To feel so scared and alone

[Coconutpinacolada]

I know it sounds a bit dramatic but I really do

a few months ago I became unwell. I started taking horrendous headaches and started getting weird episodes of back pain. It was mainly focussed around my lower back, just above hip level, and out of nowhere it suddenly has a really intense achey feeling. At times I can tolerate it but at other times I am physically wincing and sobbing with the achey feeling. It’s not like a pain and it’s not like a numbness either, it’s a really really uncomfortable deep achey feeling that comes and goes but it’s coming more and more now. I’ve also started getting pains and pins and needles in my legs and feet, and I’ve started getting the achey feeling in one of my arm/wrist now too. It’s getting worse - for example it happened today and I couldn’t hold my fork as it was an intense deep ache in my wrist and I physically couldn’t hold the fork. The symptoms come and go but they are happening more and more and getting worse now. it all started with the deep back ache- it doesn’t feel muscular and I went to a physio who said it’s not sciatica but we tried different exercises etc and nothing helped so they said my gp needed to refer me for a scan of my lower back but they refused and said it’s not needed and it’s probably just strain. They did send me for a head scan for the new headaches which was helpful as it ruled out MS

the new thing that started about 6 weeks ago is excruciating pain to poo (like to the point I am screaming the house down, it’s agony) I’m not constipated or straining it just feels agony and the poo is covered in red blood and I’m getting a lot of blood on wiping.I’ve been checked for piles and fissures and there is neither. I was told it’s not serious because the blood is red and I’m too young for this to be anything serious (I’m 27) , but I’m concerned that the backache and the poo pain/blood are somehow related

I’ve been to so many different people for help and I feel like nobody is taking me seriously. I’ve been told it’s anxiety, stress, maybe just my IBS playing up but I know it’s absolutely not any of them. I’ve requested being sent to a specialist to check out the symptoms but I was told I didn’t need that and the symptoms were too vague and not serious enough. but i can’t surely be expected to just live like this from now on. I absolutely can’t afford to get private healthcare of any kind unfortunately (I blew any little money I did have on physio) so I’m reliant on the nhs system but I’m getting nowadays

i understand that it probably is just nothing but I feel so upset and scared and alone with it all. I’m crying myself to sleep most nights now because of it, I’m in so much discomfort and nothing is helping

don’t really know why I’m posting because I know nobody can help but I just feel so upset and frightened :(

Bumping - maybe this can be moved to general topic with a change of name op? X
Sorry you're going through this

That sounds so awful for you I am sorry. Have you had rheumatology type bloods? Sometimes they just can’t work out what’s wrong. It doesn’t mean there is not anything going on but they just can’t work it out. Which I always think must be the worst

Go back to your GP and do NOT be fobbed off..elaborate if you have to but don't leave without having investigations.

You can also (when you're having these episodes) go to A&E..

You poor thing. I second going back to the doctor (take a family member for support and to advocate for you if necessary). I am not a doctor but MS is notoriously difficult to diagnose and your symptoms sound serious for one so young. Don't give up and take a diary of all the incidences of pain noting symptom, date, duration and severity which the doctor could use to justify a referral.

Also, don't take this the wrong way because your symptoms sound awful, but don't underestimate the potentially crippling effects of emotional stress, the symptoms of which can be centred in the body and very real. So you could try and look at that again with an open mind and focus on reducing any potential triggers.

Obviously though, you want to rule out anything sinister first though and we all know that primary health care in the UK isn't functioning as it should atm despite hcps trying their best. Mistakes are being made and illnesses are being missed. Good luck!

Ask for a faecal calprotectin test from GP. It sounds like you have ulcerative colitis.

💐That sounds terrible. I’ve been in your situation. Keep trying, go to a different gp. Don’t give up. It’s absolutely appalling the amount of effort some people have to go to in order to be taken seriously by the doctor. I think they are under enormous pressure from governments not to waste money on testing like X-ray and scans etc.

I hope you get the help that you need soon.

I was told it’s not serious because the blood is red and I’m too young for this to be anything serious (I’m 27)

I don't have any idea where the "it's red blood so it's not serious" idea comes from. Medically that is just not true. I'm not trying to scare you, but unexplained bleeding with pain should not be ignored regardless of your age.

I'm afraid you are just going to have to be persistent and do not take no for an answer. Tell the doctor that you understand that pain and bleeding can be symptoms of bowel cancer or inflammatory bowel disease and how can that be ruled out without any testing?

I'm sorry that you are in such a difficult situation. Advocate for yourself and do not allow them to fob you off. Emphasize that the pain/bleeding is consistently happening and has been occurring for 6+ weeks. No doctor should just be ignoring that.