My Wife's BFS-like Symptoms Journey

[SavedWifesHubby]

I've posted on here before for my wife as she has struggled with BFS-like symptoms for the last 2-3 years. Most of her issues & fears until now have been with various twitching issues, and she has found some amount of solace knowing that others are experiencing the same thing and have been provided proof that nothing sinister is at play.Over the last few of months her twitching has been going crazy in her feet and toes, which scares her and drives her nuts, but she does see others here with those issues. However, something new to her has developed over the last month which has her more convinced then ever that something has to be wrong. Her big toes are now starting to cramp up for no reason and with no inducement on her part.She has tried absolutely everything to deal with her situation. For going on 2 years absolutely no caffeine, chocolate, alcohol, etc. She has gotten all of her vitamin / mineral levels up to normal levels. Only wears tennis shoes with custom fit orthotics. She stays home so doesn't have the activity or stress from work to weigh on her, and the kids are now either out of, or away at college for several years now.After all of this, any amount of walking - even just around the house - will cause her feet to go crazy twitching when she sits down. As she says "if I just use my feet at all, I 'pay the price' as soon as I sit down". She has to do a few things, sit down for a while, do a few things, sit down for a while, etc, all day long or her feet go crazy with twitching. After the periods of resting in between activities,they do feel better, so she repeats the cycle.The new twist is that this has now started to turn into cramping as well - not just twitching. It is primarily in both of her big toes, and doesn't require any type of movement or pointing of her feet or toes. She'll just sit down (after very little activity) and boom - toes will start twitching and one of her big toes will pull down from a twitch then go into a cramp. I've read others here who get toe cramps a lot too, but it seems most of them discuss making some movement which invokes them, or getting them at night, etc. All she has to do is walk around the house for a few minutes, sit down and off they go. Happens whether she is wearing her shoes or not.She is getting devastated by this. She thinks such minor use of a muscle causing such major issues must mean something bad is going on. We tried to get away for a short vacation yesterday. She tried some different shoes this time (sandels with a tiny heal instead of tennis shoes). Yesterday after arriving, we did just a little walking around the hotel, then sat for several hours and enjoyed a nice dinner and live music. Once we went to the room she sat down took off her shoes, and on with the twitching and toe cramping, which continued throughout the evening and through the night. These were major big toe cramps she hasn't had before. Now she's so upset she wants to just call it done and go back home.She saw her neuro about a month ago. He did an office exam very quickly. Said it was noting serious - BFS and/or nutritional issues, and said he didn't need to see her again unless something else changed. Her EMG was 2.5 years ago, so that provides no relief to her now. She's been on supplements a while now, so even if she isn't totally caught up, she's at much higher levels then she was a couple of years ago when she didn't have these latest symptoms, so that doesn't really add up. She did test positive for a very low level of thyroid antibodies about 6 months ago, which I know can point to something like hashimotos, but it would have to be very mild with the levels she showed. And it wasn't behaving this way until the last few months, whereas that condition has been there for 6 months or more now.Does anyone else have an experience similar to this which I could share with her to maybe help calm her fears. If so, I would really love to hear from you. I'm desperate to provide her with solid evidence of something hopeful.Thanks so much. I hope and pray i can find something helpful to share with her while I try to get her a new apt to get back to the neuro again.D.

 

[BlueWolf92]

I have the twitching as you describe and the cramping in the toes as well. I get cramps in my calves a lot at night, but the toe cramping comes during the day/evening before I go to bed. I hate them, but have accepted the fact that the twitching and cramping is part of my life. I have tried to cut back on this or that or stick to a certain type of shoe - all that. I can't say that I see huge gains by doing those things. My emg was over 3 years ago, but I still believe the diagnosis I received then (no MND) is as valid today as it was at that time. We are our own worst enemies at times. I have been and still have moments when I am. I call my sister who slaps me back into reality when that happens.

 

[Gracer]

I am not a doctor, but on my experience foot and lower leg cramping after or during walking or any other physicl load is due to rather bad circulation (peripheral vessels disease). It occurs due to sedentary way of life, in my case it took me 2-3 years of freelance operations (12 hours per day sitting, wery low physical loads) to get them. This year I had started fitness program and I found that even after low loads (in the beginning of the course I barely could run on a place for few minutes) I have sometimes very severe cramps in the foot.SO my first thought would be preipheral vessel disease rather than any other issues. Age (as you say your childern are grown up already), sedentary life and certain underlaying disorders like pre-diabetes or diabetes, some hormonal diseases etc. could promote that.I still have cramps sessions (coming and going) in the distal ends on my lower and upper limbs -in foot and in hads (fingers) if I do sonething more or less strenous (for had cramps it was enough to hold tightly for a threadmill handles, what a surprise!) - and have that for years already, so i believe my case is due to poor circulation.Does she complain for easily feeling cold in feet/hands?

 

[SavedWifesHubby]

Thanks to you both for your responses.Volfan - did your twitching and cramping all come on around the same time? She's had the twitching going on for a couple of years now (various locations, hot spots, etc), but the cramps didn't start until recently, once the twitching and stiffness settled in her feet & toes. That's what contributed to her level of alarm at this point - she feel like it represents a progression.Gracely - I've wondered about circulation being an issue as well. She does have cold feet a lot (hands somewhat too, but not as much), but I have to say she has pretty much always been that way. She's thin (5'6" at 124 lbs) so she doesn't have a lot of "meat on her bone" as they say. She lived a fairly normally active life style (not an exerciser by any means, but kept busy with normal household activity, shopping, leisure, etc) up until her twitches started settling in her feet and her feet began to start feeling a lot stiffer about 3-4 months ago. That's when she started resting her feet in between activity, to calm her feet down. Once she started resting between activities more and more to help with the foot twitching and stiffness, then the toe cramps began to follow, starting about a month ago. So that's what has her so upset now. Initially just twitching in various hotspots over a period of a couple of years, but now settling into her feet, accompanied by stiffness in her feet, and now most recently followed by cramping in the toes. To her, it all feels like a progression of symptoms over these 2.5 years - from just annoying and scary to what is now more activity limiting in nature.That's why I ask if anyone had twitching for a long time first, then followed by cramping later.Has anyone else experienced that type of progression over time?

 

[FernFinnegan]

I can say I have had feet and calf cramps all my life. They were intense the very first days of bfs, actually just before the twitching started. My mother has always had them too. Then they settled down as the twitching amped up. Then, the cramping became frequent...stomach, hands, feet, ribs, calves, and once I had one in my shin that lasted for weeks! I could induce them easily. This went on for about six months. Now, I go many weeks without any cramps at all! Just about back to the old baseline, except I would say, when I really think about it, I am more stiff, especially in my ankles. I try not to let it bother me, because truly, I can still do everything I used to do, except skip down the stairs as gracefully as before. I, too, am getting older at 48. My mother now has them much worse and has seen a neurologist. It is benign dystonia. Hers improves at times and gets worse at times. It has sent her looking to Canada to get quinine as it is no longer available in the US.

 

[DeterminedPassionat]

I have a friend who is not a twitcher that has been getting bad big toe cramps in both feet out of the blue for years. Doctor says they are due to her bunions. Does your wife have bunions? Maybe that's all it is.