Balance, Coordination, Dissociation, Contractions

[ChrisD]

I recently post on here about physical changes that I have found after having CFS/Fibro for 1.5 years inc. knees buckling in, straightened spine, rounded shoulders etc. :

http://forums.phoenixrising.me/index.php?threads/physiological-changes.50911/#post-840234

I find this all pretty concerning that within such a short space of time, that weakness and muscle loss can affect the musculoskeletal system so drastically. Also that these are some of the symptoms that get lost in the title Chronic Fatigue Syndrome.

Last year when I was stressed with working and having CFS/Fibro, I had some pretty strange episodes of adrenal surges, restless legs, involuntary movements, numbness, tingling etc. After crashing hard in December and having more moderate than Mild CFS, I have been working really hard to recover (trying not to push), I do feel I am on the recovery path but I am concerned that my nervous system has taken a battering and wonder if some sensations I am having now will ever go?

For Example, in the morning when I get up, I am quite off balance and dizzy for a few hours as my body adjusts from being asleep to waking and moving. I can feel really restricted in movement and not be able to react to things to the side of me and turn 90degrees in a hurry or it really throws me off. Sometimes I actually feel completely dissociated from arm or leg movement in that it either lags behind or ahead and comes as a shock (I believe this could be a cerebellum thing).. My most common symptom at the moment are strange muscle contractions after or during movement/exercise, I do short walks to try to keep moving yet as I walk, my perception of the odd footstep can feel very odd and not quite as I would have imagined it to feel (if that makes sense?!) THEN when I reach home again or my destination and stop moving, it;s as if all my muscles take some time to recognise that I have stopped and they begin to contract strangely so that sometimes it feels as if I am still moving or it can just be more irritating and hard to focus on what you are doing next (Maybe talking to someone in a shop).

My concern is that it feels as if my entire physiology has taken a beating and that things aren't quite wired up as they were before, I hope my body can adapt to the new arrangement or heal into the old but in the mean time I will try not to worry about it. Does anyone else find this? It feels a little bit more like the MS side of things but I have been checked over (except for MRI) for MS......

 

[pattismith]

I recently post on here about physical changes that I have found after having CFS/Fibro for 1.5 years inc. knees buckling in, straightened spine, rounded shoulders etc. :

.....

What you described is what I observed on my vertebral column as well for years.
I also had morning stiffnesses, morning nausea, and many of your symptoms.

During many years, I though my disease was spondylarthropathy, because the pain started in the pelvis zone, because of morning stiffness, and because of the straightened column/rounded shoulders you described, both being present in the Ankylosing Spondylarthritis

disease....
Seems I was completely wrong!
Azythromycin saved me, it released suddenly a big part of my pains and allowed me to stand in a better position,
I hope you will soon find the way to healing!

 

[ChrisD]

@pattismith Thanks for replying, that's interesting. Do you know which bacteria were being targeted by that antibiotic?

 

[pattismith]

@pattismith Thanks for replying, that's interesting. Do you know which bacteria were being targeted by that antibiotic?

unfortunatly not, I happened to discover my disease was sensitive to this antibiotic "by chance":
At that time I was very low, living in zombieland for 1year and half. then I got a very bad flu in Juanary, that turned into a bad bronchitis for 3 weeks.

As I am prone to recurrent bronchitis since 2010, I took the Antibiotic my doctor gave me each time, ie Azithromycine 500 mg/day.
My vertebral pains/stiffnesses disappear very quickly, but not my bronchitis, so after 10 days with this antibiotic, I stopped....Ten days after, my pains were back, so I took it again.

My conclusion was at that time that my disease was baterial, a bacteria sentitive to Macrolides...
I did some serologies in order to understand more about what kind of bacteria could be involved.
Western Blot for Lyme was negative, the only positive serologies was IgG for Chlamydia Pneumoniae, Mycoplasma Pneumoniae and Yersinia, all three sensitives to Macrolides.

These infections are rather common, so I don't know if they can explain my disease.
Some people think that Mycoplasma could be involved in CFS, others that it's Chlamydia, and others think the bad bacteria are hiding in our microbiota, so I couldn't say! But it worked for me.
My concern at that time was to improve my brain disability, so I decide to follow the antibiotic protocol Dr Wheldon had used to save her wife from Multiple Sclerosis (Azythromycin/Doxycycline/Tinidazole).

