Daily Diary, January 2006 to Present
*In Reverse Chronological Order*
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|Nov 29 2011: (4:26 pm) I had my annual physical on the 25th of August. Cholesterol was still high so my doc wanted to try me on 20mg of Zocor again. 20mg was the dose I was initially put on back in 2000 for 2 months and again in October of 2003. In 03 I was only on it for 3 weeks. That was the time I was seeing the Muscular Dystrophy doc who thought Mitochondrial Myopathy was a strong contender for a dx. I still have not had a good biopsy to prove that but that's another story. Anyways, we quit the Zocor after only 3 weeks of use then because Zocor will deplete the body of COQ10, an essential enzyme. My Muscular Dystrophy doc didn't think that was a good idea in my case. I had no adverse reactions and my cholesterol is still pretty high so I agreed to try it again. We'll give it 3 months and see how it goes and how well it works. I'll be on the lookout for extra soreness and dark urine. Dark urine is a sign of rhabdomyolysis and we definitely don't want to go there. That can easily kill you. I'm going to supplement with COQ10 and vitamin E.
|Nov 21 2010: (11:13 am) I had my annual physical on the 18th of August. Cholesterol was high so my doc strongly suggested I use 500 mg of Niacin to help my numbers. Since we all basically believe that Zocor (a statin drug) was responsible for my muscle ailments using any kind of statin would not be a good idea for me.
Let me tell you about Niacin. At the time she suggested it, it seemed like no big deal. Typical over the counter supplement right? Not for me. My wife picked me up a bottle at the local pharmacy on Friday (20 August) and I took one that night. No biggy. Saturday night I took another - that's when I experienced the full effect around 5 minutes after I took it. Roughly 90% of my body turned beet red and I literally felt that I was on the verge of spontaneously combusting from the inside out! My head and face felt like they were on fire and I was having a real hard time trying to stay focused! It was really bad. I was sitting at my desk and the full effect hit me in about 5 minutes. I made it to the living room and sat down on the floor and told my wife what was happening in case I blacked out or anything. It took almost an hour for the severity to lessen enough to where I didn't think an EMT would be needed.
So I decided to trash the rest of it and called my doc on Monday and she agreed that I had an allergic reaction. It was after that call that I went to take a shower. That's when I noticed an angry red raised rash over about half my body. Mostly on the trunk, legs, stomach, shoulders and upper arms. Thank the Lord it didn't itch and wasn't sensitive. It just looked terrible. Funny thing was the rash went away after about a week and then two weeks later it started to come back. It didn't re-emerge as nasty as it was before and went totally away in roughly another week. That's my first and last experience with Niacin.
So for the benefit of anyone advised to take Niacin - a common occurence that my doc forgot to tell me about is called "niacin flush" where you basically feel a "flushed" feeling. It's supposed to only be a minor short-term annoyance and most folks can tolerate it ok. For those that don't handle it well there is a "non-flush" version of niacin. My doc suggested I stay far away from both. I'm eating a lot of oatmeal and using a spread called Promise Active that contains plant sterols which is supposed to help with cholesteral. I'm also trying to limit my cholesterol intake to less than 200mg per day. So that's that and the high point of 2010.
|Dec 12 2009: (10:32 am) Nothing new to report as far as progression. Something that's starting to bother me is my right shoulder. About 3 months ago I did something to it where I couldn't even raise my arm on that side more than about 45 degrees without sharp piercing pain. Today I can slowly raise it above my head but it's still extremely sore. I can't recall ever having any type of muscle strain that took this long to heal. It's not like I'm moving bags of cement or anything even remotely strenuous. I just don't know. I have felt for a few years that my shoulder muscles seem to be diminishing. Everything else previously reported is unchanged. No improvement to anything.
|Sep 02, 2008: (5:32 pm) I had another reality check yesterday. My daughter turned 21 (yayyyyy) and as is the policy of this family, the birthday person gets to pick where he/she wants to eat. So Ashley picked a new BBQ place about 20 minutes away. Handicapped parking was available so we jumped into a spot. I then had to walk about 75 feet using my cane. Problem was that from parking to the front door is a slight upward grade. Maybe 2%. I barely made it. Leaving and getting back to the car was even slower and once again, within about an hour, I was taking baby steps again. Went to bed for about 3 hours and was then back to semi-normal. On the plus side the food was great! I keep hoping and praying that this thing will just go away by itself since my Doc has no plan for further testing. No luck so far. There have been a few times over the summer where I've tried to push the limit of my endurance hoping for some improvement and each time I end up barely able to walk at all.
