Daily Diary, June 2002 to July 2003
*In Reverse Chronological Order*

July 28, 2003:   (10:33 pm) My left thigh continues to go numb when I stand in one spot for more than about 10 minutes. Everything else remains the same; none the better, none the worse.
July 23, 2003:   (1:30 pm) We finally got into our new house on the 18th. One thing I can say for sure after all the calamity between the mortgage broker, builder, and lender is that stress does not make my condition worse! Whew!! My left thigh continues to go numb from standing in one spot too long, seems like about 10 minutes or so. I've also been biting my tongue a lot lately; probably about half a dozen times in the last two weeks.
July 10, 2003:   (8:58 pm) We're still living in a motel waiting for our house to close. This trip has really taken a toll on my legs. Walking is really slow using a cane. I ended up using an electric scooter in Lowes; I couldn't even make it half way down one isle. I've had the numbness in my left thigh 3 more times since the 28th of June. I'm always standing up when it happens and each time it usually lasts about 30 minutes.
June 28, 2003:   (8:03 pm) Another first today, my entire left thigh went numb for about an hour. Not tingly, falling asleep type numb; but actually numb.
June 20, 2003:   (11:19 am) That miserable bug is finally gone! That was a doozey! One thing I've noticed over the past few months or so is that my hands now fatigue with less and less effort. More so if I'm writing, but typing does it too. My hands get visibly swollen, followed by a crampy/painful feeling. When that happens I just have to stop whatever it is I'm doing. Just like with the rest of my muscles, sleep will usually alleviate the immediate symptoms. After a severe bout, weakness will usually persist for another day or two.
June 14, 2003:   (11:03 am) The bug has cleared from my head pretty much but I still sound like a sick moose from the junk in my chest. I haven't noticed any change in my muscle symptoms during this cold, so that could be significant from a viral prospective. I've decided that I'm going to try and see a Toxocologist next. I was reading EPA Superfund reports about contaminants in areas where I worked clearing ordnance in the Aleutians. A LOT of them have the capacity to create neuro-muscular complexities.
June 8, 2003:   (5:38 pm) It has become painfully obvious that my abdominal muscles have been affected by whatever this is. I have one of the worst head/chest colds I think I've ever had, and every time I go to cough my abs constrict with the same intense burning pain I feel in my arms and legs when I overuse them. I would almost swear the muscles are going to rip open or something.
June 7, 2003:   (3:56 pm) The past two days trips have really taken a toll on me. Both thighs, shoulders, and my neck are really sore/painful. I also managed to contract some kind of bug which isn't helping things. The fatigue is overwhelming.
June 5, 2003:   (7:08 pm) Today I started my terminal leave (retirement leave for the non military types; just means I'm on leave until my retirement date of 1 August, not that I'm terminally ill). Tomorrow I'm filing for Social Security Disability based on my total inability to work. The skin sensation issue is completely gone. Everything else remains the same.
May 20, 2003:   (12:08 am) That heightened skin sensation issue continues to subside. I can barely feel what's left of it just around my rib cage. I think it was some sort of bug bite. I still think it's odd that if it was a bug bite that the bite sites themselves were barely red and swollen, not like you would expect from something toxic enough to affect over half of the right side of my body. At least at this point it doesn't seem like something neurologic.
May 15, 2003:   (9:51 pm) The rest of my biopsy results came back today. They still haven't found anything. Perhaps at my next neuro appointment I'll beg for a spinal tap and an MRI of the rest of my spine. That heightened skin sensation issue seems to be subsiding. It's only about 50% of what it was a few days ago.
May 13, 2003:   (10:15 pm) I had my VA separation physical today. Now I just wait for their rating decision. Thanks to Kathy Y. at the Eglin Hospital I received another neurology referal for the West Florida hospital. This one is on June 3rd. I just hope the doc wants to do something other than an EMG. The sensitivity issue is still at the top of the list right now. It's really painful to touch. Same area as reported in the last entry.
