Story Does anyone else suffer with chronic pain and medical gasslighting?

[smileycryptid]

I have been suffering with a severe chronic head neck and eye pain for 2 months and I a week ago I started to see halos and starbursts in my vision and I'm worried about losing my sight because it's gradually getting worse and it hurts to even open my eyes I feel dizzy and thirsty constantly
I have cold hands and feet and have lost feeling in both my legs and arms so I struggle to walk due to constant tingling and coordination issues I have tried to go to the er multiple times and the gp and I'm currently under a neurologist who I can't get hold of who says it's just anxiety and wont take anything I say seriously
I have been repeatedly told I'm anxious and my pain isn't real even tho multiple tests have come up that there is an issue including my heart being stuck at 120 for a whole week low b9 and high blood pressure when my normal heart rate is around 80 I have never been treated so badly by professionals I am in 10/10 pain and can't go on any longer
I have a lovely partner and I desperately don't want to lose them but the nhs is so bad and I can't afford private
about a month ago the pain was so bad I went to jump into the ocean but couldn't because they were to many police around and I didn't want to get rescued any advice for a painless death I fear waking up in an even worse condition

Also sorry for the bad writing I'm autistic and dyslexic

 

[leavingthesoultrap]

To me these symptoms soud like they could be multiple sclerosis. You should definitely try to get a different neurologist to check u up and do a MRI.
Anyway, I myself am unwell too and trying to figure out whats wrong...

 

[destinationlosangel]

Yes i am quite familiar with medical gaslighting and it is one of the reasons i am here. i think u should get a neck CT scan n then an mri

 

[Meteora]

Hi and welcone to the forum

Do you take any meds against anxiety?
To me it sounds like migraine, not the part with the arms and legs though.

What I can say from personal experience, the body can react extremely strong with all kind of weird symptoms if the soul is suffering.

I know a woman who in her twenties had paralized legs for some months, it was a reaction to a childhood trauma.

Try not to observe your body obsessively, it will make the symptoms worse. And as @leavingthesoultrap says, get a second opinion.

Good luck

 

[roo]

ive been going through this for 7 years and got a very unwilling diagnosis 2 months ago, its so hard to deal with the neglect and so tiring to keep fighting for ur health when ur just trying to survive. i really hope u can find a doctor that listens, dont give up. also i do agree that these symptoms are similar to ms, i have it myself. i think u should request an mri scan from ur gp, i dont think they can deny u of that. i hope everything works out <3

 

[divinemistress36]

Tell them you are dealing with severe headaches and demand an MRI

 

[MyChoiceAlone]

i don't believe in doctors. they went to med school. so what? they use a playbook for the most part or try to sell you unnecessary meds.

Tell them you are dealing with severe headaches and demand an MRI

really? docs here push that on me


and it's never conclusive

 

[divinemistress36]

i don't believe in doctors. they went to med school. so what? they use a playbook for the most part or try to sell you unnecessary meds.

really? docs here push that on me


and it's never conclusive

Doctors have ruined my life I hate them. It's not conclusive but it could show if there signs of MS, stroke, or brain tumor

 

[Final_Choice]

I've been gaslighted by my parents, and my doctors as well before they did tests on me and they found proof that what I was experiencing was real, but my parents still think I'm faking it despite having been diagnosed for all my conditions multiple times for each by different doctors just to make sure it wasn't an error.

 

[lnlybnny]

i'm sorry you're going through this.
i'm undiagnosed because i'm scared of being gaslighted by doctors too, i'm just sure that would happen

 

[Raindancer]

I am very sorry you are going through this. I understand how it feels to be unheard and dismissed medically. I was medically gaslit for years and because of that my autoimmune disease went undiagnosed and did so much damage and I lost any chance to put my disease into remission. I've lost so much because of my health issues It is exhausting trying to be heard and at least in the US, since the pandemic, the health system has gotten extremely worse.. I am not sure if this is an option where you are, but can you get a patient advocate? When we have exhausted all options and no one is listening it helps to have someone who will be there for you who knows the health system. If not, maybe someone in your family could take that position. Push back against the doctor when they are being dismissive.

