Rheumie appointment today, waste of time!?

[Swizzle14]

45 mins late but expected that. Was in and out in 8 mins! New consultant and not seen a consultant for over 12 months due to seeing nurse.

Asked me a few questions, looked at my hands and listened to my chest, told I would be reffered for a heart scan and breathing tests.

Felt rushed and came away with no blood test monitoring forms, have a test every 3 months as I'm on Azathroprine, also forgot to ask about flu/pneumococcal jab!. Might have felt better if waiting room was full but it was nearly empty.

She did not seem interested in the crippling fatigue I suffer or the fact my brain is fried and the fact that despite taking loads of drugs at 43 I feel more like 83! And I'm struggling to cope day to day.

Sorry for the rant, I came home and cried

[Purpletop]

It's probably because she can't do much about the fatigue but she can send you to have further tests which she will probably discuss next time. I'm sure she had a good plan in mind for your care, it is probably not one that understands what bed side manner is!

Look on the positive side - you now have referrals to further testing. This means that she is thorough about you being checked properly. As for the flu etc vaccination, your GP can organise that or answer questions you might have. As for the blood tests, we all forget stuff when we go to a consultation, so don't feel so let down. It may have been a rushed one but you got concrete steps out of it. Next time it will be a more detailed one because your test results would be back. And you'll be prepared and tell her not to move so fast!

[Swizzle14 in reply to Purpletop]

Thank you Purpletop, my Gp is not much good and when I went to her with increased nerve pain she just said I'll increase it to the max dose and you can discuss it with the Consultant, didn't get a chance.

I have had a Lupus test which was negative and have been Dx with Raynards and Undifferential conective tissue disease.

I have crippling fatigue, can't get out of bed unless someone helps me, I need help putting my undies on and have given up wearing clothes with fasteners. I have ulsers in my mouth, my hair is falling out, my brain has gone to mush, I get my words mixed up when I speak, my co ordination and motor skills are shot. I can't stand for long or walk far even then it's not in a straight line! After seeing an add on tv my 11 at the time asked me if I had dementia!

Sorry to mumble on, yes I know she has ordered testes and that's a good thing, if a little scary, but I would like my life back please.

[Purpletop in reply to Swizzle14]

So have you been given any specific medication for the UCTD? Hydroxycloroquine tends to improve the fatigue after 3 months of using it. The other symptoms need some immunosuppression - you can't live your life like this. It is so frustrating to deal with people who ignore us, I don't know about you but I feel like shaking them when they aren't listening!

[lynnch]

Try not to feel alone as it sounds very like my senario I feel that way every time I get seen so much pain so little empathy or help just more or different pills swizzle 14 chin up

[Swizzle14]

I was given Hydroxychloroquine for about 6 months and was starting to feel better but was then told I could no longer take it as it was interacting with my Lyrica and Carbamazepine and making me too confused. I was then put on Azathioprine, I do not feel any better but I have been told that my blood work is nearly back to normal. I have been on it since November.

My Gp means well but admits she knows nothing about it but gives me drugs to help with my symptoms, but her thinking is she has reffered me to see a Consultant who will be able to help me. I am seeing her next week for a drug review. I have pain in my feet, which I have been told is nerve pain and a pain in the top of my left arm- I did have total numbness in this arm for 6 months, but agin did not get chance to discuss this with the consultant.

Will anyone ever listen to me? I will take the list I had for the consultant with me to the Gp

Thanks