View Full Version : Worries I’ve been misdiagnosed
I’m 34 F and I have been diagnosed with long covid. That’s what they’re telling me.
I posted before about my symptoms such as right lower abdominal pain that goes from the lower abdominal up to the rib cage and around my back. I’ve had this pain on and off for months now.
I have had blood in my stool since the age of 18 on and off as I have had chronic internal haemorrhoids and chronic anal fissures.
I have had chronic fatigue and weakness for weeks now with nausea and heartburn and have started to loose my appetite. Stools have remained the same such as normal range of 3/4 of the stool chart.
I do suffer from health anxiety but I know this isn’t anxiety. I have convinced myself that I’m dying of bowel cancer and they’ve misdiagnosed me.
I had a full MOT of blood work done and everything is spot on. I had high b12 due to taking a high supplement and if anything my iron is the opposite of anaemic.
Anytime I have had blood in my stool it’s been with excruciating pain and always used a prescribed cream for fissures which would then help the pain etc. If I end up a harder/dryer stool this tends to reopen my fissure.
When I went to the doctors about this and they did blood work, I also had a finger in the bum examination and she confirmed the internal haemorrhoids and fissures. I also did a stool test which is normal.
All of this started to happen after I had covid in February and got worse from September which is why I think I have been diagnosed with long covid and due to my stool and blood being normal?
I’m on 14 week waiting list for an ultra sound. I’m so worried that I have bowel cancer and it’s now too late and I’ve been miss diagnosed. Could anyone give me any advice or tell me if I’m over reacting?
I’m so sorry if this isn’t the type of post allowed on the forum but just thought I would post as I am worried.
When I went to the doctors about this and they did blood work, I also had a finger in the bum examination and she confirmed the internal haemorrhoids and fissures. I also did a stool test which is normal.
So here's the deal. Reassurance can help if you believe it. Medically you're fine. We can't convince of that, only you can. So you have a choice. Believe it and work on your anxiety or pursue further tests that will confirm previous scientific medical tests. Your choice :shrug:
FMP
Hello!
Thanks for your reply. Sorry I’m not looking for reassurance on here. Just wanted to post as I do suffer from health anxiety and just wanted other peoples opinions etc.
I’m trying so hard to not let my head go to the worse case scenario etc but it’s just so difficult when I have never felt so Sick in my life.
They have diagnosed me with long covid which in itself has various symptoms etc.
Thanks for replying though appreciate it.
Sorry I’m not looking for reassurance on here. Just wanted to post as I do suffer from health anxiety and just wanted other peoples opinions etc.
Which IS reassurance seeking ;)
As I said.. Medically you're fine. Believe it and treat the real illness or chase a non-existent medical issue :shrug:
FMP
It’s ok to post to get it all out of your system.
I think you’ve gone through some really thorough tests and you just need to wait for the next one to come around. You would benefit from working on your anxiety while you wait. No pressure, but it certainly can’t make it worse can it?
How is that reassurance? I’m just asking for their opinions not to reassure me. Not sure why you’re so adamant. And quick to shut me down.
No I completely get it. I have always been able to manage my HA as I’ve had plenty of therapy etc for it.
This is different though. If it is long covid I know heightened anxiety is a symptom and derealization which I am now experiencing for the first time.
Was offered antidepressants but didn’t want to take them to add more symptom to the many I already have.
ankietyjoe
20-12-22, 15:27
No I completely get it. I have always been able to manage my HA as I’ve had plenty of therapy etc for it.
This is different though. If it is long covid I know heightened anxiety is a symptom and derealization which I am now experiencing for the first time.
Was offered antidepressants but didn’t want to take them to add more symptom to the many I already have.
What exactly do you want other peoples opinions on though? You've listed a series of symptoms you've had and tests that have so far been ok (apart from being diagnosed with long covid).
My opinion would be that you've had a series of tests saying all is good, and you have more coming up. What new perspective could I offer you? Genuine question.
For the record, long covid can be brutal, especially if it affects your digestion. Your digestion has a direct connection with wellbeing and mental health, so it stands to reason it can make you feel horrendous.
I'm with you on not taking antidepressants. I think that they are completely uneccessary for most of the case uses out there.