 

[the_fail_man]

I have been suffering with a severe chronic head neck and eye pain for 2 months and I a week ago I started to see halos and starbursts in my vision and I'm worried about losing my sight because it's gradually getting worse and it hurts to even open my eyes I feel dizzy and thirsty constantly
I have cold hands and feet and have lost feeling in both my legs and arms so I struggle to walk due to constant tingling and coordination issues I have tried to go to the er multiple times and the gp and I'm currently under a neurologist who I can't get hold of who says it's just anxiety and wont take anything I say seriously
I have been repeatedly told I'm anxious and my pain isn't real even tho multiple tests have come up that there is an issue including my heart being stuck at 120 for a whole week low b9 and high blood pressure when my normal heart rate is around 80 I have never been treated so badly by professionals I am in 10/10 pain and can't go on any longer
I have a lovely partner and I desperately don't want to lose them but the nhs is so bad and I can't afford private
about a month ago the pain was so bad I went to jump into the ocean but couldn't because they were to many police around and I didn't want to get rescued any advice for a painless death I fear waking up in an even worse condition

Also sorry for the bad writing I'm autistic and dyslexic

Yes. I have M.E. I know a thing or give about medical gaslighting. I would recommend looking into Cranio cervical instability or/and MS. It sucks dick. I've been bedridden for several years. I've never had a partner but I wanted one. I just never had a chance. Life didn't give me that luxury. Once my parents get close to that point I'm going too. So probably 6 months.

I'm also autistic, not dyslexic but I got a friend whom I'm close with who is so I like 20% understand.

I know the waking up in an even worse condition fear. It's been happening to me daily for years now. Each week. Worse and worse. I just wanna go home man. Hugs

 

[Throwawayacc3]

i don't believe in doctors. they went to med school. so what? they use a playbook for the most part or try to sell you unnecessary meds.

really? docs here push that on me


and it's never conclusive

In the UK. Numerous open chats with my locum (I think he alright) however we started talking a little bit more deep. He was alluding that he knows aspects of the NHS are completely broken and that if he thought about each patient too much he would probably be severely depressed. However he is able to switch off his brain which I can't. They are all quite vague - you need to pin point something yourself and lead them to it otherwise they won't look at it at all or just bring you to somewhere completely different.

 

[smileycryptid]

Thank you so much for the reply's they really mean a lot sorry my reply is so late i feel a lot less alone and and that they are people who understand I think you guys are right multiple sclerosis could be very likely since my nan has it and we have history of autoimmune disorders and blindness in are family


I have been pushing for testing anything an mri a lumbar puncture but unfortunately I have been told that only after brief look at my legs that I wouldn't need one even though they are Ice cold painful tingly and have lost a lot of feeling and I had a positive Romberg test and also my eyes were stuck dilated I was referred from the er and haven't had a proper consultation or have they even asked about any of my other symptoms my partner yesterday spent 4 hours trying to contact someone from neurology but just kept being sent to different places in the hospital and voicemails apparently none of them are in at the moment it's honestly ridiculous it's been 2 months we have tried to email and have been to er when symptoms got 2 unbearable and my symptoms have gradually worsened to the point of unbearable pain especially in my eyes head and neck even after a suicide attempt which lead to a police search for me which the hospital new about we have still had nothing

I'm hearing that alot of people with chronic illnesses have had similar experiences and I think it's really cruel that people are forced to suffer like this no one should have to live in constant pain with no help I'm afab and autistic and have been told I'm 'anxious presenting' and that my pain isn't real to the point that I lost my temper and got sent to the mental health people instead I have heard its often used to invalidate someone's pain of course someone in that much pain would be anxious
having anxiety doesn't invalidate your pain

We can't get hold of neurology but are going to the eye unit today because my eyesight is getting really bad hopefully they might be able to wright a report to neurology
my partner has had enough and is looking into medical loans for private healthcare but it's hard because we are young and private is really expensive in the uk and I hate for someone to have to do that I should be able to do these things for myself I hate being in pain and feeling like a burden on others I don't like getting help and always feel guilty I wish I could just close my eyes and disappear from all existence and all memory of me could just be erased so there would be no burden.

