new pain regimen

Except for the Morphine gel, which I couldn't pick up until today, I had been following the new medication plan. I figured it would take a few days for my body to respond to the changes and offer the following experience description.

My pain levels have had consistent spikes in the 6-9 range. Spikes from 7-9 at night have become the norm in the last few days. I wake up from pain through the night. I also itch all over my body as a side effect. I wake up scratching, though it doesn't really provide any relief. Starting Saturday night, I went back to taking Oxycodone for pain relief, though that is not part of the pain management plan. I called Dr. Belgrade's clinic Saturday night around midnight but didn't get a call back so I went back to what I had been doing before. It didn't provide as much relief as I was hoping and, even on daily doses 80 mg Oxycodone, 60 mg Oxycontin, and 10/650 mg Percocet (5 doses daily) I can't get my pain level below 5 for any significant length of time. The Neurontin gel doesn't seem to provide any relief and is painful to apply. I will pick up the Morphine gel at noon today and apply it then.

I hope that Dr. Belgrade will generate a different pain management plan today and that I will get relief.

I also haven't pooped since last week sometime. I continue to take Miralax once a day but will start 2-3 times daily until I have success. I remember having major pain issues due to constipation in April. I vowed to never go through that again so am stepping up my efforts.

My feet swelled up early yesterday. I remember that has happened in the past during some pain cycles as well. I am wearing my support hose on my left foot/calf now to minimize the swelling.

new pain doctor

I met with Dr. Miles Belgrade and his intern Dr. Andy Schakel yesterday and an associated pain psychologist in the same clinic. The four of us discussed my pain experience and the history of my Livedoid Vasculopathy diagnosis. We developed a slightly different strategy for my pain management, which we will try for a month and then reconvene for review.

I will be decreasing the dosage of Neurontin from 5400 to 3600 mg daily. This should decrease some sexual disfunction I have experienced, which has been due to decreased skin sensitivity. I started using a Neurontin gel on the tops of my feet this morning, which is where I have experienced neuropathic pain. This should counteract the decrease in oral dosage and ease the burden on my liver, while maintaining or increasing the medication's effectiveness.

I will start taking longer acting Oxycontin instead of shorter acting Oxycodone. I will be taking 10 mg TID whether or not I have high pain levels. The theory is to even out the large swings in dosage from 80 mg daily to none. This should decrease the confusion I have experienced.

I will use 10/650 mg of Percocet every 4-6 hours for breakthrough pain, with a maximum of 100 doses per month.

Additionally, I will use a Morphine gel on my ulcers TID when they are present. This will preclude the use of Duoderm dressing, which I have left on for 3-4 days. I will try standand Band-Aids and see how that goes.

The Neurontin gel is only available from one Pharmacy locally as is the Morphine gel.

The overall plan is to even out the dosages of narcotics and use localized topical pain treatment to minimize oral narcotic use as well.

I talked to both Dr. Belgrade and his pain psychologist about my addiction concerns. It was their opinion that I posed a low risk for addiction with this course of treatment and my current mental, emotional, and physical state. This put my mind at ease.

It was troubling to realize, during the course of our discussions, that I have experienced high pain levels for 19 of 40 weeks so far this year. That's nearly half the year. Last night this led to feelings of sadness, inadequacy, loneliness, emotional pain, powerlessness, and anger. I was able to work through some of these feelings with my girl friend Kalyn, whose support has been unwavering since this spring. This morning, some of these feelings linger, though are not nearly as strong.

9-9-09 status

My unmedicated pain level continues to be around 6-7 and I continue to experience nausea. I will try using ginger ale and soda crackers to treat the nausea. I continue treating the pain with Percocet and last night supplemented with 10 mg Oxycodone.

current pain level

This weekend found pain levels 6-7 most of the time, which I treated with Percocet. I do wake during the night with high pain levels as well.

later 9-4-09

My pain level was increasing so I took a Percocet in the afternoon. I am now back down to a 3 where I am normally.

new pain

My pain level has been down since my last cycle ended a week or 2 ago.

I have noticed in the last 3 days a new pain radiating from the interior of my left ankle across the top of my foot. Pain levels up to 6 today without narcotics. I will treat if the pain increases.

My ulcers have continued to heal. There are 3 left all on my left ankle, 2 smaller and one larger.

