About Me, My Conditions & My Medication
I am a lady disabled from England who suffers from Chronic Pain, Chronic Fatigue, Hidradenitis Suppurativa, migraines, sciatica/piriformis as well as some other conditions such as a perforated septum and severe acid reflux. My illnesses are all permanent and most will get worse as time goes on! They have already gotten worse over the years to the severe point I am at right now.
I blog about my conditions and my struggles in life as I am pretty much housebound due to the severity of my illnesses (mainly the chronic pain and chronic fatigue), which are debilitating and make it so I am disabled and cannot work.
I don’t qualify to get ESA even though I am disabled and unable to work and am therefore living on around £300 total income a month!
None of my conditions can be cured and I am in severe pain and fatigued 24/7.
I have a depressed mood due to being stuck in the house 24/7 usually 365 days a year depending on any hospital appointments.
I thought I would list my conditions and how they affect me for those that aren’t sure what they are from the big ones that make me disabled all the way to the smaller ones.
I also list medications I have tried and my information on my financial struggles.
Detailed Information On My Conditions
I have constant permanent 24/7 extreme 10/10 pain that affects my ability to walk, stand and do anything. I cannot walk more than about 50 feet without the pain getting worse and after 100 feet I cannot carry on and am in severe pain. I cannot stand for more than a few minutes nor can I bend down due to the pain.
If I do more than I should like trying to bend down or walk a little further, I will pay for it in days of crippling pain even with the Fentanyl and the Morphine.
I use a stick to walk and I rarely ever leave the house as it is too painful and I can’t afford a car. I am disabled due to the severity of this.
I spent all my time in my chair or in bed.
I had the pain for decades which gradually got worse over the years. It started mild and got worse as time passed.
I tried everything available over the years from things non-medicinal such as various physio sessions, exercise, stretches, mindfulness as well as various medications (listed below), gradually trying everything over a few years. Nothing did anything at all, not even a little and in fact, I mostly had horrific side effects. Then I tried Fentanyl which after increasing a dose I could tell was working. My doctor and I tried doses until I eventually got a dose that worked well and a time interval that works well. This took a year to perfect.
Before the Fentanyl, I was bed-bound all the time with the most horrific pain so severe that every second was unbearable! It felt like I had been hit by a sledgehammer over and over. The worst pain imaginable.
I would lay in bed and scream and cry all day and night. I could barely sleep much as the pain was too much. I would never want to go back to that as it was unbearable.
The Fentanyl doesn’t kill the pain totally, but just lowers it to about an 8 out of 10 instead of a 10, and is the only thing that touches it that I can get on prescription. It allows me to be not bed-bound and not screaming in pain day and night. I have a form of a life.
I take morphine for breakthrough pain.
Cannabis worked but I am unable to get that on the NHS and cannot afford a private doctor
I also have constant permanent 24/7 extreme fatigue that is very extreme. Everyday feels like I have run a marathon and not slept in weeks all the time, even though I sleep 10-11 hours a night and don’t move much in the day as it causes too much pain and fatigue. I am exhausted all the time and no sleep helps it. I fall asleep in my chair often or I go to bed to nap during the day as I am just so tired all the time.
When I wake after 10-11 hours I am still extremely fatigued. Any less than that is too little for me and I can barely function. Just moving exhausts me to an extreme.
If I do too much the fatigue is even worse for days after.
I can’t type for long as it dramatically worsens my pain and fatigue. I take days to write a blog post as I have to do small parts at a time. I used to be a secretary when I could work so it is something I used to do all the time and now I can’t do it for more than a few mins at a time!
This is due to the chronic fatigue, but also the depression from being housebound will contribute to it. This is where I am so tired and exhausted that it takes me 1-2 hours to get up on a morning.
I just can’t get out of bed. I have to force myself up! I am so tired and have nothing to get up for and I just want to stay in bed where I am the comfiest all the time.
This is an incurable permanent condition that affects my skin. I get spots, blackheads and very painful, very deep boils in various areas all over my body such as under my breasts, armpits, buttocks, thighs, around my private parts too which is awful. I have had it on my face and other areas but these are the main areas I get it.
It makes sitting and moving incredibly difficult when I have a breakout. it gets to the point where you can barely move without severe sharp pain. The pain of the boils is very high and they sometimes leak over a long period of time (days to weeks), slowly leaking blood and pus whilst still being very painful.
I get pain in my buttocks that runs down my legs and it makes it very hard to sit which is very hard when I am on my chair all day due to chronic pain and chronic fatigue. I can barely move so I can’t move around to help it, nor exercise. It is very painful and i have it everyday, some days are worse than others. I spend all my time in my chair or bed so I don’t get much relief from this condition.
I think it is piriformis rather than sciatica due to it being in my buttocks more, but the doctors here don’t do much in the way of tests. He diagnosed sciatica over the phone.
I get severe migraines usually once a month that last 5-7 days usually. They are debilitating and constant. I get very bad nausea and vomiting that no anti-nausea medication helps.
