My "One Year" post!

BFS Online Support Group

Moderators: JohnV, Arron, garym

My "One Year" post!

Postby Xina535 on July 28th, 2014, 11:53 am

Like others on here, I started twitching in July last year, so I am at my one year point. Taking my notes from another post:

Since twitching: 3 different primary care doctors, 4 clean visits at 2 different neuros (reflexes, clinical tests), 2 clean nerve conduction tests in my arms (one at each neuro), 1 clean EMG at the 2nd neuro, a couple of x-rays and lumbar MRI from my orthopedic (all clean), clean testing from a Rheumatologist for ANAs, two different psychotherapists, several deep relaxation hypnosis, acupunture, physiotherapy, massage, PMR, hot bath/sauna and electric stim sessions, consumption of several homeopathic and medications, driving my family crazy, driving some of you on here crazy, and I am still "here" - meaning, alive - struggling still, but not in a wheelchair. No diagnosis other than BFS, psychosomatic, panic and "integration" syndromes (something my therapist diagnosed me with, thinking it has to do with me moving to Germany from the US). No swallowing, throat or speech issues, no cramping (where muscles contract, is painful and cannot be straightened right away) and twitching is A LOT less, but it seems I have entered a pain phase.

Main symptoms that I am currently struggling with:

STILL have the right hand pain and dexterity issues. Nothing helps it. Massage helped it feel better for a day, but another massage did not help. When I poke around a little, the thenar hurts still and what seems to be the tendons on the back side. Mainly the one between thumb and index finger. Sometimes wrist hurts along with it. Left hand is totally fine. I keep questioning the dents that I see on my hand, trying to determine if they are atropy, and if the dexterity issues are getting worse. My daily log symptom tracker says this comes and goes.

Left leg, outer thigh, tightness and pain. This happened, then went away with physiotherapy. It's happening again and since it started up again, I feel weird when I walk. It feels uncoordinated. I've stumbled a couple of times recently and this has me freaking out again. I can walk ok on my heels and toes, and climb stairs and stand on both legs without problems. I am wondering if this is the IT Band (tendon) that is acting up. I looked at pictures of this band and that is exactly where the pain and tightness is. Nowhere else in my thigh muscle. This is increasing.

Right chest pain – still there, as it always was. Nothing has helped. What IS that!? I was told it was due to gastritis, but all the medicine I’ve taken for that has not made my chest pain go away. This comes and goes in intensity.

NEW - In the last weeks, a certain point under my right foot started getting painful. Then it got worse and as that got worse, the same point under my left foot started hurting. Both hurt, bad! I couldn’t sleep well this weekend because of it. Sometimes it feels like a burning, but mostly, it feels like something is happening to that one tendon that sticks out between heel and big toe. I can’t really pin point the pain. NO idea what this is and it’s freaking me out, of course. I have been walking in my orthopedic shoe inserts, but that’s not helping. I soaked my feet, but does not help. The massages I had also haven’t helped. Also wondering if this is a tendon problem. The intensity of the pain comes and goes, but is always felt.

So if this is all a related tendon problem, then why? Because I took Cipro back in 2013 which is when most of my issues started happening (cipro is linked to tendon and even nerve damage)? I read that tendons can act up if muscles get weaker….which is EXACTLY what I did not want to read. :cry:

If not a tendon problem, then??

I am going around in circles, wondering what else I can do to help my symptoms, waiting for symptoms to die down, PRAYING that they don’t get worse, hoping no other new symptoms come, or at least if they do, they come when these other have gone away, wondering which doctor to visit and tell this to (and when, at what point). Keep reading my clean EMG report, wondering if it was done in the right places or if I need another one with these new symptoms. All the medical websites say to go to a doctor when pain does not heal on its own after awhile and if it gets worse. But I know the doctors don't want to see me, they will write it off on anxiety. :x And if they truly believe it is somatic, then why are they not sending me to a somatic clinic? So many more thoughts...

Even with the twitching having died down, I am still an anxious wreck. I find it such a struggle to get out of this traffic round-a-bout (or rotary) after having had been scared for my LIFE for so much of this past year.

So, that’s where I am at, at one year, after googling “muscle twitches” when I first started twitching. :roll:
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: My "One Year" post!

Postby Bibi on July 28th, 2014, 2:56 pm

Xina535 wrote:Like others on here, I started twitching in July last year, so I am at my one year point. Taking my notes from another post:

Since twitching: 3 different primary care doctors, 4 clean visits at 2 different neuros (reflexes, clinical tests), 2 clean nerve conduction tests in my arms (one at each neuro), 1 clean EMG at the 2nd neuro, a couple of x-rays and lumbar MRI from my orthopedic (all clean), clean testing from a Rheumatologist for ANAs, two different psychotherapists, several deep relaxation hypnosis, acupunture, physiotherapy, massage, PMR, hot bath/sauna and electric stim sessions, consumption of several homeopathic and medications, driving my family crazy, driving some of you on here crazy, and I am still "here" - meaning, alive - struggling still, but not in a wheelchair. No diagnosis other than BFS, psychosomatic, panic and "integration" syndromes (something my therapist diagnosed me with, thinking it has to do with me moving to Germany from the US). No swallowing, throat or speech issues, no cramping (where muscles contract, is painful and cannot be straightened right away) and twitching is A LOT less, but it seems I have entered a pain phase.

