Calling GP for Psychological Help

[LilTiger92]

I'm calling my GP in a few for a referal to a psychologist bc I am in a very bad place. I cannot stop crying. I still have a month to go until my nuero appt and I am not coping well at all. My symptoms are worsening. The twitching started in my left leg and I had a few other places but it largely stays there. It's concetrated in my glute and calf. When I go to sleep my glute twitches non-stop. When I wake up it's still twitching. It's an ultra fast, ultra fine twitch (think drumroll...it's like a muscular drum roll). My calf is the same. The twitches are rarely visible and sometimes just feel like someone snapped a rubber band inside my leg. I can't focus on my school work, my family. I break down in tears every few hours. This is no way to live. I feel utterly hopeless and I am sure that I will be the one who gets the bad diagnosis. I have read and reread the posts here for reassurance but then I found a thread last night with multiple multiple people saying fasciculations like mine where the first symptom. Long before any weakness. They had the twitching. It was concentrated and then it spread. Fabulous!! I'd give anything for wide spread twitches at this point. I don't know how to just pick myself up and accept whatever this is either way. I don't know how to move forward. I know if I do have something terriby wrong I will face it with courage and grace but the not knowing is what's doing me in. I'm ready to quit my classes because, what's the point? I won't be able to work anyway so why waste time when I could be spending it with my family. I need to get to the appt so I can move on either with or without a disease who's name I am even having a hard time saying now. I feel alone and terrified and just utterly hopeless.

 

[jamesray29]

Ok, yesterday I was in a dark place like you are today (mentally struggling post) & you replied with a positive response. Now I am asking you to please be positive. I read through some of your old posts. You sound like you have the symptoms of BFS but you just need to get to the neuro appointment, right? No weakness? Unfortunately this BFS causes such high anxiety & makes things worse. Yesterday I had no sleep when I wrote that post. Today I have had sleep so I can deal with it much better. I still have toes wiggling & twitches in right thigh & left calf even with sleep, but I know I have to keep marching on today & keep my mind occupied. I have been dealing with this since Sept 5th. Just keep reading other posts on here who have had this BFS for a long time & it helps. Stay off Google. Just try to stay positive like you did for me yesterday!! )

 

[BFSDiner]

Tiff if you had "that disease" you would be a mess physically already. Don't worry! You would be weak, and likely debilitated already. "that disease" doesn't start with twitching. So you are already, automatically disqualified. Seriously!People who present at Neurologists with ALS have no question in their mind that something terrible is happening.You on the other hand, have jiggling muscles. Something tons, and tons, and tons of people have from *tons* of random causes. Its very very common.Your only enemy right now is your own mind. You've got to convince yourself that all is well. Because if your mind is not settled, you'll just keep the twitching going. This is the one condition where your anxiety level will play a role in regulating the severity of your symptoms.My hardest months were the first months too, because I wasn't sure if things would progress. The only thing that would make me feel better was "time passing". Until I educated myself and realized that ALS simply isn't on the table, because it doesn't present like I was presenting. ALS is not identified by "being completely normal" and waking up one morning with twitching in your calf. That ... simply ... isn't ... ALS. Period. There is no two ways about it. Twitching is the end stage after noticeable muscle "dying". So this truly is about you getting a reign on your mind. Because ALS isn't even in the equation. Based on scientific fact. What you do have however is a condition that is characterized by a hyperactive nervous system. We don't know what causes it exactly .. whether its a virus, bacteria or simply a failure in the "stress control" systems in your body. But what we do know is that calming the system is imperative. What you should be doing at this stage, is what others here have done. Explore an anti-inflammatory lifestyle. An anti-inflammatory anxiety level. An anti inflammatory diet. And various supplements and techniques for calming your central nervous system. You can see my signature below for the myriads of techniques I used from mental, to emotional, to dietary, to even dead sea salt baths ... to calm and sedate my nervous system. And it worked. After a year I do not twitch anymore.I know where you're at with all this, but there are solutions. Hope you'll begin proactively researching those, instead of wasting energy and emotion on something you don't have -BFSB

 

[LilTiger92]