8-27-09

I have been at home for the last 2 days with nausea. No fever or other symptoms, just nausea. I have been off narcotics as well for the last 3 days, with pain levels decreasing to 4 now.

notes on addiction

I went yesterday with no narcotics to see how that went. I was in a lot of pain all day, levels mostly around 7-8. I didn't notice any psychological draw to take any narcotics, though I had them available to me all day. There didn't seem to be a physical draw either, except for the pain of course. Other than that, I didn't notice any other reactions.

update

I am back from the trip our week-long trip the mountains of Colorado. I was able to participate in all the activities which included horseback riding, whitewater rafting, kayaking, ropes course, and a 4 mile hike near the top of one of the mountains. My pain level was between 5 and 9 through most of the trip. I treated with 2 Percocet tablets (5/325) and up to 20 mg of Oxycodone every 4 hours. The pain was highest in the morning, when I would take my medicine dose 30-45 minutes before I got out of bed, to ease into being on my feet and walking.

I have never had more then 1 skin ulcer at a time and now have the one ulcer that I have had for a few weeks and also 6 other smaller ulcers for a total of 7. 6 of them are smaller (.5 cm in diameter). I am covering all of them with Duoderm dressing to keep them from developing hard scabs and also minimize the risk of infection. Changing the dressing is extremely painful as is cleaning the area with alcohol prior to putting a new dressing on. I have not had an infection yet with all the open sores I have had.

I have expressed to some close friends concern about addiction again, now that I am taking constant large doses of strong narcotics. I do notice a pleasant psychological effect where I feel almost a feeling of warmth which radiates from my chest throughout my body. It is this feeling of warmth that decreases the pain level. I do not know what addiction would feel like but I did have a recent experience which triggered this concern. When in the mountains and having a high pain level, I was searching through my bags looking for my bottle of Oxycodone and couldn't find it. I had a strong panic feeling because I thought I had lost the bottle and wouldn't be able to take my dose. It was this strong panic feeling that scared me afterwards. Frequently I also have a slight panic that I will run out of narcotics some time and won't have any when I need it to decrease the pain.

I look forward to the appointment on September 9 with Dr. Belgrade and developing a plan to better manage the pain I am living with now and talk with a psychologist specializing in pain therapy about how to cope/manage and about my addiction concerns. I am thankful that most of the time my pain level is around 3-4 and have only had 2-3 outbreaks annually .

I describe my pain as constant with sharp spikes. The pain feels like an deep abrasion, which is consistent with the appearance of the ulcers. The pain is also exacerbated by movement as the skin is tugged and stretched. Accidently bumping an ulcer against something is extremely painful, which thankfully only happens infrequently. I am constantly amazed at the depth of the ulcers and what facets of my body I can see under the skin. In addition to the abrasion pain, I also experience a soreness in both ankles. This pain increases as I walk and move.

I also now experience moderate drowsiness about an hour after dosing my narcotics and I continue to experience confusion though that has decreased in the last 2 weeks.

pain level

My pain level was at 6 last night with spikes at 8. I had difficulty sleeping due to pain and was up until about 2:30. I treated with 2 Percocet tablets and also 10 mg of Oxycodone. If I have similar pain tonight I will treat with additional Oxycodone.

I am back to walking with a cane again and yesterday received a handicapped parking permit, which will allow me to park close to store entrances and not have to walk as far.

pain level is back up

Over the past 2 weeks, my pain level has steadily increased. This morning and last night between medication doses it was a 7. I can bring it down to 4 with 1 or 2 Percocet tablets (5/325). I was taking it in conjunction with 400 mg daily of Tramadol. Tramadol's side effects for me are severe itchy skin, anxiety, sleeplessness. These side effects have increased in severity each time I have gone back to taking it. It is bad enough now that I stopped taking it and am using Percocet exclusively for pain treatment (in addition to Gabapentin [Neurontin]), 5400 mg daily.

I have an ulcer on the interior of my left ankle which showed up about a week ago. My ankle is also swollen in the area of the ulcer. The pain radiates from this ulcer out to my shin. I also have pain in my right shin, which feels like someone kicked me there. I recognize this type of pain which I have had before in the same area. I will try and publish pictures soon of the ulcer and the current status of the discoloration.

I have an appointment with Dr. Belgrade September 9 to develop a plan for now and the future.