May 12, 2003:   (1:03 am) This sensitivity issue remains a concern. Though as of right now the lower part of my right thigh feels almost normal. The most tender/sensitive spot is just below my rib cage. I'm still really sensitive from about mid-thigh to just below the right arm pit. I thought it may have been the result of a spider bite after seeing two marks on the back of my leg. But after looking up the symptoms, etc. from the two toxic species of spiders in Florida, none really fit. The two marks seem like ingrown hairs with no swelling and tenderness other than the immediate site. It has been disturbing my sleep which I suspect is contributing to a heightened fatigue state. I'll call my doc about this one later today. I've also quit taking the Garlique pills again and the arm pit rash is diminishing.
May 08, 2003:   (10:13 pm) This wierd sensitivity thing on my right thigh has kicked up a notch. Now it's even on the right side of my stomach. Both of my thighs are really sore right now too. There is a definite difference in touch sensation from the right to the left. It's like a prickly feeling. Any guesses? It's bad enough that I have to switch to sleeping on my left side. That's the only side I have left that I can get semi-comfortable on.
May 03, 2003:   (7:51 pm) I had two appointments with the VA today. The first was for another audiogram and the second with an audiologist. I was so wiped out when I got home I immediately took a nap. It appears the involvement in my quadriceps continues to progress. More on the right, I'm supposing because I've used primarily the right leg since the last biopsy on 1 April. Also, the skin is feeling "sensitive" around the right quad. I also had sore forearms earlier today which hasn't happened before. Even now they are tender to touch.
May 02, 2003:   (12:13 am) Today (actually the 1st of May) was my first VA appointment. This one for was their psychiatrist to evaluate the depression listed on my initial claim. I told her my biggest source of depression was due to not having a diagnosis yet. Of course many bumbled tests contribute to that. Anyways, I only slept for about 2 hours last night so today I was totally wiped out. My walking continues to get even stranger with balance starting to become a issue. I've got pain and a cold spot on the left side of my neck tonight too.
Apr 27, 2003:   (1:10 am) The past few days my arms, shoulders, legs and rear have been really sore. Even my quadriceps have bordered on pain and that really hasn't happened before. My walk is still really screwy. The faster I try to go, the shakier it gets. I'm going to try the Garlique again and see if my neck puffs up. I stopped it back in March but I'm not sure now if the pills had anything to do with it. My neck still seems to just get puffy around the collar bone from time to time. My hands continuously feel swollen now. The body jerks I experience when falling asleep are getting to the point of painful when it happens. It's almost like someone plugged me into an electrical outlet or something. Not quite that bad but I think you get the picture. Sometimes it happens as I'm dozing off and hear a noise; or something lightly touches my spine; or sometimes just for no particular reason.
Apr 26, 2003:   (8:12 am) I received my first letter from the VA yesterday. I have appointments on May 1st, 3rd, and 13th. I should have a disability rating within 10 to 12 weeks after that. My doc at West Florida is sending me a letter to the effect that barring a diagnosis of a treatable ailment, I'll be unable to pursue active employment for at least the next 12 months. I'll take that letter to the Social Security Office to file for my disability with them.
Apr 25, 2003:   (12:42 pm) Saw the doc again yesterday. We thought all the biopsy results came back, but only part of them did. Looks like they tested again for the inflamatory myopathies and also for glycogen or lipid storage diseases. The rest of the results may not be back for two months. The trip totally wiped me out. I was walking real screwy (shaky gait with a good deal of imbalance) at the hospital so at least the doc got to see that. Meanwhile I'm getting in touch with the EPA to get a list of known contaminants in the ordnance areas I worked in on Adak, Tanaga, and Amchitka in the Aleutian Islands. The street behind us on Adak had two babies born without brains within a few months of each other. The odds of that happening at all is astronomical, let alone two, so who knows what's out there.
Apr 19, 2003:   (11:56 am) The past two days have been really bad. I woke up at 3:30 am yesterday after a bad fatigue day and my legs were so bad by 2:30 in the afternoon that the muscles in my thighs and left foot were doing that fluttering thing again, which hasn't happened in a while. I didn't really do anything stressful other than slowly walking around the side of the house a few times earlier in the day. I ended up baby-stepping and on the verge of being wheelchair bound for most of yesterday. After sleeping for almost 13 hours I'm back to semi-normal today so I'll be taking it easy. My normal walk now would make you think I'm about 85. It just gets worse from there.