I can barely do anything when I get one and no painkiller helps. I started sumatriptan not long ago after asking my doctor numerous times for something to help the pain
I have a huge hole in my septum (the divider inside your nose) that is very big and scabs and bleeds sometimes. I have to moisturise it all the time to stop it getting bigger although it is much bigger than it used to be already.
It gets a little bigger every few months which is worrying. One day there is a chance it will get so big my nose will collapse which I am hoping never happens.
I have no idea why it started and the doctors didn’t do any investigations
This one most people will know although mine is severe so I have to take prescription medication for it rather than over the counter medicines which don’t do a thing.
Acid goes into my mouth and often vomit too (gross but true), and I have extreme burning all the time which makes sleeping difficult. Thankfully the medication controls this well. This is obviously the most minor condition but I wanted to list everything that affects me.
Not Yet Diagnosed
I recently have had four positive autoimmune tests:
Parietal cell autoantibody level Positive (Due to Mitochondrial Ab)
Mitochondrial antibody screening test Positive at 1/100
Anti SCL-70 AB Blot Positive
ANA test positive
Plus the follow up liver test came back borderline.: Serum alanine aminotransferase level 46 iu/L [0.0 – 40.0]
I am currently in progress with getting these diagnosed. I have had a referral to rhumatology for the SCL-70 test which could be many different things including sclerosis.
The B12 came back ok so I am not sure what will happen with the parietal cell results.
The liver came back with one borderline result and the doctor wants to just retest in 3 months, but seeing as it could be PBC, it shouldn’t be ignored.
I sadly live off one just benefit which is PIP as the government say I am not eligible for others such as ESA which is the main disability benefit nor Universal Credit even though I cannot work and am disabled!
I was working 16 hours a week as I physically couldn’t work full time anymore due to my chronic illnesses. My health deteriorated so I started working casual part time hours and then my health deteriorated severely so I couldn’t work at all.
Due to the hours I worked, I hadn’t paid enough National Insurance credits to qualify for ESA which is a ridiculous rule for getting ESA! I worked as much as I could and this penalised me.
As I don’t live alone, their income/savings/investments are taken into account so I don’t get the second type of ESA nor do I get Universal Credit either.
I also don’t get any National Insurance credits due to not qualifying for the benefits that give it such as ESA, meaning I won’t get a pension when I am old either.
I get £300 a month and live off around 55p-65p a day for food, which is not remotely enough to survive off!
I don’t have any family alive so I don’t have support from there.
I don’t earn anything from my blog. I do have an ad but I don’t get anything from it yet.
I stream some games three times a week but I don’t earn anything from that either. I stream on a laptop with a controller as I can’t use a keyboard, in my only chair in the house that I use to sit in whenever I am not in bed as I don’t have a PC nor room for a PC plus I don’t have the money for that anyway.
I don’t buy the games as I don’t have any money so I play old games, free games or ones I get free in return for streaming them on my stream.
I can’t do it anymore than three times a week as it aggravates my pain and makes my fatigue much worse plus it takes at least 36 hours just to recover from a few hours playing games on stream!
My pain and fatigue are dramatically worse after a few hours streaming and I have a headache or migraine after most streams.
This is my only real contact with the outside world as I don’t talk to anyone or see anyone ever! Replying to a few people that type in chat is my only contact with people.
Medication And Treatments
Matrifen Fentanyl Patch 50mcg
Sevredol Morphine 20mg (breakthrough pain)
Amitryptline 10mg x3 at night (for migraines and sciatica)
Clonidine 25mg x2 a day (for withdrawal symptoms) (reduced dose as not working)
Metoclopramide 10mg (nausea)
Omeprazole 10mg (acid reflux)
Sumatriptan 50mg (migraines)
Clindamycin Lotion (Hidradenitis Suppurativa)
Hibiscrub (Hidradenitis Suppurativa)
Past Pain Medication
Matrifen Fentanyl Patch (12mcg – 75mcg)
Clonidine 50mg twice a day (for withdrawal symptoms of the fentanyl)
Amitriptyline (10mg – 2 at night)
Buprenorphine Butec Patch (5mcg – 20mcg)
Codeine (1 or 2 four times a day as required)
Duloxetine (60mg a day)
Co-dydramol (10mg/500mg tablets – 1 or 2 as required)
Gabapentin (300 mg – three times per day)
Methocarbamol (750mg – 2 four times/day)
Co-codamol (30mg/500mg – 2 four times a day)
Baclofen (10mg) for sciatica
Other Past Medication
Prochlorperazine 3mg 1 or 2 twice day (nausea)
Painkillers Unavailable On NHS
Cannabis (works but not available on NHS for pain)
Other Non-Medicinal Treatments
Physiotherapy (didn’t work)
Exercise (didn’t work)
Stretches (didn’t work)
Mindfulness (waste of time)
CBT (waste of time)