Friend's Friend with BFS: Advice Needed

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twinTwosome

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Hello BFSers! It's been a while. Hope everyone is well.Here's the situation: A friend of a friend has just recently started with BFS symptoms. She has been to multiple doctors who tell her it is benign, but can't get out of the funk she is in (can we relate to that or what?!) Anyway, what I am wondering is--What would have helped you at the beginning of your journey? What could your family and friend have said or done to help you? What behaviors/thoughts of your own got you through the beginning dark period? What can she start doing today to help her on the road to recovery? What do you wish you would have known at the beginning of all this?Your input is appreciated. (Can't believe I know someone going through this!)Thanks!Becky
 
Amazing! Id love to know just how common this is.1. Ripping out my internet connection for at least 3 months. Having a Doctor sit with me and explain clearly that als is so rare and really forcing it home instead of rushing me out the door. Not letting myself look at my twitches at all ever for any reason.2. They could have not indulged me in a cycle of worry...Tough love is what I needed...it would have hurt but...good hurt.3. Long walks with VERY loud music playing in my headphones to drown out intrusive thoughts. A relaxation/meditation c.d I listened to at bedtime(again to help with intrusive thoughts). Heavy drinking with my buddies.4. Today she can start the path to acceptance by really just treating it like any other benign yet annoying condition...and dealing with the mental aspect as I have never seen anything that has helped the physical one.5. I wish I had known the mathematical chances of someone like me actually having a dred disease process...millions to one....I wish I knew that twitching was as common as it seems to be.Thats my input...inputed.
 
Honestly? I think getting this friend of a friend to join the community might be the best medicine. For me in the darkest days, there was no substitute for the reinforcement from this community that my symptoms were not related to something sinister. All the distractions in the world were of no use. My path to sanity required constant reminder of the truth about my symptoms and not the lies I was being told from my anxiety. This type of reoccurring reminder could only come from people who are/were in the same boat as me.
 
Thank you. I have encouraged her to join the forum as it really saved my life. I have hope that knowing someone personally who survived it will make the healing process quicker.
 
Love to see the responses as I am new. I agree with Johnny, this site has helped me tons (although there are a few posts in the archives that freaked me out!). I have many things in real life that could distract me, but it is still there. This site helps me realize what what can be "normal", whatever that might be.
 
I'm still quite new at all of this, but one of the things that has helped me quite a bit (besides drinks with friends -- ionyZarrion is right about that one) has been getting back to the gym. During the first month or so I was terrified of going for fear I would fall off the elliptical or I would find out that I was weak. I'm not sure if your friend is into working out, but if so, I'd encourage them to get out there! After my first time back at pilates I felt fantastic -- strong and healthy.
 
Ok love ionyZarrion's post...so true. How we wished we had someone to explain a little better. Please have her join this site. Tell her to stay away from any others. Dr. Google is evil :mad: It is so reassuring that there are others that have the same symptoms as you and they are not sinister. And I agree with Jesster. It was really liberating going back to the gym after a 5 month absence knowing that I could pick right back up where I left off and showed no signs of weakness. Muscles a little sore but NO weakness!
 
The only thing that helped me was time and this board. My advice though is tell your friend to please listen to the doctors when they say it's benign. If I would have done that from the beginning it would have saved me alot of worry.
 
What would have helped you at the beginning of your journey? Having a GP know what I hadIt is benignKnowing someone with itWhat could your family and friend have said or done to help you?Tell them it is benign. Things will improveWhat behaviors/thoughts of your own got you through the beginning dark period? That it is benign. It is not getting any worse. It is only twitching (was at the beginning)What can she start doing today to help her on the road to recovery?Go to specialistInvolve herself with this site-talk to others What do you wish you would have known at the beginning of all this?That is is benign-it wont kill youIt is fueled anxiety, so get that under control and it will improve
 
These are good questions and seem to be hard for me to answer!What would have helped you at the beginning of your journey? Having the understanding of my family and friends.What could your family and friend have said or done to help you? They could have lent a hand with some of the everyday struggles and encouraged me to do what I needed to get well. It was difficult dealing with it and being criticized or somewhat humored. That just made me depressed.What behaviors/thoughts of your own got you through the beginning dark period? I advise everyone to get a recommendation from someone you trust for a neuro so you start off on the right foot and not question his/her proficiency - this helped me a lot as I never thought there was a chance I had something bad (as in get much worse or kill me). It helped most to have one person to communicate with that had BCFS so it wasn't like it was so rare, seeing how he coped, trading complaints and slapping each other out of self-pity.What can she start doing today to help her on the road to recovery? General wellness: good nutrition, exercise, relaxation, and mental wellness all go together so all need thoughtful work. You actually need to ask yourself 'what can I do to feel better today, right now?' and then do it. Many of us don't help ourselves and enjoy what we do have - focus on the positive - do the positive.What do you wish you would have known at the beginning of all this? That it wasn't going to help one bit to let the docs pass me from one specialist to the next; that good health is going to trump supplements; and that I wasn't going to be able to find either a better Dx or 'a cure' so should stop wasting time looking.
 
Great questions.My answers:What would have helped you at the beginning of your journey? A crystal ball. Really. I doubt if anything else would have helped. My family was supportive, this site was awesome. Maybe the correct neuro and the correct meds. Or maybe even meeting with someone that has had this for a while. Its great to hear the stories everyone had, but seeing is believing.What could your family and friend have said or done to help you? They were great, so nothing else.What behaviors/thoughts of your own got you through the beginning dark period? Really just time, some anti-depression/anti-anxiety meds and the support from family and this website.What can she start doing today to help her on the road to recovery? Find a supportive neuro who is well versed and is willing to work with her towards the correct treatment, if any.What do you wish you would have known at the beginning of all this? That I should have firmly believed what everyone was telling me. Would have saved needless worrying.
 
What would have helped you at the beginning of your journey? The flashy thing from Men in Black. I wish I could undo looking this crap up. But honestly, to see in writing that bfs was a real conidtion, not just being swept out the door of my neuro like so many others.What could your family and friend have said or done to help you? Nothing much, this was something I needed to deal with, and they did what they could. Just be supportive that there is something going on, and it is not "just in your head."What behaviors/thoughts of your own got you through the beginning dark period? Church, and time. The longer you go the better you feel. however we all have relapses. The key is accepting your diagnosis as benign and also accepting you have no control over it.What can she start doing today to help her on the road to recovery? Stop reading anything on any als site.What do you wish you would have known at the beginning of all this?the widespread body wide twitching is not how als starts.
 
Things I have learned...Neuros never have enough time. GPs are well meaning, but clueless. Read John Kabat Zinns books on Mindfulness and anxiety. Use this site to do some research into meds and take that info to your GP. Do no be afraid to tell your GP that such-and-such a drug is not working and you want to change. It would be easier if your illness was obvious to friends and family - I wish I could turn green :sick: when I'm having a particularly bad day. But, if I am having a bad day, I must ask for help from family and friends. I must be kind to myself. DB
 
This board was and is the best medicine. I lost 4 months of my life worrying about this and it wasn't until I joined did I feel better. I had visited a lot but didn't join and yes I do believe its better to play the game than watch it so she really needs to join. My dad has BFS and he was like oh get over it.. I was like - you drove 5 hours several times for over a year to an ALS specialist I don't want to hear it. Funny how people forget.. He was sick with worry.
 

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