Apr 14, 2003:   (4:25 pm) The biopsy continues to heal well. It's still pretty sore and too painful when any pressure is put on it, but all in all I think it's the best biopsy I've had. Here's some good news - the jaw problems I was having have lessened to a great degree so maybe it's not anything permanent after all. Also, I've noticed my normal walking is becoming kind of strange. It's like I have to walk with my legs bent, and they still feel especially weak upon exertion and with a shortened stride length.
Apr 7, 2003:   (12:25 pm) My biopsy seems to be healing well. A few times I inadvertantly stressed that hamstring muscle and it felt like it was tearing open. At least it wasn't on the outside. There hasn't been any more blood or anything since the 2nd day. My arms and right leg are totally wiped out from having to compensate for not putting any weight on the left leg and I'm having a lot of lower back pain from having to sit on chairs sideways.
Apr 3, 2003:   (8:54 am) Ooops, change 1. After having just changed the bandage for the first time I saw there is one cut, about 5". I guess I misinterpreted what he said before the surgery. He did take 3 samples though.
Apr 3, 2003:   (6:46 am) Yesterday wasn't a good day at all. It only took about 3 hours to totally burn out my arms and my right leg using the walker to get around. The way my muscles "overload" it sure sounds a lot like Post Polio Syndrome, though I've never had polio that I know of. My dad did so I'm still trying to find something which suggests it may have been passed genetically. No luck so far. Back to yesterday; I couldn't use the wheelchair because that would have meant bending my left leg which was in major pain anyways. I woke up at 3 am from the pain and took 2 of the pain pills they gave me so I'm doing a little better now. At least it's bearable.
Apr 2, 2003:   (4:43 am) I had the biopsies yesterday. We ended up doing 3 smaller ones at different areas of the left hamstring instead of 1 big one like was originally planned. *OUCH* I'm lucky I was able to sleep for 5 hours last night. Now we wait again. They said it would be about 5 weeks before we get the results. The doc gave me Oxycodone for the pain. They work good but not that long; about 3 hours or so. Needless to say, today is going to be a bad fatigue day after only 5 hours sleep. It's actually more comfortable sitting at my computer chair with my leg propped up on an ottoman, than it is laying down. We're going to see about renting a wheelchair with the elevated leg pad for a few weeks. That would work even better.
Mar 30, 2003:   (5:36 am) One more part of the puzzle. After looking up Temporo-Mandibular Joint disorder(TMJ), I think I can safely diagnose myself with this one. I've been having a lot of pain, numbness, and problems opening my mouth to eat properly for the past few weeks now. One web site mentioned that it can be a part of inflamatory arthritic conditions, Chronic Fatigue Syndrome, and Fibromyalgia. I'll check with my doc on this one next visit. The pain isn't unbearable, but gets pretty intense while trying to eat hard food. On March 7th I also reported the "clicking sound" which is a trademark of TMJ disorder.
Mar 28, 2003:   (2:09 pm) We did the consult for the biopsy today. It's scheduled for this coming Tuesday morning at the West Florida Hospital. This one should be able to tell us something. Based on the MRI results we decided to do one of the hamstrings. We won't pinpoint the area until Tuesday morning, depending on which part feels the worse (that's the part we'll get). Dr. Frost is going to do about a 5" incision and then take samples from 4 or 5 different areas. So I see another 6 weeks in recovery but it needs to be done.
Mar 24, 2003:   (9:27 pm) Good news! I believe the Garlique pills were causing an allergic reaction in my neck. I quit taking them on the 21st and today there is barely any discernable puffiness at all. Thinking back, it does seem like the puffiness appeared just after starting to take those garlic pills. I may wait a few days and start up again just to be sure. In any case I sure seem to be developing a lot of "sensitivities".
Mar 21, 2003:   (9:27 pm) Today I filed my claim paperwork with the VA. Something odd happened today too. My neck just above my collarbone has been kind of puffy on both sides for a while. Today the right side of my neck is really sore and there was a visible increase in the puffiness on the right side earlier today. As the pain has been slowly diminishing, so has the extra puffiness. So now it just feels normally puffy.