 

[Throwawayacc3]

Thank you so much for the reply's they really mean a lot sorry my reply is so late i feel a lot less alone and and that they are people who understand I think you guys are right multiple sclerosis could be very likely since my nan has it and we have history of autoimmune disorders and blindness in are family


I have been pushing for testing anything an mri a lumbar puncture but unfortunately I have been told that only after brief look at my legs that I wouldn't need one even though they are Ice cold painful tingly and have lost a lot of feeling and I had a positive Romberg test and also my eyes were stuck dilated I was referred from the er and haven't had a proper consultation or have they even asked about any of my other symptoms my partner yesterday spent 4 hours trying to contact someone from neurology but just kept being sent to different places in the hospital and voicemails apparently none of them are in at the moment it's honestly ridiculous it's been 2 months we have tried to email and have been to er when symptoms got 2 unbearable and my symptoms have gradually worsened to the point of unbearable pain especially in my eyes head and neck even after a suicide attempt which lead to a police search for me which the hospital new about we have still had nothing

I'm hearing that alot of people with chronic illnesses have had similar experiences and I think it's really cruel that people are forced to suffer like this no one should have to live in constant pain with no help I'm afab and autistic and have been told I'm 'anxious presenting' and that my pain isn't real to the point that I lost my temper and got sent to the mental health people instead I have heard its often used to invalidate someone's pain of course someone in that much pain would be anxious
having anxiety doesn't invalidate your pain

We can't get hold of neurology but are going to the eye unit today because my eyesight is getting really bad hopefully they might be able to wright a report to neurology
my partner has had enough and is looking into medical loans for private healthcare but it's hard because we are young and private is really expensive in the uk and I hate for someone to have to do that I should be able to do these things for myself I hate being in pain and feeling like a burden on others I don't like getting help and always feel guilty I wish I could just close my eyes and disappear from all existence and all memory of me could just be erased so there would be no burden.

You have to push and push and push non stop. Print out more, do a diary and note timestamps of when things happened and link it with a study/medical journey. Create a folder.

It sounds so insane but it's the only way on the NHS.

 

[smileycryptid]

Yes. I have M.E. I know a thing or give about medical gaslighting. I would recommend looking into Cranio cervical instability or/and MS. It sucks dick. I've been bedridden for several years. I've never had a partner but I wanted one. I just never had a chance. Life didn't give me that luxury. Once my parents get close to that point I'm going too. So probably 6 months.

I'm also autistic, not dyslexic but I got a friend whom I'm close with who is so I like 20% understand.

I know the waking up in an even worse condition fear. It's been happening to me daily for years now. Each week. Worse and worse. I just wanna go home man. Hugs

I worry about being judged for my bad writing but everyone on here seems really understanding and non judgmental of autism and other things it's nice

the fear of getting worse is so real and the fear of getting even more symptoms is so hard to deal with sometimes

And thank you for the cci suggestion I have never heard of that and it sounds very possible also I just looked up m.e and it sounds really rough hopefully you can go home soon dude being away from home due to medical stuff sucks

You have to push and push and push non stop. Print out more, do a diary and note timestamps of when things happened and link it with a study/medical journey. Create a folder.

It sounds so insane but it's the only way on the NHS.

Thank you for the advice going to make one today
And yeah it's insane It's feels like you have to harass them to actually get any help

I am very sorry you are going through this. I understand how it feels to be unheard and dismissed medically. I was medically gaslit for years and because of that my autoimmune disease went undiagnosed and did so much damage and I lost any chance to put my disease into remission. I've lost so much because of my health issues It is exhausting trying to be heard and at least in the US, since the pandemic, the health system has gotten extremely worse.. I am not sure if this is an option where you are, but can you get a patient advocate? When we have exhausted all options and no one is listening it helps to have someone who will be there for you who knows the health system. If not, maybe someone in your family could take that position. Push back against the doctor when they are being dismissive.

