Not sure what I have...any advice appreciated

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Not sure what I have...any advice appreciated

Postby jmmartin77 on January 7th, 2013, 12:52 pm

Hi, I'm 44 and had a tremendous amount of anxiety from 2007-2009 due to symptoms/fear of a virus. I probably slept 3 hours a night in that time and barely got through it. During this time, I started to have other weird symptoms:
-lots of numbness/prickling feeling in feet, legs, hands (worse in the winter)
-right eye lid started twitching when sneezing, moving hand near eye, etc
-severe dry eyes
-muscle pain in right leg only
-foot cramps in left foot only
-itchy bumps on chest come and go quickly
-arm during sleeping would almost go dead often and have to hold it up to get the blood going again (worse feeling than falling asleep)
After a lot of testing ruled out the virus and the anxiety got better so did these symptoms, almost totally vanished. During this time, I had also a neurologist test for Sjorgrens, ANA, etc. All tests came back negative or normal. The doc said he thought the symptoms were anxiety related, but never mentioned bfs.Then got married, moved to Hawaii and didn't have symptoms. Now in DC and it's very cold. starting to get the eyelid spasms (both eyes this time), numbness, and recently have pressure to urinate often but no burning. Does this sound like it could be BFS? I do not have weakness in my legs or arms or have any movement issues. I also only have twitching in the eyelids and occassionally around the mouth, not in my legs. I was diagnosed in 2002 after a heavy round of antibiotics with an overgrowth of candida glabrata-another strain but none of the antifungals work to balance it out again. Not sure if it's systemic or not, I don't have too many symptoms of this.
No one really seems to know, they just treat individual symptoms and put bandaids on things, but there is no getting to the reason why. I have some anxiety now, but nothing like before. Not sure if the cold weather brought it back or what.
How does one know this isn't something more serious?
Any advice truly appreciated.
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Re: Not sure what I have...any advice appreciated

Postby LApea on January 7th, 2013, 1:01 pm

Hello and welcome.

The list of symptoms that you have are exactly the symptoms so many people here have had or have. I know I have a few of the symptoms you describe.

The strange thing is that when you have so many random symptoms present within a short amount of time, it actually points away from the big Neurological diseases many of us here fear. This all according to my neurologist when I went in with a symptom list similar to yours.

Anxiety is just fuel to the fire with these symptoms. I can imagine your move, along with the drastic climate change, caused a flare up of your symptoms.

You have seen a neurologist, if anything was amiss, I'm sure it would have been spotted as soon as you walked into his/her office.

Nothing in your story sounds the least bit worrisome or strange on these boards.

Take care, hope you feel better soon.
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: Not sure what I have...any advice appreciated

Postby aztwitchy on January 7th, 2013, 1:20 pm

sounds like your one of us....

anxiety is our num 1 issue....

chances are you are another victim of BFS. Of course you should seek a consult with a neurologist to be sure.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 8th, 2013, 8:39 pm

Thanks so much for your responses. It's unnerving. The neurologist I saw back then 2008-09 was very seasoned. He was very annoyed with me though because I was so hysterical about this virus I thought I had, and I think didn't take my other symptoms seriously like the constant numbness, tingling,etc. because he thought I was just making things up because I was so afraid about the virus I thought I contracted (but didn't). but he did run some basic ANA/RA/SSBA tests etc. Never had an EMG I don't think. I never told him about the eye twitches for that happened later and I didn't want to bother him again and risk him thinking I was insane. I stopped drinking coffee and it stopped. But I don't drink it now either and it's started on it's own. This is all that twitches though. From what I read BFS sufferers have twitching all over? Or can it just be in one place? I do get stiffness and cramps in foot/legs and the numbness alot, but no twitching. As long as I know it's benign and what sort of triggers it, I can handle it. there are worse things.
Thanks again for your support, much appreciated.
Julie
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Re: Not sure what I have...any advice appreciated

Postby Yuliasir on January 9th, 2013, 1:32 am

Hi jmmartin,
may I ask you if you ahve any hypermobility issues? any joints moving too losely (shoulders, wrist, thumbs, hips etc.?).
Becasue all what you describe fits both anxiety and hypermobility syndrome (those two are closely realted, because hypermobile people seem to have not only deficient collagene but also specific structure of brains making them 10 times more prone to anxiety disorders), including itchy skin and cold intolerance, limb numbness and twitches, frequent urination bouts etc. etc.

also please note that due to recent researches doctors got convinced in what we here know quite for a while - that having anxiety issues in the past most often means that twitches are really benign and related to anxiety-coupled syndromes rather than to MND.