Mar 20, 2003:   (8:42 pm) Today I had my audiology appointment. High frequency hearing loss in the right ear. I don't think it's really affecting me though. Tonight the right side of my neck is pretty painful. I think it wants to catch up to the left side. Tomorrow I get together with the VA rep with my medical record.
Mar 18, 2003:   (12:15 pm) I saw Dr. Vandenberg again this morning. His impression is that what I have is very unique, in that what the MRI showed normally is seen in paralyzed, bedridden patients. They will call me back to set the biopsy up within a day or two. This time we're targeting an area, most likely my rear, which showed the abnormalities on the MRI. What really irritates me is that this is what my former rheumatologist wanted to do before, but it was cancelled for my trip to Walter Reed because we thought they would "do everything" there. What a joke that was. He also said the previous biopsies were done "blind", without using an MRI first. He did say it's not Becker MD though, because that would have shown as elevated CPK and also during the EMGs.

He wants to put me on a med called Mobic, used for arthritis patients to see if it helps to "settle" things, like the shoulder pain. However, when I looked up the Warnings for that med it cautioned about administering to a patient with a history of ulcers. I had duodenal ulcers as a kid and may have an ulcer now. So I'm waiting for a call back from them to see if he wants me to start the med or not.
Mar 14, 2003:   (5:45 pm) Dr. Vandenberg's office called today and wanted to schedule another biopsy. The labs came back negative for heavy metal. The MRI showed a marbleized pattern of apparent partial fatty replacement of the musculature of the glutes, hamstrings, and to a lesser degree the quadriceps. Becker Muscular Dystrophy was mentioned in the MRI report so I'm sure that's what we'll be looking for with another biopsy. I asked if it were possible to test the samples that are probably still at the University of Alabama hospital, vice having another biopsy (my 4th). My next appointment with Dr. Vandenberg is this coming Tuesday, so we'll see. At least if it does turn out to be BMD, it's not one of the really severe ones. This finding would also be consistent with my brother having bicep pain starting about a year ago and he was also recently placed on meds for a heart arrhythmia.
Mar 09, 2003:   (1:23 am) This past Thursday (the 6th) I had an MRI done of my legs. After spending an hour and fifty minutes in the tube I wasn't even able to get up by myself and had to have help to get off the table and then have someone tie my shoes when I got dressed. The whole time it felt like my lower back was going to snap and my thighs felt like they were on the verge of cramping. Don't ask me how I did it but I did manage to hold still during the "shots". They did use the dye on this one too. Today my walking is near baby steps again. My legs, rear, neck, shoulders, and arms continue to be very painful; almost a "pinched nerve" type of pain, when pushed to the movement limitations. You couldn't pay me to stand at parade rest right now because my shoulders won't let my arms go that far behind my back. Also, yesterday the left side of my face was twitching pretty good for a while. Only a few times today.
Mar 07, 2003:   (8:07 am) Here's something new. I have a "clicking sound" when I open and close my mouth. It sounds like it's in my left ear (remember I've had pain and cold spots in the left side of my neck for a while now. As I push on both sides of my jaw right now it feels like I have decreased sensation on the left side. I also found out that this could be TMD, or Temporomandibular Disorder; which by coincidence is listed as a possible co-symptom for Fibromyalgia. Even now there is a cold spot on the left side of my neck that goes up to below my left ear.
Mar 05, 2003:   (8:02 pm) Another bad fatigue day. The left side of my neck has been really sore and of course it is accompanied by the usual cold spot. My right arm and shoulder are so sore tonight that I can barely touch the top of my head with my right hand. The right side of my neck is pretty sore too. Any movement of my head is made cautiously; at times becoming painful. I think the cold spots should be a key symptom. The past few days they've been on my neck, left upper thigh, left side of my stomach, and both feet.
Mar 03, 2003:   (1:05 am) You can tell by the time that my sleep is in the bucket again. Today was another bad fatigue day. I tried to lay down a few times out of shear exhaustion but was unable to get comfortable enough to sleep. Both sides of my neck are sore now, and I have a cold spot on the left side of my neck.

