Sharing My Story and Healing

Highlights Only
I

ionyZarrion

Well-known member
I haven't ever posted my story and reading the posts today i feel that it may be therapeutic to get it out.It started for me nearly 4 months ago when I was in the best shape of my life. I was working out 6days a week and feeling top of the world..swimming,cycling, running you name it. My problems started after a trip to the gym. I felt fine. I went home had some dinner and was just watching t.v when all of a sudden I felt an irresistible urge to sleep. I thought nothing of it and just fell asleep on the couch. When I woke up a few hours later my legs were on fire..like an ice burn sensation down my shins and calves..I felt numb in my toes and legs and had random feelings of numbness appear all over. For some reason that I can still not explain I became very,very worried about this. Within hours with the help of google I was convinced I had m.s. I should say that in the weeks previously I had been under some amount of stress (although nothing out of the ordinary) and I had been engaging in some uncharacteristic thought patterns....for example: my girlfriend and now fiancee of 4 years went out to go shopping and forgot her phone, she was about 2 hours late(a VERY normal occurrence) and for some reason I was... like distraughtly worried... thinking she had been murdered, raped or both. I was literaly 5 mins away from calling the police when she came home.Secondly I live near the docks so it is always quite noisy and raucous at weekends but again I became overly worried about burglars even though I have lived there and heard the same noises for years.Thirdly I was convinced I was overweight even though I wasn't and am not. I began restricting calories and skipping meals...again I can't explain it. I just felt natural at the time.So I was now convinced I had M.S, at the same time my girlfriend who is Chinese went home for a holiday which she does every summer...usually I am happy for the space but again for some reason I became overly worried about her plane crashing/her leaving me etc.etc.After about a week or 2 of burning and sleepy limbs I began to twitch all over... eyelid, arms,thighs, shoulders, everywhere. At first like an electrical breakdown then within hours it settled in my calves...You know whats next...Panic...OH MY GOD...I HOPE I have just M.S..Il *beep* take m.s....during this period I am a mess. Addicted to google, unable to sleep, unable to eat. I stopped functioning as a human being.I go to my G.P fully expecting to be diagnosed on the spot. He does the usual gp stuff...nothing abnormal except for high blood pressure...He can see Im worried so says he will refer me to a neuro...but It can take up to 6months...because im not an emergency caseScrew that I go private immediately and have an appointment within a week...In this week everything is als...I see about 4000000000 people in wheelchairs and Hawkins is on every goddamned channel and I cant stay off the internet...I turn up at my appointment not fearing but expecting the worst.Neuro does a thourough check..strenghth,hop, skip,balance,reflexes all that clinical stuff...no probs.He spends about 5seconds looking at my calves...I am annoyed by this.I expected him to gasp and collapse before ordering extreme unction.He sends me for an m.r.i and bloods. I ask about an emg and als he says unnecessary and intrusive to the first and NOT considering it to the second. I am scheduled for follow up in a month.as I leave a month of hell awaits.I develop more and more symptoms(all anxiety as I know now) brain fog, weakness,fatigue... I thought I had shoulder atrophy,calf atrophy,tongue atrophy , full body atrophy. I go over and over and over the exam. I run up every staircase, I hop skip and balance just like the doc asked in his office every day for 4 weeks I even check my own reflexes...I cant bear it... after 2weeks I ring the office...mri was clean still waiting on bloods.Nobody has ever been more scared of a clean mri...ever.The appointment rolls around and Im waiting in the room with some seriously ill people..people in wheelchairs..people who have difficulty walking...I feel like crying. I love my life, I love being me...and its all over.But wait.A different doc this time.Younger.For some reason the thought goes through my head that there will be a consultant and nurse entering at any moment with a box of tissues.I tell him my new symptoms.He examines me. Puts me through a similar but shorter clinical. I talk about my als fear as he seems indifferent and then explains that I don't have als. That I am too young and am displaying nothing that would warrant further investigation.I ask what is wrong with me and he puts it down to anxiety wtithout actually saying as much.He spends some time with me explaining about als( I wont go into it...coz for every person reassured 2 more will be afraid) and sends me on my way.My diagnosis: No diagnosis.So thats how I got here. I am still scared sometimes but with the help of everyone on this board(thank you Mario and Robbie esp) I can function again and know that I dont have any major problems.So I am fine,just fine and anybody reading this who is in their first months of fear... know that you will be fine too.Thanks for reading if you got this far.I really appreciate this board and everybody on it so so so much,Darragh
 
