27 Yr old man with multiple long term health conditions. Help?

[KKnight007]

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I'm 27, M. With 9 medical conditons i... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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I'm 27, M. With 9 medical conditons including FND. Whens it going to end? Help and advice 🙏

KKnight007 profile image

KKnight007

8 hours ago•0 Replies

Hello,

Below is the list of my diagnosis, but I have a story rather than conditons. I'm 27 year old man, 6ft 3, weird that I have a wingspan of 6ft 6 1/2. I'm 17 stone and try to maintain weight by health eating. I've recently quit smoking cigarettes. Day to day I struggle with standing for too long sitting in one position too long. I have back pain everyday, I have cramps that fluctuate depending on activity or not. I dont know any area of my body without pain. I struggle with walking and often have falls. I wasn't always like this, I had used to be able to play a full 90mins in an 11 a side football game. Afterwards I was in severe pain but brushed it off. I struggle socially with friends and any relationships. I struggle with moods and processing of emotions and stress. I've been getting worse for the past 10 years. My doctors keep looking at 1 conditon at a time. I'm being messed around by the national health service. I'm looking for any guidance or advice on any or all of my conditions. Also looking if anyone else in my age group has similar issues or long term conditons. I'm being piled up with diagnosis and no support afterwards. Just medication. Can anyone help?...

ADHD 2008

Bipolar 2012

Cramp Fasciculation Syndrome 2015

Anxiety Disorder with Panic 2016

IBS 2017

Folliculitis 2017

Functional Nuerological Disorder 2019

Autism 2020

Fibromyalgia 2021

Thanks

Kurt

[Adlon57]

I can sympathise with you fully! I have various specialist/consultants at my beck and call at the moment, essentially a lab. rat now after the effects of the pandemic "I'm officially a one off!", various rare conditions and combinations thereof. I am in demand, various tests and scans on my calendar at the moment, which I truly hope come in various ways useful to people after me! I am 65 with retirement just around the corner, I am terminally ill, never been a healthy bunny ALL my life! I sincerely hope you at the age of 27 do NOT have to go through the rigmarole I have been through? May your god be with you!👍

[koala84]

Hey Kurt. It sounds like you have been to hell and back with very few answers at the end. I only have three medical problems to deal with but my first started at age 11. I was diagnosed with degeneration of the lower spine. My vertebrae compress my discs which has at times caused severe pain, but stiffness and a dull ache constantly. I have limited mobility in my lower back and the compression causes sciatica. That is as unpredictable as the weather. It is always at it's worst when I sit for too long or try doing too much e.g. heavy lifting. I developed IBS in my mid twenties. Those symptoms come and go depending on diet, stress and exercise. They are a lot less severe now that I do not work. Dealing with the general public caused me lots of stress. Now I stay home a lot and avoid people, especially some of my family members. They sometimes cause the most stress. I find swimming helps with the first two medical problems but I am achy a lot from the third and my skin and muscles are quite sensitive to cold. The Fibromyalgia is the worst of all. Dealing with the fact that I would eventually be wheelchair bound when I was 11 was hard, but dealing with fibro is the hardest challenge a person can face. There is very little belief from doctors/friends/family. If you tell someone you have cancer they understand where you are coming from. You tell someone you have Fibromyalgia and they will look at you with a blank expression with no clue as to what you are referring. Every person with this condition has different symptoms to the next, we all have our own ways of coping. The medications are different for each person, what works for one doesn't work for someone else. We are all on the merry-go-round of trial and error and it SUCKS!!!Well done for quitting smoking. I know it can't be easy. Keeping to a healthy diet when you quit is really hard and it must be taking a toll on your anxiety and mood/stress. I can only say that it is one day at a time with it all. I quit after almost 20 years. I wasn't a heavy smoker but I relied on them to reduce my stress levels. They were the thing that I went to when I was upset or in a low mood. It has helped with my IBS as nicotine (plus everything else in a cigarette) is really bad for anyone suffering with IBS and/or fibro. Unfortunately it will be a while before you don't want one. Hang in there and be strong. Also try and stay away from sugar as a replacement fix. That's another thing that's an IBS trigger.

ADHD, Autism and Bipolar are similar conditions and explain your social and emotional struggles. They have similar characteristics. You can have one or more of these conditions but I would really push your GP to get a definitive diagnosis if you feel that they are medicating rather than testing you and ruling things out properly. We all deserve better from our medical professionals.

I too was a reasonably active person despite my problems until my fibro was triggered after the birth of my daughter. I could exercise 5+ times a week, Zumba and swimming. I was doing 80 lengths in an hour. Now I have to push myself to do a half hour swim every Monday evening. It is hard to suffer with pain and mental health problems, but there are people out there to support you. You have taken some of the steps yourself, I hope that the members here can help you with the rest.

Best of Luck Koala

Start by doing what is necessary, then do what's possible; and suddenly you are doing the impossible - Saint Francis of Assisi

[groaten]

Kurt

Have you looked at eds, it's rare but the wing span can be a sign, just a thought, I have type 3, only took me 52 years to get too bottom of it,eds society is amazing, I an underactive thyroid, but allergic to thyroxine, treated with armour, it's been a lifesaver. Good luck hope you find answers karen

[Narwhal10]

Hi Kurt,Well done at giving up cigarettes. We’ve got quite a few similar diagnoses.

Do you eat gluten ? apparently none of us can digest it. As you mention IBS. It took 26 years to find out I had coeliac disease !! I’m lactose intolerant.

I’ve a diagnosis of bipolar, fibromyalgia and FND - well I still take my meds for BP but I’ve got pernicious anaemia/vitamin b12 deficiency. Please look at this. I need injections.

When I gave up gluten I didn’t get better I got worse - palmed off again - ended on the neurology ward, with extremely poor coordination of most body parts and tremors. Coeliac disease isn’t on my notes so doctors were clueless. Went to a functional practitioner. They ask how you were born, fed, what childhood illness, antibiotic use the lot. - I had undiagnosed, untreated Small intestinal bacterial overgrowth. It’s a breath test. Had my gut microbiome checked. Costly but written proof to doctors why I can’t absorb magnesium, iron, calcium, copper from food.

There’s something called the gut brain axis. I’m a geek. I don’t know if applicable to you as we’ve all got different DNA, history, exposed to illness.

Best wishes

🐳

[klr31]

Have you had your thyroid checked out?

Karen