notes from today 11-23-07

I have been experiencing a new pain over the last few days. It's a deep throbbing pain radiating inside from my left knee. It has hurt enough to keep my awake during some nights. It seems to get worse throughout the day peaking at bed time. I do what has precipitated this new pain.

pain level

My pain level has decreased over the past week or so. Currently it's a 3. My ulcers continue healing. No new ulcers have appeared. I was pleased with the relief provided by the Lidocaine gel. I ended up using it twice a day for 3-4 days.

pain level

I had trouble sleeping last night due to my pain level that has increased over the past few days due to new ulcers on the interior of my left ankle. It spiked at a 7+ this morning. Once I got out of bed, I tried for the first time sterile Lidocaine gel (2%) applied to the ulcers and covered them with a bandage. This can be applied 3 times daily. It numbs the immediate area and seems so far to work pretty well for the ulcer pain. I intend on using it as needed for pain due to the ulcers.

My dosage of Danazol is 200mg, once a day which I take in the morning. I have not noticed any adverse reactions to it. I will get my liver function checked in another 3 weeks or so to ensure it is still functioning at a normal level.

My insurance has not yet approved Cymbalta, which I was prescribed by MAPS pain clinic for my neuropathic pain. I notice my neuropathic tingliness constantly throughout the day and as I crawl into bed at night.

trying to get the http link to work

try clicking on this link to get to the WebMD:Danazol site

Danazol

I think I got it this time.

new med

I started a new med today: Danazol. I will post my dosage when I have it at hand. Info can be found at http://www.webmd.com/drugs/drug-7778-Danazol+Oral.aspx?drugid=7778&drugname=Danazol+Oral (the http link didn't work this time, I am experimenting with that) Our hope is that it will slow the progression of the symptoms.

From a purely philosophical perspective, I don't think anyone can be sure that a particular course of treatment is effective at "slowing the progression" in a single case. To what are we comparing this course of treatment? I do tend to wander to that end of the spectrum, often asking questions of myself like, "How do we know that this is doing any good at all?" Well, I can say with regard to my pain meds, if I stop taking them, my symptoms increase in a few hours or within a day. When I start taking them again, the pain subsides. So for those symptoms, I can accept that there is benefit. But for the courses of treatment for other symptoms that we are merely attempting to, again "slow the progression", I am not certain that we are making progress. For the most part, I trust that we are.

today's thoughts

Thanks to all who responded to my email about viewing my blog. Yes, this blog is almost completely about my journey with my medical condition, livedoid vasculopathy (LV), and related topics. I know it's graphic at times; I do not apologize for that. This is meant as an education for me and others and to help me track my progression.

I was looking through my past postings and noticed that one of the pains I experience now has I also described nearly exactly the same way back in November of last year: the feeling of being kicked in the right shin. A reoccurence of the same pain...interesting. Back then it lasted for a week or two.

notes from 9-24-07

It's been a very long time since I have taken the time to blog. I will try and take the time in the future. I know it only serves me better to do so.

This spring/summer as my pain level rose again, I tried twice a lumbar epidural. This procedure involves guiding a needle with x-ray into the epidural space in my lower back spinal column and injecting a mix of Lidocaine and Cortisone. My pain level after the first procedure went from an 8 to a 6 before I left and was down to a 4 by the next morning. I had a pain level around 3-4 for the next 2 weeks, than it rose again.

I had the procedure done again, hoping for a more lasting effect. I had this time 4 weeks with lower pain levels; still not as long lasting as we had hoped. We decided not to try a third round since it didn't seem to provide enough of a long lasting effect (6 months to a year).

My pain level has been manageable through most of the summer until lately. Through the last week and a half my pain level at times has risen back to the 7-8 level. I have just a couple of new smaller ulcers. My worst pain now feels like I got kicked in the shin, just above my right ankle on the inside of the shin. There are no external marks or ulcers in the area. It is very sensitive to the touch. It feels like a bruise. No swelling in the area either. The area is not hotter or colder than the surrounding skin. I also have pain near an ulcer on the inside of my left foot near my ankle. I will make another appointment with the MAPS pain clinic to talk about what is next.

I have been seeing Angela Leedy-Larson at that clinic for a while now. She has recommended an implantable device that has electrical leads and sends electrical pulses to your spinal column. This sounds to me very similar to a TENS unit which I tried for a while with no relief; I only was annoyed from the buzzing feeling. This is a permanently implanted device controlled with an external remote control. It just sounds kooky. I honestly don't belief it would work. I am pursuing treatment with meds for now. I can use them when I need, and when I am relatively pain free, I don't take them. I like that aspect of that course of treatment.

My purple skin patches continue to spread. I will upload some more pictures soon. I notice the spread on the underside of both forearms and a little on my belly. For now, it is just annoying.

That's it for now.

pics from 1-19-07

The picture of my left forearm show the progression from last year of the discoloration. The picture of my chest does not show much progression from last year.

The other 2 pictures just show the status of the 2 ulcers on my left foot.

pics from 1-13-07

pics from 1-8-07 - swelling

On January 8 of this year, I noticed that my left foot was swollen across the top on my foot. It doesn't show very well on the picture here but I included it anyway.

I remembered there was a time last year about this time of year when my left swelled up like a water balloon (about 1 cm out from my normal foot) all the way around. It didn't get that bad but wanted to document it.

notes from last week

Last week was a bad week in terms of pain. I woke up from pain for the first time ever last Monday. My pain level spiked at an 8 that morning. Walking was painful so I started using a cane to get around. It was clumsy and awkward at first but after a few days I got used to it. I stopped using it this week as my pain level is back down to a more manageable 2-4 now.

notes from 1-7-07

My current pain level is about a 6-7 when I wake up these last few days. The pain is an overly sensitive patch of skin on the tops of both feet. It is painful to be in the shower with the water hitting them. After I have taken my morning meds, then pain level subsides to a 3-4.

