Anyone else with other painful condit... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,584 members840 posts

Anyone else with other painful conditions?

lily82
lily82

I was diagnosed with EDS Hypermobility a few years ago. I have a partial subluxation in my neck, lordosis and generally wobbly joints.

Only problem is, I've recently been told I likely have Rheumatic Fever. I'm waiting to see an infectious disease specialist and cardiologist.

The thing is, I never know what is EDS pain and what is RF pain. Rheumatic Fever causes proper swelling joints, red hot and extremely painful and causes heart damage. Also, RF causes a condition called Syndenham's Chorea, which damages the muscles and causes weakness and joint laxity.

The EDS pain is like the pain I have in my neck from the subluxation. It's more of a grinding, sharp pain.

My neurologist also suspects I have Adddinsons Disease, which also causes pain, especially hip and back pain.

I have to watch out for any sudden onset of pain, especially in my knees, as that's a sign of Rheumatic Fever.

But because he EDS causes chronic pain, I don't know what's causing what! Also, I've developed a high pain tolerance over the years so I didn't complain that I was in agony- and when I did I was told it was all in my head.

So anyone else with multiple diagnosis/ suspected conditions that cause pain?

4 Replies

EDS has a strong hereditary link, so if others in your family have EDS, and you also fulfil the criteria, they that is probably what you have. But that doesn't stop people from having more than one condition. Clinically the consultants are supposed to make sure that one of the other connective tissue disorders that aren't hereditary are ruled out before diagnosing EDS.

But at the end of the day, pain is pain, regardless as to what is causing it. There are different kinds of pain and they need to be treated differently. Acute pain, that is pain from an injury, is best treated with painkillers and anti-inflamitories. Neuropathic pain, that is pain that arises from nerves, are treated by a different set of drugs, and chronic pain is treated differently again. So rather than treating pain according to diagnoses, it is better to treat pain according to how it is formed.

I have osteoarthritis that had eaten away all the cartilage in my toe joint. So the toe joint pain was caused by bone on bone. That the osteoarthritis was probably caused by the hypermobile joints in my foot is neither here nor there, the end result was the same.

So rather than worry about which pain is caused by which disease, think about why there is pain. If it is because of infection then that needs to be addressed. If it caused by weak muscles affecting the joints, then that can be addressed. Whether it is RF, EDS or anything else isn't going to matter that much.

I hope that makes sense and doesn't make you feel worse!

lily82
lily82 in reply to cyberbarn

I guess the point I was making it- is that as soon as I get any symptoms of Rheumatic Fever i.e joint pain and muscle aces etc I have to get medical treatment ASAP.

But as I have EDS/ hyper mobility which also causes joint pain, I have no idea which is which! So I could be ignoring an attack fo Rheumatic Fever by assuming the pain is the EDS.

cyberbarn
cyberbarn in reply to lily82

in that case you need to balance the risks of ignoring a RF attack. Would I be right in assuming that a sudden onset of joint pain which progresses and would be accompanied by other symptoms such as fever and sore throat? If so, get treatment ASAP. If it is just your 'normal' joint pain with no other symptoms, then that would be your 'normal' EDS. If you are treated for RF and the joint pain doesn't change, then it was probably EDS.

Good luck, I hope you get some answers from the infectious disease people and that your heart hadn't been too badly affected.

lily82
lily82 in reply to cyberbarn

Thanks!

Yeah, the pain tends to 'jump around' and I get like a swelling sensation. Mainly in my knees and elbows. I kept thinking for ages that the swelling was just something like 'tennis elbow' or just the EDS playing up.

I think that's the danger of having an underlying painful condition, is that if you get another condition that causes pain, it's not always easy to spot.

And for example, I kept attributing the dizziness and fainting to POTS, when it was probably heart damage from the Rheumatic Fever.

You may also like...