DrumHeadGuy:

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To Wife of Husband with LD:

Hi, me again. I forgot to tell you a couple of things. Things that made my condition WORSE = shots of any kind, orthotics caused blisters and I never could get shoes to fit with them - so I suggest a GREAT pair of ASIC running shoes, with lots of cushion and Thorlo socks! Physical therapy made my feet sore as Hades and seemed to cause more pain, felt like something was breaking in my tendon. Then, I'd get cramps in feet at night. You can do some things, but if you/he takes something for foot pain, just remember this - the more he does, sometimes? He will pay for it the next day. Not with everyone, but with me. I think it depends where the nodules are.

You will probably NOT find any Dr. who fully understands this disease. Some think it doesn't hurt - wrong! Again, it depends on where, how many, etc nodule size, it varies. One size does not fit all. But, my PIP (knuckle pads) were the sore type and the bumps got very big - I would wince at sticking my hand in my jeans!

Also = a couple of people said something that I believe is related to DC and LD - it may have something to do with repetitive activity. I have been a drummer for 50 years and both hands and feet endured a lot of vibration, pressure, and if you have the genetics for this stuff AND you do something that involves hands-feet? It may, in some way, make it worse. Seems to be a connection there for some people. I also was a runner (20 miles a week) and that pounding might be the reason my feet are so bad now. I don't know. maybe?

So, the only Cortisone shot I had was my last! OMG, it hurt so bad and didn't seem to help me at all. Plus, stretching seemed to help at first, but like I said - the next day was like I walked for miles. So, he can tell you if he experiences this. And, yes, sorry to say, your son? He might get this - but, if he starts in the feet, the sooner to get RT, the better. For me, when the nods first came up, that's when they burned the most - and I noticed after I ran, the burning would be so bad, it would itch. I walked on the sides of my feet (avoidance) but, careful with that - it can cause knee and back-hip problems from walking that way.

Just remember - everyone on here is trying to help - but, what works for me or someone else? Might not work for your husband. But, try different things - and avoid things known to NOT work or to make things worse. And, don't get frustrated from the trouble finding a Dr. who is knowledgable as this stuff is rare. Dr. Herman couldn't believe Dallas didn't have an RT facility - that might change once places like UTSW Medical finds more people with these diseases. I appreciate the offer for hugs, but not necessary. I'm just glad to help if I can. I hope you find some relief for your guys and tell them it won't kill them, but it's no walk in the park, either. I would also tell you to be wary of any medical professional that says they know how to make this go away. The worst offenders seem to be ORTHO Dr.'s who operate. But, that's what they do. Sometimes, and in the case of LD (IMHO), surgery is the worst thing you could do - just asking for complications. Like removal of complete Fascia or even an infection leading to amputation! Not trying to scare you, no, just making you aware of what CAN happen. It was explained very well to me: LD and DC are a little like Cancer in how they replicate - if you cut on Cancer? It seems to spread and come back worse - RT kills the way this replication works, it removes an X or Y needed to grow the nodule and stops growth and hopefully, any new ones. OK, that's all I wanted to tell you. You have some A+ comments and I agree with them. Best of luck to you and your family - DrumHeadGuy

Edited 09/02/15 03:49

Hi,

I rarely post but check in and read every couple of days to keep on top of things. Two main points which I have not seen in this thread and I think are important are:

1. If your husband drinks alcohol read up on the effects or possible effects of alcohol on DD and LD and suggest cutting down drastically or quitting altogether. I went to one drink a month for two years and I now rarely have a drink. There is a fellow at work who developed nodules and gave up drinking and the progression stopped. I am not saying there is a direct correlation but there is one published study showing a link. Seeing as there are few things you can do to impede the progress but this probably is one of them, well …. Also, look at his blood sugar. I am pre-diabetic. I know there are lots of reasons for having DD and LD and I think it forms for many reasons, but again, losing weight, avoiding sugar, not bad things for your health overall.

2. DD and LD react when you attack them directly. Think of it more like your body saying you need more of this fascia material. If you cut it out, ….. it will grow back and I have heard faster than the first time. Look at the injections right into the nodules for LD. It is listed on this site and there is a doctor in the US who does it for $1,500 a shot last time I looked at it. I think that would be a much better route to go than full foot reconstruction. Note that I also “believe” in radiation therapy and have had RT on both hands. You could have the shots to reduce their size and RT to impede further progression. Note that RT is best in the earliest stages and when DD or LD is active or growing.
The shots work as they break down the tissue from the inside of the nodule and I think trick the body as the outside of the nodule is not altered. You usually I understand have two rounds of shots. It does not take the nodules to “zero” but down by over 50%.

There are other treatments / actions but I wanted to highlight these two as they have not been talked about in this thread yet.

Read. Read all you can as you will know more than your doctor and most doctors very quickly.

Also, it is not cancer or a heart attack, you can still live life, enjoy the sun on your face, the hug of a loved one.

Good luck,
MikeNinerSeven

Edited 09/21/15 01:34

LedderhoseWife,

I see you have not logged on for a while. Are you still reading here? If so, could you give us an update please. Hopefully some of this information has helped at least ease your minds.

Best wishes,
MikeNinerSeven