Anybody ever heard of Post Viral Syndrome?

Wittesea

Missy,

My Fibro probably started out as Post Viral (or I just had both, who knows).

Anyway, here is a brief version of my story-

August 2001- I started getting migraines and I was just having a general feeling of being 'unwell'. The doc called it part of my anxiety disorder.

September 2001- migraines and feeling unwell got worse- doc says "post 9/11 stress. I tell the doc that hes a moron because my problem started in August, and as far as I know- I am not psychic

November 2001- saw a neurologist and an oral surgeon. Got diagnosed with chronic migraines and TMJ

Dec 2001- still had migraines, still felt 'unwell'... I got a flu shot (my first ever)

January 2002- I went to the ER because I felt like I had a severe case of the Flu... I was admitted to the hospital for 6 days. I had an infection (they never really figured out what it was, but it wasn't the Flu) but my red and white blood cell counts were VERY low (called pancytopenia, usually only seen in cancer patients who are getting Chemo)- I almost had to have a transfusion

After that I never felt 'right' again, they did call it Post Viral for a while.... and then after going to several doctors and countless specialists, I was finally diagnosed with Fibro in March of 2003.

I don't know if it was Fibro all along, or PVS that triggered Fibro, or what actually happened in my body. My theory is that I had Mono starting in August of 2001 and that getting the Flu shot while I had Mono triggered a very bad immune system reaction.

I also have an autoimmune disease called Undifferentiated Connective Tissue Disease. (autoimmune is when your immune system 'attacks' the healthy cells in your body).... I think that the autoimmune disease was also caused by the combo of Mono and a Flu shot.... it made my immune system go into overdrive and even though the infection is completely gone now, my immune system is still fighting and working hard!! Although now it is destroying my healthy cells too...


Anyway- Post Viral Syndrome is very real, and it can cause a lot of symptoms- including pain... are your doctors at least giving you meds to treat your symptoms? (pain meds for the pain at least??)

It is also possible for trauma to cause Fibro... and that trauma can be anything that stress the body- like an auto accident, serious illness, severe emotional distress... your virus caused a lot of stress to your body.

It may be that you are slowly developing Fibro, but unfortunately the doctors can not call it Fibro until you meet the diagnostic criteria (and part of that criteria is having 11 of the 18 tender spots). There are a few doctors that will diagnose it without you having 11 of the 18, but they are rare (they are the ones who truly understand Fibro).

My advice for you is to try all of the recommended therapies for Fibro and to continue to try to find a doctor that will treat your symptoms. Even if they don't have a good "name" for the reason that you are in pain they should still make an attempt to treat it...

You also have to follow all of their other recommendations for reducing your pain though... I had to go through physical therapy, and trying every type of over-the-counter pain medication (advil, tylenol) and then the doc gave me a prescription for Vioxx and then Bextra (both completely useless because they are anti-inflamatories and there is no inflamation in Fibro)... but I had to try all of their ideas and "jump through all of their hoops" before the doctor felt comfortable with giving me a prescription narcotic pain med and a muscle relaxer... it's a real pain in the butt, but it is the "prescribing criteria" that they HAVE to follow before giving strong pain meds.

Anyway- I really hope that you are able to eventually get a diagnosis that YOU feel comfortable with. I also doubted my Post Viral diagnosis... but it did take a while for my Fibro to "fully form" to the point where I had enough tender spots to fit the criteria. I'll put a list of recommended therapies for Fibro at the bottom of the post...

Sorry that this post is so long... but I type like I talk... too fast and way too much

Good Luck- I really hope that you get some symptom relief soon
~Wittesea


Fibro treatments that don't include medications-

**getting good sleep- Quality of sleep is better than Quantity of sleep, it is better to sleep deeply than to sleep for a long time.

**mild exercise and stretching- in a warm pool would be great if you have access, yoga works well too, and walking is excellent (when it isn't freezing cold outside)

**stress reduction- Most people who have Fibro have found that an increase of stress means an increase in pain, so try to keep stress to a minimum (easier said than done). Depression and anxiety can also cause a flare in pain and other symptoms, so if you suffer from either (I have both) it will help your FM if you are getting treatment.