I would focus on diet, light exercise and cleaning up things like smoking, drinking, drugs etc. The difference these things can make (given time) is astounding. Also maybe consider taking a month or two of good quality probiotics. There's been a lot of anecdotal evidence that covid can act in a similar way to antibiotics in some people and damage the gut microbiome.
The same way other people post on here. To talk and discuss as other people seem to go through similar situations etc and suffer from some type of anxiety or health anxiety.
I’m not asking for anyone to offer me new perspectives either. I’ve just explained my situation and what’s going on in my head and if I’m over reacting lol. Like many other people do on this forum.
I don’t smoke, have never done drugs and haven’t drank alcohol in months. I already take a good probiotic. There’s no cure for Long Covid. I’ve been referred to a long covid clinic but having read other peoples experiences it’s pointless and not much help. There is a whole list of various symptoms people with long covid experience and go through on a daily basis. We are left in limbo and made to figure it out ourselves.
You don't have any red flag symptoms for bowel cancer. Quite the opposite.
I'm sure that the permanent fatigue will make you feel very low and vulnerable/suggestible to fearing the worst when there's no actual medical evidence to confirm these fears
Long covid is a mystery to most specialists. That's no consolation for you of course. I was left with a shingles-like pain syndrome after having pleurisy 5 years ago so I do appreciate your frustration at being left in limbo. I would think that it's worth giving the long covid clinic a chance? There's probably a very long wait anyway and new things may have been proved helpful by the time you get seen? In the meantime I would stick to a bland diet and cut out acidic foods which may trigger your heartburn? Try and eat little and often and pace yourself throughout the day if you can? Do you work?
There is a whole list of various symptoms people with long covid experience and go through on a daily basis. We are left in limbo and made to figure it out ourselves.
Not long covid but I do have fibromyalgia (and for almost ten years).
Similarly, lots of symptoms and pain on a daily basis and basically I was given a diagnosis and left to get on with it. You have my deepest sympathy, Sweetie.
I use the fibro forums to talk to people who understand my situation. (It does help to know that you're not alone)
Re the fissures, I get them and I find it helpful to use a sitz bath and to sit on a heat-pad. (Heat speeds up the healing as it can take a while for fissures to heal up due to where they are).
Realistically, it's highly unlikely that you have cancer. (The evidence just isn't there)
My abdo pain with IBS is predominantly on the right side, but there are other factors to consider. One, scar tissue from my C section and the repair they had to do on the inside. Two, the ascending colon is on that side and it can cause pain for some people where it does the sharp turn into the transverse colon. I get a lot of colicky/spasmy (not an actual word) pain there, as do many people with IBS. (Again, heat helps, as does gentle massage).
My advice is to do what I do everyday, and that's to fight those 'little fires' (symptoms). Pain increases anxiety and anxiety amplifies pain that's already there, so relaxation is very important with chronic illness.
I’m still waiting to be seen. Having heard other peoples stories about long covid clinics they basically offer you meditation, exercise and that. It’s a real slap in the face as people have so many symptoms leaving them physically so un well. I was at the hospital twice since September with pressure in my chest and pains. I knew the difference from ‘anxiety’ chest pains and this wasn’t it. I even left it go for a few days to see if it would go away on its own before going to the hospital. Actually rang the helpline first as the UK health system is on its knees atm.
Every test they they did was normal. Said there’s no cure and only with time I’ll get better. I am booked to see a specialist in January who will cost money but it’s my only hope. She also treats people with vaccine injuries who have also been left in limbo.
I do work, it’s a computer job but hybrid. Tried to get full WFH but they wouldn’t allow it even though I had been working fully from home for quite some time before that. I even had a sick note from my doctor asking them to make adjustments. I might have to quit in the new year because every day is so debilitating and never know how you’re going to feel. And the light heads and weakness just are not good.
I would imagine that a Long Covid clinic is run along the same lines as a chronic pain/CFS clinic? Learning to manage the symptoms as best you can? I'm not sure what the criteria is for a LC diagnosis and maybe it varies from doctor to doctor? Do you have faith in this private specialist? What qualifications does she have to advise on LC?
Can I ask how you were diagnosed with fibromyalgia? just googled it and definitely similar to long covid.
