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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:
 

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Wow, that sounds like a very fruitful appointment :) It is so good to know they exist (and in Ireland??) :lol:

It's so wonderful when somebody listens and doesn't try insinuating it's in your head.

Katharine
 

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Excellent appointment Primrose! :)

You really found a good one there. Prepared to listen and discuss things rationally with you. She sounds like a very sensible doctor :)

I also have fibromyalgia so I can sympathise with you on the body pain :hug: Oddly enough my left wedding ring finger is always very sore! I wonder which of your fingers is the sore one :hehe:

What sedative did she suggest? Amitriptyline? Certainly if you feel you dont need it then of course dont take it. It does help with the sleep issues though. Unfortunately it didnt suit me. I tried it and it had the opposite effect! Kept me awake for hours on end but everyone is different and some people have responded very well to it. If you do decide to try it check in here for info on possible side effects, etc particularly at the beginning of taking it.

Best of luck with the tormenting of the dermy next week! :wink2:

Take good care
Joan:rose:
 

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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:
 

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Hello Primrose
I agree that was an excellent appointment. :) I am sure you will work out the best way to take your meds.

There often isn't a big difference between systemic and discoid. It seems clear that you do have a degree of systemic involvement but as long as you are thoroughly checked regularly for signs of greater involvement. I don't know what the doc means by a long way to go. With a bit of luck and effective meds your symptoms will diminish.
The Plaquenil should be clearly helping with the discoid within a couple of months. If it isn't then ask the dermy about adding the Mepacrine which Joan has discovered is available in Ireland. The two together can have a fantastic effect on skin, joints, fatigue levels as well as general disease modification. You should be getting the best there is as soon as possible so you can have the best possible quality of life so don't let them brush you off. It is not their lives.
I am very sorry about your dad

All the best

Clare
 

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Hi again Primrose

Im afraid Tramadol and alcohol definitely dont mix. It can cause a dangerous decrease in your breathing.

http://www.drugs.com/tramadol.html

Also be careful when you start taking it as it can cause drowsiness and impair driving, etc. Mostly this is an affect that your body adjusts to after a short while but you would be best to start taking this when you know you have a couple of days off work, etc.

At the moment I dont take anything specifically for my fibro (except pain relief - Solpodol and Zydol - when necessary). My fibro is pretty good at the moment. Im not in a lot of body pain but it does flare up now and again and thats when I take to the pain killers. There is a drug called Lyrica which is now prescribed specifically for fibro and has been approved as such by the FDA. If you decide to try the Amitriptyline, again make sure you have a few days off work when you can judge how it is affecting you. There is no doubt that it makes you drowsy for the first few doses so I can understand your reluctance given your shift work situation. Also if the dose she is suggesting is 25mg then start off splitting the tablet (12.5mg) and give it a chance to slowly work its way into your system. This will minimise the possible side effects.

I also use a variety of things to help with the pain. I have some heat pads that you can buy in a pharmacy and they last for up to eight hours. You stick them on the part of your body you want relief and they work wonders! A little bit expensive though if you use a lot of them. I also use things like rice bags. I make up an old nylon stocking and put dried rice into it and tie it off. You can heat this in the microwave and they give off lovely, warm, soothing heat (although usually only for about 15/20 minutes or so). Still, you can stick it back in again and re-heat! Make sure the rice doesnt get wet or it will start cooking! You can use these again and again.

I also have Difene gel which I can rub on and this helps a bit with pain. You could ask her about this next time you see her.

Im also sorry to hear about your Dad. Believe it or not I was in an almost identical situation recently in which my 83 year old Dad was taken into hospital and was told that he could no longer live on his own. It was devastating for him and us. He passed away a week after his 84th birthday in January this year. I understand the stresses you are under right now:hugbetter: I hope you have a good visit today with him.

Take good care
Joan:rose:
 

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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,
 
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