[LucyOscar]

Yeah what a day!
Does anyone else have any of these? Any helpful hints. They started me on oxycontin and soma (soma makes me feel drunk).

I have to go for a bone scan and MRI soon along with more bloodwork.

Just getting so overwhelming because my "friends" cannot understand that I am either too tired and sore to participate in outtings : mad:

 

[LolaLola]

Hello, I have Lupus, Aps, Fibro and EDS.
I cannot work, and have had to downsize my life a lot.
I have been like this long term. I don't really have any tips but you do have my sympathy.
x Lola

 

[LucyOscar]

thanks you lola

Was starting to think sheesh what is all this stuff I have : ( I pretty much figured it all equals pain.

Reading more and more about all of it. Its so amazing 1 day I am deemed as making it all up and now BOOM! I have a whole slew of wacky things wrong with me.

I have been very kind to myslef lately though and that been a big help.

Hope you had a pain free weekend. Look foward to talking to you more : )

 

[LolaLola]

Glad to have you here Lucy.
My Daughter and Son also have EDS and my Daughter has Lupus. Neither child can really write because of their hands and shoulders, so they are both very versed in computing.

I don't know if you use a laptop, I find it much easier as I get to choose a comfy seat.

I expect like me, you cannot bear being cramped up, where my arms are bad I don't even like people sitting next to me as I feel all squashed. If I go out I try to get an empty chair beside me. Friends are used to it now. They used to think I was staying away from my Husband. What makes it worse is he is a very big chap and even cuddles hurt!

I am sorry your friends don't get the idea, but it is early days.

You will probably find the effects of hormones make your joints worse and more prone to damage just before a period.

Please also remember some exercises are not good for EDS, always take good advice.
X Lola