I leave this Saturday August 8 for a back packing/camping trip in the Rocky Mountains. I am concerned that I will not be able to fully participate in all the activities. I believe at this point that I have enough medications to manage the pain.

I notice again that I get confused when I take Percocet. The confusion presents in part as an inability to come up with words. I will start a sentence and not be able to think of or speak correct words, or words that would even make sense. I also got started doing a task and can't think of how to complete it. It's very frustrating. I remember this happening last April, but I don't see that I blogged that information. I also found myself twice this morning stopping part way through a simple task (sorting through medications), not being able to think of how to complete it. This is worrisome and will talk to Dr. Belgrade about it when I see him in September.

blood in urine

On March 25 I discovered blood and a few clots in my urine. I did not have a fever nor any pain in my lower back which would indicate a kidney infection or other problem. It cleared up 5-6 days later without treatment but I made an appointment with Dr. Hackett, a urologist to have it checked out. A blood test showed a testosterone level of 39, with a normal range between roughly 250-850. I subsequent test showed a normal level of 389 so the initial test was ruled an anomaly. A CT scan of my kidneys was unremarkable and a cystoscopy or my bladder showed nothing abnormal. The blood was attributed to a possible small ulcer in one of my kidneys or bladder caused by my LV condition. It is unknown if this will recur.

Pain relief

As I look back at my latest post, I realized I didn't post about the end of the latest pain cycle. I believe it was the afternoon of Tuesday May 12 when I was waiting for my pain level to increase before taking my afternoon pain med doses. My pain level never increased and has stayed down in the 3 range since then. I stopped taking all narcotics at that point and haven't needed them. I looked back and this pain cycle lasted about 6 weeks.

notes from 5-7-09

I have been laid out in bed since Sunday evening, it's now Thursday, with a bad virus. I was checked for flu with a negative test result. I am slowly getting better and am back at work today for the first time this week.

Since 4-30, my pain level increased again back to 6-8. For pain treatment, Dr. Abraham prescribed Oxycodone since Percocet has worked in the past, which contains Oxycodone and Acetaminophen. That gave me the relief I needed and was able to get me lain level down to 4-5 where I could function again.

My pain level dropped off Tuesday afternoon down to a 3-4 and has stayed there since then. I stopped taking all pain medications except Neurontin. This is a welcome relief and I think is the end of this pain cycle, which has lasted about 6 weeks. I didn't have any ulcers this time.

I haven't made my appointment with Dr. Belgrade but will soon to come up with a plan for the future.

Here is my current medication list:

Aspirin 325 mg oral Take 325 by mouth daily
Danazol (Danocrine) 200 mg oral cap Take 200 mg by mouth daily
Folic Acid 400 mcg oral tab Take 400 mcg by mouth daily
Gabapentin (Neurontin) 300 mg cap Take 1800 mg by mouth 3 times daily
Mirtazapine (Remeron) 30 mg oral tab Take 30 mg by mouth each night
Nifedipine (Adalat CC) 30 mg oral tbsr Take 30 mg by mouth daily
Oxycodone acetaminophen (Percocet) Take 1-2 tab by mouth
5/325 mg oral tab every 4-6 hours as needed
Oxycodone 5mg oral tab Take up to 30 mg by mouth as needed
Pentoxifylline 400 mg oral tbsr Take 400 mg by mouth 3 times daily
Ultram 50 mg oral tab Take 100 mg by mouth 4 times daily as needed
Vitamin B-12 1000 mcg tab Take 1000 mcg by mouth daily
Vitamin B-6 100 mg tab Take 100 mg by mouth daily

4-30-09

Yesterday evening I had some unexpected pain relief. In the afternoon, after my morning dose of pain medications had worn off, my pain level was down so I didn't take any Dilaudid, Percocet, or Ultram. Even without those in my system, my pain level was 4-5 and I was able to walk without a cane for the first time on a week or so. I was very happy and thought maybe the end of this outbreak was at hand. By 7:00 pm my pain level was increasing and and by 9:00 pm I had taken all these pain medications again out of necessity, and had a pain level of 7-8. I am trying to understand what led to the decrease in pain, possibly that I had cooled my foot in cold water for 4-5 hours through the day while I sat at my desk at work. That is the only change I can think of from what has become my daily routine.

