Hi, my names Paul, I’m 39 and find myself between a rock and a hard place.
(apologies that this write up may be a little long & all over the place, but I hope you can read and make sense of what I’m trying to explain. I experience brain fog and a lot of confusion, so trying to write this has proved difficult for me and taken many weeks.)
My story spans many many years, but I will focus mostly on the past few years...
After many years of having issues when taking medication, supplements mainly breathing, twitching, headaches, insomnia, fatigue, low mood etc. The problems got worse over 3 years ago when I was prescribed and taking some medication Sertraline. Despite reporting issues from the get go, i was told to keep taking them, as all medications come with side effects... Anyway a few days later I got chest pain with racing heart which normalised after a few minutes... 2 hours later a red rash like large patches of sun burn appeared around my upper body and neck.
Over the coming months I started to react to things on my skin, then over time more and more things both on my skin and what I ate... Then started experiencing various pain, hair loss including facial hair & legs.
So with my skin it started off with shampoos/body washes, then as time went on things like aftershaves/essential oils and then to almost everything with chemicals especially scented ones. The only things I can now safely use on my skin are things like black soap that are made with Shea Butter, coconut oil, olive oil etc... I was using Calomine lotion almost daily to help with the red rash, but realised it wasn’t good to do so.
In terms of foods, I noticed I was having issues with more and more of them to point the only things I know I can now eat that don’t bother me as much is... Turkey, Eggs, Carrots, Green Beans, Spinach, White Potato, Brown Rice, Almonds, Almond Milk and filtered water. My options are very very limited. I’ve gone from being 11 stone 5 ibs, lifting weights to 9 stone 3 ibs in the last 3 years. I can barely eat anything, I’m finding it hard to maintain my weight, can’t eat when I go out etc.
I have issues with most things I consume and can’t take/have any medications, supplements, foods/drinks that contain additives like preservatives, all fruits and most vegetables, all acidic foods, but also a lot of non acidic foods like melons, bell peppers cucumber (I wake up feeling like I’ve stopped breathing if I eat melons and cucumber, it’s crazy!). Even Herbs, salt and pepper are off the menu.
I believed the issue wasn’t with the above things, but something wrong within my body, which I believed to be my right kidney some kind of dysfunction (All of the below symptoms would suggest it to be my kidney, but I just don’t know?) and whatever it is that’s causing it now means my body can’t handle having the above. Otherwise I get the following...
I get amongst other things, the pain around where my right kidney is worsens, lower back muscle that goes down the back of my right thigh, calf, ankle, up around my liver into my neck, round the back into the base of my skull and around the right side of my head/eye. I get Joint/back/spine/muscle pain/stiffness/spasms/clicking. Blood shot eyes, chronic fatigue, insomnia, brain fog, confusion, dizziness, headaches, mood/anxiety/depression like symptoms, ectopic heartbeat, feeling like I’m over heating/dehydrated, sore eyes with blared vision, enlarged pupils, sensitivity to most foods, skin reactions, dry skin, sometimes slightly swollen ankles (More recently I’ve noticed an ammonia like smell, which basically smells like cat urine coming from my armpits and at times, brown strong smelling urine).
All of this could be linked to a possible kidney problem (something I’ve recently come to my own conclusion to August 2019, because no one is really listening or trying to help my situation), but despite this I have found it difficult to get to the right place to be helped. My Alt was over 250 (it’s now up and down between 60 to 100), so I was referred to a liver specialist September 2018, the first one seen in November 2018 was a surgeon (the wrong consultant) who wanted to just discharge me, I kicked up a fuss and he referred me to a gastroenterologist, who I seen on 5th January 2019 who also wouldn’t listen and was dismissing everything I was saying, before I’d even finished saying it (at the the time of seeing him I had swelling around my kidney/liver area).
I tried to explain this was caused/made worse by the medication a few years ago, that I believed everything I was experiencing was connected, that was getting worse over time. The replies were, no it’s not to everything and suggested it would get better by itself and tried to suggest that most of it was a result of depression/anxiety! He’s not the first to suggest it, that and it’s your age the heat or whatever. it’s all I’ve had the past 3 years. I was even advised to go for hypnosis, because I’d be a good candidate if my mind was powerful enough to create all this... You get diagnosed with depression and it’s all they flipping see! Do the pics I’ve included suggest they’re right!?
There was no open dialogue, discussion nothing. Just told whatever’s wrong will likely correct itself... This has been going on for over 3 years & beyond getting worse and I’m told it’ll likely just correct itself or it’s in my head. (I’m shaking my head and lost for words with how writing this is making me feel!).
It doesn’t help that apparently all the tests other than the ALT were normal (I haven’t seen them personally, but I’m going to request them.) bloods and Ultrasound scan. I just don’t know, How can I be experiencing all this and not be able to get answers!?
I was just left to see how things go for a year, before going back... I called up several weeks ago to see when it would be and was told July! The person I spoke to said she’d try and get one sooner... The next day would you believe. She was the first to acknowledge there was a problem, but with my liver, but didn’t know what. She was reluctant to do a biopsy and saad there was a few tests that I apparently hadn’t had. I asked her if it could be my right kidney, because of all the symptoms I’m having, but she said no it was my liver, but how could she, when she doesn’t even know what the cause is? I also recently read that if ALT is raised with no other liver markers or whatever that it most likely isn’t the liver, but the possible cause could be the KIDNEY, muscle or skeletal.
Last September after yet another GP appointment, I requested to be referred to a kidney specialist, which my GP did, but it was rejected, my life’s been and continues to be a living hell. I’m just stuck in limbo not getting the answers or help I need, my life passing me by... My life is limited, because of this problem, I’m in pain everyday with only heat for relief and self acupuncture for relief (I’m thinking of buying a vibrating massage gun or plate as they’re meant to be good for relaxing muscles amongst other benefits)
I set up a GoFundMe Page last September in the hope to raise funds to see a private consultant and have some tests done, as I was told by a consultant a couple of years ago that the NHS tests are not always accurate, reliable or able to get the whole picture and that the private hospital would have access to more advanced testing equipment and test for things the NHS might not.
I’d previously used most of what little savings I had on private physio and a chiropractor for the muscle/joint pain thinking that’s what I needed (I had seen a physio on the NHS, but they didn’t want to do any hands on treatment, just showed me some stretches to do at home). I don’t really have a supportive family or social group to help get the donations going or to share the page, so i didn’t raise much. I’m currently trying to sell some things to pay for tests.
I really believe this can be diagnosed and possibly fixed (hopefully before it gets worse or is the death of me) if only I can find the right tests or consultant who is the best in there field. Can anyone please shed any light on my situation, any suggestions in terms of of conditions it could be it tests I should/could ask for on the NHS, could private testing equipment shed some light where the NHS might not?
I don’t drink or smoke, I’ve done so much research and tried many natural things like various different vegetable and herbs, I try to exercise as much as possible to try and help fix my situation. Nothing has really helped, but usually makes all of my symptoms worse. Avoiding everything lessens my symptoms.
I appreciate everyone taking the time to read and reply to this, I apologise for the length, I’ve left out a lot, but wanted to cover as much as possible to try and as much info.
I was hoping to be able to add more than 1 pic to show the difference in my appearance over the past few years.