|Apr 16, 2008: (11:18 am) OK this one will be funny HAHA. I usually keep my cell phone in my left front pocket. I have the ringer set to vibrate first for a bit, then the ring tone comes on. Here lately my left upper thigh muscle has been vibrating a lot and it feel just like my cell phone going off in vibrate phase. So I end up grabbing my phone quite a bit. Of course it's not really ringing. I'm thinking maybe a belt clip.
My groin muscles are still the worst endurance wise. They were the last to be affected; back around Oct of 2004 I think. Any squatting or stooping quickly causes a good deal of pain and a feeling of inflamation that lasts for the rest of the day most times. Sitting in one position too long will also do it. Or walking too far. Or even trying to put my socks on. I'm ready for the next muscle group in this strange evolution; this one is no fun at all.
The other day I was trying to thread a grip screw on one of my guns. I fought with it for about 10 minutes and had to quit. My hands started to seize up on me. So my muscle endurance is still pretty nill. That's all for now. Hopefully better news next time.
|Oct 19, 2007: (6:34 pm) I thought I needed to throw another update in here. No more itching. There was one night about 3 months ago where I couldn't remember if I took my pills or not. It became obvious I had not when I was still up at 6 am and the itching started on my arms. Other than that one episode, no other itching. No other off the wall symptoms either. I would almost say that the sharp pain is returning in my arms, just like when it first started. But not quite that bad. I'm still finding it hard to believe that my docs don't even have a guess of what's going on just by my symptom progression from when it started to 2006. I still get really bad fatigue most days and my muscles still have no endurance at all. I just keep telling myself that it could always be worse and I thank God for each new day.
|May 12, 2007: (8:38 am) The mystery continues. The itching has returned again, but only on my left forearm. It had happened twice since upping the amitriptyline dose, and seemed like it may have been related to sun exposure. So as I find myself out more trying to enjoy a little nice weather, the itching would return to say about 3 out of 10. Last night I purposely took 50mg less of amitriptyline to see if it would make any difference. Sure enough, I woke up after only 3 hours of sleep with the left forearm itching at about 8 out of 10. I quickly chopped a 100mg tablet in half and took it. It's going to be a bad day. :( Any time my 8 to 10 hours of sleep is interrupted I don't last too long. I'll be back in bed as soon as this itching calms down a bit.
I did some more research yesterday and noted that skin sensitivities and rash are a common occurence in Fibromyalgia folks.
|Apr 10, 2007: (7:21 pm) The itching hasn't happened again since about a week or so after upping the amitriptyline dose again. Thank God!
|Mar 21, 2007: (6:43 pm) This is horrible. The itching on my left forearm woke me up early again. I did take the increased dose of amitriptyline last night. I'm already bleeding in a couple of different spots from scratching. This stinks.
|Mar 20, 2007: (9:06 pm) About a week ago I stated getting the severe dysesthetic itching again on my forearms and head. Mostly the left arm and not so much on the head. Talked to my primary care doc and she upped the Amitriptyline another 50mg per night. It's what we did when the itching first presented back in Sep 2004 so I'm hoping it will work again. I'm talking chop your arms off itching.
|Dec 9, 2006: (10:27 am) At long last I can finally say my back is healed! I'm still using my cane for extra support but I'm pretty much back to my (ab)normal activities. This last week I was able to recline on the couch again. Amazing how little things become so important when you're physically restricted.
No changes good or bad otherwise. Fatigue still bad, muscles wear out quickly, and the cold spots continue off and on wherever they feel like it. My right eyelid seems to be twitching more than normal lately too. Life goes on!