The ulcer on my left shin has healed. I have a new ulcer on my left ankle. The two ulcers on the top of left foot are still there.

I am taking these meds currently:
ASA 325 mg1 daily
Foltx tab 1 daily
Pentoxyfylline 400 mg 1 tab TID
Tramadol 37.5/325 mg 2 tab TID
Gabapentin 600 mg QID
Remeron 15 mg QHS

I am going to talk to my psychiatrist about the possibility of increasing my dose of Remeron. I have trouble sleeping at night; I am restless. I have increased stress in my personal life. I have increased thoughts I now associate with depression: hopelessness, despair and lack of appetite.

I will start now to track my weight. I weigh 137.5 lbs. I normally weight around 145 lbs. I hope that increasing my dosage will decrease my depressive thoughts and I will be hungry more often. I would ultimately like to weigh 150 lbs. I think that would be a healthy weight for me.

2 new ulcers and a dream

My pain level has ranged from a 3 to a 7 lately.

I developed 2 new ulcers on the top of my left foot today. I am sad and aggravated. I am resisting what seems inevitable.

This winter has given us a smooth clear freeze on the lakes with no snow so far. Perfect for ice skating. Today I went out on the ice taking out a very large quad line (steerable) kite that I made a few years ago. I put on my ice skates and set up the kite. The wind was marginable but at times was strong enough to lift the kite airborne and pulled me for an incredibly exhilarating ride across the lake. This is something I have been dreaming about doing for years. I realized today that this may be the only chance I will ever have. It's rare that winter gives us such a nice clear freeze. And even if it does happen again, I may not be able to withstand the pain enough to enjoy it. I was out there about an hour and a half as the pain grew worse and worse. But I am glad I did it. I fulfilled a dream.

Notes

I continue to experience this new pain sensation from a month ago. It is in both ankles now and feels how I imagine athritis feels. More of an ache and soreness in the joint radiating in from the top of the ankle.

My pain level has been pretty steady around 3-4 for the last couple weeks even with this new pain.

I developed a new ulcer on my left shin about 10 cm above my ankle bone yesterday. I will post pictures shortly. I shaved the area to minimize the risk of infection and also so I can use the Duoderm dressing which is self adhesive.

Because it is further up my leg than any ulcer I have had in the past, I believe it is a another sign that my condition continues to progress. The ulcer on the interior of my right ankle has not fully healed yet.

I reviewed pictures from the past and noticed that the skin on my right shin where I had the "kicked in the shin" pain earlier has now developed purple discolored patches similar to those near my ankles.

I finished my last weekly session of 10 in a class called "Living with Pain" run by the MAPS pain clinic. It was a class with 8 people who all have chronic pain and lead by a psychologist. In the class we talked about the experience of pain in general, our personal experience and how outside factors can alter the pain experience. We talked about different ways to manage pain, different medical procedures, relaxation, medication and others. I found the class somewhat useful though nothing presented was really altogether revealing for me. Most of the information was fairly general in nature.

Pain level

My pain level was a 6 when I got up today. The pain radiated from the ulcer on my right ankle and from the top of my right ankle. There is no visible indication of the reason for the pain there.

I am able to get the pain level to a 4 with the Tramadol and Neurontin.

notes and pics from 11-4-06

I haven't been on in a while mostly due to lack of changes. For a while my pain level was low and there were no changes to my condition.

That changed roughly 3-4 weeks ago. My pain level increased to a 4, I had a feeling like I had been kicked in the right shin. No visible marks, just the pain. I shaved that area to look for changes in the coming days or weeks. I didn't notice anything. after a week or so that pain disappeared.

About 1-2 weeks ago my ulcers reappeared. As you can see from these pictures I took on 10/30, I have numerous smaller ulcers on the interior of my left ankle and another slightly larger (.7 cm diameter) on the interior of my right ankle. My pain level currently is a 5 and has recently been as high as 6. Continuing to stay on my meds has been problematic but with the renewed pain level increase, I will have a constant reminder.

I will try and update this blog more often now to note any physical changes.

notes from 9-20-06

I have heard from some that you noticed I haven't blogged in more than a few weeks.

My pain level is down to a 2 or so throughout most of the day for the last few weeks. I continue to experience neuropathy on the tops of both feet. It's more annoying than painful these days.

I struggle with staying on top of taking my meds. I have to remember to take dosages at 5 times throughout the day and it's not somethign I enjoy. I now renew my efforts to stay up on them.

I started a 10 session class called "Living with Pain". It meets weekly with 8 people that experience chronic pain. I am hoping it's a good support group.

notes from 8-1-06

My pain continues about the same as it has for the last few weeks, about a 3 all day. The neuropathy continues across the top of both feet.

pain level 7-11-06

My pain level today is a 3 now. It has come down as the ulcer on my right ankle continues to heal.

I still have tingling across the tops of both feet, though it is not as noticeable as it has been in the past.

I have noticed about some smaller (.2 cm in diameter) ulcers that have appeared over the last few days on the interior of both ankles, 4 per ankle. They don't hurt, and have scabbed over. If they get painful I will cover with the Duoderm dressing to speed up healing and keep the wound area soft and moist.

Pain level today and last night and ulcer pic

Last night I changed my DuoDerm dressing and my pain level from my ulcer was an 8. It was an 8 when I awoke this morning and after the Tramadol took effect it came down to a 7. I have it elevated a little while I work today to help ease the pain.