Is this really BFS???

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Is this really BFS???

Postby ErikS on April 19th, 2012, 6:18 am

What happened with me:

1994 - Start hyperhydrosis
All out of nothing I got heavy hyperhydrosis during stressful period (exams - I was 17 at that time). Hyperhydrosis was in my face but over the next decade it expanded to my upper back and upper breast.

2006 - Not a classic case of hyperhydrosis
After a lot of psychology counseling where no cause could be found, got a consultation for performing a sympathectomy (cutting the nerves). However, the professor specialized in hyperhydrosis was a bit amazed by the fact the hyperhydrosis was expanding. His exact words were: "This is not a classic case of hyperhydrosis". Sympathectomy was not performed

2006 - Large thymus
To be fully sure, I did also a consultation by a very renowned immunologist. I appeared to have a large thymus and it was urgent enough to put me through some scanner the day after to see whether it has "Thymus Carcinoma". A thymectomty (i.e. removal of thymus) would be necessary even the day after in case the scan would be positive. It was not cancerous luckily.

2007 - Each oxybutynine dose works 6 hours
From the same immunologist I got prescribed Oxybutynine (an anticholinergic medication) to see whether it would solve my issues with hyperhydrosis. Oxybutyine is normally used for problems with the bladder, but side effect could be that it reduces sweating. Well... for me this medicine worked more than brilliant for relieving me of my complaints. After each dose I was sweat free for 6 hours.

August 2011 - Much stress after big drop + hyperhydrosis is gone
* I made a big drop
* In the next few days I developed a lot of pain in my right ribs (few months later it appeared they had fractures in them)
* I developed backpain the week after disabling me even to walk (note: I have spinal stenosis in my back)
* I stayed home a couple of days to recover. This was very stressfull due to the pain in my back and anxiety
* I stopped using the oxybutyine medication against hyperhydrosis and I can tell that the hyperhydrosis appeared gone. Half a year later I can tell that I still haven't had it back. Mega-relief.

September 2011 - Pain in hands starts
* During the recovering of the drop I started getting aches in my finger joints
* After returning to work I even had two instances whereby I got a electric jolt in my hands: once using a simple stapler and the other whilst turning a knob.
* Pain started to expand into my lower arms
* An MRI was made of my spine. Apart from the spinal stenosis in lower back it looked good.
* EMG was made of my arms and it was good

October 2011 - Twitching starts
* I had a small twitch in my right thumb end of september. Was gone the day after
* Had a big twitch (myokymia) in my left knee during stressfull period
* Was sent to neurologist a few weeks later. He didn't find issues but prescribed me with amitryptyline (also an anticholinergic like oxybutyine)
* I reacted massively heavy against the amitryptyline. I had to stop after three days. I had massive headache and also got heavy twitching in my feet and right knee (for three days I barely could sleep - the knee was more myokymia)
* After stopping with amitryptyline I also had three time a tremor (heavy shaking in especially legs). This during two days and after a long distance of cycling

Oct-2011 to Mar-2012 - expansion of twithcing area
* Twitching is going up from my feets to my buttocks
* After pain in arms, I also have some twithcing in biceps which expanded to shoulders and upper back
* I started also getting problems with sitting and standing. Note: I do not have weakness. I swim long distances without problem.
* I looks like it is slowly creeping up from my hands / feet to the 'core' of my body. This worries me.
* Another EMG has been performed end of 2011 and it was also good. I was prescribed rivotril (clonazepam) and this helps me to sleep.
* I am now going to a psychiatrist (a renowned one specialized in chronic fatigue). He think it is caused by overload, but can't explain the twitching.

April 2012 - Lower back surgery
* since twitching and pain is most severe in legs, a laminectomy was perfomred two weeks ago (lower back surgery).
* After waking up from the surgery, the pain and fasciculations in my leg were gone. And I say TOTALLY gone!
* Few hours later it slowly started again
* two days later I had MASSIVE fasciculations / myokymia in both the front side of my upper legs
* A day later it had massive myokymia in the lower side of my upper legs.
* These fascics / myokymia is relatively gone now. I had my arm / leg move even from the heavy myokymia
* Still a lot of fascics in my calves and lower side of my feet
* almost constant pain in my calves
* pain in my knee joints
* pain in my right lower arm (my mouse arm)

So... WTF is going on
* I have no clue... I thought this was B(C)FS. But the pain?
* Strange thing is that when I walk or cycle I don't have much pain complaints?
* Further, can somebody explain why on earth the symptoms were gone in the period 6 hours after the surgery? I can explain the pain being gone, but the fascics?? Is this due muscle relaxants? In the last 17 years I never felt better than in the 6 hours after this surgery? Can it be that I have a huge stress overload problem or?
* Can this be hyperventilation causing problems in my body? I seem to react relatively well to magnesium intake.
* Can this be something else? Don't forget I had quite a long period hyperhydrosis (over a decade). Is this something psychosomatic?

Sorry for the massive piece of text, but I couldn't do any shorter... Too much happened and it is relevant to see the total picture.

Final remark is that the psychiatrist also requested a sleep study from a neurolgist. This since I tend to sleepwalk intensively and last year also had lots of problems sleeping (before the twitching started). This will be done when I recovered from the laminectomy surgey (expected end of may.

