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

Bluebell21

@staubraum Hello Paul, welcome to the Community from me too. I hope you enjoy your time on the forum. Any questions just ask.

I am so sorry you have been having such a difficult time.

Have a look around and join in when you are ready.

Take care.

Holly_Scope

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.

Santosha12

Hi Paul, I can relate so much to what you've said, I'm so sorry what you've gone through, and still are. I lost my job 18 mths ago as 22 sickness absences. I caught Covid 3 times (Nov 20 very unwell with it for 5 weeks). Biggest impact has been mobility, lungs and bowels. My GP would not refer me to a LC clinic for 3 years then got diagnosis Aug 23. My LC clinic funding stops this March but the physio has been shocking towards me and caused harm (physical with Graded Exercise that is NOT recommended in LC and mentally/mocked my MH issues). I've got pain in hips and feet mainly housebound, use stick, got emphysema and currently recovering from double pneumonia. Nausea almost daily they queried BPPV but couldn't do the basic tests as blood pressure too high. Dizzy light headed and CFS. Diagnosed with corneal dystrophy and basilar migraine retinal migraine, tinnitus and hyperacusis. These are a daily occurring. Bowels affected severe diverticlar disease, ibs mixed and another bowel issue that needs surgery but unlikely to have. Incontinence so mostly can't go out. No family or other support. I have hypertension not well controlled was put on beta blockers 2 years ago, these just got stopped in Dec as prescribed in error 🙄. Will reply again this am with some ideas/thoughts for you. So sorry for long post. Take care.

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.

Santosha12

Thank you very much Jimm, I am sorry I didn't mean to hijack Paul's post but have I fear 🫢😐. Sorry Paul I don't mean to be rude. I've not spoken to PALS there's been an ongoing lot of nonsense from the team (physio and OT) towards me including from a separate physio who im supposed to see referred by my bowel consultant. I won't go into the reason here but i know exactly why and its to do with my employment which was ended (same hospital) and malice. I know that sounds strong but of course, i know what was said to me and theirconnectikn with my previous nursing job. I've let my GP know via letter as I will not, I've decided, receive any 'care' from them now. It is all outrageous really from fellow healthcare 'professionals' and I still might be going to PALS as well as the CEO directly and now, I don't give a rats behind if that's not the proper process, they've caused significant harm to me ongoing from Sept 24 and from Dec 23 to Feb 24. When you're unwell it's hard to summon the energy needed to deal with the shenanigans but they've underestimated me, I was bullied out, screamed at by my boss and lied about and all my personal health problem shared with the porters!!!! 😬🙄 Absolutely nothing against the porters but wouldn't really want them knowing the ins and outs of my intestines 🤭🤪😪 The very clear mocking of my mental health though is the most unforgivable and it's that that's caused harm to me. Sorry for the rant. I will deal with it over the next week or so, calmly 🫠. Thank you for mentioning PALS. I spoke to a lovely lady at SCOPE yesterday and got some really good pointers off her too, especially re hospital transport as struggle to get to appts not that they'll be any more physio ones, I'll say no more. The care and THANK YOU. PS My posts won't always be so long, I can do concise when I put my mind to it 😊

Santosha12

PAUL, Sorry, I went off on a tangent of my own their... back to your post! Sorry this is long!! *BIT OF DETAIL LATER MIGHT WANT TO SKIP NEAR END OF POST *

I was recently found to have low magnesium and low potassium, possibly caused from dehydration cos of bowel issues/poor diet as cannot tolerate varied foods and on magnesium supplements now and very regular blood tests. Low magnesium is possibly causing my nausea, i dont know. Incorrect medications wouldn't have helped though/affecting heart. Have you had regular, full blood tests.

I had 5 colonoscopies, 1 flexi signoidoscopy and 1 Virtual CT colonsocopy, also had 4 separate calprotecin tests (stool sample which was the least invasive!!) which shows any inflammation in bowel. Calprotecin can be high for other reasons (alcohol, certain foods but I don't drink or have thise foods).

I also had 2 polyps removed- had refused to have that last colonoscopy done thank goodness I did as consultant said they would have been cancerous in two years. I insisted on a PAEDIATRIC SCOPE being used cos of pain, they refused so I got off trolley and said I'm not having it done then/going home. They got the paediatric scope. And I got the pain relief (they said I didn't need that but I know what I need duh!!) and sedative. I know I sound like a difficult patient but I'm sick of being treated as though I'm just a 'passive onlooker' into my own treatment and body and for the first time, I'm sticking up for myself. We are our own very best advocate but energy and thought is needed to be able to.

My Calorotectin was always very high c 300 to 750 (normal c 99). Consultant thought I had Crohns or Ulcerative colitis but they weren't found. I still suspect it might be microscopic colitis but not diagnosed I had SEHCAT scan to check for bile acid malabsorption but that was normal levels.

Have you been able to access a Long Covid Clinic. Can't say I rate my experience as positive and mine are not funded from March. Don't think there are many now.

Good that you were referred to neurology. I had an MRI last March following poor audiology results, (not been referred to neurologist), I've severe hearing loss in right ear and hyperacusis where everything sounds very loud which is distressing but mostly I've habituated to the tinnitus (both ears continuously) since 23rd Dec 23! 🙄😬. Cannot be recommended for hearing aid because of the hyperacusis.