I was just thinking how strange this has been progression-wise. First the biceps, then almost a year and a half later my legs and lower back. Then it was another year before my triceps and shoulders were affected. Now my neck. There should be some kind of super computer you can punch all your symptoms into and get a read out of possibilities. This is just too strange.
Feb 25, 2003:   (6:51 pm) I had a very interesting visit with my new Rheumatologist today, Dr. Vandenberg. He thinks there might be some Fibromyalgia in here somewhere but is leaning more towards a metabolic disorder of some sort. We're doing labs for heavy metal poisoning and also an MRI of my legs. What he said makes sense about it not being primarily Fibromyalgia. Most Fibro patients primary complaint is pain. Mine is more movement restriction (or muscle use) related which only turns to pain/burning with use or overuse.

As far as heavy metals go, I forgot to mention to him that we use beryllium tools in EOD. I'll have to call him tomorrow and let him know about that. It will be interesting to see how this ends up. My follow up is set for 18 March. We should have the MRI and lab results by then.
Feb 23, 2003:   (11:06 am) Having a normal tired, sore day today. After I quit the Snore Stop the daily headaches stopped too! Yesterday my left hip was in pain for a while. I haven't felt anything there in quite a few months so I wonder if it's just circling back around again. My arms (triceps) and shoulders are still real bad. The left side of my neck is too. I still get an occasional spasm in the neck but not like how it started out. I almost forgot to mention that I failed my 3rd audiogram last week, so now I'm waiting for a referal for an Audiologist.

I'm looking forward to my doctor visit on Tuesday. In summary here is what is happening now:

  • Fatigue is constant, varying from mild to overwhelming, mostly towards the overwhelming side.
  • My arm and leg muscles in general have no endurance and I'm still walking like an 85 year old man.
  • I still get the "cold spots" all over my body. Different places at different times.
  • Overdoing any physical activity will put me in my wheelchair.
  • I'm having trouble with things like washing my feet, combing my hair, reaching for anything high or bending and reaching for anything beyond the front of the refrigerator. At times I need assistance to get dressed/undressed.
  • I'm still getting stabbing pains off and on at the site of the leg biopsy.
  • Pain in general comes and goes in different areas of my arms, legs, lower back, neck, and rear.
  • Feb 17, 2003:   (6:34 pm) I've stopped using Snore Stop. Thanks to a friend with some good web references, which include the FDA and the Mayo Clinic, at least two of the ingredients in it are not recommended to be taken in ANY form and one is being considered for banning. In my condition I can't afford to play around with something that could have such drastic side effects (like heart attack, stroke, or seizures).

    Oh, I should have mentioned for those following along, that my Rheumatologist appointment had to be changed to February 25th. My autistic daughter is on anti-psychotic drugs and her appointment fell on the same day as mine (the 11th). I initially thought we could just change hers but she was about out of meds and they wouldn't renew her script without seeing her, which would have been after she ran out if they had to reschedule her.
    Feb 16, 2003:   (8:08 pm) Nothing new to report except that I've had headaches the past four days in a row. They seem to be coming more frequently. I've checked my blood pressure off and on and it's been normal. The nose twitching has about quit. I felt it once earlier today, just momentarily. Who knows what that could be related to?
    Feb 13, 2003:   (6:05 pm) Today has been interesting. Twice I've been hit with a real severe wave of fatigue, accompanied by extreme dizziness. The first time I had just sat down, or I'm sure I would have fallen down. The second time I was already laying down. The dizziness only lasted for about 10 seconds but it was quite intense. Another thing too, is when I was laying on my right side the muscles in my right shoulder blade were quivering like crazy. This is a first as far as any reaction from those specific muscles and also for the dizziness. Right now I'm pretty wiped out.

    What I initially thought was trouble swallowing I now believe is from thick secretions common with Fibromyalgia. It has been pretty constant and I also believe responsible for the severe snoring I've been experiencing for about the past 6 months. I started using the Snore Stop spray about 5 days ago and so far it seems to have a positive effect in reducing the snoring. Today I also started taking Garlique, garlic pills; which are supposed to help reduce bad cholesterol. Remember my physical a few weeks ago still showed that still slightly elevated.