It was a real nightmare because of the bad effect I got, with worsening of my brain symptôms, fatigue, muscle pains etc...
I thought I would keep the treatments for 6 or 12 months minimum, but I gave up after 4 months, too hard!
I stopped some weeks ago, and I feel better now, and I'm looking for softer treatments to recover.
This was the light in the dark that I needed to go ahead.
So I don't regret a second this antibiotic therapy, it save me from hell. I couldn't even sleep because of the vertebral pains at night...

Many CFS patients here improved from some several type of treatment, this brings us much hope for our future!

 

[PatJ]

in the morning when I get up, I am quite off balance and dizzy for a few hours as my body adjusts from being asleep to waking and moving.

If I get up from a flat surface at any time I can feel more off balance and dizzy for 1/2 hour or more afterward (I have serious OI problems.) Since I have been using an inclined bed I can get up without dizzyness (and sleep better, and avoid nocturnal urination). It's amazing what a 6" rise at the head of the bed can do.

If I nap during the day I can sometimes wake up feeling dismal, dizzy, nauseaous and extra brain fogged. These effects can last for hours.

strange muscle contractions after or during movement/exercise

These might be fasciculations. When I used to be able to walk for exercise I would often have rapid small muscle contractions in my thighs whenever I stopped moving. It felt like little electrical storms moving through the muscles.

This effect can be related to lack of magnesium. Many people with CFS/ME are known to be low in magnesium.

I hope my body can adapt to the new arrangement or heal into the old but in the mean time I will try not to worry about it. Does anyone else find this? It feels a little bit more like the MS side of things but I have been checked over (except for MRI) for MS.

My nervous system has been, bluntly, completely mucked up at times: fasciculations, feeling like I'm having an internal seizure, feeling as if I'm walking on a trampoline, strange mood fluctuations and sometimes sense of dissociation, atrial fibrilation, eardrums that feel as if they're flexing outward.... I have found several things that have stabilized it all: methylfolate, methylB12, LDN, eating frequent small meals to avoid hypoglycemia (and an associated feeling of inner trembling), recognizing the symptoms of OI and lying down most of the day, magnesium, better sleep, and avoiding PEM.

I was told I probably had MS and believed it for many years. I then went to an MS specialist clinic, had _many_ different blood tests and a full body MRI, a review of past spinal tap results, and was told I don't have MS.

 

[ChrisD]

@PatJ @pattismith Sometimes I feel that the two sides of my body are not really working in Sync and limbs feel disconnected, it is very disconcerting but Doctors just tell me it is a perceived idea of feeling out of balance. I am in a constant cycle of pushing a bit too hard, having the onset of these symptoms, which then take around 4-5 days to pass again

 

[PatJ]

Sometimes I feel that the two sides of my body are not really working in Sync and limbs feel disconnected, it is very disconcerting but Doctors just tell me it is a perceived idea of feeling out of balance.

Most doctors don't know what CFS/ME feels like so they can only guess at what we're feeling. Wild speculation: Maybe your brain is having trouble synching the coordination between the two hemispheres of your brain, since each hemisphere controls one side of the body; or maybe you have some inflammation that is slowing down nerve signals from one hemisphere.

Or maybe the two sides of your body are working fine but your perception is having problems. When I'm very tired I tend to try reaching through one object if I want to grab another object behind the first. It's like I don't perceive the first object properly.

 

[ChrisD]

@PatJ I think both suggestions could be true; I only have these symptoms come on so strongly after too much exertion so it could be all kinds of oxidative stress on the body/gut?! Causing a stir and creating more inflammation in the brain, that interrupts signalling - Now there's some wild speculation!

I also have that exact same thing, I feel restricted by my range of movement and anything outside of my periphery bbecomes more difficult to interact with and takes much more focus. For example a glass on a table to my right, when these symptoms are low, I can comfortably reach out without looking and grab the glass, when these symptoms are high, then I have to turn and really focus on grabbing it