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Determined radiographer
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Discussion Starter #1
Hi there,

I am not completely new here, but I only posted for a short while.

I have recently been diagnosed with undifferentiated Connective Tissue Disease. I am on plaquenil and the rheumy is treating me for lupus, even though she doesn't want to name it as such yet. My blood results were ANA positive, RF positive and one other I can't remember the name of positive!
They have ruled out RA, following x rays and bone scans, but with all my other symptoms she is almost positive it is Lupus.

I just wish I didn't feel so tired all the time, it really get's me down. I have two little ones, my son is 4 and my daughter is 3, and I just want to run around with them and I can't due to the pain in my joints:worried:

I just hope I get more results from the plaquenil, as all they have done so far is made me feel sick!

Anyway, sorry to arrive and moan!!

Love Lisa
xxx
 

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Hello Lisa,
Be patient I am sure the Plaquenil will help.
It is very hard being in pain when your children are so small. Welcome here!
X Lola
 

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Hi Lisa

Im very glad that at last you are getting answers for all the symptoms you have had. How long are you on the Plaquenil? Thats a shame that you are feeling so sick with it:worried: It may be that your system needs time to adjust to it. It can take quite a while for this drug to take effect - anywhere from three to nine months seems to be the norm. If its making you so sick you should let your rheumatologist know about this as he/she might be able to give you some anti nausea medication in the meantime.

Loads of empathy on the tiredness.. I have an eight year old so I have a little idea of what it must be like trying to cope with two little ones and feeling so tired all the time :hugbetter:

The best advice I can give you is to try and take whatever opportunities you can to nap and rest. Fatigue is my biggest problem next to overall pain levels. I often wake up in the morning and have to really dig deep to 'peel' myself off the bed. I dont know your home circumstances but if there is any opportunity for anyone to help out now and then dont hesitate to ask!
Even knowing that there might be one evening a week where someone can mind the kids while you get a few hours sleep can help an awful lot.

Another good tip is to plan some 'bedroom' fun with the kids. Things like inventing games they can play within the confines of your bedroom - like pretending they are camping out (getting them a 'packed lunch' for example) or anything that comes to mind that keeps them engaged and you horizontal. Keep a special toy box that can only be used when you are in bed and they are playing around you. Invent a name for those 'special' days. Make a big deal of it and they will come to love those days. :)

Its early days yet for you Lisa and I'm sure you are finding this very hard to come to terms with. We will try and help all we can. Can I also suggest that if you haven't got life assurance sorted out that you do it now. Its not that I think you will need it any sooner than most of us by the way.... its just that once you get an SLE diagnosis then life assurance possibilities go out the window.

Looking forward to hearing more from you
Take good care
Joan:rose:
 

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Determined radiographer
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36 Posts
Discussion Starter #4
Thanks

Hi there,

Thanks for all the advice Joan, I really appreciate it! I love the bedroom idea, I will try that!

I don't know if anyone else has the same problem as me, but I feel like those who are close to me, and love me, don't seem to get how tired I actually feel?

It is like they are kinda suggesting I am lazy and need to do more......my hubby get's cross on times cos I have fallen asleep in the day. I don't mean that he or any of the others in my family aren't wonderful, they are most of the time, it is just difficult to get them to fully understand what I am feeling.

I am also struggling to come to terms with the fact that this isn't a temporary thing and I have it for the rest of my life:sad:

Oh well, as I said thanks again for all the support, hope to chat again soon.

Love Lisa
 

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Hi All'

Lisylou,
am gald you have been able to start some treatment now and it sounds as if your rheumy was quite good.

I really empathise with your feelings about your children, i have 5 and feel guilty most of the time because i feel so awful, they are good though and used to me being ill as i have had tye 1 diabetes aswell for 28yrs.

I really hope the meds start helping soon and things improve for you.
Good luck to you and your family!!

Cassie.x
 

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Hi Lisylou,


I was diagnosed with the same as you in November last year, I'm on Plaquenil too and had my 2nd rhuemy appointment last week. I have a 3 and 7 year old so know how you feel with regards to guilt. The plaquenil is def. helping with pain levels but nothing is helping the fatigue! The rhuemy was very dismissive of this and basically her parting shot was "keep going with the plaquenil I think you'll get more mileage out of it yet" so I'm back in August and can only hope that the tablets kick in even more...

When I was ill in the summer last year my health visitor had a good idea for keeping the kids entertained, a 'special box each'. I use it all the time now and its not expensive to keep topped up. I bought a couple of the fold up boxes with lids which they added their names and stickers to, some colouring pencils, craft bits and books and any other £1 or less toys that I could buy and a few sweeties, I spent £10 including the boxes and fill it up as they get through things. If I'm feeling tired the kids are allowed to get something from the box and play in the lounge with me sat on the settee. It does work and they don't mind me just commenting from a distance as we're all in the same room. She also told me to not feel guilty about putting the tv on and letting them veg for a bit whilst I rested.

HTH's and good luck.

Beebee
 

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Hi

I also have UCTD, thought most likely to be lupus. I am taking azathioprine as I also have psoriatic arthritis and my rheumatologist thought that this would probably be the best way of treating both of these conditions. I also take pednisalone. I empathise with the tiredness and have found taking an hour to rest each afternoon is really the only way of combating this. I have had the condition for several years now, and at first like yourself people could not understand how tiredI was getting and thought i was lazy. Fortuneately after many years of explaining the situation to them they now seem to understand and see my resting really as big a part of my treatment as the drugs that I take. Hope things become a bit better soon.
 

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Hi Lisa, and welcome back. I know what you mean by trying to get your head wrapped around the idea that you might ( or do ) have Lupus. That
was the very hardest thing for me. I see that you are on Plaquinel, that's great. It is supposed to work in 3-6 months. On me it took nine months, and on other lupies her, it took less. We are all the same , and we are all different. We are here to help and support you with anything you need.
Just ask away, and we will be here. be well.
 

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Determined radiographer
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36 Posts
Discussion Starter #9
Thank you!!

I just want to thank you for all your kind words, I really don't know what I would do without my online friends! I have a message board for ladies and the support I receive from them and now you is amazing!

I am feeling pretty good at the moment, other than the fatigue, but the joints are pretty good, so I am just enjoying a peaceful time

Thanks again

Lisa
xxx
 
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