New, Cold water sensations, leg pain, and scared

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

New, Cold water sensations, leg pain, and scared

Postby Mm3952 on October 31st, 2013, 12:48 pm

Hi all,
I am new to this forum and want to thank everyone who has posted as I have been lurching for a while.

Last January I started experiencing some weird cole sensations in my legs and arms. That soon followed with twitches and fasciculations everywhere, including my chest, back, tongue, throat, face, foot arches. Often times these fasciculations were accompanied by mild pain that would last a few second or so. I went to 2 different neuros, one a general neurologist and one an ALS specialist in June. After an EMG, blood work, and MRI of brain, neck, and back, all of which were clear except for a noted brisk reflex, I was told that I had anxiety and to se a therapist. The ALS doctor mentioned BFS but didn't officially diagnose me with anything.

I was doing ok with all this until Monday morning. I was in a wedding, danced, drank, and had no symptoms at all. When I woke up on Monday, the back of my left leg ached, my ankle hurt, my hip hurt, and my tailbone hurt. This also had muscle pain. Today, my leg still hurts and I am scared, not only of potential ALS but of PPMS as well.

I should also mention that there have been a few times in the last 10 months where after certain activities my muscle would shake. Some activities were as simple as reclining on my arms while others followed strenuous activities.

I am obviously looking for reassurance here. I am the father of two small children and have been crying myself to sleep the past couple of evenings. Anything, anyone could offer would mean a great deal.

Thanks,
Matt
Mm3952
New Member
New Member
 
Posts: 5
Joined: October 28th, 2013, 9:26 am

Re: New, Cold water sensations, leg pain, and scared

Postby Yuliasir on October 31st, 2013, 2:33 pm

Hi Matt,
you say you danced and you had been drunk.
Hangover is really one of the provoking issue for BFS flareup :)))
taibone, ankle, hip (also spatula, shoulder joint, jaw joints and t-bone are so called trigger points for musculosceletal pains common in BFS and often celled fybromyalgia.
As a person haveng that beep for years I may assure you it has nothing with ALS.

ALS causes weakness, not pain. At least not in the tailbone :)
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: New, Cold water sensations, leg pain, and scared

Postby Mm3952 on October 31st, 2013, 8:48 pm

Thanks for that....
The hardest part of BFS for me is not necessarily the twitches but the pain that accompanies them.
Mm3952
New Member
New Member
 
Posts: 5
Joined: October 28th, 2013, 9:26 am

Re: New, Cold water sensations, leg pain, and scared

Postby Yuliasir on October 31st, 2013, 10:39 pm

yep, and plus the fact that pain threshold might be lowererd too due to hyperexcitability of the central brain...
I think you may try ibuprofene for 1-2 days (if you do not have countreindications of course)
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: New, Cold water sensations, leg pain, and scared

Postby bubbles on November 1st, 2013, 4:54 am

hi matt,
im fairly new here myself,but thought i would reply as all this started with cold water sensations too.started 7+months ago,feelings of cold water running down legs and arms at times.twiching started soon after.i havebeen so worried also,had neuro exam who outruled anything serious,mentioned bfs.was doing ok until a few weeks ago left arm feeling weird,achy and stiff........started the worry all over again.im waiting another neuro appointment,could take ages as im in ireland :(
yuliasir is one of the best members here and has reassured me numerous times,and what she is saying is true...and what i have to keep telling myself is,the sensory issues we are experiencing is NOT related to **s,i hope your feeling better soon x
bubbles
Senior Member
Senior Member
 
Posts: 84
Joined: October 17th, 2013, 7:17 am

Re: New, Cold water sensations, leg pain, and scared

Postby Anxious guy on November 1st, 2013, 5:51 am

Bubbles, I was so worried 4 weeks ago I paid to see a Neuro... Im in Northern Ireland... He said everything was ok and that I didn`t need an EMG but I asked for one anyway as my tongue was bothering me... since then I still have the tongue issue but my tricep is going 24/7 for about 4-5 days... Geeez its worrying but I have noticed that when I calm down the general randon twicthes all subside and appear far less frequent!
Why hotspots ?? I dont know but its the hot spots that really worry me...
Are you in the North Or South ... Just wondering how long it actually takes to see a neuro on the NHS or the healthcare system in the south...
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: New, Cold water sensations, leg pain, and scared

Postby bubbles on November 1st, 2013, 6:02 am

hi anxious
im in south ireland,i saw a general neuro in july,waited around 3 months for appointment,hes in dudlin and considered one of the best in ireland.
i rang my gp yesterday to say that i would pay this time if it made my app come any quicker! i dont think i could wait another 3 months.
its my left arm thats realy bothering me the last 3 weeks,feeling weak and sore with random twitches in forearm,shoulder.
honestly i would pay 1000euro to see a neuro tomorrow!
bubbles
Senior Member
Senior Member
 
Posts: 84
Joined: October 17th, 2013, 7:17 am

Re: New, Cold water sensations, leg pain, and scared

Postby bubbles on November 1st, 2013, 6:18 am

anxios,did you need a gp referral letter to be seen by neuro?
bubbles
Senior Member
Senior Member
 
