I'm in a bad place right now, I just can't seem to slay this als fear. When I think I am doing better mentally, something happens to kick my @ss back into the fear zone.I was walking normally when my knee suddenly gave out. Great, this has never happened since this bfs nightmare began. Now I'm gripped with fear that weakness is setting in...like I may not be able to walk in a couple of weeks.Why is this happening?
Overwhelming Fear of ALS: Help Needed
- Thread starter smithylab
- Start date
JohnnyRocket
Well-known member
This is happening because its our punishment for even comparing ourselves to real victims of ALS. 
By the way, I had that exact same symptom after my fears started. It was bizarre but my knee (same one but can't remember which) game out like 3 times within a couple days and my anxiety spiked. It felt like I was about to hit the ground since my leg seemingly was about to stop working. I was able to talk sense to myself just like you will be able to do. 
By the way, I had that exact same symptom after my fears started. It was bizarre but my knee (same one but can't remember which) game out like 3 times within a couple days and my anxiety spiked. It felt like I was about to hit the ground since my leg seemingly was about to stop working. I was able to talk sense to myself just like you will be able to do. Howdyfromt
Member
Yeah, I had the same situation happen to me about a month ago. My knee gave out twice when I was walking around my apartment and I was scared about ALS. I then convinced myself it was nothing and it hasn't happened since. I would be surprised if your knee has never randomly buckled before occasionally. It's just a random hiccup.
HI smithylab, I just wanted to chime in that I too have had this happen several times over the course of my BFS, not before, I would notice something like that. I will have this happen maybe once a week when I am not expecting it. You and I and johnny are not the only ones on this site that have had this symptom. Welcome to the group and just know you are nto alone with your fears (however irrational they may be in reality).Cheers,Greg
Hey Greg,I by no means wish this cr@p on anybody, but it is comforting to know I am not alone in my symptoms. Do you have a lot of joint pain as well?Hi C,I too just very recently started having knee issues. I get shooting pains in my knee at times, and it cracks a lot. This along with pain in my arm and hand, my 85 year old grandma is in better health.Haha, well I wouldn't put it past myself trying to rationalize why unicorns may exist, so yeah.
Howdyfromt
Member
I'm not sure whether or not this is connected with BFS. Ghayes, it's pretty interesting that your knee buckling only started after your BFS. I can't think of any reason why that might be, but then again there is no explanation for the random twitches we get either. Anyway, like all problems BFS and otherwise, if it's something serious, it'll start happening more and more frequently with increasing severity. And, if you keep thinking about it, it'll keep happening even though there is no problem present. For example, when I manage to take my mind off of bulbar ALS and eat food, my swallowing feels completely normal and natural with no coughing or choking, but as soon as I start thinking about it, I become painfully aware of my swallowing, the swallowing itself feels very awkward, it feels like food and liquid is going down the wrong pipe, I start coughing, etc., and this is all psychogenic! This is why anxiety is the underlying problem behind most BFS symptoms other than muscle twitching (and in many cases, that's due to anxiety too).
Hi jay,I do have that, and this is PAINFUL!!!!! but I am a hypermobile person so EVERY, virtually every joint in my body can pop up any time. hardly I can name one which was not (well, elbows never yet... THANKS GOD it should be even more painful that the knee).The fact that many of BFS fellows complain on clear cracking and joint pains, I can assume that some processes in our bodies result in slight inflammation of joints (not so stubborn as in RA) and cause our ligaments (not muscles) to become weaker and less elastic. That by the way happens during inflammation! Less elastic tendons and ligaments does not mean they become more hardened, vice versa, they become more loosen and it causes clicking sounds when loose joints are moving in their places, also it causes pain in the joints or rather in surrounding muscles tryuing to keep the joints back in place. In terms of our ligaments we really become like older people wjho have that cracks and clicks as a regular part of elderly life...however as a person who lives since birthday with weak ligaments, I can say it is not so bad I do not spring out every time I manage to walk and I was a gymanst in my youth )) probably with the course of time you might get them strengthern back. Some doctors believe that supplements like chondroithine (a cartialge component) are useful, but I am not sure about that.
I do not spring out every time I manage to walk and I was a gymanst in my youth )) probably with the course of time you might get them strengthern back. Some doctors believe that supplements like chondroithine (a cartialge component) are useful, but I am not sure about that.Hi Yulia,Do you get a lot of joint pain in your hands as well? The outside of my wrist feels really painful and tender to the touch. This is all on the same arm that has been giving me problems. This arm started with tingling, heavy feeling, and now I have a lot of pain and twitching on this arm. It really scares me because it seems to be getting worse.
In fact I would say you need to check again for carpal syndrome...I just can not remeber if you checked it (a disadvantage of reading almost every post here - sometimes I mess the info). Pain at the wrist level (mostly at the outer side, i.e., at the same line whith the pinky finger), tingling, numbness in 4 and 5 finger and especially the fact that the pain increases - for me it sounds clearly that it is quite a chance you have some entrapment...Ulnar nerve gives the same but pain is usually concentrated just an inch or two above the elbow and fingers affected are rather thumb, index and middle ones...in BFS we almost all have more or less carpal/ulnar like syndromes and this generally fits with the idea that in BFS we have a kind of inflammatory process affecting muscles and tendons, this may result in some loose joints, this might promote nerve entrapment...
Ouch my joints ... yes. My foot yesterday and today feels like a bone is sticking through something in it. Hurts to walk and im in need of a cane lately lol. Doesnt worry me. Feels more "physical" than neurological. Its basically how arthritis pain feels, so think about all those arthritis commercials and old folks who have that pain every day in both hands and feet and knees. oh boy its gonna be fun getting old LOL !!! 
If there is some inflammation going on, which is arthritic related - curcumin is something I am going to start trying. Its an immune system modulator, and inflammatory reducer in a big big way ... and its next on my list if this keeps up. Twitching is still at a bare minimum since the gatorade so far. Only gets worse if I get upset.
If there is some inflammation going on, which is arthritic related - curcumin is something I am going to start trying. Its an immune system modulator, and inflammatory reducer in a big big way ... and its next on my list if this keeps up. Twitching is still at a bare minimum since the gatorade so far. Only gets worse if I get upset.Hey BFSB,Yes, it feels very arthritic..or what I'm guessing what arthritis feels like. It's not my first thought though, being only 31, how old are you?Glad to hear the gatorade is working for you? So I'm guessing Powerade would have the same effect? I have a few Powerade drinks here so maybe I will give those a try.Jay