Thirteen Years of Chronic Illness

Secretflower

New member
Hello everyone!Well, here I am doing my first posting as someone who first suffered from this horrible illness 13 years ago. I went through all the usual worries, tests etc (nil significant) but remained distressed nevertheless at having to endure twitching, burning, vibrations and shooting pains without any prospect of it getting better or otherwise getting relief from medication, alternative therapies, nutrition, yoga etc; tried them all but nothing made any difference apart, perhaps, from cranial sacral osteopathy...but this may have been coincidental. Anyway, the short story is that my symptoms persisted in an acute stage for about 5 years before then gradually becoming less intense and frequent, interspersed with occasional relapses with longer and longer intervals in between (for the last 5 years have had, on average, 1 or 2 relapses a year for a day or two with mild symptoms). HOWEVER, have now had a full blown relapse with strong and frequent symptoms for 2 weeks now. Seems to me that this has been triggered by a severe episode of flu, as happened first time round.Am now relieved to find a support group such as this as the internet was not really accessible when all this first started and I had big problems just with having my symptoms believed . I am now trawling through the postings to see if there have been any advances in treatment since 1994. Have made an appointment to see my GP on Monday who,I imagine, will suggest a referral to a neurologist. Have not yet made up my mind whether to undergo the whole shebbang of MRIs EMGs etc again; doesnt seem much point but maybe that's just avoidance. What I would particularly like to figure out is what is a typical reaction to the experience of such symptoms. I find that (as usual) I try to carry on and ignore them but that is probabaly just exacerbating the stress cycle which is likely to be risk factor in itself. On the other hand, we dont really have much choice do we? I wonder how others are affected in their ability to do their jobs, to socialise with friends etc? I am also a bit curious about the research on prevalence which indicates that about 35% of BFS suffererers work in the medical profession (I am a Clinical Psychologist). If this is an accurate statistic, it may give us some clues about causal factors (probably to do with coping styles with stress I think) as this is clearly a statistically significant finding.Enough of the science; just wanted to say hi really!!
 
welcome, sorry you had to join us..But, glad you found us..There are many professionals on this website. I am a clinical RN/paramedic..There are psychologist, internists, research doctors, radiologists, chiropractors, endocrinologists..the list goes on and on.It sounds as if your BFS is flared up. I understand your hesitancy about going through all the testing again. My guess is if you had anything truely sinister after 13 years, there would be no doubt in your mind. Sometimes jumping back on the doctor merry go round just proliferates and exacerbatess stressful obsessive worrying, but you would better understand that with your background. I am coming up on 2 years myself, my doctor a year ago, said come back in a year and we will just talk and see how you are doing. I am thinking, I don't think so at this point, I just want to get on with my life, and accept this as a part of my being.Good luck, welcome, there are alot of people on here with great support and knowledge, they are always willing to help.Terri
 
Yep, I am a doctor too, just made an extensive mail to my collegue internist with the same in New York. I am 11 month on the bandwagon and went through thal the medical merry go round. I decided to just go on with my life. There is not much more you can do.
 
I was just thinking, not that it changes anything, but if the BFS occurs more often in people in the medical field and if our BFS seems to get worse when we are ill (mine does).If this is an auto-immune disease like I believe...Perhaps since people in the medical field are around so many people with flu like ilnesses, that their immune system is more charge up and stronger than the average non-medical person.So what I am saying is more people in the medical field might have this afflication because they have been exposed to more flu symptoms and/or have a more active immune system.-43RichyThe43rd
 
Hello again; thanks very much for the repliesmust say Im amazed at the interest in the site...a sharp contrast with how this was for me when it all started when it took years for me to discover the diagnosis (myself!). It really helps to have all the support.Now I find myself being seduced by all the therories again (problem solver that I am!). Cant figure out the stats regarding the stress/virus theories as surely we would expect a much higher prevalence of BFS? Ditto the medical profession stats. Does anyone know of any good epidemiological papers considering onset factors, psychological profiles etc? Also, could our learned medical sufferers clarify whether a structural cause could be relevant (such as compression of the neck)..assuming it would have to be this 'high up' to account for symptoms in the face (as well as the rest of the body).Im struggling again with burning pains (especially) which I call my "shocks", as well as the usual twitching, and a hot spot in a very annoying place which has now lasted a for a week. My left eye started to hurt really bad yesterday (with movement) but I guess I have to take responsibility for that having spent all day on the computer!!Hope you all manage to enjoy the day; the sun is shining here in England; hope it shines for you too.
 
I would go to and check out the autoimmunity information. The research studies and descriptions of symptoms available there have been very helpful to me.
 
Thanks very much Sir_Trouserz. You seem to be a very active and valued member of the group. Hope you are having not too bad a day!regardsJoanna
 
I have heard the same statistic that about 35% of people with BFS are in the medical profession.But one thought I had was a large percentage of the population works in the healthcare field (I believe it's around 35% to 40%) so it only makes sense that if you where to take a close look at any disease you might find the same to be true. When I first began having symptoms I was working in manufacturing.I am now working in the healthcare field as a Cancer Registrar. The percentage of people that have worked in the healthcare field at some point in their lifetime is probably much higher. I also believe that this disorder is based on an autoimmune or viral cause due to the many odd and varied symptoms that come and go. Autoimmune disorders can be difficult to diagnosis. In the case of MS it is now thought that it has a viral basis and it lies dormant in a persons system until something triggers it.It is also almost exclusively found in cold weather climates. I seem to have new symptoms that are always cropping up. The most recent is a severe sensitivity to sun exposure.I will get very itchy rashes on any part of my body that is exposed, even for a few minutes.This really stinks because I am an avid gardener! Unusual rashes are common in autoimmune diseases!
 
Hi, started my symptoms over 30 years ago, when I went to my 1st neurologist. Like you, I'll have symptoms now and then, however, when I have a "full blown" relapse I usually go back to a neurologist for "reassurance", who examines me and declares the exam "normal", (usually every few years or more.) I think for me, it would be counterproductive to request EMG's, etc. at this point, (I'm sure I have carpel tunnel & arthritis to some degree that may show up on an EMG & freak me out---I definitely don't want to invite trouble, unless, of course, a neuro feels I need one.) I have had a couple of MRI's over the years (per my request), dizziness and headaches, etc. I agree, it's wonderful to have this support system---nothing like the "aloneness" of years ago. The people here are wondeful---I consider it a real blessing that I found this Board.
 
Hi Cindyhands up! yes I have (working ++); however, was also under major stress a year ago when I basically had to project manage a gang of Polish builders living in my new house (as well as holding down 3 jobs and being Mum to 2 children)...without any symptoms. Thats why the stress theory doesnt really hold up for me. Maybe its a risk factor which, if you then add in a flu bug and a physical exertion influence (had started an exercise routine after a few months of slobbing out) is enough to tip me over the balance.I have resorted to some cranial sacral osteopathy again (as done previously). Had 3 sessions now and symptoms seem to have calmed down (apart from persistent hot spot). Dont ask me how it works because it doesnt make sense to me with my sceptical scientist head on (so definately not placebo) but it does. I wonder if anyone else has had any success with this?regards to all you guys out there; hope youre having not too bad a dayfloweredup
 

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