My story. Anybody else with signs before disease?

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

My story. Anybody else with signs before disease?

Postby Kenny on October 10th, 2013, 4:16 am

Hi there all.

I'm kind of wondering if this is the right place for me. Be kind and read my story, and help me understand what is going on with my body.
I'm a 36 years old man.

I was previous extremely active. Lifting wheighs x5 weekly and jogging / hiking mountains 2-3 times a week. It has been this way for about 15 years.

In the fall of 2011 I started noticing painlless discomfort in both my hips, but I thought it was just my body adjusting to me recently having doubled my leg training.
In february 2012 i pulled my hip during fast walking. But the injury didn't seem to heal. Instead the pain increased and went to the groin and then up to my other groin a month later. I got nasty pain in the skin and the muscles. I could barely sleep, and my hips had to avoid certain positions. Even so I tried to stay a little active. After a biking trip a couple of months later I suddenly started to rachete when I went down the stairs, the fasciculations and shaking all over started. And I started to pull muscles real easy.

It became wery bad after a while. Rubber legs (still has them), twitching, globus sensation, hip pain, hyperesthesia, neck pain, headaches, RACHETING (freaks me out), joint pain, muscle aches, fatigue in my legs, leg cramp (just 1 time), heavy shoulders, tinitus, light headed to name some. I could only stand up for a few minutes due to my hip pain, and I could only walk a couple of hundred meters.

I've never been a anxious person, but I think I've had sort of a jumpy nervous system due to me easily getting the cills and beeing sort of jumpy I guess.
Prior to this happening I've been experiensing hyperesthesia on several occations and places for several years, but I never thought about it until now. They just went away after a couple of days and there could be months between them, I thought I'd just stressed som nerves during training. I've also experienced some fasciculations, but nothing that did not stop after some hours.

I' been to 2 neurologists and 3 doctors. I've done all the testing. MRI, spinal tap, EMG, neurography and all the blood testing. Nothing.
I've also tested for lyme at a alternative clinic and the results were inconclusive. But I tested positive for mycoplasma pneumoniae IgG and IgA.

I lived mosly lying/sitting for almost 6 months. But then the hip pain sloooowly decreased, and I could walk around a bit more.


As for now I'm feeling a lot better, but far from ok. I twitch in my calves 24-7. My left upper eyelid is also going at it all the time. But the symptoms that gets to me is the hip pain/discomfort and hip fatigue. They keep me from being active. I also have muscle aches in my hips. My butt feels sort of numb when I sit for a while. If I squat 8-10 times my hip flexors and adductors start to cramp up and I have to ease out of the flexed position. No weakness. I also have a CONSTANT burning tender feeling in the skin of my hips. This has lasted 18 months and is showing no signs of going away. I still have the racheting, but to a far lesser extent. My legs feel like rubber, but I can run/walk for a while.

Obviously I've been through all the scares of MS and ALS, but I do not fear them no more. But I do fear some kind of myopathy or Isaacs in early stages which will increase and at some stage disibilitate me. And I mourn my previous life and the fact that there is a good chance I won't be able to take my 9 month old son up in the mountains when that time comes.

I've been positive about the improvements in my condition for a long time, but a week ago it all started to flare up. More hyperesthesia, fasciculations, pre-cramp feeling in my legs and biceps, all over internal trembling. I decided to join this forum to get some insight and possibly help others in this situation.


Have anybody else had signs before the disease that something was wrong? I had hyperesthesia for at least 5 years prior. And I've had a stabbing pain in my right rib for just as long which could wake me up screaming. I just thought it was kidney stones or something. I also had fasciculations and buzzing on occations, but more than normal people? It was normal for me.

Do anybody else in this forum have the CONSTANT hip/top of the leg discomfort/fatigue/sensory issues ? (This is why I fear myopathies, as they tend to start in the hips).


Please do apologise if my english has some flaws, it's been a while.

Any reply would be extremely valuated!

Regards
Kenny
Kenny
New Member
New Member
 
Posts: 4
Joined: August 4th, 2013, 1:04 pm

Re: My story. Anybody else with signs before disease?

