet.

      To be honest they are only helping a wee bit as things are pretty bad.  I suppose I will be saving a lot of money on heating this winter!

      I will stop them one at a time now to see which one(s) are helping.

      Yes, I think hormones play a huge part also. Before a period, for instance, I would have a night of not being able to sleep until 8a.m. or 9a.m. and fall asleep in the most natural way then!  Bearing in mind since the M.E. started I've had to take sleeping meds it raises a few questions.

      I like to think one day, we will find out all the answers.  I am sure there are people standing in the way of good research into it who need to be removed.  A breakthrough is surely not far away though if we started dying directly because of it they would research more...but this living death is not a life is it.

      Are you taking anything that you have found to be effective?

      Hope this helps.

      Best wishes 

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    • Posted

      I am at the tail end of the menopause and whilst I feel I can manage a little better It did introduce more wired and wonderful symptoms. Burning feet (felt as if they were on fire) couldn't sleep because of the burning sensation on my skin. And the heart palpitations, but I reckon that was just menopausal. Has anyone on this forum found a sympathetic doctor who offered help or guidance in a professional or humanistic manner? Really we need to set up an online petition for the lack of care in this area. I have joined various forums over the years, one is specifically for chronic parvo, which is CFS after having the parvo virus, yet my GP still doesn't quite know how to digest the possibility of chronic parvo, and can nearly get the words of CFS out.

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    • Posted

      Thanks for your reply and tips, haziej. I actually was taking a low dose oral contraceptive for many years, and whenever I tried to get off, my symptoms flared, so my dr allowed me to stay on them until just recently when she told me I was too old and there are too many risks associated with taking them.

      She then switched me to a low dose hormonal therapy. It didn't help at all. Then she switched me to a higher dose (it's called Activella) and it is a prescription hormone. It definitely is better than not taking any hormones, but I still felt better when taking the higher doses. This is NO fun.

      I also take doxepin which is a tricyclic anti-depressant used for sleeping. That helps some. In addition, I've started taking an antiviral because my dr believes that viruses and an overactive immune system causes the fatigue. 

      I tried taking natural hormones but they didn't seem to help. It is all so frustrating, and like you, I just hope they can find out what caused this debilitating syndrome. 

      Hope any info I shared with you might help. I'm in the U.S. by the way. Good luck to you! KPD

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