Quite a story, and sadly one I can relate to, I too feared my clean MRI :LOL: Am pleased to hear that you are doing well ionyZarrion, stay strong and healthy - RB
 
Darragh,Though my symptoms differed somewhat, I can relate to every single thing you said...I too began believing I had MS due to the numbness, etc, then it progressed to thinking you know what when the throbbing started,...I am still obsesssed with the left sided calf "atrophy" the muslces are markedly different than right and smaller by an inch, though I have not measurred formally. The left heel and calf have worse throbbing, twitching pain, etc...When I get crazy, I sign on here and listen to the many voices of reason...we will get through together. Victoria
 
I just read your story right after I wrote mine - I did all the tests - see leg pain reply. They just stare at me at Mayothe same as they did to you - everything fine - good to go. Don't know what it is but you aren't going to die. Doesn't anyone want to really know what is causing this in the medical profession????
 
So ionyZarrion correct me if I'm wrong but the progression is: stress, anxiety over previously normal events, bfs symptoms, fear, doctors, more fear, doctor, etc. Did you relate all this to the neuros? I ask because it seems that when they have no clinical evidence for neurological problems they would look at the progression and go hmmmmm. Mine did but he thought I was atypical (I wasn't - just another bcfs'er like many here). Wouldn't the best thing you could do would be to go back to the beginning and figure out the stressor(s) and start there? I wish I had done that early on because the longer the tension patterns get set in your body, the harder they are to dispel.JDK - No I don't think they are that interested because they can't 'save' us & most will decide during the first or second visit that we are just fine except for some psychogenic pain, hypersensitivities, or some stress induced disorder none of which is in the domain of their specialty. They may be right or not but neuros do know it's not something in their field that is going to progress and cause neurological problems because they know what all those look like. Just my opinion.....
 
Imok,you are spot on that is the exact progression.It just screams somatization.But I cant believe its "all in my head".I told the doctors and theyre exact words were "pursue other avenues" they were absolutely and totally convinced there was nothing neurologically wrong with me. I don't understand this as they actually saw my twitches and it seems everyone else who had a twitch seen had an emg. I can isolate the stressor (thesis) and spent four sessions in therapy but nothing suggestive of anything bar anxiety.I thought that it was a waste of my cheap time and my expensive money.I don't know to me it is pretty clear now I don't have als but id love to know what happened... did your doctors get to the bottom of it?For me I think that my body and mind was overworked and some kind of virus got in that usually wouldn't.I mean for me I have pnh not just anxiety i twitch in my calves 24/7 and I can elicit twitches by sneezing of moving really quickly so it is defo physical...any thoughts ...feelings?
 
I totally agree with everything you just said. In my case, I think it was a combination of health anxiety + stress + maybe some sort of a virus and BAM. Now I have PNHE. Or BFS. Or however you want to label it.At this point yes the symptoms are most definitely physical. So of course it's not "all in your head" like the doctors try to say. I believe it probably did start all in my head at one time (face it, we'll all health anxietyphobes around here), but once that BFS switch was flipped, it switched from mental to physical pretty quickly. So yes I agree with you 100%. Everything we have pretty much screams somatization. It totally sounds like it is all in our head, and we are making it up, and we make it worse when we continue to obsess about it.So what next? Well that of course is the tricky part. Obviously we have something going on in our bodies at this point. And obviously there is some sort of a stress/anxiety component involved. The question I guess for most people is, how many PNHE symptoms are you willing to put up with before you seek treatment for them? For every person here that answer is going to be different. For me, whereas I have been living with PNHE off and on for anywhere from 3-10 years, I can put up with a lot of BFS symptoms most of the time. Most of the times the twitching and fatigue and achiness don't really bother me at all. But for a newbie, who is just starting to deal with BFS, that "how much can you live with" issue might be a little bit different. A newbie might just have the twitching and that's it, and it might completely drive them crazy.All I know for sure about my own symptoms is that A) they were caused by stress and anxiety, B) something flipped a switch at some point in my system, and C) I now have literal physical symptoms because of it. And after that really all you can try to do is symptom management. You just try to keep the stress down, try to take it easy on your body, try to eat better and live better, and (what seems to work the best) try to retrain your brain not to release so many g.d. fight or flight chemicals into your bloodstream all the time.This retraining of the brain is (I believe) the hardest part of BFS, yet if you can do it, I believe it is the best treatment available. You just have to somehow train your brain and your body that you are NOT in any danger because of BFS, and that it needs to chill the f out. Obviously this is easier said than done, but if every single person here worked on it for a year, I truly believe they would all show some pretty dramatic results.But yeah. Somatization. Anxiety. Fight or Flight. Physical Symptoms. Random Fatigue and Achiness. It is all related. The pieces are all there if you care to put the puzzle together.The only problem comes with "Okay, what do you do now, and how much PNHE are you willing to put up with in the interim?" Darr you seem to have a pretty good head on your shoulders about this. I have no doubt you'll be on the path to recovery soon. Even though BFS really isn't a quote-unquote "anxiety issue", it really only tends to respond if you treat it like one. Which it sounds like you are already doing.
 
