Hello 👋 I’m Paul. I’m 48 and have been struggling with my health after I had COVID

staubraum

Hello, I’m Paul. I’m 48 and have been struggling with my health after I had COVID in July 2020.

I was diagnosed as having Long COVID a few months after I contracted it. Then more and more problems came.

Since 2020 I’ve had persistent abdominal pain on the left side, persistent nausea, chronic fatigue and brain fog.

After a number of tests I was also diagnosed with diverticular disease.

Since Nov 2022 I’ve suffered from chronic pain, it feels like it’s in my bones in my legs and arms, the pain is pretty extreme. I also shake, mostly my right arm and hand but can sometimes be my whole body. I also have really bad restless legs and I can’t concentrate properly.

I also suffer from IBS like problems with occasional bowel incontinence.

I have dizziness and vertigo and I have fallen a number of times, in the house, in the street and down the stairs.

I have more symptoms, I’ve logged a huge list of things but these are the main ones.

I’ve had so many tests done through hospital and so many appointments at the doctors but I’m still to receive an actual diagnosis for what’s causing all of this.

The neurologist gave me the following Clinical Impression in May 2024:

1. Functional neurological symptoms which are likely fed into by your low mood, poor sleep and fatigue as well as chronic pain, resulting in a state of hypervigilance

2. Essential tremor

They recommended the GP to refer to me chronic pain and chronic fatigue clinics and I’m still yet to see anyone.

I take Noritriptyline for the pain, which doesn’t work most of the time.

I take Betahistine Dihydrochloride for the vertigo which does help but dizziness persists.

I take Prochlorperazine for nausea which helps but as the day goes on my nausea worsens.

Looking at the Clinical Impression, and the symptoms I have would fit with Functional Neurological Disorder but as I’ve said, I still have not actually been diagnosed with this.

I do feel as though the care I’ve had from my GP has been pretty poor, I don’t have a particular doctor, I just see whoever is at the practice on the day, appointments are 15 minutes and they never know why I’m there so there’s little that can actually be explained in detail while they skim my records at the same time. It’s driving me mad and it’s all very depressing and confusing.

Sorry, this was supposed to be a hello but I’ve gone into a bit of a rant…

Sandy_123

Hi @staubraum welcome to the forum sounds like you've been through a lot, I hope you get some answers soon

Holly_Alumni

Hi @staubraum and welcome to the forum!

Bless you, you've had a lot to contend with. Is there any potential for your Doctors to refer you to somewhere more specialist that can provide you a bit better support for your needs?

Also, I hope you don't mind but I've updated your title just to make it a little easier for other members who might have some helpful input to find it. I hope that's ok.

Best wishes,

Holly.

Jimm_Alumni

https://forum.scope.org.uk/discussion/comment/973836#Comment_973836

Hi Santosha, I'm really sorry to hear about the awful experiences you've had. Have you spoken to PALS connected to the clinic over what happened with the physiotherapist at all?

Do not worry about the length of your post, you've been through a lot and it's good to talk about it.

staubraum

Wow, you’re certainly going through it. I had one colonoscopy and that was one too many!

I went to see the doctor again yesterday as my pain has got worse again - they’ve just given me more Nortriptyline to take. They also say that there’s not really anything they can do now as I’ve had every test.

They did tell me that the clinical impression is pretty much a diagnosis as they can’t give you a definitive answer when it comes to neurology?

My abdominal pain is worse than it has been and I’m getting pain on the right side now which is worrying.

Jimm_Alumni

I haven't read all your comments just yet I apologise but I just wanted to say I had a bit of a chuckle at the "I've just had one colonoscopy and that was one too many!". I have Crohn's disease so I had quite a few during diagnosis process and more when I had some flares, as well as now a check up colonoscopy every 5 years. I've become quite used to them, they barely bother me now 😂 I can certainly understand not liking them though

Sorry, thought I'd just get that light hearted bit out before I finish reading the rest of your comments 😋