Main symptoms that I am currently struggling with:

STILL have the right hand pain and dexterity issues. Nothing helps it. Massage helped it feel better for a day, but another massage did not help. When I poke around a little, the thenar hurts still and what seems to be the tendons on the back side. Mainly the one between thumb and index finger. Sometimes wrist hurts along with it. Left hand is totally fine. I keep questioning the dents that I see on my hand, trying to determine if they are atropy, and if the dexterity issues are getting worse. My daily log symptom tracker says this comes and goes.

Left leg, outer thigh, tightness and pain. This happened, then went away with physiotherapy. It's happening again and since it started up again, I feel weird when I walk. It feels uncoordinated. I've stumbled a couple of times recently and this has me freaking out again. I can walk ok on my heels and toes, and climb stairs and stand on both legs without problems. I am wondering if this is the IT Band (tendon) that is acting up. I looked at pictures of this band and that is exactly where the pain and tightness is. Nowhere else in my thigh muscle. This is increasing.

Right chest pain – still there, as it always was. Nothing has helped. What IS that!? I was told it was due to gastritis, but all the medicine I’ve taken for that has not made my chest pain go away. This comes and goes in intensity.

NEW - In the last weeks, a certain point under my right foot started getting painful. Then it got worse and as that got worse, the same point under my left foot started hurting. Both hurt, bad! I couldn’t sleep well this weekend because of it. Sometimes it feels like a burning, but mostly, it feels like something is happening to that one tendon that sticks out between heel and big toe. I can’t really pin point the pain. NO idea what this is and it’s freaking me out, of course. I have been walking in my orthopedic shoe inserts, but that’s not helping. I soaked my feet, but does not help. The massages I had also haven’t helped. Also wondering if this is a tendon problem. The intensity of the pain comes and goes, but is always felt.

So if this is all a related tendon problem, then why? Because I took Cipro back in 2013 which is when most of my issues started happening (cipro is linked to tendon and even nerve damage)? I read that tendons can act up if muscles get weaker….which is EXACTLY what I did not want to read. :cry:

If not a tendon problem, then??

I am going around in circles, wondering what else I can do to help my symptoms, waiting for symptoms to die down, PRAYING that they don’t get worse, hoping no other new symptoms come, or at least if they do, they come when these other have gone away, wondering which doctor to visit and tell this to (and when, at what point). Keep reading my clean EMG report, wondering if it was done in the right places or if I need another one with these new symptoms. All the medical websites say to go to a doctor when pain does not heal on its own after awhile and if it gets worse. But I know the doctors don't want to see me, they will write it off on anxiety. :x And if they truly believe it is somatic, then why are they not sending me to a somatic clinic? So many more thoughts...

Even with the twitching having died down, I am still an anxious wreck. I find it such a struggle to get out of this traffic round-a-bout (or rotary) after having had been scared for my LIFE for so much of this past year.

So, that’s where I am at, at one year, after googling “muscle twitches” when I first started twitching. :roll:


If have this pain in my left foot which have been twitching for 3 months now , it scares me to Read that it Can be tendon that act up due to weakness. I feel that The tendon is tight and painfull When i touch it with my fingers. And my left foot is thinner than my Right foot.
Bibi



than The Right foot.
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: My "One Year" post!

Postby Xina535 on July 28th, 2014, 4:42 pm

I am sorry to hear about your pain. Are you sure your foot is thinner/smaller, or is it not symmetrical? Did you take pics, measure it, ask others for opinion? My feet did not twitch much when I was twitching a lot, I had other hot spots. They did twitch though. I do not have any known uneven sizes. My left side matches my right, in size/girth/appearance. Symmetry and muscle strength are different things, the sides will not be symmetrical and are expected to be stronger in your dominant side.
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: My "One Year" post!

Postby Bibi on July 29th, 2014, 3:13 pm

Hi Xina
I am sure that my left foot is thinner , but i dont know if it has been so before this twitching began. It really scares me that this foot Twitches All Day and for The last coupe of days also hurts in The tendon. My Right leg and foot does not Twitch much , but Right leg feels stiff and Heavy every time i Walk A little ?? I am going to A neuro 28/8 and i am so nerveos that this isnt benign , it is hard to understand why i suddenly have these symptomes in my age ( 55 )
Bibi
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: My "One Year" post!

Postby Xina535 on July 30th, 2014, 4:01 pm

Ok good that you are going to a neuro!!!

Do you have a weakness, that is just not perceived? like stumbling, tripping, can't get up stairs?
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: My "One Year" post!

Postby Bibi on July 30th, 2014, 4:11 pm

Xina535 wrote:Ok good that you are going to a neuro!!!

Do you have a weakness, that is just not perceived? like stumbling, tripping, can't get up stairs?


No , thanks god , i also have done self-tests , like walking on heels, tiptooes etc. I Think i am ok strong as far as i know, but i have very skinny hands and legs, i always have , so it its hard too say if They has become thinner.. I really hate too look at my hands , i renember that You posted pictures of your hand :wink: You should see mine.
Bibi
Bibi
Selfless giver of time
Selfless giver of time
 
Posts: 152
Joined: May 16th, 2014, 5:57 pm

Re: My "One Year" post!

Postby Xina535 on July 30th, 2014, 4:21 pm

I know what you mean about not wanting to look at hands! I keep mine wrapped when I can so I don't see them. Good that you don't have weakness!!! Very good! Have you been tested for anything auto-immune or hormonal disorders (blood tests?). I believe that can cause thinning hands/feet.
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: My "One Year" post!

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 4 guests