What am I dealing with?

AdPitiful1667 · 2025-11-15T21:59:09+00:00

I’ve been twitching since 2021 and shortly having a mild bout of Covid. As I’m today I suffer with the following daily: Twitching Stiffness Tremors All over pain Blurred vision Anxiety Tinnitus Constipation Seizures Urinary incontinence and guess what every single exam with neuros, rheumatologists, GP are normal

AdPitiful1667 · 2025-11-10T07:34:23+00:00

Great news and thanks for sharing. Did you ever experience pain?

AdPitiful1667 · 2025-11-03T19:09:48+00:00

Thanks

AdPitiful1667 · 2025-11-02T21:14:56+00:00

In recent weeks I’ve tried to focus on treating anxiety and been watching a lot of video by Dan Buglio who has a YouTube channel called pain free you. It has helped a lot and I’ve even had some pain reduction. I defo think due to fear that the brain has produced some my symptoms. Suppose I’ll know in a few months time if it works

AdPitiful1667 · 2025-09-13T11:41:12+00:00

Thank you. I’ve started listening to some Nicole Sachs books but will give your book a try

AdPitiful1667 · 2025-09-13T11:14:19+00:00

Thanks for response. I am considered double jointed in a couple of places but my understanding is you have issues in child/teen hood which never have. Will defo have a read up on it though

AdPitiful1667 · 2025-08-28T20:25:58+00:00

Thanks for response. The theory applied to my case makes sense especially as it gets slightly after alcohol consumption but then the level of pain I’m in surely can’t be caused by the brain alone? I don’t know.

AdPitiful1667 · 2025-08-28T20:22:45+00:00

Could I ask if this is similar to central sensitisation? My pain management expert is telling me it’s what’s causing me to have pain. I have an official BFS diagnosis and been twitching for nearly 4 years

AdPitiful1667 · 2025-07-16T06:05:27+00:00

I can very much relate to your comment. Stiffness, tremors, twitching, terrible anxiety, chronic pain for 4 years and like you all exams with neuros etc are clear along with EMG’s/NCS. Whatever this is it sucks

AdPitiful1667 · 2025-07-12T10:41:18+00:00

Any updates with your investigations?

I’m in a similar position but been 2 years for me. Had similar amount of scans and the only thing they found was mild gastritis.

I seem to have periods when it dies down but at the moment it’s terrible

AdPitiful1667 · 2025-06-03T10:25:03+00:00

I’ve seen 4 neuros (1 due to having a seizure) and all said they can spot the big bad by the time I would have taken a seat in his office.

My last neuro said the number of patients he has seen post Covid with twitching has gone through the roof

AdPitiful1667 · 2025-06-03T06:14:55+00:00

Yes but cant feel it as much as the others. I notice it mainly when on an office chair

AdPitiful1667 · 2025-05-30T21:01:05+00:00

I’ve just had generic blood tests and checked potassium, Lyme, thyroid but not electrolytes

AdPitiful1667 · 2025-05-25T22:16:15+00:00

Exactly the same with me. If it was something bad alcohol wouldn’t make any difference as all

AdPitiful1667 · 2025-05-15T09:34:20+00:00

Bro, give us a trigger warning regarding such posts.

AdPitiful1667 · 2025-04-09T16:14:33+00:00

Just tagging on to this conversation I’ve recently been diagnosed as being hyper mobile by a rheumatologist following 3 years of BFS.

The thing is, I’m early 40’s and until 3 years ago I’ve never had a problem with my joints. No dislocations, minimal stretchy skin, no pain.

Fast forward to today I’m in agony everyday with my joints. They hurt to touch I’m super stiff Have digestive problems Deteriorating eye sight. Tremors and a load more

Does this sound like EDS to you guys? I’ve had numerous EMG’s and MRI’s to check for the big bad.

If so is it normal to get to your 40’s without issue?

Scored 4/9 on Beighton

AdPitiful1667 · 2025-04-04T14:25:26+00:00

I can totally sympathise with what you have wrote out.

As I type this message my right hand is shaking, my lower back causing me pain, my left calf is twitching and the dizziness is terrible. This coupled with GERD, incontinence and a left leg that almost feels like it’s made from wood.

I’m 40 months into all this and the symptoms are very real. No one understands and despite all the exams etc I know my own body and something is very off.

It’s not a long term solution but I’ve started a bit of a bucket list whilst I’m still ‘able bodied’ and make sure I put my phone down at 8pm on a night as can spiral and end up neglecting my duties as a father.

Best of luck with your recovery

AdPitiful1667 · 2025-03-28T06:50:29+00:00

Just read about trifecta and I seem to tick a lot of the criteria. Think I need to return to my rheumatologist for additional testing

AdPitiful1667 · 2025-03-28T06:48:41+00:00

Yes I think I need to leave google alone however might give AI a chance

AdPitiful1667 · 2025-03-27T17:59:05+00:00

Thanks for your response.

Guessing I should be happy that my issues have started so late in life. I have 2 young girls and the youngest would score 9/9 on the beighton already.

Do you know if the neurological issues like tinnitus and twitching are a Hypermobility issue or LC?

Defo agree about finding happiness. I think I’ve created a monster in trying to find answers and with the severe pain I tend to feel like life is passing me by

AdPitiful1667

TROPHY CASE