taking the right approach. : So I felt that the... - LUPUS UK

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taking the right approach.

seanto profile image
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So I felt that the Rhemotologiy where not doing anything to help me even when I went back too see them when I got worse. They keep using my blood work as a reason to not help as it wont give them the answers they want. This lead me to take the matter up with my gp who was unsure what they are doing and was told he was going to contact the hospital. When chasing this up I was told to contact the hospital myself, who have said the course of action they are taking is for me to see the consultant again and have popped an appointment in the post. Now Im a bit unsure how to bring up the fact that they are not helping me without wanting to come across as being rude. So I was just wondering if there where any tips or sugesstions, ect on how to deal with this.  

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seanto
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creaky profile image
creaky

Hi, I can really relate to your post. I was in a simular position as you.

My lupus symptoms were getting worse and I was in considerable pain, my consultant just kept telling me that my bloods showed that my lupus was under control. He blamed my ongoing pain on chronic nerve pain, and referred me to a pain clinic.

It was my orthopaedic surgeon who said that in his opinion if I was in pain then this should be taken into consideration,  he made it very clear that he felt I should seek a 2nd opinion, he also wrote to my gp. 

When I saw the new rheumatologist he immediately increased my medication,  and then changed it as he felt it still wasn't helping, he also gives me a long citing steroid injection when I see he which helps alot.

In answer to your question, tell the doctor how you feel, if he does not help ask your Gp to refer you for a 2nd opinion. You only live this life once, don't spend it suffering quietly. 

I'm now in less pain overall,  since crippled by tiredness. 

seanto profile image
seanto in reply to creaky

thanks for the reply. It feels somewhat good to know i'm not the only one with this problem. Though im sorry you had to go through that. 

my rheumatologist has yet to give me an official lupus diagnose. He keeps telling me and the gp that he thinks I have lupus as I have a lot of the symptoms but my bloods wont give him the answers he wants to back that up. So all he does is give me pain meds and says he will keep me under his clinic in case i get to a point where he can help me which apparently isn't my current state.   So I hope to be able to somehow be able to get across that he isnt helping me when he should be as I want to travel over the summer whilst I still can. It just with my current symptoms I can't seem manage more than a day or two away as I figured out with a trip I went on in march. 

Barnclown profile image
Barnclown in reply to creaky

GRRRREAT reply, creaky.  I've also had good experiences managing my negotiations with rheumatology in the way you've described

👍👏🌟🍀 coco

creaky profile image
creaky in reply to Barnclown

creaky profile image
creaky

Sorry about the poor typing, very tired, fat thumbs, and crazy autocorrect! 

Seanto,  the bottom line is, it's your life and your health, regardless of your diagnosis,  you have the right to have a say, so if you are not happy, be brave and act 

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