I am wondering if someone might be able to help me pinpoint this symptom, as I am not sure if it is ME / CFS, OI or another issue, or a bit of all three!
When standing or sitting for any length of time I start to get a very intense pain in my back, which, if I stay upright, spreads through my middle, sometimes right to the front in my stomach, although definitely connected to my back. When standing still for a while this intense pain also spreads to my hips, and my legs get heavy and stiff when I try and walk. I have only been ill for a couple of years and this is a fairly new symptom.
I have had back trouble in the past so I am trying to determine if this is actually a back problem. The main clue that it's a CFS / OI symptom though is that the minute I manage to lie horizontally with my legs up the pain disappears. I can't pinpoint it in a particular joint or muscle either, it's a kind of internal pain which, if left, eventually brings me to tears with its intensity.
Anyone else have anything like this and is it associated with OI or ME / CFS? I also have very low blood pressure and a slow heart rate.
Hi Scarlett - sorry to hear about your symptom, it sounds very painful indeed!
It doesn't sound like any of the symptoms that I've heard about in relation to either OI or ME/CFS, though I'm no expert. OI symptoms, apart from fatigue coming on quickly when standing, include things like light-headedness, feeling dizzy, palpitations and that sort of stuff. ME/CFS symptoms include muscle and joint pain, ditto fibromyalgia. But what you're describing sounds more to me like back trouble.
Many years ago, I had back trouble and read a book for patients that explained that if you have back problems, you can feel the pain also in your legs if it goes on for a while. The treatment included working on your posture and making sure that your spine was curved correctly at the small of your back. Digging through my memory, I remember my physio telling me to do some exercises that involved lying on my back and I think I had to do some sort of leg raising. It's lost in the mists of time but the posture you use to relieve the pain sounds a bit similar. This is ages ago, though, and I frankly don't really know what I'm talking about!
I wonder if you would have a better chance of a helpful response if you started a new thread called something like "Back trouble: does anyone know what this is?" and repeated your message. I don't mean to chuck you off this thread, you're very welcome here (threads always wander about, it's not a problem and it's completely fine that you posted here!) but people who know about back pain and who might recognise your problem probably aren't reading this thread and won't see your question, even if it does turn out to be an OI/ME/CFS symptom.
Good luck! I hope someone has some good info and advice.
