Newly diagnosed with hypermobility.

[Pud227]

Newly diagnosed but was wondering what everyone's normal is? I'm trying to get used to the pain and fatigue, do any of you get to the stage where you can't think straight because of the fatigue?

[Joanne1972]

Yes, I can't think straight because just to tired, then take medication and can't think straight because of the medication and then the pain still there so can't think straight because of the pain.

Don't think I've 'thinked' straight for the past 10 years!

If it's something important I need to think about, when my brain stops working I usually walk away n do something else......just remember to leave what was important in plain sight so you remember to go back to it, good ideas usually pop into my head when not trying to think to much n doing something else

As for when I'm doing just everyday things n can't think straight I usually try n make light of it n see the funny side......if I can think of one!

Jo

[Pud227 in reply to Joanne1972]

Thank you.

[DISC]

Hypermobility/EDS3 is tough. it takes over everything, moving, sleeping, resting etc. If you relax, joints move and get painful, but if you move and keep busy, you then pay for the efforts afterwards. Keeping joints in position is like holding your skeleton together by being tense all day and that is exhausting. Sleeping is tough because as soon as you fall to sleep your joonts relax and move and can subluxate.... so what to do? Heat patches help. Getting adequate pain relife will not take away the pain, as I have tried everything and the pain NEVER goes BUT you can take the dge off with things like Morphine Butrans pain patches, paracetamol, oramorph and also getting supports for any part of your body is essential. Get a refferal to a good OT who will sort you out with things like a pressure relief mattress, seat, neck brace, hand support and aids for sleeping and walking. Talk about how you feel with a pain counsellor, and get to see the Pain Clinic in your area. Physion doesn;t really help if you are a active or mobiole person anyway. Keeping busy helps to take your mind off the pain but sadle it is about managaemnt and gritting your teeth. Fatigue is a huge probelm though I agree. I wish you well. Take care!

[Pud227 in reply to DISC]

Thank you, you have summed it up precisely.

[Diamo]

I have chronic regional pain syndrome and psoriatic arthritis when I was first diagnosed I suffered with fatigue and I didn't get used to it thankfully I don't suffer too much these days I would go and see your doctor and ask for some blood tests maybe should check for a reason why u r suffering with fatigue hope you get sorted its not nice feeling the way u do good luck darling

[Pud227 in reply to Diamo]

Thank you, I've had all the blood tests available, I've got another appointment with rheumatologist who thinks I have chronic fatigue syndrome too.