30 day chronic illness challenge

Day 01:

I have Asthma, Psoriasis, IBS (possible IBD), occasional bouts of Ecsma, Joint Hypermobility Syndrome/Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.

I've had Asthma all my life, same for JHS though that's been causing me problems recently which encouraged me to get it officially diagnosed.

IBS developed over the last few years and now there's a possibility I have IBD which I'm seeing a specialist for. No-one took me seriously when I was literally internally bleeding and had to go to hospital the first time. It makes me so ill. I'm really confident that I have Ulcerative Colitus. I was referred by the hospital for a specialist but they never referred me so after the 4th doctor and nearly a year later, I've been referred again but I had to endure a second episode whilst in work (the first one was when I was on holiday with my college!). I'm still waiting to see a specialist.

I've had POTs for a few years and got it diagnosed this year as I was getting the official diagnosis for EDS/JHS.

Psoriasis on my scalp started in the last few years.

BUMP! For everyone who don't know about it. I'd like to see people actually writing here. You can bookmark it, or copy and paste the link of this thread in your personal notes.

Hey, fellow spoonies!

I am Erika. I have fibromyalgia, PCOS, POTS, CRPS, and an array of other problems. I've struggled with these illnesses since I was 13. (Except with PCOS, I've had that since I was 11).

I've done this journey without parental support, and I am a wholehearted advocate for kids like me who are poor and have chronic pain.

Day 02:

My psoriasis affects my life as in, it causes embarrassment, pain and discomfort. Treatment can be incredibly painful. It causes dandruff which makes you look unclean when you're actually very clean. It causes a really bad dandruff problem so some days, I can't wear dark colours. I'm having a bit of a flare up today.

I had a POTs flare up yesterday in work. My limbs were very weak, shaky and tingly. I was light headed and dizzy. My temperature kept going up high, then going down repeatedly as my body was trying to regulate my blood pressure. It made me feel very tired and unwell. Almost every day, I go blind at least once when I get up and go very light headed. I'm used to it now though.

JHS/EDS causes my joints to click and joult every day. I get joint pain and aches and my muscles ache. I'm more likely to have subluxations and dislocations which has happened to me. Subluxations happen when I swim. My wrist pulls apart a lot, when sweeping or pulling on my car's hand brake. It pulled apart hugely when I picked up a weight in the gym and there was nothing I could do! I'm prone to tendonitis which is absolute agony and debilitating for at least a week.

Asthma and excma doesn't affect me too much every day.

Can I get in on this?

Day 1:

Hello! I am MonBon. I have had migraines for as long as I can remember. One of my first distinct thoughts was "if I distract myself, it doesn't hurt as much." For me, they form in my sleep. So I'll wake up in the morning, there's a headache. Throughout the day, it gets gradually worse, but if I'm lucky I can get to sleep and then it resets in the morning. If I'm unlucky, it gets too bad to sleep, which led to major insomnia as I got older.

You are not alone, there are others here who know what you're going through.

Some forum team tags to bring back some action for this: @JoyIntoDarkness @AffyAvo @Dillion @Nazeera @ArmyWife09 @peacefulSoul8

All welcome to post! I want to hear your stories :)

Day 1:

Hello, my name is Dillion. I have been living with chronic migraines for going on two years now. The severity of the migraines can get so bad that sometimes I almost pass out. We (being my neurologist and myself) have tried several ways to prevent them but no luck yet, so I am on a medication that stops them after they have already started. Living with migraines is difficult, you don't know when you will get an attack, you don't know if you will have your medicine along with you (unless you take it everywhere) which can seem a bit odd to people. I hope that one day we find a medication or remedy that gets rid of chronic migraines, instead of just making them go away.

Reminder & invite tag for those who are already in this awesome 30 day challenge:@affyavo @JoyintoDarkness @Rycochet @Silentserenityy @elle22 @Wonderfulmagic99 @Incrediblexile @armywife09 @Peacefulsoul8 @Nazeera @Monbon @Mythologicalmayhem

I did something like this in the feed before, and that info was lost, so I'll give this one a go.

Day 1

Hereditary angioedema (HAE) - had since birth, had at least one attack at a very young age and likely had others, but it's impossible to state with certainty now what caused the symptoms.

Asthma and allergies - From a very young age

Kidney issues - born with them

Skin issues - various diagnoses, I was born with skin issues and some of the problems appeared later

Menstrual problems and issues related to hormones - not a specific diagnosis, started as a preteen

Joint & soft tissue issues - these come and go. I know I have issues with my feet, I suspect HAE had a fair bit to do with other pain that was never fully explained.

Nasal Polyps - diagnosed in my late teens, most likely had them well before

Migraines - as a pre-teen, I'm confused how many were actually migraines though

Nervous system problems - mid 20s. Never got an official diagnosis.

Hypertension - late 20s

Day 03;

I simply decided that I wanted to find out what was wrong with me, even if it meant winding doctors up or sounding like a hypochondriac. I wanted an actual diagnosis so I know what exactly is going on in my body and how to look after it according to my conditions. I was fed up of not feeling my age. I always felt tired and didn't want to do much and I knew I had joint issues which resulted in an official JHS diagnosis but I got diagnosed with POTs whilst they were looking into JHS.

I'm still due to see a geneticist for the first time and to see a useless rheumatologist again who assumes I think I'm dying because I'm just adamant on getting the correct diagnosis.

I have to see a gastroentorologist which will hopefully give me some answers to my supposed IBD bouts so that's not yet diagnosed.

I'm seeing a POTs specialist tomorrow though - it seems to be getting worse as I've gotten older. I can no longer exercise like I used to.

Day 2: How have these illnesses affected your life?

⍣My migraines have made me a more healthy person, strangely. Eating regularly, staying hydrated, and sleeping regularly is a must, otherwise the migraines are exacerbated.

⍣My migraines have made doing well in school difficult -- but not impossible. I have overcome most (but unfortunately, not all) of these trials.

⍣My migraines have made me distrustful of my willpower and afraid I will overdose in an attempt to stop the pain.

⍣My migraines have made me understanding of invisible pain in others.

My name is Jessica and I have low levels/medium levels of Fibromyalgia. I got diagnosed with it in September 2013 but I think I have had it for longer.