Horrendous 2 months 😢 SLE ITP and more! : Hi I haven’t... - NRAS

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Horrendous 2 months 😢 SLE ITP and more!

Hi I haven’t posted for a while 🙄 I am going through the worst 2months I’ve had for a long time, started out with a rush to a&e with suspected heart attack which it wasn’t thank goodness, I was having a lot of pain in my right side and it was travelling to my chest,shoulder and neck left side, went to see heamo on mon good news platelets were holding there own, that eve I got a phone call from my gp, my liver function results were off the chart ‘something seriously wrong’ had to have urgent scan and more bloods done, referral to liver team! Pain still severe, started with knee pain which engulfed the whole if my leg couldn’t walk, sleep, shower properly, this went in for three weeks no diagnosis just increased longtec, joint pain every where ensued rash erupted all my arms chest back head, very aggressive, by this time I realised I was in a major flare but had to wait two weeks to see rheumy, platelets now have dropped massively, my hair is falling out and I am struggling to keep my head above water, I feel absolutely exhausted but can’t sleep, had second lot of scans scans waiting for results saw rheumy yesterday, who confirmed my thought about the flare, had skin cells removed from my arms for testing, more blood tests, and now starting methotrexate 7.5mg and folic acid 5mg once a week, I also take hydroxy 200mg twice a day and a massive cocktail of pain killers that’s not touching me, I feel relieved that someone is listening to me and something was going to be done to help me at last! To top it all received my pip application through the post which is stressing me out , when is it going to end😱 I’m sorry to go on I just needed to vent my feelings to people who understand, I feel very broken just now, but there are people who are a lot worse off than me so trying to keep positive Thanks for listening guys stay happy and healthy 😊 xh

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A vent is what is required. This disease is so difficult.

PIP......... what can I say. It’s just not designed for RA suffers the questions are irrelevant because we have FLARES which knock us side ways and the assessors just don’t understand stand. Go into this thinking I’m not expecting much and I’m definitely going to have to appeal then you won’t be so stressed. This seems to be the case for most people including myself. I think most people tend to get pip after an appeal .

Hang in there . Let’s hope it passes quickly

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Thank you for reading my very long rant 😊 I will certainly do my best x

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Rant away in safety, it's good to get rid of all the rubbish. Hopefully things will settle soon for you.

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Ohh Manclady that all is far too much for anyone's brain and body to cope with in a short space of time. All here all got your back in positivity and understanding. x

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Good to get it all off your chest. I hope they get your liver function back to normal soon, and all the rest also begins to resolve.

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Rant all you need too! Better out than in.

Sending you positive and swift healing.

Try not to stress too much as RA loves our stress. Take stock and breathe. 😌

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You go on all you like darling we all understand where your coming from as we have been there with some worse than others,but the pain is still pain, Gentle hugs coming your way.xxx

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Ah bless you. I’ve just been through a flare which I’ve not had in a long time. I have a small leg ulcer on my ankle so had to come off my biologics 😫 Been off them since March so life’s been hard with the RA. Can’t go back on them until Ulcer completely heals. It sucks but I understand why I can’t be on it. I’m so sorry you are having an horrendous time. Mine is nothing compared to what you’re going through. I hope you get sorted ASAP. Sending hugs xx

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Love and strength sent to you x

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