BFSB and LRT...thank you. To Lrt (I hope that's the right screen name lol) it was me offering words of encouragment. Because I completely empathized with where you were (and are) mentally. I was telling you what I know I should be telling myself but it's so hard to believe the words. I know I have to keep my chin up, as it were, but I am letting the bad thoughts take over. Today I took steps to at least get some help and I do have an appt with a psychologist who is also a nurse on Tuesday of next week. This has gone too far and I am doing no one any good like this. No matter what happens I have to get my mind right or else I won't be able to handle an crisis that comes my way! And trust me...I can make not finding my car keys a crisis BFSB..I have seen a post or two of yours and looked at your signature links. I have been paleo for over a year. I got a little off track a few months back but recently my daughter developed ITP (not a fun thing to go through but fortunately her bloodwork is stable now praise God!! No..there's zero stress in my life lol) and with that we tightened up her diet and ours by consequence. I do believe food plays a huge role and I am likely going to go full autoimmune bc who knows? Maybe that will help. It's only food so it can't hurt to try. I have read up on Terry Wahl's and her ms recovery, I have been through Mark's daily apple more times than humanly possible and I stalk Chris Kresser's blog among others. It's funny that I preach these principles but fail to believe that it could happen to me, you know? I can easily say to someone that their lifestyle is the cause of some of their illness but I can't accept that stress may be the cause of mine. I have thrived off stress all my life. My life is one giant ball of chaos and my anxiety actually goes up when things settle down bc I am waiting for the next bad thing. So while I have a lot going on right now it just seems...I don't know..ordinary? It's hard for me to believe that this is all in my head. Your words are so reassuring though. I just keep stumbling on people who say "oh yeah...my first symptom was the twitches...then the weakness..." and then all the work I have done in calming myself goes right out the window. I've read enough posts on here to see that it's a common cycle and I also know I am not alone in my thinking that I will be the story that's different. I just need the time to pass. I need it to move forward so I can get to this darn appointment. I don't do patience well. At all. My GP was sympathetic and very nice today. She at least didn't make me feel like a fool when I called telling her that while I wasn't ready for her prescription handout that I did think it's time to lay it in the lap of the pros. She took the time to think about the fit and hopefully on tuesday I will get some of this off my chest. The psychologist is also a nurse so maybe she has seen this before...and maybe she is the best one to deal with health anxiety. All I know is I can't keep crying. I can't keep feeling so utterly hopeless. I know that I could crash my car on my way to class or work with more likelihood than develop this disease but I just can't stop freaking out. Thank you again for such kind words. The more I hear it hopefully I will eventually start to believe it.

 

[princessshelia]

Your symptoms sound a lot like mine. I have a very weird left leg that sometimes buzzes, sometimes just feels fatigued. Most of my twitching is in my left arm, which sometimes feels numb. The twitching gets so bad that my arm jumps when I'm holding a book in that hand. I have the same internal buzzing you mentioned in an earlier thread, and I've had the weirdest stuff happen while trying to go to sleep -- jerks, head rushes, you name it. And guess what? I've had two neuros tell me I'm fine and that the only way for me to alleviate my 'symptoms is to get on top of my anxiety. Forget the stories you've read -- I've had two neuros tell me that twitching happens later in the disease process. I'm sorry you have to wait so long to get reassurance from a neuro. But I'm very, very confident that what's going on with you is just the same old boring stuff we're all experiencing. Try to take a deep breath, enjoy your little girl, and stay off the internet. Don't read stories about diseases you don't have. Read about the many, many people who have gone through what you're going through. God bless!

 

[LostLamb]

I have been in your dark place so many times. Hope you have read my post about the emails fom the 2 leading ALS/MND specialists concerning fasciculations in ALS. It is a sticky now and hope it helps. Please look at the following website also. The infomation in this was by a Edinburgh based Neurologist who specialises in something called " Functional Neurology". This site is used by neuropsychologists all over Europe. I hope it helps you.Especially look at the section under symptoms called tremor and movements Helen

 

[BFSDiner]

Thanks for the response.Just wanted to clarify something: Paleo isn't what I necessarily suggest. Moreso an antihisthamine diet. Anti stimulant diet. Paleo just is easier to say and covers most of it. However Paleo is an EXTREMELY low energy diet. Almost like atkins. I could not do strict Paleo myself because it lacked the carbs I needed for energy. BFSers require energy sources to help calm the body. When the body is lacking in energy, it is stressed, and symptoms increase. This is why "traditional paleo" is not my suggestion for BFS. But moreso a Paleo + Carbs diet. For me it was potatoes. I've graduated to white rice. At least 150 g of complex carbs daily from potatoes or rice was the big help for me. Paleo helps you avoid gut inflammation and damage. Carbs help cellular energy which BFSers desperately need. I guess my point is - if you did proper Paleo, it may not have helped your BFS. Try Paleo plus Potatoes and Rice. But even like my link says below, without the anxiety aspect under control (personal health fears I mean - that twinge you give yourself in your stomach every 5 minutes), no amount of gut health will matter.Mainly because self induced health fear stress is identical chemically to food stressors. Stress comes from many sources, and Im sure you've heard Kresser state that you can eat right all you want. If you aren't sleeping enough, resting enough, meditating, enjoying life, etc ... no amount of good food will help. You're injecting yourself with the same stress hormones. Just from another source.Sounds like you are fully educated. Its just a matter of putting reigns on your brains The biggest challenge with BFS - hands down. I wish you success in this. For me, getting my mind under control involved several steps custom to me. I researched and logically eliminated possible diseases with testing. That was my method. And it worked for me. I also researched twitching and found the many conditions that cause it. Even bee stings! That made it all seem much less sinister ... helped quite a bit. My autoimmune fears? I researched and found that a clean MRI is a clean bill of health regarding MS. The phrase: "If your symptoms, bodywide, were from MS, your MRI would be riddled with abnormalities" stuck with me and kept me calm regarding MS fears. I found the things which helped me, and one by one I put each of my fears to rest. I truly felt like I was "wrestling" with my mind, so often. To make things worse, something about this syndrome actually quadruples your anxiety. Without your help! That's the crazy part. You can do absolutely nothing and still find yourself riddled with physical tension and anxiety. Something really messes with your nervous system with BFS! So you really do need to wrestle and tackle and dissolve it. Its hard work. Very. Try to eliminate the health anxiety fears with whatever means you can. You know what convinces your brain. Then rest...

