just a quick update; I saw my my rhuemmy yesterday and was ready for a battle to get answers and not to be disbelieved again. I waited an hour over my apt time and surprised to her response! I was firm but not rude and had written my list of all whats happened since I last saw her in march 13 (appts cancelled and changed by hospital) she actually listened and didn't butt in or speak over me or tutt.......she heard me......I sounded like I was reeling off things from the generation game conveyor belt as I knew she would be in a hurry to get rid of me and make up lost time! im surprised that she could understand what I was saying as my speech was slurred and jumbled I explained that I have basically been left on my own as 3 GP's I saw hadn't a clue what lupus was and that I was very angry at waiting 11 months to see her when I had been so poorly.
she agreed and said I can go to the hospital and request an apt with her at reception should this happen again.....shes never offered me that before!
then she said ive fibromyalga (spelt wrong) as the cronic fatigue isn't just lupus as my blood tests have been a steady level and don't indicate a flare?? she gave me 2 steroid jabs in each butt cheek which are sore and bit lumpy today waiting for that to kick in she sent me for an xray to check my heart and lungs as im short of breathe,i see her again in may to get results.
I have posted a q on here reguarding the fibromyalga. she gave me Dekristol (vit D) 20,000units 3 times a week to help with fatigue as I have to avoid the sun all year round as best I can.
she give me Duloxetine for the fatigue,pain and mild anti-depressant for fibromyalga.
I am still in shock that she heard me, believed me and helped me.........I did admit that I don't live I exsist and that im at my lowest and never want another year like last year.
I just wanted to say that I feel an inkling of hope again
fingers crossed the meds work I actually smiled as I left the hospital x
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Mixed feelings for you caninecrazy, pleased that you feel you were taken seriously, and it does seem you were. But it's sad you-have to smile, for this reason too. We are all humans with feelings, and you are not the only person to fear how you will be perceived at a rheumy appt. having to plan it like a military operation is the norm for most of us. After the elation, we all still have to endure this awful condition. So not wanting to 'burst your bubble,' I am pleased for you, it's just sad that we can't leave an appt happy because our suffering will go away. Hope further tests are ok. Take care.
i totally understand what you are saying 6161, yes our rhuemmys should listen and care. I really never have "clicked" with mine and its always been a battle to get answers. I hate lupus and sometimes mourn the old pre-lupus me, but I know its something I have to endure. how are you feeling? x
Well done, now that you have the hang of it the rest of the appointments will run smoothly. Interesting what she said about fibro - I'm tired, my bloods are fine but my rheumatologist doesn't say it is fibro. Maybe we have different symptoms.
Good that you have a proper treatment plan now. When are you starting the meds?
Why ? Did I come across as some sort of 'slit wrist', lol,,,,, I'm actually mourning the wearing off of my depo jab. !!! Had it 2weeks ago. It only lasted 10 days, 8 really if I take off 2 days to kick in. It was brilliant while it lasted. So no, could be better. Am glad for you though, honestly. When I read your post my immediate reaction was, aargh, how lovely. But seconds later I thought, how terrible it all is that a dr who does their job for once, is praised for doing what they should do. My rheumy is good, but she is often observed by students, so I feel my time with her is short, as she spends longer talking to the students about me, rather than to me. I still plan my appt with her as a rule now. Take care.
Isn't it hard to have benefits from treatment for however long and then adjusting back when it wears off? I'm having to do this like you at the mo so I send you hugs!X
6161, I just had my 6 month with Rheumi on Thursday and he had a student with him. I have to admit that I got more information this time than before as he explained my history and symptoms to her like he actually knew who I was. He asked me to explain the initial reasons that I had seen a Rheumi and reminded me of things to explain to her. I have to admit I was impressed that he had actually been listening to me for the past two years - sometimes it does not feel like they are. I saw a different side to him and left with the feeling that we were both on the same path with my treatment. As I told him, I don't care what you want to call it as long as you can hear me and you help.
Thanks chapter, I don't feel neglected regards treatment, my rheumy is good, but the consultation time "for me", is lessened by the student time. Unfortunately most of their exchanges are in medical jargon which I can't follow. My rheumy was trained by prof. Graham Hughes, and she led many of his clinics at st. Thomas's. She now works at my local hospital and because of her expertise in lupus, she is followed by many. I know I can refuse the students but never would as, 1) I worry it would reflect badly on me , and 2) we need her to educate these students and Drs. I think she must give them a quick overall of me before I go in as, I am never asked anything by the students. Thanks for telling me your experience.
You must feel very relieved that your Rheumy has listened to you !. A lot you've had to go through to reach this stage so it is easy to have mixed feelings afterwards ! Specially too as you've got an added condition to cope with! Hope the new treatment helps soon and good luck with the tests. You can't take every consultation for granted sadly so it's best to plan for each one. It works for me!. X
Well done! I write almost everything down (is this an age thing??) but it's the only way to remember what you want to say. Glad you feel that you were heard. That feels good, but as someone else has said, you still have the condition and need to continue to be heard. It must have given your confidence a boost!
I will always be on my guard when ever I see her as she can be unpredicatable with her attitude towards me, although I know shes like that to others as ive recently discovered a friend has lupus and she sees the same rhuemmy.
I feel kind of better that I have an answer for my symtoms, I mean I don't want lupus or fibromyalga but now I know what im up against? sorry im not making much sense am I. I will continue to take one day at a time and pace myself etc. I saw her at one local hospital but they don't have a pharmacy for patients to use so im busing to the other main hospital Monday to get my meds there. lucky ive got £16 for prescription and £12 for 4 buses there and home x
Hi I'm so glad that all went well with your rheummy, I must admit I have a very good one too. I just wanted to share a few points with you about avoiding the sun - and other sources of UV light as I am photosensitive and doing this has improved my symptoms a great deal. I wear fabric thick enough to block UV rays - usually denim or heavy cotton, long sleeves and long trousers all year round and in all weathers. I wear gloves, scarf and cover my head every time I go out - even in the summer. Also I wear a at least a factor fifty sun cream or total sun block on my face. I have had to get rid of all florescent light fittings and never use low energy light bulbs as both of those light sources emit UV light rays which made me worse. I no longer take sunny holidays although it was nice to go on holiday I always felt worse as the UV is reflected and magnified off water and all the white buildings. I have found that there are one or two little local shops that stock the old style light bulbs so while I can still get them I have stocked up. I do however take vitamin D as most people's bodies make this when they are exposed to the sun but as we avoid the sun we can become deficient in it so I take it every day in tablet form along with all the other things I take.
I sincerely hope you are still smiling and that the meds are still working, chin up and keep positive.
Thanks ursi, I have a good supplier who keeps me well stocked up, there are however sites on the internet that sell UV protective clothing which you may be interested in looking at.
thankyou, I will search for the old bulbs as have a few low energy ones indoors. I work under strip lights at work so I cannot totally avoid them but I do feel worse the day after my shifts x
I too use sun block on my face and factor 50+ on my arms. I do wear long trousers most of the time anyway, im looking into getting reactive glasses for the sun? x
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waiting for that to kick in 
she sent me for an xray to check my heart and lungs as im short of breathe,i see her again in may to get results.
So, I saw a specialist yesterday....
Is it fibro though?
Losing my job!
my daughter as got sle lupus and itp blood disorder