Postby Anxious guy on October 13th, 2013, 1:47 pm

Hey, sorry to hear your having troubles... How are you now?
I understand that you have always been a fit person but at 36 it's possible to pull muscles and then can linger for longer as your not just as young as you used to be...
Would I be right in saying you have developed a bit of health anxiety?
I'm personally a laid back person until it comes to my health and that's what causes me my anxiety and because right now I have a twitching tongue for the past couple of weeks followed by twitching all over I've been worried sick but I believe I'm coming out of my worry...
Hope your feeling better, I would also point out that you seemed to have got worse around the time of your child being born.... Me too... That's a big change and even if you don't realise it ... It might have caused you anxiety and stress...
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: My story. Anybody else with signs before disease?

Postby Yuliasir on October 13th, 2013, 10:44 pm

Hi,
I would like to say your story looks quite similar to typical one posted here: extreme training and quite a little of attention to what your body says to you (which is typical to almost all of us, whether athletes or on-athletic persons).

BFS seems to be a stress disorder, as far as I can judge - no matter, if the vicitm has previous story of anxiety or not: we all had physical and \or emotional stresses practically over the limit of tolerance. For some of us health anxiety is added as a result on central brain giveup (fortunately, temporary), some are unhappy to have such brain structure for years and decades, but practically each and every story herer is jusy yelling about body and soul which had no rest for many preceding years and there was no chance for them to bring attention to that other than develop BFS disorder.

As for your condition, I may say that it is still worth for you to see a specialist for venous circulation (phlebologist) becasue constant and inclreasing pain in the hip may indicate some vein troubles which need attention, and that this often happens to very trained and fit persons.
Increased light cramps in legs and hands (easily ceases with changed position) are typical part of our symptom set, I have them for years and they did not evolve into something disabling (and on my point of view suggest also bad circulation).

as for the rest, I can tell you that you still have about 8-10 years minimum (on my point of view) ahead before you can take your boy to the mountains, and BFS ususlly settles down within 2-3 years, if you would keep weighted schedule and control your mental conditions properly. So you still be able to hike mountails with him I beieve.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: My story. Anybody else with signs before disease?

Postby BFSBurger on October 14th, 2013, 8:47 am

Kenny wrote:Lifting wheighs x5 weekly and jogging / hiking mountains 2-3 times a week. It has been this way for about 15 years.


And again. The most common theme on this site.

You have overtrained. Severely. And you've begun to self induce serious damage to your body.

Take a full year and do nothing but rest. Mild maintenance workouts at the very most.

Yes. A full year.

Increase sodium and electrolyte intake - daily. Gatorade.

Increase the healthy fats significantly. At least 1 gram of DHA fish oil daily. Fresh salmon at least once a week for more fats.

Your brain and central nervous system are craving this right now.

Find out where your cholesterol is and increase healthy cholesterol intake as much as you can. Your nerves and myelin need this badly right now.

Please spend several days googling ways to decrease inflammation. Anti inflammatory foods. Anti inflammatory drinks. Anti inflammatory lifestyle.

Consider Dead Sea Salt baths - 2 to 3 a week. Hot water.

Your body is like this right now:
Image

You need to do everything from head to toe to ELIMINATE anything promoting inflammation and agitation, and immediately begin on a lifestyle promoting the very opposite.

Then give your body at least a year to heal.

Google leaky gut diet. Gut permeability. Seriously consider Paleo with safe carbs (potatoes or rice).

Take care of yourself.
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: My story. Anybody else with signs before disease?

Postby Kenny on October 14th, 2013, 4:41 pm

Anxious guy wrote:Would I be right in saying you have developed a bit of health anxiety?
Hope your feeling better, I would also point out that you seemed to have got worse around the time of your child being born.... Me too... That's a big change and even if you don't realise it ... It might have caused you anxiety and stress...


Hi. Thanks for reply.
I didn't have any health anxiety before this happened to me, but I certainly got it bigtime when my body went crazy. Before this happened, like I said, I had several symptoms which I just shrugged away as unimportant. I also trained through several tendinopaties on various locations and 5-6thoracic disc prolapses without decreasing my training. I just altered the routine until I could retain my normal exercises again....
My body went crazy about six 9 months before my boy were born, but I did pick up a rather significant house morgage around the time this started. Significant? I really can't say.

