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  The Chatter Box : Blathering On
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A Moan by Spursfan on 14 August 2008 5:54pm
Can I have a bit of a moan please?

I know I will regret this self-indulgence tomorrow or maybe even later tonight, but I need a 'virtual' hug from my 'virtual' friends.

And it IS self-indulgent. I don't normally say anything about this illness (Dermatomyositis) which I have had for 13 years, and for which muscle pain and weakness is the norm.

But the last two days/nights my legs have been aching so much I have hardly slept. Basically I don't know what to do with them.

I apologise for this weakness - it won't happen again but really it has got on top of me these past couple of days.

I don't see my consultant until Sept (I see him every 12 weeks) - hopefully it will ease off.

I'll shut up now...

Re: A Moan by perfectbitch on 14 August 2008 6:07pm
And the rub is that the less sleep you get, the harder it is to cope with pain or in my case, almost anything. Of course you can have a moan - what would we become if we couldn't be there for each other. Hope it eases soon,

Re: A Moan by canaveralgumby on 14 August 2008 6:10pm
You are right to lean on your friends and virtual friends when these things occur. I have MS. I am often too proud and stubborn to let anyone know how poorly I'm feeling, then I resent them for not being more understanding. I mean, they can't read minds!

Ask your consultant about the drug Neurontin (generic name Gabapentin). This has helped me more than anything else. I don't know if you'd be a candidate for it, but it's worth asking. Neurontin helps to circumvent nerve pain.

Get a leg massage if you can.

Sending a hug - Cori

Re: A Moan by tucsonmike on 14 August 2008 7:25pm
Feel better Anne. No apologies needed.
Re: A Moan by elina on 14 August 2008 7:34pm
Lots and lots of hugs, Anne!
Re: A Moan by Spursfan on 14 August 2008 7:55pm
Thank you everyone for your support - amazing how much it helps, if not physically, mentally.

Cori - I knew about your MS which is one reason I was ashamed of my whinging. I am on Methotrexate - my consultant knows I HATE steroids and so avoids them thank goodness. However if it gets bad he has no choice than to give me a short sharp burst of them. Yuk! I'll ask him about the Neurontin, though it is muscle rather than nerve pain.

I know what you mean about not saying anything. I haven't said anything to the husband !! And I never mention it to my chums unless they ask me about it.
The double whammy with DM is that because there is a rash involved (thankfully not active in me at the moment) which is similar to the Lupus one, you look healthy because you have a rosy glow! I have had people say I look really well when I am in the middle of a flare!!

There are so many who are worse off than me, even with the same illness. I know of one lady who has been in hospital for the past 5 months or so, most of them on a ventilator, and who is looking at another couple of months at least before she 'gets out'. She has just yesterday had a wheelchair so for the first time she is able to see other things than the four walls of the high dependency ward!

Thanks again guys.


Re: A Moan by peripatetically on 14 August 2008 11:09pm
I know how you feel about trying not to talk about it much. Chronic illness is no fun and you think people get sick of hearing about it. That's how I feel a times. And I also am sick of hearing myself talk about, so i keep it inside most of the time or downplay it. There are times when you just can't help yourself though. So no apologies needed d, Anne. Just feel better soon.
Re: A Moan by canaveralgumby on 14 August 2008 11:22pm
Ha ha! Yes, there is always someone worse off then you. No matter who you are and what the problem is, there is someone who's got it worse. So even thinking in those terms is not valid. You have a disease or whatever you wish to call it, and you DON'T have to feel GUILTY about having it.

I know what it's like. I feel like I perform a balancing act between not telling the people close to me that I have a gadzillion symptoms all the time, but then not telling them ENOUGH. I don't know what that balance is, so I just do the best I can and let the chips fall.

Generally, aren't your friends and family supportive? So you must not be a total drag, right? :^)

Re: A Moan by TERRY S on 15 August 2008 12:13am
Awwww! You can have all the hugs you like. I've got plenty! Chin up!
Re: A Moan by kazzzz on 15 August 2008 12:09pm
Sorry you're feeling below par Anne. All I can offer is a hug and a Creme Egg poultice:)
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