I am 43 and suffer that stuff too (hypermobile, anxious, twitching).
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 9th, 2013, 8:01 am

Hi, I don't know if they move too loosely. Not sure what that would feel like?? I have pain from time to time in my hip and joints of fingers, especially if I've played golf, etc. but they don't feel "loose". I had very strong seperation anxiety as a kid, severe anxiety when both of my kids were born (not post partum depression-more like the feeling you get when you lose your wallet, but all day long for about a year), I've lived with strong anxiety all my life, but never had much of these weird symptoms like I'm having now although I have always been cold and thought it was just poor circulation. My skin isn't itchy per say, but I get these itchy bumps (usually or two at a time not like hives all over) that appear from no where on my chest and then disappear usually within 24 hrs and I get itchy bumps around the outside of my nose that when I put antifungal cream on, go away. I only get this in the winter/dry months around the nose.
It's funny, when I was so worried about the virus, the doc said "it's not the virus that will kill you, even though you don't have it, it's the anxiety surrounding it that will" and I thought well anxiety is very uncomfortable but cannot do much too you. I guess he was right, it can start to manifest and weaken your nervous system, etc. Well, the hardest part is that some of these symptoms (numbness) are symptoms of the virus I feared, so when I get flare ups I get worried I do have the virus afterall and the doc's didn't catch it. I don't worry too much about MS, etc although I probably should. so then I worry, and then the symptoms worsen. In another 3-5 years I will no longer fear the virus, for if I had it, I would become very ill with it no later than 5 years from now, so once that time has passed, its very unlikely it would be that anymore and I can relax about it. Is this hypermobility syndrome part of Bfs or another syndrome on top of bfs? thanks for your help
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 9th, 2013, 8:06 am

Oh, I just read about the syndrome you mentioned. My dad has significant hip issues-since I can remember he limped and has had 2 hip replacements. I don't have pain there a lot, but it has flared up off and of for about 20 years or so ,but nothing as bad as his. I cannot bend my fingers backward anymore, but as a kid my brother used to pull my fingers backward. My parents were also 40 when I was born, not sure if that matters but I know that the older the parents the more issues sometimes with the children because egg/sperm quality is just not as good, etc.My brother is 4 yrs older and has extreme public speaking anxiety but overall pretty calm person. my other two siblings don't have any anxiety whatsoever. My mom has a tremendous amount especially as she ages. Maybe some of this is genetic?
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 9th, 2013, 8:09 am

sorry, just read some more. I have scoliosis as does my mom, about 30 degrees. My daughter at age 11 had to have spinal fusion for her scoliosis, which progressed to 80 degrees, so this runs in the family also which I just read was under the hypermobility page, again though I do not have the ability to bend my joints back, etc but I do have pain in my hip and now fingers, sort of like rheumatism pain.
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Re: Not sure what I have...any advice appreciated

Postby Yuliasir on January 9th, 2013, 9:08 am

ohoh, looks like at least some issues related to muskuloskeletal system are inherited in your family. Those are often related to emotinal lability and twitching so you may easily consider yourself in that cohort.

In fact you should not bend your joints backwards, but ability to press a thumb to the forearm is a good indication of loose collagene bands. Mr. Mel Gibson also performs a hypermobility trick in his Mortal Weapon movie, however his character dislodges his shoulder with a great deal of pain and we can do it in a pianless way (I can for example).
I also have scoliosis, however stopped by specific gymnastics and 4 years in a special school where we had to take classes laying down and get a hell of medical gymnastics, massage and other procedures, so I never had more than 19 degrees and it was reversed down to some about 10-12.
I was born with a club feet and still can clap my feet as much as my hands, however their position was corrected in the earliest childhood by special cast... so a bit of circus star :)))

To be honest, before all that BFS I never was concerned about diluted pains everywhere in my body (attributing them to my lazy non-sportive lifestyle) but now looks like it is a clinical picture of hypermobility-fybromyalgia-anxiety composite syndrome.
I am GAD since 6 yo due to separation stress, too. Also bad stress after my daughter was born (and also not exactly postlabour but generally because I lacked proper skills/handling from my own infantry period). So quite similar way of life issues can be traced.