I use the long covid forums to speak to people and it definitely helps knowing there’s other people on my situation if not worse. Also a recovery forum too which is positive.
I’ve had my fissures for years now. The heal to an extent but then re open if my stool is hard or dry etc. I only have a shower unfortunately but I haven’t had a flare up in a few weeks thankfully. I did a stool test and I think it was for ibs or ibd and was negative but I’m sure as someone with anxiety I get ibs symptom here and there. Also long covid has created many GI issues for people long hauling.
It’s just my head went to worse case scenario when I thought of my symptoms and I thought well I’ve had blood in my stools for years so what if it’s too late etc.
Thank you so much for your response it’s very much appreciated it. Also if you have any tips on how you manage your fibromyalgia that would be super.
I’m not really sure to be honest I just know from other people who have been to long covid clinics and what they’ve said have done for them etc. yes I do as a family member is being treated by them for a vaccine injury as they have been fobbed off by the NHS. Another family member is being treat for vaccine injury also as they now have developed lupus. The specialist believes in vaccine injuries and long covid so I’m willing to give it a try.
Can I ask how you were diagnosed with fibromyalgia? just googled it and definitely similar to long covid.
I was diagnosed in 2019 after 8 years of symptoms affecting my body from head to toe. And actually, I'm crap at maths because this means I've had fibro now for 12 years, not ten.
The constant symptoms (many not explained by anxiety) caused me to think I had cancer, so my HA went into overdrive, as you can probably imagine. I had so many tests, all coming back negative aside for a deficient in Vit D (and also B12). In the end, I happened to notice that a lot of autistics have fibro, so that caused me to research it and all my symptoms were there, and with a trauma trigger - in my case, the sudden death of my mother. I went to see my GP with a comprehensive list of symptoms of fibro crosschecked with my own - most of which I'd been to see him (or some other GP with) - and asked him about the possibility of it being fibro. He wasn't very knowledgeable about the condition, but fair play to him, he read my papers and agreed that what I had fit the description. so he referred me to Rheumatology and a year later I was formally diagnosed.
Fibro is basically a diagnosis of elimination, but there is also a trigger point test and when the consultant put pressure on mine, I was not only extremely tender on contact, but within 20 minutes of the test, I was in so much pain I was on 30 mg of co-codamol and had to spend the rest of the day in bed under heated blankets..
My fibro 'norm' feels like I have flu with pain all over my body. Most people with fibro are only affected by cold/wet weather, but a small number are affected by hot/humid weather as well, and that's me. So I don't really get any respite. I'm always in some level of pain or discomfort, and I have developed musculoskeletal issues too (and TMJ). This is all aside IBS and chronic migraines..
I’ve had my fissures for years now. The heal to an extent but then re open if my stool is hard or dry etc.
Trick is to prevent your stools become hard and dry with diet, laxatives and stool softeners.
I only have a shower unfortunately but I haven’t had a flare up in a few weeks thankfully. I did a stool test and I think it was for ibs or ibd and was negative but I’m sure as someone with anxiety I get ibs symptom here and there. Also long covid has created many GI issues for people long hauling.
A sitz bath is like a big potty that sits on your toilet seat. You can buy them from Amazon. The idea is that you fill it with warm water and sit on it for about 5 mins after having a poo.
Fibro also creates/worsens IBS. I have all kinds of gut issues that I didn't have before fibro, such as motility issues..
It’s just my head went to worse case scenario when I thought of my symptoms and I thought well I’ve had blood in my stools for years so what if it’s too late etc.
HA will always take us to the worst case scenario, but the reality is that what we fear is the least likely scenario. (HA only bothers with what has the potential to kill us).
Thank you so much for your response it’s very much appreciated it. Also if you have any tips on how you manage your fibromyalgia that would be super.
I wish I could answer this question with some positivity, but the reality - for me - is that I've yet to accept how this condition has turned my life upside down and made my world so small smaller than it already was. At first, I was just so relieved it wasn't cancer, but as the years have gone on, I have struggled more with depression. In fairness, I'm responding to your question on a bad day. I've been in bed most of this week and there's not one part of my body which doesn't hurt, so it's hard to be positive. (But this is where those forums come in because we all support one another).