I see Dr. Abraham this morning to try and get a referral for Dr. Belgrade. I also received the name of another pain specialist, Dr. Scott Schultz, a radiologist who works in Robbinsdale, MN. I got this name from Jill Landecker, a pharmacist at Cub Foods where I get my prescriptions filled. Being at the pharmacy every week, I have gotten to know my pharmacists at Cub Foods pretty well over the years. After my appointment this morning, I will call and try and set an appointment with this doctor as well.

My hope is that things go well with Dr. Abraham this morning and he can be my primary physician. I have been without a primary care physician for a couple years now, since Dr. Bosmans left my local clinic.

notes from 4-29-09

Since my last post, my pain level has continued to increase. Last Wednesday 4-22, after having pain spikes every minute or so at a pain level 9 with a base level 7-8, I went to the ER at North Memorial Hospital. I was given 2 mg of Dilaudid IM injection, which got the pain level down to a 7 with spikes at 8. Then I was given 10 mg Morphine IM injection, which eliminated the spikes. I left with level 6-7 pain.

On 4-23 I was prescribed Dilaudid, 4 mg every 3-4 hours. Without this and other meds, may pain level is 7-8 with spikes at 9. I also am slowly increasing my dosage of Neurontin (Gabapentin) up to a maximum 7200 mg daily, taken in 3 equal doses. For pain management, I now take:

Dilaudid 4 mg every 4 hours
Percocet (Oxycodone/Acetaminophen) 20/650 mg every 4 hours
Ultram (Tramadol) 100 mg every 4 hours
Neurontin (Gabapentin) 1800 mg three times a day
aspirin 320 mg one daily

I also soak my foot in cold water once or twice a day for 10-30 minutes, which also seems to help. I can get my pain level down to a 6-7 most of the time, though it increases as the medications wear off.

From what I have read, Dilaudid should have a much larger effect than it does on me. From what I remember about Morphine injections from 2 years ago, they had a larger effect than the Dilaudid injection did last week.

I noticed my right foot and ankle was swollen on 4-24 in the areas of pain. I started wearing my support hose (30-40 mm compression) to minimize the swelling. See the pictures I have included.

I am trying to get an appointment with Dr. Miles Belgrade, a pain treatment specialist working from the Pain and Palliative Care Center in Minneaoplis. I have heard very good things about him. I really need a doctor that is willing to work with Dr. Leitch and me on the treatment of this condition and the associated pain. I hope this is the doctor for me.

4-13-09 pain

I woke up last night every 3-4 hours with pain spikes at 8-9. With my existing pain meds, I can only get my spikes down at a 7-8. I spike every few minutes and, other then meds, nothing seems to help alleviate the pain.

The spikes are a sharp stabbing pain located on the top of my right foot, centered over my 3rd and 4th tarsal. I also have a base pain level of 5-6 which feels more like more of a skin irritation and ache.

notes from 4-12-09

My pain level has been up in the past 3 weeks or so. I have no ulcers but pain radiating on the exterior of my right foot. It started near my ankle 3 weeks ago and felt like I had been hit hard with a sharp object. I did not have swelling or anything in that area. The pain moved down the outside of my foot and now is located down near my toes. My pain level has been 4-6 as a base with spikes at 8-9. I have treating with Ultram and Percocet but can only get the spikes down to 7 or so and the base down to 4-5. I have an appointment with my dermatologist to discuss pain management and what we can do to bring the level down further. I would like to get the spikes down to 5, with a base at 3-4 if possible.

It's been a long time

It's been more than a year since my last post, I kick myself now as I look back through my posts because of my inability to track my progress through the year. But, as much as I hate the saying, it is what it is. Here is what I remember about the last year:

Around May of 2008, I had a pain flare up which was excruciating. It was discovered that I had an ulcer between the toes of my right foot. We treated the pain with Oxycodone which helped.

Overall, I would say I have had a pretty good year as far as pain flare ups. My pain level is up in the last week or so. Mostly I notice my neuropathic tingling is worse. That causes pain on the tops of my feet and up my shins. Pain levels in the 4-6 range while on 200 mg, 3 times a day of Ultram, which now has a side effect of making me anxious. I have trouble sleeping as well. I may try to switch to Oxycodone if my pain level stats where is has been.

That's it for now. Hopefully I will blog more in the near future.

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.