Any guesses???
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Re: Is this really BFS???

Postby chrissi on April 19th, 2012, 9:40 am

Eric, to me you seem like a classic case of CFS. I have seen a specialist for CFS and ave read a lot about this. Excessive sweating can for many people be a part of fibromyalgia and CFS. My doc said additionally to that, muscle pain and fasciculations are also hallmarks of CFS. In those diseases chronic hyperventilation and over-tensing of muscles are often involved.
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Re: Is this really BFS???

Postby ErikS on April 19th, 2012, 9:47 am

Hi Chrissi,

You mean CFS like Chronic Fatigue Syndrome or Cramp Fasciculation Syndrome?

Tnx,

Erik
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Re: Is this really BFS???

Postby chrissi on April 19th, 2012, 9:48 am

chronic fatigue syndrome
"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: Is this really BFS???

Postby ErikS on April 19th, 2012, 10:09 am

Understood:)

But the issue is that I don't have fatigue. It hurts and twitches. I should note that I use to swim 2.5 km (100 laps of 25m) during weekdays and cycle 40 km each saturday + sunday. Not now during recovery of surgery by the way and now I see a flare up of my complaints.

Before I got the symptoms I was working almost day & night and was sporting even more extreme (up to 5km of swimming on an evening). Stress (physical and mental) was really up to the max at the moment the latest issues started. The psychiatrist I have, stated I went over the edge and the question is whether I will be able to recover. I should note that in the beginning of my complaints I wasn't able to even touch a keyboard without having excruciating pains let stand write. I even went to a bingo a month after the problems started where I couldn't even keep hold of a pencil. 6 months later I am able to do so again:)

But can chronic fatigue explain the fasciculations, myokymia up to sudden movement of leg / arm whilst lying down (happens rarely) ?? These things make me worry I have neuropathy or something.

Note; hyperhydrosis is gone so I don't have that any more. Thank god for that because if I may make the choice between twitches and hyperhydrosis it is without any doubt the twitches.
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Re: Is this really BFS???

Postby chrissi on April 19th, 2012, 10:26 am

Doctors are not even sure where to make the cut between Fibro, CFS and BFS, maybe it is even different "faces" of one an the same disease, wo knows. But the fasciculations and the sudden movements (often called jerking here or (electric) jolts) are very common with BFS. In my beginning I could not even eat using fork and spoon because my hands tightened up so bad.....half a yearlater I could eat with chopsticks again
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Re: Is this really BFS???

Postby raindog on April 20th, 2012, 6:19 am

My Neuro is now saying its quite possible that i have Chronic Fatigue as well as the PNH...he says they are 2 seperate illnesses but often go hand in hand because of autoimmune dysfunction.
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Re: Is this really BFS???

Postby ErikS on April 29th, 2012, 5:15 am

Some update... I had both a laminectomy and a bulging disk removal on L4/L5 almost 4 weeks ago. This because my legs hurt and also had an increasing pain whilst standing / sitting. I have fasciculations 6 months prior to surgery (full story is above). The last two weeks I have been bothered by pain in my upper right leg (innerside). Doctor thinks it is an overexerted muscle since it does not comply with the L4/L5 level at which I received surgery.

1. They gave me amitriptyline after surgery. I had two days of major twitching in my upper legs afterwards. I really get the idea there is some causality between this amitriptyline and me getting twitches. Each time I use amitriptyline I come out worse with twitching.

2. Later on I received ibuprofen (2x 800mg / day). This combined with omaprazol. After using two days I have massive burning sensation all over my body. After stopping it went slowly away. I tried another time (one day) and again burning sensation all over. I stopped using it since and I still have some of the burning feeling in my body.Each time I use an NSAID I end up getting pain somewhere.

Now... my GP stated I probably have peripheral neuropathy?! This since I have pain in both my legs + arms that expand into the rest of my body. Please note that two EMG's were made (october + 2 months later and they were both clean).

Issue is that I have no clue what is going on?! My calves hurt like hell sometimes (not at all times by the way). Still have difficulty standing. Sometimes the fascics can better be described as myokymia. I had two occassions lately that one of my calves completely contracted (no spasm by the way).

Any clues??? Can this still be chronic fatigue.
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Re: Is this really BFS???

Postby plainslady on April 29th, 2012, 3:07 pm

I've had peripheral neuropathy mentioned as well, but I just don't buy it because my symptoms aren't consistent. I may have pain/buzzing/tingling/twitching or a variation of these for days on end,followed by a time when I have few, if any at all. My symptoms are predominantly in my right leg, occasionally in in left, and rarely in the arms. I get twitching in my arms but very rarely pain. Usually when I have pain in my arms I can feel a pinch in my upper back vertebrae which explains that away.

In the beginning my twitches were more of a hard, jerking type twitch. At times I felt as if my movements were very "jerky", though not all the time. Now I rarely have these types of twitches, as mine have morphed into the more thumping type along with the rumbling type. Also, the sensory issues have become more of an issue for me than the twitching.

I've had numerous theories suggested to me by doctors I know well and respect, but it just seems the symptoms don't particularly match any one diagnosis. It's almost as if there are several contributing factors to my experience.

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Re: Is this really BFS???

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