Chronic pain changes you as a person. And the thing with fibro is that there is currently no cure for it. However, they are changing their minds about this condition originating from the brain, as previously thought. Recent studies have indicated that it could be an immune condition, but the positive in this is that there is potential for the condition to be better managed if this turns out to be the case. (At the moment, it's very much a case of trial and error with meds).
I think my best tip - and I know this sounds nuts given the pain/exhaustion which comes with these chronic conditions - is to do some exercise everyday, even if it is 5 mins of gentle yoga. (This will also help with your GI issues).
I have been diagnosed with long covid. That’s what they are telling me I have.
My symptoms started after I had a very very mild case of covid (only time I had it) back in Feb 2022. It started mid March with really over whelming anxiety, brain fog, weakness, tiredness, GI issues and so on. I also got the normal cold/flu end of April.
Since September I have been in A&E three times due to feeling so unwell. Twice with pains in my chest etc. I had all blood work and chest X-rays and ecg etc done all normal.
At my doctors I had a full mot of blood work done and another ecg and stool sample done which were all normal. The only abnormal was my b12 being really high due to me taking a 1000mg supplement.
I have had blood in my stool on and off since I was 18. Now 34. I was told I have chronic fissures and internal piles. Anytime I have blood in my stool it’s accompanied with a very sharp pain and bright red blood which I assume is the fissure opening again. My stools are different all the time depending on what i eat. I have also had a pain in my lower/upper right abdomen on and off for months now and have been so chronically fatigue and weak with loss of appetite for the last 2 weeks. I went to A&E again last week and was told all my blood work is normal. I’m waiting for a referral to a dietitian and ultrasound.
I am CONVINCED I have bowel cancer and that they’re just fobbing me off as long Covid and every day I’m getting sicker and I’m just going to die. I have no idea what to do and if I am just over reacting and thinking the worst which has caused me to spiral into a depressive/anxious rabbit hole of health anxiety and making everything worse.
Our health system is on its knees currently in the UK so I don’t know what to do now and just wait for my referral to the long covid clinic and ultrasound etc. so sorry I’m just so down in the dumps and I’m despair I have been miss diagnosed. I’ve already posted about it before but just need someone to talk to that is similar to me or knows what health anxiety can be life etc.
nomorepanic
04-01-23, 10:27
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
WorryRaptor
04-01-23, 13:13
I hope you're doing ok. It really sounds like you're suffering.
I'm know you're not looking for different perspectives, so I'm just sharing my experience :)
I don't know if this helps at all, but I very much doubt you'd be "fobbed off" with a long covid diagnosis. Doctors are extremely reluctant to do that with a new condition that isn't fully understood yet. That would mess up valuable data. They also don't mess around with anything that is potentially cancer. As overwhelmed as the NHS is, they're still extremely diligent about cancer red flags, probably even more so, now that they're aware of patients potentially slipping through the net. They would only diagnose you with long covid if they really believed that was what your issue was. I have friends and family with long covid, and it is truly horrendous for them, but their doctors were pretty careful about diagnosing them. It sounds like you've had quite a few tests already, and have more coming up, which means your doctors are paying attention. I know the NHS is crumbling at the moment, but it sounds like you're in good hands.
I'm so sorry you have to deal with it too. Viruses can really mess with the body. My oesophagus and stomach still has weird "trembles" 15 years after I had a nasty Christmas virus. I didn't have a cough during that time, I simply had horrendous weakness and burning in my sinuses, yet my stomach was the main thing that felt the lasting effects. I had post viral fatigue for a year after that too. Throw in Covid, a new and more powerful virus compared what we've had before, and it's not surprising that it leaves people in a bad way, long after it has departed. I would say your doctors are probably spot on with their diagnoses.
There's also the very real possibility that you might be having a combination of unrelated symptoms, but together, they feel like they point to a bigger picture. I have an occasional tremor in my left hand, and I get skipped heartbeats. Sometimes both happen together and for a moment I'm like "oh what if this is all cardiac and my shaky hand is actually a sign of my heart struggling" - Nope, I just have a crappy disc in my neck that messes with my hand, and the skipped beats can be caused by digestion issues that I wasn't keeping on top of. Two separate causes, both things that I can address.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.