Wishing everyone a Merry Christmas!!
|Oct 18, 2006: (1:23 pm) About a month ago I was bent over doing something and sneezed ... and re-injured an old lower back muscle tear (that was originally caused by a sneeze in 1996). It's been rough going. First my left thigh burned out from trying to compensate the lower back muscles on the left side. I ended up using my power chair on the 3rd day after it happened. I also had to use my walker just to get in and out of bed or the power chair. By the 5th day my arms and hands fatigued from using the walker to the point where I could no longer support myself. So I spent about a week more in bed than not. It took another week before I felt comfortable taking a shower by myself without fear of falling. A little over a week ago I was back to just using my cane to get around. What a relief.
As I type this I'm still using my cane and don't dare bend over to do anything. I still can't recline on the couch to watch tv. I have to sit upright on the edge of the couch or I can feel those back muscles straining too much. I can't wait to get back to my usual abnormal self.
Two days ago I sneezed again (must be the pollen) and it felt like someone stuck a BBQ fork in those muscles and twisted it around. So far, so good. It's a little more tender but not near as bad as a month ago.
|Aug 23, 2006: (8:48 pm) Within about the last month the fatigue has kicked up a notch. It's rare now that I'm even up for 4 hours more or less before having to go back to bed. My rheumatologist didn't want to prescribe any fatigue meds unless I start falling asleep without warning. ???? Seems to me that would be a different condition. Also my shoulders are feeling really bony on top. Could be just normal atrophy from lack of exercise ... I hope.
|Jul 28, 2006: (11:40 am) Roughly a year and a half ago the last muscle group to be affected by whatever this is, was my groin muscles (ouch). It started the same as the other muscle groups, with sharp, shooting pains through the muscles followed by near paralysis. Also like the other muscle groups, after about a month or so it tapered off to just easy muscle fatigue. Stooping or squatting down induces the pain and movement restrictions. It can get so bad that I can't sit in a normal kitchen chair. It's just too painful and the muscles feel REALLY swollen. I have to either stand or lie down. Usually I just assume the prone position. I thought I had documented this here before but it doesn't appear I did, so here it is. Around January 2005 was when it started on those muscles. I think that's pretty much all my skeletal muscles.
Nothing more exciting to report. I'm still working on getting authorization to go to the big metabolic lab in Portland for yet another biopsy. Surely someone can figure this out. You would think.
|May 30, 2006: (10:40 pm) Lately it seems my shoulders have been much more sore than usual and it definitely appears I've lost significant muscle mass around the shoulders.
|May 7, 2006: (2:40 pm) Nothing new to report. I turned 50 the other day. Mentally, except for the bouts of fatigue I feel like I'm 30. Physically I still feel like I'm 80 though I guess I couldn't know what that normally feels like. I just know my mother-in-law complains of the same basic problems that I have. It's amazing how close the physical limitations are with her being over 70. Like I said, nothing new to report and it could always be worse so I'm grateful to God for the peace I do have. Do I hear an Amen? :)
|Mar 12, 2006: (9:17 pm)
1 The LORD is my shepherd, I shall not be in want.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.
4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
|Mar 7, 2006: (2:34 pm) My rheumatologist had me on Cymbalta for a while to see if it would help with the muscle pain. It gave me headaches. So today we stopped it and I'm going back on Paxil, which we stopped temporarily.
|Stardate 0209.2006: (5:31 pm) I saw my Rheumatologist again today (I'm just a simple country doctor Jim) and guess what? No new info. Manipulation of the FM tender points revealed continued sensitivity/pain just as the last visit. Now I have pain spots everywhere he checked that will probably last through tomorrow or the next day. We're trying a new drug starting tomorrow; Cymbalta. Another attempt at managing the pain associated with the muscle fatigue. We'll see how it goes. Meanwhile, the Klingons have once again breached our solar system. I may be called to duty.
|Jan 21, 2006: (12:40 pm) I'm thinking of removing this web site. I can't imagine anyone taking the time to read it and it doesn't appear that any further deterioration is taking place. It has served my purpose in documenting symptoms and progression. Testing and medication too; it's documented all that. If you were to walk up to me and ask what's up with my muscles there is no way I could remember the amount of detail I have here. Maybe I'll just leave it in case we do get a breakthrough. Don't expect to see much more here unless we do. Rodgers out.
|Jan 10, 2006: (6:34 pm) I'm happy to say that there doesn't appear to have been any other progression lately. I still have all the Fibromyalgia tender points and muscle exertion in any skeletal muscle group still quickly leads to muscle failure.
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