 

[madmathmatic]

Hello Tiff,There is Hope to get Out of this circle of destructive fear.Beleave me, i feel with you...but listen good: When this symptom (rapid fine anoying twich) goes away and it will go away, than, please, remember when the next anoying crap flare of, how sure you were been that the last twitch was the begin of the end and understand that the fear is conquer your mind again and step out of that same old sick making circle of fear, where the most of us have been.Hugs from berlin

 

[BFSDiner]

Florian is right. Its a circle. A cycle. It feeds off itself. You have to get off the roller coaster somehow. Its twice as hard because whatever this is, makes it harder to calm down. Something inherently about BFS is that it quadruples your anxiety levels, and lowers your thresshold.So don't blame yourself for being weak either. Whatever this is, makes it much harder to relax. Not sure if its a virus or what. But forgive yourself for being a mental/emotional wreck. Its part of this syndrome.I know I wasn't like that before BFS. It started with BFS. But find a way off the roller coaster.

 

[JohnnyRocket]

Tiff-I'm sorry you are struggling so much at this point. First, you need to understand that you are no different than anyone else from this community who has been down the same road. We've all been scared out of our wits, and most all of us have allowed depression to set in at some point. You are not alone, but rather a clone just like me. How many of us have NOT at some point thought we were "the exception"? Pretty much all of us have been there. You don't understand what's going on with your body, and fear the very worst. The fear is gripping and disrupting every day of your life. Please take comfort in the fact that thousands here have been down the very same road. There is no one thing I can say that will give you true, permanent relief, from your mental state, but if you knew what I knew....you would be at peace. When I first tried to understand twitching and other symptoms and how they relate to BFS, ALS, MS, etc. it was a scary place to be. There's a lot of information to digest and if you look hard enough you can find scary stuff that , taken out of context, can scare the bejeezus out of you. But after digesting everything, carefully analyzing/understanding feedback from tons of experts in the field, reading/following thousands of stories of BFS and other sinister diseases, the picture becomes very clear. What you, me, and everyone else hear has experienced is something different than those diseases. There is zero doubt. And this thing we call BFS is certainly benign, which means it can never become anything scary. Never. I would literally bet every dollar to my name on the truth that you don't have anything nasty. The only real question here, is what will it take for you to get past this? Thank to the thousands before us we already know that "beating BFS" is largely mental. Being on Paleo for a year, but still being where you are is no surprise, as we know diet plays no significant role. I think seeing a psychologist may be helpful, but sometimes its hard for someone to relate who hasn't dealt with our unique situation. Once you accept the fact that you don't have anything nasty, things will greatly improve. So ask yourself, what do you need to hear in order to achieve that?

 

[JOHN1589KY]

You sound just like me. At one point this week I was already planning my hospice care. I decided yesterday to seek help from a local psychologist and I am hoping they can help get past this anxiety. (my next Neuro appointment isnt until january) It is hard, but we all just need to be there for each other day & night. Keep your chin up & keep fighting.

 

[Amaranth]

BFS Burger, please do some further research before you make claims about the Paleo diet. I'm confused as to why anyone would ever say that a Paleo diet is low energy? What??? Everything that you are recommending conflicts with the science behind Paleo. I wholeheartedly believe that diet and leaky gut play into autoimmune issues, which are exacerbated by stress. If folks are trying to eat paleo to solve for leaky gut, inflamation and nutritional deficiencies, you can't just pick pieces that you like and expect it to improve your health. Once more, if people are still struggling after following strict Paleo, consider the Auto-Immune Protocol which removes eggs, nightshades, nuts and some common foods.If anyone needs accurate Paleo diet info, check out