Posts: 84
Joined: October 17th, 2013, 7:17 am

Re: New, Cold water sensations, leg pain, and scared

Postby Anxious guy on November 1st, 2013, 6:19 am

I'm Belfast and the one I seen was at the private clinic and they are usually among the best, he is also on the NHS but he said it would take a year to see him if I wasn't private pay ... Well my tricep is going bonkers and sometimes hard to feel but if I look at it its constantly doing it..I looked in the mirror this morning and its pretty big muscle movements but kinda awkward to see when Im not looking in the mirror.
If my tongue and tricep would stop I reckon I would be 100% calm...
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: New, Cold water sensations, leg pain, and scared

Postby Anxious guy on November 1st, 2013, 6:21 am

Yes once I visited the GP about the Tongue twitches she said its most likely BFS but as I was so concerned she said she would refer me to see a Neuro and when I asked how long it would take she said months... I then asked her to write the letter and I paid to see one the next day...
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: New, Cold water sensations, leg pain, and scared

Postby BFSBurger on November 1st, 2013, 9:49 am

Mm3952 wrote:I was told that I had anxiety and to se a therapist.

Did you punch him in the face?
You should have.
:)
Yes ... because its totally rational that one day you "woke up with anxiety" right?
Next time someone says this to you, ask them why you didn't have anxiety at any point in your life until that particular moment.
Did you just decide to have anxiety all of a sudden one day?
Decided to start self inducing symptoms of nerve damage?
Ask him if he would be able to self induce nerve damage clinical signs. Have him show it to you.
Doctors are idiots. When they dont know what it is, they feel its ethical to make the patient feel like a dumb*ss and humiliate/belittle/speak condescendingly to them.
Welcome to the brilliant Medical profession circa 2013.
My buddy said next time a doctor tells me its in my head, I should punch him in the crotch and tell him the pain is in his head.

My first symptoms were cold and hot temperature sensitivities too.
Top of right foot, and in my hands.
This was the beginning of the long process called BFS.
Totally normal. Sorry you're going through this, but its not in your head.
And you don't need to see a therapist.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: New, Cold water sensations, leg pain, and scared

Postby bubbles on November 1st, 2013, 9:58 am

totally agree burger,when i first went to gp with symptoms,he looked at me all sympathetically and because i had my son a few weeks before said '' ahh your an anxious mum,and your probably stressed'' so i asked him does he get the feelings of water running down his legs??? lol he couldnt answer that so thats why he referred me :) i WAS anxious by all means but i was only anxious because of my sympyoms!!!
bubbles
Senior Member
Senior Member
 
Posts: 84
Joined: October 17th, 2013, 7:17 am

Re: New, Cold water sensations, leg pain, and scared

Postby Mm3952 on November 1st, 2013, 12:39 pm

Thanks all.....
Is is better to push through the pain or rest?
Matt
Mm3952
New Member
New Member
 
Posts: 5
Joined: October 28th, 2013, 9:26 am

Re: New, Cold water sensations, leg pain, and scared

Postby Anxious guy on November 1st, 2013, 1:50 pm

I feel for anyone getting these symptoms ... We are all in a strange boat for sure but our many symptoms are real, I think for me I started in one place with twitches and my sheer fear and anxiety boosted the symptoms to appear body wide !!
I think it's the same for almost everyone here.
Once my doc seem my twitch and listened to my story she referred me to a neuro right away to be on the safe side and to help me feel assured in her diagnosis of BFS & she did say I was anxious etc too!
I can't believe done of the doctors responses that I read on here, I'm glad my doc was good!
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: New, Cold water sensations, leg pain, and scared

Postby BFSBurger on November 1st, 2013, 3:15 pm

Mm3952 wrote:Thanks all.....
Is is better to push through the pain or rest?
Matt

Without a doubt, rest.
And rest for a long time. Im talking weeks, months. Whatever this is, treats your body like a virus does, and rest, good nutrition, and only very very mild exercise to keep things "flexible" .... are very important.
I stopped drinking and partying for an entire year. No alcohol. No late nights. My social life was done honestly. But I have come out the other end of it thankful. The only thing I did during the year was exercise whole body, mildly. And lost of rest in between. The pains you have (in my opinion) are nerve stabbing pains. These were the first to go when I modified my diet to avoid all gluten foods. I have no idea why. Its just what worked. I would have stabbing sensations all over. Acute severe "ache" in a very specific spot. That's why my doctor thought I had fibromyalgia. BFS mimicks tons of diseases but everything seems to be transient. Short term. When you say "push through it" if you mean just keep on keepin' on with life and stress and periodic drinking and running yourself down, then absolutely no. Your body needs the opposite of that for several months now. If you mean keep on with your day and do very careful resistence exercises every few days of every muscle group? Then lots of rest between? Yes. Don't run yourself down anymore. 8+ hours of sleep every night. Try dropping all gluten, avoid pastas and breads. See if it helps.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: New, Cold water sensations, leg pain, and scared

Sponsor

Sponsor
 

Next

Return to Experiences with BFS

Who is online

Users browsing this forum: Bing [Bot] and 4 guests