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Muscle twitches, muscle joint pain, headaches, internal vibrations

At the end of October I got a flu shot for the first time ever in my life. About 5 days later I developed a little muscle flutter and tingle in my right foot. Being that my mother's side is pretty diabetes heavy, and the fact I had been eating a lot of junk over the past month or so, I was worried, so I had them do diabetes testing. Over the course of a week, the twitch moved up my right leg and my leg began to have muscle twitches. The leg also began to feel a little weak--I would walk and my knee would sometimes give a little buckle. I then developed random muscle twitches everywhere. Then my other leg started feeling weak. I went to the ER, told them what was going on, they gave me motor tests, and tested my feet to see if I still had feeling. I was diagnosed as having leg cramps, which was not what was going on.

2 days later I went back to the ER. I was having crazy headaches, with weakness, chills, muscle twitches, random burning sensation alternating in both arms. They did more motor tests...and then the dude asked me about my flu shot, which I had totally forgot about. Then I remembered that all this started after the shot. He told me about some syndrome that people get from the shot, but my symptoms didn't match up because I still had motor skills, and usually it's a very quick progression. I ask for them to draw blood. They say "what for? we don't see anything that need us to check that in depth." 2 days later I go see the doctor again and tell her what's wrong. Get the same motor tests. Now in between these visits I had Googled bad reactions to flu shots and I read some things that matched up with what I was experiencing. So the motor tests thing was not really helping me. I'm like none of this started until after I got that shot...she told me that they didn't think it was due to the shot. I was pretty upset. Upset and scared, being that I was working overseas and the hospital was limited in the types of testing they could do. So I ended up coming back to the States to get diagnosed.

In addition to all that I said freaking me out, I had noticed physical changes. All my muscles were mushy (for lack of a better word) at rest. I also noticed dents in both my hips, like someone had taken a piece out of both sides. I could also see my veins all over my body more clearer than I had seen them before, and my skin felt really weird to touch, like it was too smooth. Also, about 3 weeks after the shot I wasn't able to eat anything and I wasn't going to the bathroom regularly. Every time I tried to eat something I would gag and get nauseous which ended up in me not eating too much of anything at all. This happened after I noticed the physical changes.

I come back home, and my PCP diagnoses me as being constipated and that everything else is from stress or me worrying. I dispute this and she makes me an appointment with a neurologist. I tell the neuro I'm concerned about CIDP, I end up getting MRI of the head, EMG, nerve conduction study, skin nerve biopsy, and stress testing, along with a ton of bloodwork done, including lyme (tested twice). Everything has come back negative with the exception of the skin biopsy, which came back "on the low side or normal". I'm currently awaiting a MRI of the C-Spine.

My current symptoms: muscle twitches all over (and I mean all over on occasion), joint pain and muscle pain that seems to come and go every 3-4 weeks, some tingling, sensation of bugs crawling in my skin (mostly my head), random itching all over that comes and goes, slow digestive tract (my stools are pretty loose most of the time, not exactly diarrhea but not exactly firm either...sorry if tmi), crazy headaches that come and go (a low level headache is always present), dizziness most of the time, congestion in my head. Lately I've had a stiff neck that creaks a lot when I stretch it, feelings of me falling every now for a sec that I notice usually when I'm reading or using the computer, internal tremors that feels like there is humming coming from somewhere inside of me, alternating between my lower left side and my head that make it hard to sleep. I also lose balance a lot. I haven't fell at all, but my knees buckle a lot. I usually wear some type of knee support when I go out to the store or something because walking usually hurts my knees, and I was never that way before (I worked out and lifted weights regularly).

I just don't know what else to tell the doctors to look for. I feel so lost right now. I just never expected this to happen. Thanks in advance for any advice.
8 Responses
1756321 tn?1547095325
I haven't caught a cold, flu, bronchitis, strep throat since taking vitamin D. Vitamin D is crucial to active the immune system. Sorry to hear about your adverse reaction but vaccine side effects do list your symptoms as possible side effect. Let's hope it's not permanent.
Avatar universal
Thx, Red. I just went for a C-Spine MRI today. I'd love for them to say they found something at this point. Not knowing what's going on is the worst. Just feeling more and more lost.
Avatar universal
I have multiple sclerosis and alot of my symptoms are/were the same as alot of yours. You should see a neurologist.  There are many things that can cause your symptoms. The Dr can do bloodwork and also MRI.your brain and spine.  I saw many specialists before seeing a neurologist. I could have resolved many issues had I gone there first.  I take Gabapentin to help the internal tremors and depression. Xanax is the best for my internal tremors but makes me dopey so I only take it if the tremors are bad.
Avatar universal
I saw a neuro, Bev. My C-Spine MRI came back clean (bloodwork and head MRI came back clean in Dec-Jan) and she's now looking into getting John Hopkins on my case. Meanwhile I sit here with serious brain fog, twitching all over the place, and just so scared I'm wasting away. Haven't been able to work...all I do is stay in my room depressed. Just wish I knew what was wrong.
Avatar universal
Sounds a lot like my husband. His started in 12/2010. In November 2010 he was diagnosed with diabetes and I am almost certain he came home and said he got the flu shot but after obtaining his medical records it is nowhere to be found. Here we are 4.5 yrs later with all the same symptoms, (cognitive impairment, tremors, muscle twitching,he feels the buzzing inside and when he tells neurology at like Stanford they think he's crazy, he has joint pains, headaches, balance issues and knees buckling, heat and exercise intolerance, just cleaning house and he is exhausted, fatigue, weakness, he has been diagnosed since then with Hashimoto's Thyroiditis, he has chronic Irirtis since '09. HLA B-27 gene associated with Iritis. Lyme was negative, MRI many negative, EMG multiple done and negative. Low vit D level now on supplement, abnormal LP with o bands, some elevated Lupus antibodies but not consistent with Lupus most likely the Hashimoto's per specialist. He has much difficulty sleeping. We have been many places including the Mayo clinic in AZ. Now we see local neuro and rheumatologist at UCLA. This month we will see East West Medicine for acupuncture. And soon will see psych cuz this has taken its toll. He is only 44 now. 39 when it started.
Avatar universal
Elevated WBC's  since 2007. 11000 to 13000 usually. Last was almost 16000 July 2, 2015. His brother who is 27 has MS. Don't know if there is any correlation. There may or may not be!  We have had just about every test imaginable. I say we because this has been quite a journey for us both. I am in medical field and did much research and would recommend tests and usually doc would do it.  At this point we are at the mercy of medicine, fate or whatever you want to call it.
Avatar universal
I am so sorry you and your hubby are going through this Gbn. I really hope that he gets better and continues to try and figure out what's wrong. I'm trying to continue pushing but it's just hard right now. Sitting here living with my mother not feeling ok enough to work...this is the last thing that I ever thought would happen. Praying for both of you.
Avatar universal
You need to seriously look into Lyme disease!

Just because you tested negative for Lyme disease doesn't mean you don't have it! Lyme disease tests are only accurate 50 percent of the time. Trust me I know from personal experience because I had aweful symptoms very similar to yours and I suffered for months and saw like 20 doctors and had every test done known to man. They all said I was negative for Lyme disease.  Turns out in the end I had Lyme disease the whole time. And it was causing all my symptoms.

Lyme is very overlooked by doctors.  There is a great Lyme disease forum right here on MedHelp.  They are very helpful on there. I definitely think you should post there about your symptoms.  They can also help you find a doctor that can treat your Lyme disease.

If you have any questions feel free to ask!  Hang in there.
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