that's so awful I'm so sorry they treated you like that no one should have to grieve for things that could have been helped and put through unnecessary pain
medical gasslighting is terrible and things like auto immune disorders never seem to be seen as a priority from doctors even tho they can seriously effect quality of life and can have serious complications
And yeah everything in the uk also seems so much worse after the pandemic It's impossible to get in touch with anyone at the hospital and everyone seems stressed dismissive and sometimes just plain rude
I have my girlfriend as an advocate but neither of us seem to be taken seriously we're both pretty tired of being dismissed and more we get told nothing wrong the harder it is to keep pushing you just start to feel defeated
Will keep trying tho going to the eye unit today and will hope for some help
I wish you the best of luck with the system even tho it awful I hope that now that you have a diagnosis they'll stop gasslighting you and take you seriously

 

[ms_beaverhousen]

I have been suffering with a severe chronic head neck and eye pain for 2 months and I a week ago I started to see halos and starbursts in my vision and I'm worried about losing my sight because it's gradually getting worse and it hurts to even open my eyes I feel dizzy and thirsty constantly
I have cold hands and feet and have lost feeling in both my legs and arms so I struggle to walk due to constant tingling and coordination issues I have tried to go to the er multiple times and the gp and I'm currently under a neurologist who I can't get hold of who says it's just anxiety and wont take anything I say seriously
I have been repeatedly told I'm anxious and my pain isn't real even tho multiple tests have come up that there is an issue including my heart being stuck at 120 for a whole week low b9 and high blood pressure when my normal heart rate is around 80 I have never been treated so badly by professionals I am in 10/10 pain and can't go on any longer
I have a lovely partner and I desperately don't want to lose them but the nhs is so bad and I can't afford private
about a month ago the pain was so bad I went to jump into the ocean but couldn't because they were to many police around and I didn't want to get rescued any advice for a painless death I fear waking up in an even worse condition

Also sorry for the bad writing I'm autistic and dyslexic

Diabetes, nerve issues, gotta get the bp/heart rate under control. Seen an optometrist? It's nearly impossible to get a head ct unless you're actually bleeding from your head. It's so frustrating.

 

[Myexit]

Thank you so much for the reply's they really mean a lot sorry my reply is so late i feel a lot less alone and and that they are people who understand I think you guys are right multiple sclerosis could be very likely since my nan has it and we have history of autoimmune disorders and blindness in are family


I have been pushing for testing anything an mri a lumbar puncture but unfortunately I have been told that only after brief look at my legs that I wouldn't need one even though they are Ice cold painful tingly and have lost a lot of feeling and I had a positive Romberg test and also my eyes were stuck dilated I was referred from the er and haven't had a proper consultation or have they even asked about any of my other symptoms my partner yesterday spent 4 hours trying to contact someone from neurology but just kept being sent to different places in the hospital and voicemails apparently none of them are in at the moment it's honestly ridiculous it's been 2 months we have tried to email and have been to er when symptoms got 2 unbearable and my symptoms have gradually worsened to the point of unbearable pain especially in my eyes head and neck even after a suicide attempt which lead to a police search for me which the hospital new about we have still had nothing

I'm hearing that alot of people with chronic illnesses have had similar experiences and I think it's really cruel that people are forced to suffer like this no one should have to live in constant pain with no help I'm afab and autistic and have been told I'm 'anxious presenting' and that my pain isn't real to the point that I lost my temper and got sent to the mental health people instead I have heard its often used to invalidate someone's pain of course someone in that much pain would be anxious
having anxiety doesn't invalidate your pain

We can't get hold of neurology but are going to the eye unit today because my eyesight is getting really bad hopefully they might be able to wright a report to neurology
my partner has had enough and is looking into medical loans for private healthcare but it's hard because we are young and private is really expensive in the uk and I hate for someone to have to do that I should be able to do these things for myself I hate being in pain and feeling like a burden on others I don't like getting help and always feel guilty I wish I could just close my eyes and disappear from all existence and all memory of me could just be erased so there would be no burden.

I'm so sorry you have to put up with the gaslighting NHS who all seem to gang up on patients they think they can manipulate.
I'm going through the same with enormous pain, hands seizing up, unable to write, dropping things, having accidents in kitchen due to hands failing. Do the useless GP's care, absolutely not and don't dare ask for pain relief or be labelled a drug seeker.
Labelling all pain as anxiety has been the go to for years now, guess they offered you SSRI's of some other crap they know doesn't work.
Look after yourself
I really feel your pain