Rheumatic-like pains started after BFS only but I have a heap of them now ;)))

so welcome to the club and hugs
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Re: Not sure what I have...any advice appreciated

Postby Yuliasir on January 9th, 2013, 9:20 am

the hives you mention most probably is so called hystamine-related urticaria, and this is another lovely part of our syndrome (do not know even how to call it because for me it looks quite obvious that many of us here have combined non-deadly disorder manifesting as certain deficiency in musculosceletal system PLUS specific structure/chemistry of central neural system causing high level of anxiety as a background PLUS neurological symptomes PLUS skin and gastrointestinal manifestations like urticaria or GERD). Those bumps are caused by histamine release from so called mast cells of the body as a reaction for cold/hot temperature. I personally have bumps as a reaction on my own sweat (started few years ago) and cold intolerance in form of very unpleasant edemas :( had a bout right yesterday - 5 minutes outside without gloves, temperature +5 - and 3 hours of itchy swollen hands, holy cow!

so this also adds you to our club thather than to any other communitites. Do not be desperate, anxiety is manageable and usually all toher symptomes significantly subside with its decrease.
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 9th, 2013, 5:21 pm

Okay, thanks so much for your replies, I don't feel so weird anymore. I was afraid to even tell my husband because it's all so random and strange sounding. One thing is for sure, I have suffered from anxiety for all my life and so it makes sense that it's interconnected with that. Although bothersome, as long as it doesn't progress a whole lot worse or something fatal like the virus I feared, I can deal with it. Really nice to have this support from all of you and I appreciate you taking the time to answer my questions and inform me on some reasons why I have certain things like the bumps. I knew it's all connected, but who would ever relate eye twitching to numbness in feet or itchy chest bump? Some of my stuff may also be attributed to the overgrowth of candida, and I'm going back on the strict anti-yeast diet and supplements in the hope to bring it back to normalcy!

Thanks again,

Julie
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Re: Not sure what I have...any advice appreciated

Postby 6t5frlane on January 10th, 2013, 8:04 am

I'm Curious. What virus are you talking about
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Re: Not sure what I have...any advice appreciated

Postby Yuliasir on January 10th, 2013, 9:10 am

who would ever relate eye twitching to numbness in feet or itchy chest bump?


we do ;))) we have to!
because as for me, I never ever had food allergy, and having huge bumps in summer time three years ago was so weird for me... I went to my gyno for regular checkup and she said Good Gosh you need to change your laundry detergent! Then I tried to read about urticaria :) and find that often it is 'idiopatic' - of unknown origin, and that anxious people often have that as part of their systemic changes. For sure I was VERY anxious during that summer, so no wonder that I developed it. Here I find that other fellows also have it quite often, and that is just a part of clinical picture for some of us. Not all people with BFS have that bloody triade (hypermobility/fybromyalgia-anxiety-somatic syndromes including benign twitches), but many form quite a distinctive cohort I believe.

in my 43 years I can see that i gradually develop all related issues - born with full set displastic issues, including club feet, then developed generalised anxiety (since 6 yo), then got characteristic somatization issues like shortness of breath (since 8-10 yo), later - lumps in the throat and other throat issues (clearly remember that at 24, after my daughter was born, with many recurrences after that), then it was relatively noting new until single panic attack in 39, then urticaria at 40, GERD in 41, twitches in 42, muscular pains and cramps in 42-43, who knows what else :) Looks like I always had muscular pains/tender points, but they just become more prominent now.

fortunately I never heard that this syndrome shortens life expectations :))) It just makes quality of life quite unacceptable (sometimes) but we still have plenty of resources to fight with it. if people like we, Julie, survived decades of GAD - we may survive also BFS.
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Re: Not sure what I have...any advice appreciated

Postby jmmartin77 on January 14th, 2013, 2:14 pm

Hi Yuliasar,

what throat things/lumps? I just started to get yellow bumps on tonsils (just one). Went to ENT after 9 months, he said it's a tonsil stone (trapped food) and said it's very common. He removed it, hasn't returned. Sometimes I get what looks like a blister on the uvula (thing that hangs down in back of throat). Do you get mouth ulcers? I get areas that feel like the skin is removed (not white or any color) feels like an abrasion and usually lasts 24 hours or so on cheeks, inside of lips. It's not canker sores or herpes blisters ( I don't get those). Usually happens around ovulation/period. Is this part of the syndrome?
Thanks!

Julie

yes you are right, if we survive GAD we can do anything. My faith helps me alot with anxiety.
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Re: Not sure what I have...any advice appreciated

Postby Yuliasir on January 14th, 2013, 2:36 pm

hello, as i said today somwherer here I have MANY issues with stomatitis (small recurrent ulcers caused by bacterialor herpetic infection) since my childhood and even right now. As for pain without obvious damage, it could be same sensory issues as for many of us, and definitely it does not mean anything sinister. yep I think it may be part of ovulation manifestation because this part of cycle could be accompanied with high body temperature (not only colonic rise but overall rise up to 37.4 - I had that for several years), pain in the lower stomach, migraine, name wahtever. What disturbes you in case of clear connection with cycle could be probably minoirest case of candida (without white plaques) or just changed sensation (also happens in woman).

we are so complicated creatures!
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Re: Not sure what I have...any advice appreciated

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