Yuliasir wrote:
As for your condition, I may say that it is still worth for you to see a specialist for venous circulation (phlebologist) becasue constant and inclreasing pain in the hip may indicate some vein troubles which need attention, and that this often happens to very trained and fit persons.
Increased light cramps in legs and hands (easily ceases with changed position) are typical part of our symptom set, I have them for years and they did not evolve into something disabling (and on my point of view suggest also bad circulation).

as for the rest, I can tell you that you still have about 8-10 years minimum (on my point of view) ahead before you can take your boy to the mountains, and BFS ususlly settles down within 2-3 years, if you would keep weighted schedule and control your mental conditions properly. So you still be able to hike mountails with him I beieve.


Hi, thank you for your insight.
I will certainly look into the venous circulation question with my doc later this week. She's really hepful and usually asks me if I have anything which I want to check out. She has little clue of what is wrong with me though.....
It's been 18 months of this living hell by now, but it has become better, so another 18 months or so will be no problem as long as I see further progress. But my mind really goes into a dark plase during flare ups.....


BFSBurger wrote:
Kenny wrote:Lifting wheighs x5 weekly and jogging / hiking mountains 2-3 times a week. It has been this way for about 15 years.


And again. The most common theme on this site.

You have overtrained. Severely. And you've begun to self induce serious damage to your body.

Take a full year and do nothing but rest. Mild maintenance workouts at the very most.

Yes. A full year.

Increase sodium and electrolyte intake - daily. Gatorade.

Increase the healthy fats significantly. At least 1 gram of DHA fish oil daily. Fresh salmon at least once a week for more fats.

Your brain and central nervous system are craving this right now.

Find out where your cholesterol is and increase healthy cholesterol intake as much as you can. Your nerves and myelin need this badly right now.

Please spend several days googling ways to decrease inflammation. Anti inflammatory foods. Anti inflammatory drinks. Anti inflammatory lifestyle.

Consider Dead Sea Salt baths - 2 to 3 a week. Hot water.

Your body is like this right now:
Image

You need to do everything from head to toe to ELIMINATE anything promoting inflammation and agitation, and immediately begin on a lifestyle promoting the very opposite.

Then give your body at least a year to heal.

Google leaky gut diet. Gut permeability. Seriously consider Paleo with safe carbs (potatoes or rice).

Take care of yourself.


Thank you for several ideas to follow.
I've tried some lifestyle changes already. Training was impossible exept some push ups and pull ups. And since my hip pain decreased, I've tried to do a daily walk. In total I've lost 10 kg of muscles, so I've certainly been taking it easy!
I eat lots more vegetables, and I try to live "mediterranian style". But I slip quite often :( I've cut my sweets way down, and my alcohol consumption is down to 3-4 units a week.
I will certainly increase my intake of fish (and gatorade!?)

Sincerely grateful for your answers.

Kenny
Kenny
New Member
New Member
 
Posts: 4
Joined: August 4th, 2013, 1:04 pm

Re: My story. Anybody else with signs before disease?

Postby BFSBurger on October 15th, 2013, 12:14 pm

Kenny wrote:In total I've lost 10 kg of muscles, so I've certainly been taking it easy!

I experienced this too. Minium 20lbs of weight loss in the first months of this. Something is agitating / aggravating our nervous system. It could be cortisol or other chemicals that are doing the damage, but at its peak, i lost weight because of this overall "stress" on my system. I lost strength because of this stress as well. There was a direct correlation between muscle loss, strength loss, and the amount of stress I experienced the week prior. Self induced or BFS induced. Didn't matter. Stress saps you of strength and vitality. The only way I got a handle on it was to saturate my body with nutritional goodness .,.. eliminate emotional and mental stress ... and really take care of myself.

I eat lots more vegetables, and I try to live "mediterranian style". But I slip quite often :( I've cut my sweets way down, and my alcohol consumption is down to 3-4 units a week.

Try to eliminate the alcohol. All it does is put strain on your system. Make you more tired after. More run down. This is the exact opposite of what you need. Sugars as well. Initial high, followed by sapped energy levels. If you want energy focus on complex carbs like rice or potatoes. Clean eating. Meditteranian is an outstanding diet. Lots of Olive Oil. This isn't some magic diet pill. All this is, is taking what we know about eating right, and letting it nourish your system. Avoid pastas/noodles/glutens and grains / breads. Focus on chicken, veggies, and complex carbs. Eat "clean" as they say in the health world. Very clean.

