Although I joined this group last year this is my first post - I have found this website a great source of information thank you so much.
So a very quick over view of me I am from Hamilton New Zealand - very exciting times at the moment as we are hosting some Cricket World Cup matches great divisional therapy! Anyway in 2010 at 49 I had a hip replacement due to severe OA. It was a disaster as I developed ALVAL - a reaction to the metal so it had to be taken out and a ceramic replacement was put in.Just prior to my second surgery my hand symptoms began followed a year later by my feet. I had been referred to the pain service here because of ongoing hip pain and the Dr at the clinic suggested that I had EM and I think he is right.In NZ we have a system of ACC which covers you for injury and my hip placement disaster was seen as a treatment injury so I am under ACC which is good for me in some aspects but not others. I am unsure if a link can be made between developing EM and the metal poisoning but that is another issue.
One query I have is that 3 weeks ago I had a lignocaine infusion 3 days after this the hot burning pain in my hands was much less ( but unfortunately only lasted for a week) but my feet were no different than usual - the Pain Specialist was mystified by this and said that he had never heard of that before...I am wondering if anyone else has experienced this?
Also I need to have have both of my knees replaced - really scary after my hip experience and I am wondering if others have undergone orthopedic surgery with EM and how well they healed ?
Kia kaha ( say strong in Maori)
Hello Clair Ellen.
I have had a few lidocaine infusions and will be having another soon. I am also taking mexilatine in combination with the infusions. I have EM over most of my body although the areas that burn come and go and fluctuate in severity. After my infusions I get more relief than anything else I have tried but as you stated it doesn’t last long. A couple of weeks for me. Each time I have them they have seemed to last a bit longer.
I get how it could of helped your hands more than your feet if your feet were more severe to begin with. It’s not magic and certainly doesn’t make all of the pain go away so your worst areas may not be helped quite as much.
I have not had orthopedic surgery but I have had a Hysterectomy while having EM. It was much harder for me. I was speed to spend 1 night in the hospital but had to stay 5 nights because they couldn’t get my pain under control.
I eventually healed as expected but I think the b process was more painful than what others might experience.
I how it goes well for you.
Hello Clair, I had my adrenal gland removed in May of last year and didn't have a problem with the healing but it wasn't on my feet and legs the operation. However, the biggest problem I had was the heat on the ward! It was hot weather as well and our hospital is always roasting even in the winter. I had to fight to get a fan provided and they wouldn't allow me to take my own as it had to be checked for safety and they weren't prepared to do that. Plus, I couldn't do what I normally do and put my feet in a bowl of water inside freezer bags and so my feet and legs were absolute agony far worse than at home. Gosh was I glad to get out of there.
I have had a couple of shoulder surgeries, I don’t remember added pain from EM, the last surgery got staph infection, which I had to fight with IV antibiotics, I was using heavy pain meds, the burning feet were not painful during that time. Possibly there was just more pain elsewhere?
I have always had problems figuring out what helps and what makes it worse, as it will wax and wane at times, but mostly it is constant. If my feet are not burning, they are frozen! I thought the Cymbalta was working, but the heat came back, and the pain. The doctor will probably try to bring the dose up to 90mg, maybe 180mg…
I am going in for nerve blocks in my back next Tuesday, it will be interesting how this may effect the EM pain. Probably be Lidocaine and cortisone, into lower facet joints and two ribs that dislocated. I am always concerned that it may trigger a flare of the SLE Lupus or EM.
About the orthopaedic surgery: I had my leg plated and pinned nearly a year ago after a freak accident shunted my kneecap up to shatter the lower femur into many pieces. It was all very traumatic and took paramedics two hours to get me down stairs and out of the house. It was a five hour op and two weeks in hospital. I didn’t care about the EM at first thanks to pain medication and the whole thing was just so painful that EM flaring was the minor problem. I had secreted a big tub of very wet wipes which they had left by my bed and used those constantly on my feet, replacing them as the heat in my feet dried them. Once I got home I did the same with chilled damp cloths and a fan as my usual way of cooling, walking on cold tiles, was not possible. The leg healed fine but the knee is still giving me trouble but it is a decade and a half since I was told I need new knees so I can’t be surprised. I will avoid surgery if I possibly can. I’ve had maybe 15 or 16 necessary surgeries in my life and simply feel enough is enough. Emergencies only! I am in my 70s and think I lose brain cells with every anaesthetic and I need the few I have left:)