The Lupus Forum banner
1 - 3 of 3 Posts

· Registered
Joined
·
40 Posts
Discussion Starter · #1 ·
Hi everyone,

I had my first rheumy apointment, (had been diagnosed by dermo already for discoid lupus of scalp.) and wanted to let you know how I got on.

The dermo was a very nice young lady and I feel I was blessed!

She asked me why I was there I explained the painfull joints on and off for numerous years. She manipulated each joint and naturally enough I had no pain in any of them except finger.

Told her about recurrent anemia, she said women our age get that a lot if we have heavy pre menapause periods.

Told her about mouth sores and fatigue.

After checking out my joints she asked me to explain exactly where the pain that I felt was, then she started to prod my muscles and tissues and that is when the penny dropped. My neck, shoulders, upper arms, lower arms, upper chest, thighs, lower legs, and ankles were all very tender and sore to touch.

She asked me about sleep, told her it it was very disturbed due to pain.
I also cant bear anybody giving me any sort of nudge or elbowing me.

So she reckons it fibromyalgia, I am not surprised, I have read a good bit about it on this site and already had suspected that it might be so. She has prescribed Tramadol for the pain and sugested a mild sedative? which I declined for the moment.

She very kindly read out my blood tests which had been done in January by dermo. Kidney and liver function fine, cholestrol and glucose fine and iron levels back to normal after taking iron. I have a positive ANA and elevated ESR ( think she said 40, Im stupid I didnt jot it down.) She wanted to repeat ESR but I have a viral infection and she sugested it would be better to wait until its gone. So I will go in later and do it, She requested a blood test (for muscle function, cant remember the name, and blood test to check the thyroid again, am underactive on meds. so we need to see if pain could be caused by this.

Got blood pressure checked, fine, and had x-rays on feet and hands done.

I asked her if she thought that the lupus could be systemic, she said that with the list of symptoms it could be but we had far to go yet!

I was there for almost three hours, and really felt well looked after, not rushed, and felt very happy with the outcome of my first visit, even if I now have fibromyalgia, at least I now know what it is and can start to treat it. She did stress the importance of exercise,. She gave me a voltarol gel for my poor finger also. Next apointment 6 months. Have a dermo apointment in a week anyway so will think of more questions to torment them with.

Overall I came out very happy, I understand that it is a long process and a bit of a mystery so I have the patients as long as I dont get any worse.

Thanks for listening and for the support that you all give.

Hugs to you all,

Primrose:posy:
 

· Registered
Joined
·
40 Posts
Discussion Starter · #4 ·
Hi,

Thanks for the replies, forgot to mention that she sugested that we should give the plaquenil more time to kick in before trying any other meds.

I think that it may have been amitriplyline she said and a mild dose.

As I work shift work I am afraid to take anything that will chill me out too much as I wont wake up. I need to be able to wake up at 3am, 4am, 5am, etc depending on what shift I am on.

Always found a glass of wine with dinner very relaxing, runs right down to my toes! but with the tramadol will have to knock it on the head. Must find out why alcohol should be avoided with these. Doctor sugested taking Tramodol for a week and see how I get on started yesterday and woke up feeling worse, shoulder and neck pain, and leg pain before falling asleep. I seem to have a lot of night sweats but no elevated temperature.

Joan do you suffer a lot with your fibro?:( What meds are you on?

I am going to make an effort to get more excercise, wish there was 48 hours in the day, swimming is supposed to be very good. I need to get down to time management but its very hard at the moment as my 83 year old dad is very ill at the moment and I have spent the last 4 months visiting him in three different hospitals, he is now in a nursing home and will never return home, its all very stressfull. He now has a virus on top of everything else and is in isolation, I still go into him though and am constantly plagued by by one virus or other myself. I havent been in for 5 days and feel so guilty, am going in today after work.

Sorry about the rant!

Primrose:hyper:
 

· Registered
Joined
·
40 Posts
Discussion Starter · #7 ·
:foryou: Hi,

Thank you all so much for your help and advice, it is indespensable and so usefull for my apointments, its so important to educate ourselves so we can be well armed.

Joan I am so sorry about your Dad, it must have been a a hard time for you also, they are so vunerable and helpless, its heart breaking to see, when we remember the strong men that they were.

Thanks again,
 
1 - 3 of 3 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top