** use heat and massage as needed for specific areas of pain... I use something called a "Bed Buddy" it is a cloth tube that is filled with dry rice and you heat it up in the microwave. (2 minutes in the microwave and you have heat for nearly an hour). I love the Bed Buddy because I can have heat without being plugged into a wall. There are also several companies that now produce "pain patches" that either have heat and/or numbing qualities to them- I have tried a few brands (ben gay, icy hot) and they work pretty well.

** Lifestyle changes- This one was the hardest for me. I changed my pillow and I now use a leg pillow too (that was easy) but changing the way I do dishes and laundry and the way I vacuum... the way I stand and sit... (even positions in bed) ... all of that was hard for me. It took me a lot of practice and a lot of patience with myself to learn totally different ways of doing things... Adapting so that I can cause myself less pain was really worth it though.

Missy603

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Thanks for responding. I have gotten some pain meds from the doctors. I haven't been taking any though. I'm trying to get a long without them. It's very hard sometimes.

I've taken:
Ultram (tramadol)
Propoxy
Bextra (didn't work)
Vioxx (didn't work)
Arthrotec (didn't notice it doing anything except messing up my periods
Skelaxin (just got)

I've also taken Aleve, Tylenol.

I have been taking an Aquafit class and I try to walk a mile every other day.

I actually sleep really well so that's not a problem.

Did the doctors repeatedly tell you yours would go away? That's what all my doctors keep saying. I'm just wondering when that may be.

Thanks again,
Missy

Wittesea

Missy,

I am a big advocate for using pain meds when it hurts

I have read a lot of research about pain, and from what I have read untreated pain can not only become more painful, but it can lead to anxiety, depression, and can really upset the balance in your body and has the ability to throw everything off... periods, appetite, moods, etc...

The Ultram is a non-narcotic pain med that works very well for a lot of people.

My doctors told me that it would get better, that my body would heal slowly and that I should return to 'normal'. They told me that it could take a very long time though (years). Unfortunately, I kept getting worse and ended up with Fibro (or I had it all along- who knows). I have talked to other people on-line and in person who have had their Post-Viral be eventually diagnosed as Fibro too.

There is so little research done about Fibro and Post-Viral... so there isn't a lot of evidence that shows a connection between the 2, but based on what I have heard and seen in myself and others I believe that there is some type of connection.

You might benefit from assuming that it will never go away. I say this because if you always think that you will be getting better, you may fall into depression when you don't. If you have the mind-set that you are expecting to heal completely, then you may be really disappointed.

I don't think that you won't get better, you probably will, but it may take a long time.

But maybe if you just set you mind to believing that you have something similar to Fibro, that you won't ever heal completely, but you will go through ups and downs of feeling good and bad... well then if you get completely better it will be a happy suprise

I have a comfortability with the fact that I will probably always be symptomatic, and that has really changed my outlook on things for the better. It is as if I am no longer sad or angry or confused about my illness and what it does to my body. I made the lifestyle changes that I needed to so that I am prepared and comfortable with the fact that I may never get any better than I am right now, and I may even get worse.... It's just amazing how my moods and feelings have changed... I am happier now and I don't get the awful up and down moods swings every time I feel better or worse.

I truly wish and hope that your body does heal, and that someday you do feel 100% better... until then, just keep hanging out here with us Fibro folks We all go through the same type pains and symptoms that you do, and even though you don't have the "label" you can relate to the Fibro-type symptoms...

I was hanging out with Fibro folks long before I ever got diagnosed.

gentle ((((hugs))))

~Liz

sammikins

i have fibro n chronic fatigue syndrome (- called pvfs until you have had it 6 months then it is called cfs)

Cloie

Hi,

I once had something called post viral poly neuritis (PVPN), in my 20's, which sounds in some ways similar to what you are describing. I had a flu-like cold for about 2 weeks, which went away. Then 2 weeks later, my toes and feet began to hurt and feel numb, like pins and needles. The numbness and pins and needles travelled up my legs, into my torso, arms and face. I was completely paralyzed for about another 2 weeks. Then this thing went away gradually, travelling back down my body. They said it was reactive to the cold I had had; a combination of an autoimmune reaction to the virus and just a predisposition to it. They also called it Guillian-Barre Syndrome, as well as pvpn. The only way to diagnose was through a spinal tap, looking at specific signs in spinal fluid. Now, 25 years later, I still get residual numbness and tingling in my toes after almost every cold, which comes and goes. I also have developed FM, as well as arthritis in many joints. Hope this helps. Cloie