LUPUS UK
21,655 members17,166 posts

The flare is coming to an end

Well guys i told you all I had to see a specialist on the 18th. Biggest waste of time ever and he was the most unhelpful person ive met yet. I wasnt given any pain relief and i was basically told i had to deal with it. I cried as i was unable to walk properly that day because of my knees and he rushed me and never gave me any support to make me feel better. I did one full day of travelling for that appointment and had to stay over night to be there early due to my walking. He told me to take my steroids throughout the day instead of the morning, which is keeping me up till about 3/4am every morning before i finally fall asleep (i have bad insomnia already). The pain is getting less but i am too tired to return to work. I really hope it is coming to an end. Im going to continue exercising and looking after myself and hopefully it will pass. Thank you everyone for their support when it was at its worst, as no doctor/specialist has done anything to help me at all and i never want to experience this again.

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Sounds dreadful did you say anything to the heartless basket!!

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Sorry to hear you've been in pain and were treated like this. I think a lot of us have been there. Speak to your GP about it and ask to be referred to a Pain Management Clinic. See if they can give you anything to combat the insomnia and other side effects of steroids - I went on mood stabilisers as I had roid rage, so hyped up and irritable. Health and happiness for 2018 xx

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I've been on steriods twice for a long time and have been told to take them only in morning, I started with 40mg and had to take them after food, then my omeprazole and calcium, they made me so hyper and jittery but by time night came I was ok. I'd defo go back to gp and discuss your appointment with them. I too had a disappointing appointment a few weeks ago, I didn't see my consultant but a trainee doc, now I know they have to learn, but she told me all my test results were all ok, and didn't know what was wrong with me. I went to my gp, only to be told she wants to repeat the kidney blood test as its not right and I'm needing vitamin d as I'm very low in it. The doc at hospital examined every part of my body, I did wince when she touched the area of my kidneys but she said nothing, I just hope my MCTD not affecting my kidneys, it's been round most of my body. Keeping my fingers crossed it will be back to normal. Good luck with your gp appointment.

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Hi jodziebear

I'm sorry your appointment on 18 th was so unhelpful!. I do wonder if you saw a registrar rather than the Consuktant because of his horrid attitude!. Could you see another Rhrumy for a second opinion?.

I'm glad you feel the flare up is lessening thanks to the steroids!. They are a wonder drug but come with side effects to watch out for!. Hope your taking calcium as well for your bones!. I too take them each day and have been advised to take them all first thing in morning to counteract insomnia problems later!. It does work for me. I do hope you continue to improve . Keep us posted. X

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Jodzibear,

I'm so very sorry, to read of your experience.

Time, and time again, patients are disrespected, as well as found wanting, from their appointments. Yet, each time, I read of another disgraceful experience, such as you had, I feel a mix of emotions. I feel desperately sad, probably, because I have experienced what you did, yet, I feel very annoyed.

Why, oh why, are such medics working in healthcare service!!! Will they ever, be rooted out? We don't want them. We don't need them.

Of course your sleep is being affected, taking steroids throughout the day.

The only things, I could suggest, is that you consider trying, Betteryou Magnesium oil spray, for pain relief? Using this product, has helped me, to cut my pain relief meds down, considerably. Also, if your Vit D levels are low, supplements may be helpful? Read about Vit D being so essential!

As for the person, who treated you abysmally, I can only say, each time I have been mistreated like that, I vent here on HU, I am helped, and I read, read, and read some more.. in so doing, I am given tips, suggestions, advice, that enables me to self care, through much healthier products than prescription meds anyway!!!

I hope you are feeling better, and can put that experience right behind you. Unfortunately, you have met, one of many medics, who aren't worth our time.

Sounds as though, he has no idea of the power of empathy, nor the disease from the patient experience, let alone, the enormous effort we undertake to attend the appointments.

Wishing you a happy, healthier 2018! Be good to yourself. X

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So cruel of that Dr to treat you like that...I am sorry xoxox

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