The feeling that...

[hawk78]

With this condition does it automatically come with a feeling of imminent fatality whether in six months, one year, three years? That this is leading down the road to being the exception? Constant feeling that something else is weak today or there's a new twitch that you didn't notice before?Does it ever feel like you'll never get better? If so what helps?

[leaflea]

Hawk, what helps most for me is time, acceptance, distraction. I believe you will start feeling better soon. I noticed a pattern here that many start to improve after 18-20 months. That is the case for me. I still have issues and now discovering TMJ I didn't even know I had may be a contributor. I remember reading on the Facebook page about someone who went to Mayo with all the classic bfs stuff and that TMJ was her final diagnosis. Just did a search here...34 pages!!! The TMJ has become more prominent - but last summer at about 9 months in I first noticed the cheek swelling. Really interesting. I've had it all too, honestly. Such a bizarre and disconcerting disorder. It will pass, wish it would more quickly but trust me, it will. New things appear and learn to expect them. The week after I was cleared at Mayo my hand/thenar became a new hotspot. It certainly is a mind blow...! Think about it, your regression coincided with a panic attack - big clue you are on stress overload. Panic attacks often happen when you aren't even aware of the stress, it is the body carrying it all. Breathe Hawk, breathe. You are so one of us.

[Yuliasir]

Yes, many of us have that feeling of imminent death and a feeling of being exception too, and that feeds years and years of fear and progressive loss of life quality. This is because we suffer a complex disorder in which mood disorder is a key feature. For some of us it resolves in a terms between 1 and 2 years, for some in 3 (I mean mood disorder, not BFS, fascics probably would never stop completely and would burst again in response on every stress, same for weird neurological signs and symptomes, same for GIT symptomes etc.). So you could just wait for several years believeing that time the healer would bring its reward... It will, believe me. For sure.

But I must admit that whatever doctors later would call that disorder (and they already come to conclusion that certain physical features, like stubborn acid reflus, hypermobility of joints, allergies (especially most weird like cold allergy for example), pains without inflammation, twithcing etc. oftem are combines with the anxiety and mood disorders into a comples syndrome), thery (and we) must consider it as a lifelong condition. It never resolves fully in a mental side too and needs a great care and attention from now on.

For most of us start of the symptoms, both physical and mental, coincides well with a significant stress - chronic, accumulated or acute. Therer is something in our life, for which our mind thinks - "I would not/I should not survive this" - and we start to consider ourselves imminently dying soon (because we all kknow we will die, but not tomorrow - and this is not true for people suffering BFS at the stage of imminent death fears). IN BFS the only difference is that this feeling of soon death, due to presence of twitching and other symptomes, creates a fear od dying from ALS, unlie from other similar conditions, e.g., cancerophobia (which some of our fellows also experience).

So we could wait or could take control in the meantime, which means psychotherapy with the root questions individual of course, but generally aiming to understand which was a root event leading to premature death fear, and what does this fear mean for each of us, or how to really survive harsh times with less damage. I've seen here very different people. It was a boy with a car accident in the medical history - he survived, but paid with a several years of fears, it was a brilliant young woman surviving well over 10 highly stressful events in few years, I have seen people losing their friends or relatives to ALS, cancer, just sudden death, there was a man who nearly lost a child due to accident, several people with military, police or fire fighting background, there were people which had to move to other country, people who lost lnong term pets, people who just married or got expected and beloved children, I have seen fresh students and of course numerous doctors here - all kinds of stresses - from darkest to the brightest, from death to marriage and maternity - and it appears that reaction is the same - "I can not/I should not survive this", and the result is the same, a premature death fears. For some of fellows it ruined the lives, not as much as ALS could do, but quite significantly. That is why I believe that psychotherapy is important for us. It changes life approach. It makes us more prone to survival, let's say.

Many of us also have detectable (and often treatable) physical components, like thyroid issues (which strongly affect the mood by the way), chronic inflammation (one of our fellows had a MAGIC healing of both physical and mental symptomes after a very strong anti-inflammatory therpay), some have inherited autoimmune disease which also need care, but on top of that taking care about the spirit is also important.

so, as a summary, answering your question 'what helps': time helps, psychotherapy helps, sometimes drugs as SSRi could help - but they help much better in conjunction with psychotherpapy of course. There are also new drugs coming on the market (in a next few years, final clinical trials are on the way) dealing specifically with endorphine reward system which is heavily involved in mental part of our condition (fear of imminent death while not being deadly ill is a HUGE source of endorphines via fear and reassurance cycle, but as any substance abuse, it is devastating, no matter that you do not need a drug dealer, you are yours' own one), so we would be able to break the vitious circle more efficiently.

hope this long and passionate speech would be of some help. I am well known adept of psychotherapy here just becasue it helps )))

[leaflea]

Wonderful post, Yuliasir. I cannot disagree with a single word there. I like to say I threw as much energy into recovering as I did into worrying. Eventually it helped. For anyone unfamiliar - google "schedule worry time" - incredibly effective technique along with tracking symptoms and rating them and staying away from the doctor - 2-3 week rule no making appointments. And then run it by someone. Going to the doctor reinforces the reassurance seeking cycle - needing more and more sooner and it never really satisfies...