I will certainly increase my intake of fish

Careful. Only 6 ounces maybe twice a week. Salmon is best, but contains mercury. Much better to get your EPA and DHA from fish oil capsules. Try to get 1000mg DHA per day right now.

(and gatorade!?)

Before, during and after any activity. I don't know what your pre and post supp regimen was when you were killing it at the gym, but my friends had me convinced that Salt served only to cause "bloating" and sugars were "of the devil". So i intentionally murdered myself at the gym, and drank nothing but plain water. My sodium intake was nearly zero and sugar as well. Destructive for the brain, the central nervous system, muscles, and even the electrical impulses that cause "firing" of the muscle fibers (cough-BFS) ... potassium, sodium, electrolytes, and sugars all necessary for proper firing of muscles. So yes. Gatorade. Advise the "O2" formula in "Yellow" as it has the least amount of food coloring.

In the end - getting a hold on your mind and your personal emotional stress levels is imperative. None of the above will help if these aren't tackled as well.

-BFSB-
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: My story. Anybody else with signs before disease?

Postby johnnythejet on October 15th, 2013, 1:38 pm

BFSBurger wrote:In the end - getting a hold on your mind and your personal emotional stress levels is imperative. None of the above will help if these aren't tackled as well.


As proven by droves of long-term data reported by this site, getting a hold of mind and stress levels are imperative. Its not surprising that none of the other suggestions above will seem to help unless you address the one thing we know works, and that's because we know they largely have no significant effect on twitching and BFS symptoms. The above mentioned changes, along with a myriad of other options (other diets, medications, herbal remedies, etc.) have also *seemed* to help many other newer twitchers. This has been a re-occurring theme in this community for years.
User avatar
johnnythejet
Saint
Saint
 
Posts: 1602
Joined: September 15th, 2005, 2:36 pm
Location: Kansas

Re: My story. Anybody else with signs before disease?

Postby Kenny on October 16th, 2013, 4:24 pm

Hi!
Again, thanks for your input. Highly valuated!

BFSBurger wrote:
Try to eliminate the alcohol. All it does is put strain on your system. Make you more tired after. More run down. This is the exact opposite of what you need. Sugars as well. Initial high, followed by sapped energy levels. If you want energy focus on complex carbs like rice or potatoes. Clean eating. Meditteranian is an outstanding diet. Lots of Olive Oil. This isn't some magic diet pill. All this is, is taking what we know about eating right, and letting it nourish your system. Avoid pastas/noodles/glutens and grains / breads. Focus on chicken, veggies, and complex carbs. Eat "clean" as they say in the health world. Very clean.

Before, during and after any activity. I don't know what your pre and post supp regimen was when you were killing it at the gym, but my friends had me convinced that Salt served only to cause "bloating" and sugars were "of the devil". So i intentionally murdered myself at the gym, and drank nothing but plain water. My sodium intake was nearly zero and sugar as well. Destructive for the brain, the central nervous system, muscles, and even the electrical impulses that cause "firing" of the muscle fibers (cough-BFS) ... potassium, sodium, electrolytes, and sugars all necessary for proper firing of muscles. So yes. Gatorade. Advise the "O2" formula in "Yellow" as it has the least amount of food coloring.

In the end - getting a hold on your mind and your personal emotional stress levels is imperative. None of the above will help if these aren't tackled as well.

-BFSB-


Regarding foods I feel that I'm damned if I do, and damned if I don't. By that I mean that a reward in the weeknd with "normal" food and some wine and beer helps me keep my sanity. If I reject all these things, I feel that the focus of this condition takes over my life totally, and so makes me think more and stress more about it. And this is what we ultimately want to avoid if you get what I mean. Thats why I've decided to go down the middle. Definitely improve my food intake and eat as clean as possible, but for my mental health still enjoy a couple of treats in the weekend.

In retrospect I see that my pre and post supp regimen could have been a bit rough on my body. I trained wheigts every day before work at 7 AM. Ate a bowl of grains, milk, raisines and some jam before training. And did not drink / eat anything exept water until 1200 for lunch. I didn't have the time for eating, it was a habit I was comfortable with.

Cheers K
Kenny
New Member
New Member
 
Posts: 4
Joined: August 4th, 2013, 1:04 pm

Re: My story. Anybody else with signs before disease?

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 4 guests