[Surferboy]

Hi folks,

I've been away from this site for some time now - I think since the turn of the year.

I just wanted to pop back in again to give you all a bit of an update.

Hmmmmmm! Where do I begin???

Well, I'm pretty certain that my Lupus has got slightly worse since the last time I was in here. I literally have some kind of pain everyday in one place or another. Hence I've not been able to play football at all or go to the gym or swim etc

But I'll be seeing my rhumy next month so may seriously contemplate going onto a dose of steroids.

I did however have a slight subsidence in my fatigue levels back in mid January. I thought this was the path to some kind of remission. Alas this did not last long and the fatigue has reared its ugly head yet again. Not as bad as it was before, but is still there. With this the night sweats too have returned.

A few other new weird symptoms have come too. At night when sleeping I lose complete feeling in the little finger on my left hand. Mouth ulcers every now and then. A creaking neck. And I'm sure there a few more which I can't remember. Oh, add that to the list - forgetfulness

Well, I want to sign off by wishing you all the best of health. I'm trying to keep my chin up, so as hard as it may be please do the same

I'll pop back in here every-so-often to keep up with you guys and girls.

 

[Katharine]

Hi Surferboy,

Good of you to come and give us a little update. It sounds as if, although there are ups and downs, you are gradually getting used to the disease and learning to cope with it. Positive attitude and good mental management of the disease are at least as important as any drugs we might take so well done there.

Other than that al you can do is tell your rheumy how things are and follow his advice.

All the best,
Katharine

 

[karen.w.]

Hi surferboy

lovely to hear from you. I'm sorry to hear you're not feeling too good :sad: I am in 'the same boat' myself at the moment unfortunately.

I agree with you and katharine that a positive attitude really does make a difference have to try and keep smiling :wink2:

good luck with your rheumy appointment and take care of yourself
hugs, karen x

 

[onetay]

surferboy,
Hi I am sure that your doctor will have some answers for you and with some luck some meds to help with some of these problems. I too have some numbing but it is my right leg and I lay on my left side so..., well I would say something to the doctor when you see him or her. At least you had some remission time, no matter how brief it was. We take what we can get when we can get it lol. I hope with your next post you have some reasons for all of the new things going on with you in the mean time good health to you and take care.

 

[lazylegs]

Hi Surferboy,

I am glad to see you had a lessening of symptoms even for a short while. If you listen to your body and rest when needed you might find yourself having more times where you feel better.

When you wake up and your finger feels numb, pay attention to the position it was in. My hands would be in the strangest positions and be either numb or in pain. I found wearing a brace to bed helped.

Take care,
Lazylegs

 

[Surferboy]

Thanks guys for the replies.

Once I went off-line yesterday I remembered something I forgot to mention. Recently I had a couple of lymph nodes removed for biopsy. Still awaiting results. But I know that after the removal the pain (not only where the procedure was - groin) in my elbows, arms and wrists was quite bad.

As for getting in rest - alas I now have a new manager at work who is an absolute pain in the neck!!! He's a play it totally by the book kinda guy and wants to know every minute detail of my health, personal life, appointment details etc. I find this mentally draining more than physical which I think adds to my stress levels, which we all know isn't good for us Lupies!

But I'm hoping to overcome this problem soon ;-)

 

[Katharine]

Hi again,

I don't know what employment laws are in the UK but here at any rate your manager has absolutely no right whatsoever to ask or know anything either about your health or your private life. Of course time off for appointments must be "proved" by a doc's certificate but that's the extent of it.

Katharine