parvovirus/fifth disease and BFS

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

parvovirus/fifth disease and BFS

Postby JGB on October 24th, 2004, 3:24 pm

:?

My BFS started about two months ago with major muscle spasms that brought me to the ER. The smaller muscle twitches started about a week later. Since that time, I've had a combination of spasms and twitches, with occasional cramping, and major anxiety.

A couple weeks after my symptoms started my son developed a red rash on his face. We got a letter from his school indicating a few kids in his class had parvovirus (fifth disease). About a week later I developed the same rash on my upper arms and trunk. The literature I've read indicates that parvo causes myalgia and transient arthitis-like symptoms in adults.

This is a fairly common virus. I was wondering if anyone else out there noticed a connection between viral illness and the onset of their BFS symptoms.

Thanks
JGB
Interested
Interested
 
Posts: 17
Joined: October 23rd, 2004, 9:04 am

Postby amy_twitch on October 24th, 2004, 9:32 pm

Both my sons had fifth's disease not long before my BFS started. My case began with a two-week-long bad headache...along with general body aches. Then the twitching started up. It took a year, but my twitching is finally subsided (knock on wood).

This should be an interesting thread. Thanks for starting it...

Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby LeeNC on October 25th, 2004, 5:59 am

JGB:

Thanks for your thoughts. You just made me realize my youngest child hasn't had Fifth Disease yet! (Fifth Disease is like chicken pox used to be, where you could pretty much figure every kid gets it sooner or later. If I remember, it's no biggie unless you're pregnant - just a startling "slapped in the face" rash and fever that last a couple of days.)

While I don't think specifically Fifth Disease was the trigger, at least in my case, I DO think the virus connection is real. That is, that BFS is an individual's "over-reaction" (autoimmune response?) to ANY virus. This would also explain why BFS symptoms overlap with those of Lyme Disease, Chronic Fatigue Syndrome, and fibromyalgia, and why there's no one, easy way to figure out WHAT causes BFS.

I'm hoping a noted virologist gets BFS, finds our site, mines our data, and finds a cure. Yeah, BFS is benign, but it's annoying enough that I think we could use a cure, don't you? We could justify the research dollars if the resulting info could then be applied to research on the serious illnesses.

Well, let's all have a Monday (bluh).

--LeeNC
LeeNC
Hero
Hero
 
Posts: 350
Joined: September 16th, 2004, 10:33 am
Location: North Carolina, US

autoimmune driven?

Postby JGB on October 25th, 2004, 8:08 am

Thanks for the responses...

You know, I think there may be something to this autoimmune component (in addition to anxiety and other factors). I had some blood work done at my last neurologist visit and the antinuclear antibodies (which assess autoimmune response) were off-the-charts high. They've never been elevated in the past. I'm hoping this is a function of the virus
JGB
Interested
Interested
 
Posts: 17
Joined: October 23rd, 2004, 9:04 am

Postby JGB on October 25th, 2004, 8:12 am

by the way (Amy_Twitch), mine also started with a headache and some cramping that was replaced by twitches about a few weeks later. I've done some internet searches where others exposed to fifth disease have had fasciculations in thighs and calves. However, none of the published biomedical liteature indicates anything about this association.
JGB
Interested
Interested
 
Posts: 17
Joined: October 23rd, 2004, 9:04 am

Postby amy_twitch on October 25th, 2004, 12:13 pm

Hi again,
My ANA was positive (first test was 1:320) and I had it checked twice since in the last year, and it decreased to 1:80 and then below 1:40. Therefore, the viral connection could be very likely.

Funny enough, my anxiety levels have been pretty high lately (staying home with boys 2 an 4 years old can wreak havoc on anyone--I love it though). However, even though I feel more anxious and stressed than I have in a long time, my twitches are still practically non-existent from where they were a year ago--and even six months ago.

After my two week headache, my twitches started in my feet. I could see my big toe moving. Then this progressed into a buzzing sensation in my toes and arches that lasted a good couple months. Then this progressed into calf twitches....then on to quadricep twitches...then on to finger twitches as my hot-spots. All the while, I had various random thumper twitches all over my body.

About two months ago, this progression finally seemed to stop, and the twitching just dissipated all together. I'm not 100% back to normal...but I'd say 90% for sure.

Given my own personal history, I have a tough time believing BFS is solely based in anxiety. I've tried to believe it many times, but my own experience is putting me on board with the viral link. Of course, high anxiety lends our bodies to be more vulnerable to illness. Anxiety also makes us more resistant to recovery, so ultimately any virus coupled with anxiety makes for a bad combination.

I just find it odd that I've been feeling very stressed lately--and not one twitch to show for it. My ANA test has also gone from high to low over the last year. I'm hoping my next test will reveal a 'negative' result.