I'm also waiting for referral to fatigue/pain management BUT because I've not even been given pain medication that just seems a bit of a nonsense to me.

I have felt depressed and confused with it all. Always thought since Nov 2020 that as i get further away from having had covid, my health would improve but I have had the opposite. My GP has been more supportive recently but suspect the error in prescribing me beta blockers for 2 yrs may be a factor! Please forgive my cynicism! I joined the ME Association several months ago as they also deal with LC too and have a helpline, they've been brilliant. So have the IBS Network too, also have a helpline (2 evenings run by specialist nurses).

BTW, my bowel consultant told me there is evidence that covid can get in the bowel/cause bowel problems. Mine were so severe the worse day I went 117 times in 20 hours but normal bad days 40-50 times, a good day is c 15-20 times. SO SORRY IF TOO MUCH INFO 😞. I took photos but even consultant didn't want to see them 🤣🤣

Prior to Covid I had only osteoarthritis and worked nursing full time which I loved. Occasionally, I wake up, think about my situation and get a bit upset and feel very suddenly shocked at what has happened to my body, it's almost unbelievable. I have 4 small dogs which is a struggle but they're my world (can only go in garden). When I was very ill in Nov 2020 my temperature was 41 and only went down to 39 fir c 10cdays continuously despite paracetamol around the clock 4 hourly I remember thinking I'm cooking and god knows what this will do to my body. Paramedics came twice but I wouldn't go to hospital as no-one, not even the RSPCA would come to my dogs as Covid would be in my house and I wasn't going to just leave them.

I've had a lot of unnecessary, harmful to me, interaction recently with so called healthcare people and have had to just withdraw to collect my thoughts recover from the pneumonia and regain some strength to go forward again. I think personally, it's OK to take a few steps back even if it's only to be able to take one or two steps forward again. That's the seemingly never ending recurrent theme for me. For me also, it seems to be continuously baby steps 🫠. I hope you have good support with family or friends Paul and even the support on here/other services and I really hope my detail doesn't upset you or anyone on here. Warmest wishes and sincere hugs to you. Please feel free to ask uf you've any questions (I can do concise next time I reply !).

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.

Santosha12

Paul, just seen I've not mentioned about your falls. I had 2 falls in shower. I was advised to use a rollator frame I can't as would run my dogs over in tiny bungalow and can't use left hand well as got ulnar compaction syndrome , ruptured thumb tendon and osteoarthritis in keft wrist and left hand need surgery which I'm unlikely to be able to have. I do use a walking stuck now though which I hate bit woukd fall without it, partly because of brain fog/fatigue/dizziness, but also cos of pain in right hip/feet etc.

I'm also waiting for counselling via IAPT (Via GP) but long-awaited since referred in c Oct.

The ME Association also specialise in CFS too but I think ultimately it's all about pacing, I've not read all the info they've sent me yet.

Finally, .... I thought of asking the practice manager at GP surgery to liaise with say 2 of the good GPs so I could see only them. That could be the way forward. One GP last year put her head in her hands and said 'your bowel problems are overwhelming me' .... 🤣🙄😬 I couldn't say anything just thought you want to try sitting where I am. It had took me 5 mins to tell her not 'War and Peace' like today 🫠🤭

Santosha12

Just seen your reply Paul, glad you got to see doctor but sorry you've got worse pain. My pain has always (4 yrs) been on the left but c 8 months ago it started on the right side too which was a bit scary, but it never then got worse. I'm on around 9 different bowel meds but don't take any as my conditions need opposing treatment and anything I take for bowels (say for IBS) makes the diverticlar disease far worse. I've had diverticulitis now 14 times in 3 years with 1 or 2 lots of antibiotics each time.

Was mistakenly diagnosed with coeliac disease jan to April 23. Went on strict gluten free diet, very high cals and sugar, very expensive and put 4 kilos on!!! Not on that now, mostly on a low fodmap diet (not really improved anything), can't afford to try probiotics. When ill with diverticulitis I only eat bit of banana, dried toast, apple sauce and bit of white rice. The BRAT diet I think it's called. Insufferable it is 🤤🤮🙄

As Soon as I can I'm going to look at the research that's been done for LC, I've not looked for 2 yrs. I don't know if there's evidence it crosses the brain/blood barrier but even without looking at the research, it surely must because of the neurological effects. I often still have no temperature regulation/fever up to 39.2 but lasts c a day then goes its just the weirdest thing really (although I was in hospital Christmas with double pneumonia only boxing day as discharged myself at 2am got taxi home as surrounded by 5 poor old ladies with flu and no masks, thought if I catch anything else I'm done for). And not bear loo so just too embarrassing for me no dignity whatsoever. Not most sensible or my finest hour but my dogs were pleased. But my temperature thing has gone on since I had Covid. I caught it again Jan 22 on ward at work, refused to go as I'd not been FITT tested for correct mask but was instructed I had to go. Caught it same day as 7 patients confirmed. I realise I still have a lot of anger really about it because of how I was treated at work and i should have had the ⚽️ ⚽️ to stand up for myself. Hope you can rest, I'm guessing you are not working I don't know how I did it up to jan 23.

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 😋