Thought this might be of interest. My constant state of swelling and pressure the past year has caused me to have what they think are lymphatic blockages or stagnant masses of lymphatic fluid - especially the groin,thigh/ham string area. These hard raised but smooth masses , not lumps ,and are extremely painful - rather like the EM burning scalded feeling but different. The pain is deep aching- sore- it actually makes me feel very very nauseous- at the moment i can not sit down even if i wanted to. Being 90% bedridden i can only now lay on my side. Its not the same burning, aching or cramping etc... as with EM so I think this might be another 'effect' . Im interested to know if anyone else experiences or has noticed similar to this.
I cant tolerate clothes let alone being touched but as therapy is like light butterfly touching s it is more like puffs of air on the body and thus pretty manageable most weeks. Therapist keeps room and her hands cold .Lymphatic therapy also helps boost immune system.
I found research article on massage and EM - validating this therapy in refractory pain if anyone interested.
Lets keep sharing and paving the way to treatment
thanks mads for raising this topic! I also had manual lymphatic drainage done, the reason being that some of my toes were very swollen even in the absence of flares. They felt way to full and flares would come quicker and be more painful. Also, my toes were a lot thicker during flares than they used to be. I had MLD done and it helped. Initially, the warmth of the therapists hands was at times slightly unpleasent and also caused a very light flare in the end. But in the long run, i.e. some hours later, when the system has calmed and cooled down, I'm better by far meaning I'm back in 'normal' EM mode ;-)
From mads and my case report one might deduce that MLD may do something for EMers whose mobility is at least significantly limited by EM. Would be interesting to know who else has experiences with MLD.
PS: If your doctor prescribes it, MLD is very moderately priced in Germany: 6 sessions a 45 mins will cost less than 25 €, the rest is paid by insurance.
Great news Ben. Yes, very expensive. UK £60 an hour.
Just noticed that i never uploaded articles. MLD should be the Vodder method or equivalent. Lots of 'cowboys' out there ;)
Here is link to an older myofascial release post