ionyZarrion - of course it's not 'all in your head' in the common way of thinking. But then again what isn't in our heads? How could we possibly not involve the brain, consciously or unconsciously in any body action? How is it we breathe without going, 'uh, in breath, out breath, in breath' - it is an unconscious function that is controlled by a part of our brain. Breathing doesn't embarrass people: "I'm weak and ineffectual, and things are happening all by themselves OMG I'm out of control here!!!!" When a person goes to the doc with a raging migraine is it all in their head? Of course it is but you don't see anyone scoffing at them. Hypochondria is not the meaning of somatic origins anyway - most docs don't really understand this and misuse the term unless they are schooled in this area of psychology - it's actually an area that is a cross-section of neurology and psychology which can often be two warring factions. I'm no expert, but I've read some on it and the mind and body are integrated in more than the commonly accepted ways and the mind naturally controls the physical whether it's a problem in the body (hello migraine) - or a function without our conscious control or knowledge. Yeah, sure I had the worst possible case of flu just before this all started and a lot of stress at that time - and my neuro said that after 30 odd years of practice he's seen repeatedly that bcfs often comes on after a dramatic physical or emotional stress experience - sometimes even after an accident or surgery. So perhaps that explains the trigger for some of us or the 'switch' as Mario says. I accept it so therefore I am beginning to heal - at least a start. I haven't been to a shrink but if I went I'd definitely try to find one that had a good background in this area as many do not. There are lots of books written about the mysterious (because this is outside of common knowledge) parts of the brain we 'don't know about' by doctors and philosophers - if you want some titles I can send them to you.
 
ionyZarrionMan o man can i relate to your story-the fear the obsession that i obviously had and have falls directly in line with your experience-I am guessing we all BFS'rs or BCFS'rs are all TYPE A personalities- we must understand what is up or going on at the moment it is happening or we will exert all our energy mind and body to figure exactly what the H is goin on-I know i have personally put off things just because i held the thought in my mind that i MAY NOY BE OK and in that reason i should not continue on or start anything new as what would be the point-As you said a girlfriend for 4 years, and now your fiance-well ive been holding off the fiance thing just because of my fear that i may have something sinister(or i am sure i do) so why make it harder on my girlfriend- (man what a load of S**t) - I cant believe i am not only doing this to myself but all of the people i love as well as all of the people that work for me- my business- my flying- my son- my God what the H- if you were to look back in my postings- i think from 2006 you would see just how out of control i was and for me it comes and goes= like the Physical Therapist stating "you better have that foot checked it looks atrophied" -Holy C**P that is where all my fasics are+Holy C**P it does look like it is atrophied- my whole leg hurts- my foot- it feels like it is worn out-like all my weight is on it and none on my right leg -definitly i OCD about how my body feels- and if it gives out IN ANY WAY im looking for a reason- H**l i got back my MRI of the lumbar- the Chiropractor cannot believe that all my symptoms are on the left side and not the right as i have bulging discs at L4 and L5 and L2 all to the right side- but my symptoms are all left sided- (figure that one out?!)-good Lord listen to me-OCD or what -like i said ionyZarrion as far as i know i have BCFS or BFS (it depends on the day) but i do realize STRESS whether its to my body or mind it is what brings on the symptoms and I hate it just as everyone else here does- So buddy hang in there and just remember -BELIEVE WHAT YOUR DOCTORS TELL YOU (until you believe you know more than your doctor) LOL thats just me talking as i always say "WHAT IF" more like WTFbest regardsDavid
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top