Bad Night

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Bad Night

Postby muppetdog on June 26th, 2013, 7:39 pm

Ok, so I decided to go out to California to visit a friend for a couple weeks to see if leaving my old environment would help. In Colorado I live at 7500ft and have always hated the altitude; so I thought I would try 500ft instead.

For the most part I have been doing quite a bit better. I have been able to walk 5min /run 2min intervals for up to 5 miles with little affect (other than some increased hand and foot buzzing for and hour or so, but I get that from just about anything.) I have been enjoying the good weather, practicing mindfulness meditation every morning, and trying to eat a veggie, meat, fruit type diet. and all was going pretty well.

Then the other night, while sitting out by the camp fire I decided to have some tequila. At about 2 in the morning I was up with my whole body: sunburn/prickly/scraped skin/shivering feeling/vibrating/painful/just mix any old unexplainable neuro sensation in there. It was all pretty off putting. I had not had an episode like that in a while (I have had them before.) The whole time I just wanted to find a neurologist and punch him in the face. I eventually got back to sleep but for the next few days I have had to deal with the diffuse migrating nervy type, body feels vibrating, rubber-bandy, muscles get sore easy, feels like someone pinching you here and there, random crap.

The funny thing was, when I was having my burny nerve attack, I had no twitching. I seem to alternate from twitching to pain in my 20 month adventure, now that I think about it.

I really wish this would go the f$%#k away.

OK, just thought I would vent.

Anybody else get the sunburn/nervy pain/rubber band/tight/balloon/scrapped skin/vibrating/other sensations? Anybody found anything that works other that medicating the crap out of yourself?

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Re: Bad Night

Postby wimpy39jen on June 26th, 2013, 9:32 pm

I get the vibrating bad sometimes. I often tell my family I feel like a rocket ship about to take off. :lol: I also get the rubber bandy feeling and the muscle aches often pretty bad in my legs, hands and upper arms. My symptoms come and go and sometimes are fairly mild then other times like lately really bad. I am very familiar with the buzzing after activity as well. Drinking alcohol makes the symptoms worse so I never drink. I have read others on here who also think drinking makes them worse. I hope you feel better soon. It sure does sounds like though that you are on the right track as far as the lifestyle changes like the diet and meditation, etc. and I am wishing you much luck on your journey. :D
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Re: Bad Night

Postby chrissi on June 27th, 2013, 1:41 am

Well yes know what you are talking about, just look here: http://www.aboutbfs.com/forums/viewtopic.php?f=8&t=17156&p=134503&hilit=126+sx#p134503.
I had my BFS start with millions of twitches al over my body and tremors, and then it all shifted towards the more painful side of BFS while the twitches got less and less.
Unfortunately there's no pain medication I know that you can get over the counter that helps with this instantly. I know that some members had success with Klonopin or Tavor and things like that, but honestly I am not too much a fan of such harsh meds like that if you can stand to try it without.
Many people can handle a little alcohol pretty well on this side, some even feel a bit of relief from the twitches(which though is a dangerous way to go , rying to treat BFS with alcohol), but in your case it seems to trigger your BFS. Triggers are very individual. While stress and anxiety is the most common trigger to give you a bad relapse of symptoms, we have people reacting to the weirdest things you can imagine ( e.g. I reacted to neon lights).
I think you were doing well with your regimen of a healthy lifestyle and meditation, so just go back to it. It is a learning process right now what is good for you and what not. And while my relapses were triggered so easily in my early days of recovery, now I am very stable. Please do NOT set yourself under pressure. BFS may be something that has built up over a long period of time before it showed up, so don't expect a key to treat it instantly.
There are many many members that shared those sympoms in he past and got over them. The pain side of BFS usually easens up after a few months. I know one member that had the same symptoms but much worse (coupled with all kinds of inflammatons, strange blood test results, vision problems and gut inflamation/diarhea) that was suspected of having Lyme. I do not believe that your sx are caused by it because they are absolutely in the normal BFS range, but I just thought it would be fair to mention this as a possibility in case the sx do not get better with time. Which I am very optimistic they will. The best tip I can give you is to relax your muscles. If you get th rubber band feeling in your legs, try piriformis stretches, they were so helpful for me even though they brought tears to my eyes while doing them.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Bad Night

Postby muppetdog on June 30th, 2013, 3:29 pm

Ladies, thanks for the replies. They do help:)

As for the Klonopin thing. Been there done that, it sucked. Its great for a while then when you have to stop using it (the DOT frowns on people like me being on stuff like that), it increases your symptoms for two weeks straight. I have found about 1.5 grams of acetaminophen works sometimes but not all the time, which was why I asked if anybody knew of anything else to use.

Please do NOT set yourself under pressure. BFS may be something that has built up over a long period of time before it showed up, so don't expect a key to treat it instantly.


Very wise comment Chrissi. It is sometimes hard to have a mystery illness like this with no diagnosis (although I have been to well over 20 doctors) and to have to tell yourself constantly that the absolutely strange sensations you are feeling need to be ignored. I will get there, its been well over a year for me (about 20 months) and I still get the pain thing. Mine is not like the "I'm anxious so I twitch" thing that 90% of the people on this board have but I have had to eliminate a lot of the stress from my life ever since onset.

That's strange about the neon lights and how you would react to them. I think I just read another post recently where a guy had the same thing. The human body is just strange!

I do find stretching works when I keep it up. It takes about a week to kick in but it does work, especially for the foot/leg buzzing - I think Jen called it the rock ship take off feeling.. such a good description. When it happens in my hands I always thought it felt like them powering up like on Mortal Combat for the fishing move, although I have never been able to discharge any power kill beam - as of yet:)

Ok, thanks again for the posts, I will keep on keepin on.
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Re: Bad Night

Postby BFSBurger on June 30th, 2013, 8:46 pm

Avoid the alcohol. At least until you've been feeling good for several weeks / months first. And even then, don't push it.

Alcohol is poison. Something in you is broken. Don't make it worse by poisoning yourself.

Only goodness goes in from now on. Period.

Cheat days are on your horizon though. But you must be patient. like 6+ months patient.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Bad Night

Postby TwitchyMark on June 30th, 2013, 9:01 pm

I've had a burning nerve sensation but that was due to my lumbar spine issues. As for BFS related, I've had a deep, tight aching sensation in one leg and alternating arms, something akin to RLS in my arms and legs (a ticklish feeling that got worse at night), buzzing (now get in my shoulder after exercise), cramping and aching in my hands, tightness/spasticity in my legs, a weird thing in my left foot where if I flexed it up or down and released, it would sort of slowly pulsate or beat up and down. It was almost like clonus but very slow and subtle in comparison, almost like my tendon was slowly releasing tension. It only happened in my left foot where I had tons of twitching. I also had numbness and pins and needles sensations too. I found stretching my calfs, massaging with topical analgesics and epsom salt soaks in hot water (feet and whole body) helped me. But the good part of it all is that it eventually did subside and now I mainly only have leg twitching to keep me "amused".

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