Muscle twitching
Posted , 8 users are following.
I'm a 36 yo male seeking help with my symptoms. I've been to many doctors with no diagnosis.
it all started 7 months ago when I ended up in the hospital with a perforated bowel and had to have an emergency bowel resection. doctors took out 10 inches of my colon. it was a rough recovery. after a few weeks I started to feel wonderful and thought I could finally put the surgery behind me.
that all changed 2 months after my surgery when out of no where I began having tingling in my feet and hands. it slowly progressed into my arms and legs and at one point my entire body was tingling. after about a month of the tingling it finally subsided and went away completely. after the tingling went away I began to have muscle twitching. it started in my feet and bout after a month it had spread to my entire body. I get muscle twitching all over my body. it freaked me out. I googled my symptoms and nothing but als came up and I began to panic.
I ended up going to a neurologist where I've had every test and scan that possibly can be done. I've had an mri of spine and brain, nerve conduction study, 2 emgs, and every blood test possible. All of these test came back normal. doctors told me it is all in my head and I need to seek mental help. I'm furious that I've gotten know where and have gotten no diagnosis. curious if anyone thinks my symptoms maybe fibromyalgia. the muscle twitch is my most scary symptom. it bothers me.
0 likes, 11 replies
angel2828 chad84715
Edited
were you on any medication folowing your surgery? which ones?
chad84715 angel2828
Posted
I was given two antibiotics. levaquin and ciprofloxacin.
diane3579 chad84715
Posted
Wow...I'm so sorry. Wondering if anyone took a look at your diet and your electrolyte and nutritional status? You said you had blood work, but these usually require special testing - not sure if they did them? Deficiencies in some nutritional components can cause twitching.
Do you drink caffeine?
Are you on any meds?
Twitching can occur in fibro, but I would make sure I'd explored all these other things first. Then you might try to find someone who understands and works with fibro to evaluate you.
baraba chad84715
Posted
Hello! As the first, it is not all in your head! As the second, if there is no pain in your limbs and joints and no oversensitivity of your skin, than it is not (jet) fibromyalgia. In general, your problem is a disorder of Autonomous Nervous System (dysautonomia, you can Google it). Hence no poor blood results and hence the twitching (the thing is of electric nature). In the course to be able to tell you more, make a simple test and relate to me the result. Stand on the level ground with your arms pointing upwards. Than band in your waist and try to touch the toes of your feet with the fingertips of your hands. Do not bend in your knees! If you realize that you can not do it, stop when you start feeling strong pain in the back portion of your thighs and measure or estimate the distance of the fingertips to the ground. This is the data I am interested in. "Normal" is just to be able to touch the toes. It is a "zero condition", but not many of us have it, lol. If you feel that you could reach beneath the ground, without problems with the thighs, than tell it to me. To make you feel better, I can tell you that, according to my estimation, about 50% of the population have the problems with dysautonomia, without ever being diagnosed. These problems are so diverse and perplexing, that the MDs are not likely to disclose the secret of dysautonomia in the next 100 years...
jordan86670 baraba
Posted
Hi Baraba I have seen your reply on this post and I am really intrigued. I have been dealing with unexplained body jerks, tremors and muscle spasms all over my body, I have also been dealing with sever bouts of brain fog and disorientation. I would like to ask you more on this topic of dysautonomia. At this point in time anything is possible for me and anything I think could give me some relief I am really keen on knowing. I would be super grateful if you could get back to me on this subject and how I can understand if its something I could be suffering with 👍
miriam65408 chad84715
Edited
Hi Chad, I want to ask the same question as Angel because what you describe sounds like it could have been caused by one or more of the meds they gave you. I think it's highly possible they gave you antibiotics as they would have been concerned about infection with the type and location of surgery you had, so if you can name what you took during and after the surgery that would be a great start.
Whatever it is, it's certainly not in your head (which is the docs' way of saying they haven't a clue!). Something is clearly wrong, whether it be dysautonomia, essential nutritional deficiencies, toxins from medications - or all three combined.