By the way, a lot of people with CFS and Fibromyalgia also have postive ANA tests. No one knows 'for sure' what causes these myalgias--but some viral connections are the leading theories.

The more I've read up on CFS (chronic fatigue syndrome) and Fibromyalgia--both of which also have muscle twitching as a symptom, the more I believe that BFS is another off-shoot of these type of myalgias. Some type of random virus (could be a host of different viruses) triggers these syndromes into motion and make for a bad stretch of time for us. Ultimately, they are all benign--they won't kill us. Unfortunately they can take YEARS to dissipate. This is where keeping the best frame of mind possible and keeping our bodies well rested and relaxed will help in the healing process. Medications can play their part here as well.

If viral illnesses are the culprits, there's not much that can be done in terms of prevention or eliminating the virus. We just have to let it run it's course. I have a feeling that plenty of CFS and fibromyalgia studies have been done, and that any medications prescribed to help the symptoms are the best available today. It's simply a matter of treating symptoms until our bodies are able to eventually overcome the cause of the syndrome.

While the overall outlook is good (excellent even, since again, this won't kill us), it sure can be frustrating! We just have to summon the will power to keep reminding ourselves that this is benign--and NOT let it stand in the way of our lives. It can be so difficult at times--but we just have to do it! It does get better eventually. Even if the physical symptoms don't fully disappear, over time, our mind-sets get stronger and stronger. If ever anyone on this board finds that their mind-set is flailing....please get help from your doctor or a psychologist. I firmly believe that mental strength is the most important asset we can have when dealing with these syndromes.

Happy Monday everyone!

Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby thetwitchkid on October 25th, 2004, 2:01 pm

Amy:

Can you describe (if anything) what you may have done over the last year to attempt to decrease the BFS? Thanks
User avatar
thetwitchkid
Selfless giver of time
Selfless giver of time
 
Posts: 153
Joined: October 31st, 2003, 2:14 pm
Location: Florida-Age 35

Postby amy_twitch on October 25th, 2004, 5:32 pm

Hi Twitchkid,

Honestly, I cannot say I did anything specific to make the twitches subside. At the peak of my experience, I was told by my doctors that it was all anxiety driven. Anxiety does run in my family, but I never 'felt' or 'seemed' anxious until the physical symptoms of BFS entered my life. For me, it was more like the physical symptoms brought on the anxiety...or maybe just brought it to the surface. (???)

It took a long time and many many tests (including EMG) for me to believe that this was truly a benign condition and NOT a precursor to a far more dreadful disease. The lessened anxiety levels helped me get on with my life in spite of BFS, but I don't believe that the lessened anxiety my BFS dissipate. Heck, for all I know, I'm just in a 'slow period' and the twitching may come back full-force one day.

The single indicator I have that goes hand-in-hand with my twitching is my ANA tests. My results were high early-on and have progressively gone down as my twitching has subsided. I was screened for Lupus due to the positive ANA, but I was told 'no way'. Therefore, my doc felt that the ANA was positive due to some underlying virus, or that my body just normally had a positive level. Some people (especially women) are prone to having positive levels all the time--for no known reason. My doctor has never linked the positive ANA to the twitching....however, like I said, after looking into fibromyalgia and CFS and seeing that both syndromes have a higher frequency of ANA postivity (in about a third of cases) and both have muscle twitching as a symtpom along with aches and fatigue, etc...I'm inclined to believe that there's a similarity between BFS, CFS and Fibro. The leading theory is that CFS and Fibro are caused by viruses--but I'm not sure this has ultimately been proven.

I wish there was an obvious cure-all...but whatever the cause of BFS, it takes a long time to go away. Mine's not gone 100%, but I'm hoping it will be by this time next year.

-Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby amy_twitch on October 25th, 2004, 5:42 pm

Hi again twitchkid,
Forgot to add one thing I did change in my diet: I did cut out tea and sodas for a while--and that also coincided with my symptom improvement. I don't know if this is a valid link--but worth looking into. See Gary's conversation on magnesiusm levels---it might tie in, and it seems very plausible. Could even go hand-in-hand with viral causes....who knows?

I didn't cut out caffeine, as I switched to drinking coffee instead of tea, so if anything, my caffeine levels probably went up.

I have gone back to drinking tea and sodas (but far less frequently than I used to), and my symptoms have stayed at bay.

Maybe I should go back to drinking a few cups of tea and having a couple sodas every day and see if my twitching comes back. ....Nah.

Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby thetwitchkid on October 26th, 2004, 8:26 am

Thanks
User avatar
thetwitchkid
Selfless giver of time
Selfless giver of time
 
Posts: 153
Joined: October 31st, 2003, 2:14 pm
Location: Florida-Age 35

Sponsor

Sponsor
 


Return to Symptom Management

Who is online

Users browsing this forum: No registered users and 6 guests