Even if it isn't fibro you've come to a good group and I'm sure between us we can help you get to the bottom of this.
chad84715 miriam65408
Posted
thank you so much for your reply. I forget to mention that I do have pain in my limbs. i get sharp shooting pains in my arms and legs. I've been checked for vitamin deficiencies and all came back normal.
chad84715 miriam65408
Posted
I was given two antibiotics. levaquin and ciprofloxacin.
miriam65408 chad84715
Posted
Hi Chad, these are both fluoroquinolone antibiotics so my (experienced) guess is that you're actually suffering from fluoroquinolone toxicity. The most well known symptom is pain in the tendons, especially the Achilles, and the tendons can become weak and liable to rupture. There are many other symptoms that carry a black box warning (I'm guessing you're in the USA?) including neuropathy and nerve pain, muscle spasms, memory/anxiety problems etc. Your doctors should all have been very aware of this possibility - in fact they should have discussed it all with you before your op but they'll no doubt say there wasn't time as you were an emergency. They'll also say the chances of this toxicity are "Very Rare" which is absolute nonsense.
Re your tests all coming back normal, this is generally the case which is mainly because the body maintains levels in the blood serum at the expense of the cells. Fluoroquinolones (known as FQs and you are now a 'floxie') steal your essential minerals, especially magnesium and iron, and cause oxidative stress in your cells. You would be wise to start supplementing right away with a good multi mineral mix and also anti-oxidants (look for CQ10 as well as Vits A,C and E). Extra magnesium helps and many sufferers find soaking in a bath with Epsom salts (magnesium) eases those pains and tingles (but start everything, including baths-soaks, on a low dose and build up gradually) . Other general advice is to cut out booze and processed or fast food as the preservatives, chemicals and alcohol increase the toxic burden in your body. Also take probiotics (capsules or live yoghurt,kefir etc.) to help your gut as the antibiotics will have cleared out all the good bugs along with the bad. Your gut depends on a good healthy mix of 'flora' to work properly and your body depends on your gut.
To find out more about FQ Toxicity look at the discussions here starting with this one set up by the Moderator https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305
who has included links to various helpful groups and forums. There are many groups out there (some have thousands of members!) and if you join one you can post questions and ask for more help than we can give here.
A word of warning - you may read about people who have been very badly hit by this toxicity and you will find their posts very depressing. Please try to skip past these as to me (I've been researching this for 5 years now) it sounds like you are probably getting on ok already. If it's been 7 months and muscle twitching is your most scary symptom then you will very likely make a good recovery - but it does all take a long time. Also, be aware that you may get anxiety or panic attacks, and your doctors will try and convince you that you need anti-depressants ("it's all in your head", after all!). Please don't go down this route as FQ Toxicity and anti-depressants are a very bad mix. Likewise, please make sure that you are never (ever) given another Fluoroquinolone drug again - there are 5 main names but always remember the class (FQ) and make sure doctors, friends and family know you are 'allergic' to it. Allergic isn't the right word but it's one that everyone understands.
Many sufferers are mis-diagnosed as having Fibro and/or ME as the symptoms can be very similar and there is no actual (known) cause for them. I
Take care of yourself, check out the links, learn what you can and I'll maybe see you on one of the groups out there.
linda82701_USA chad84715
Posted
This disease is very hard to diagnose. I have had all the symptoms you describe and more. I finally went to a rheumatologist who did the tender points test on my body and all of them hurt. she diagnosed me correctly, but it took years of going to my GP and telling about all my symptoms before I was finally diagnosed. I also have diabetes, arthritis, PMR (an autoimmune disease) and who knows what else. Try going to a reputable neurologist and best wishes to you. ☀
DBS-KB chad84715
Posted
Muscle twitching affects 70% of adults and is non-specific. Give up caffeine, stay hydrated with water, exercise, eat lots of veggies and don't worry about twitching.