    Feb 12, 2003:   (4:37 pm) The intensity continues in my shoulders, arms and neck. Motrin didn't do any good. I tried it for 3 days, 3X a day. No point in eating my stomach away if it doesn't offer any improvement. My nose continues to twitch off and on.
    Feb 05, 2003:   (11:57 pm) I had another audiogram at the Eglin Hospital. I'm at the bottom end of normal for my right ear between 3000-4000 so we'll be repeating the test again in two more weeks. What I find interesting about all this is that both vision changes and hearing loss are noted in some mitochondrial diseases. Remember I had to go to bifocals back around June/July 02. The fatigue and shoulder pain have been really bad lately. The fatigue practically knocked me out today. I'm trying Motrin to see if it helps in keeping the shoulder pain from waking me up. I'm pretty sure that's why the fatigue has been so bad. Too many sleep interuptions.
    Feb 02, 2003:   (5:58 pm) The past two days have been really bad with the soreness and fatigue. My neck is constantly sore on the left side now and the right is starting to get sore. The nose twitching on the left side continues 4 or 5 times a day. Walking has been inhibited primarily by the calf muscles and my hands have really felt swollen/weak. My shoulders/upper arms are constantly sore now and it's taking less movement to invoke pain.
    Jan 27, 2003:   (11:21 am) This nose twitching thing is starting to become really annoying. A few minutes ago my upper lip was twitching too! It doesn't hurt or anything and you can't even see it on the outside. *UGH*
    Jan 27, 2003:   (11:49 pm) LATE ENTRY: I forgot to mention that last Wednesday I had my audiogram. They said it was on the lower end of normal so it has to be repeated over the next two Wednesdays. I did have hearing loss noted on previous diving/reenlistment physicals. Other than that, on this med board physical everything was pretty normal except for a slightly elevated cholesterol and the obvious problems we're doing the med board for.
    Jan 26, 2003:   (10:31 pm) I'm having a really sore day today. I feel like I played in the Super Bowl myself (Bucs 48 - Raiders 21 WOOOOHOOOOOOO). My thighs, calfs, shoulders, arms, and neck are really sore. It's funny though, just the left side of my neck is sore, almost like a tightening of the muscles on that side. It's an overwhelming soreness that doesn't really become painful until I try to move beyond what the soreness is letting me move, which isn't much. I'm still walking like an 85 year old man.
    Jan 24, 2003:   (10:48 am) I had a pretty scary experience last night as I was getting ready for bed. My neck muscles on the left side were going into spasms. Not quite as bad as that "almost cramping" feeling I get in my legs, but enough to have me wondering what it would do if the muscles in my neck did cramp up. I'm sure I don't want to find out. It lasted for about 10 minutes and after that my pills had me asleep. I also noticed I had a lot of cold spots; on my feet, legs, side, also on the left side of my neck. Today the neck muscles on that side feel sorer than usual, but no spasms today, thank God.

    The good news is that I have an appointment with Rheumatology at the West Florida Hospital again on the 11th of February, thanks to my diving doc and Kathy Yount at the Eglin Hospital. I was initially supposed to return to my rheumatologist after the leg biopsy last July, but after the results came back from Alabama the med board folks at the Pensacola Navy Hospital thought it was time to get on with the board, so I wasn't allowed to return to him. I really feel we'll get some answers now.
    Jan 19, 2003:   (4:58 pm) Here's a wierd one for you. The past two days the left side of the tip of my nose has been twitching. Not consistently, but enough for me to notice it. I just finished walking to the back of my yard to untangle a wind chime, now I'm getting shooting pains from my leg biopsy site. I still think it's developed into a trigger point. Meanwhile my shoulders and triceps are still pretty bad. I know it's just from my moving around in my sleep, but you can't imagine being woken up feeling like someone just stabbed you in the shoulder with a sword. Thank God the pain isn't consistent, but movement related.
    Jan 14, 2003:   (11:04 am) Yesterday we finished up the physical for the med board; except for the audiogram which will be Friday. By the time I got home I was totally burned out from head to toe and could do little more than lay in bed and "try" to fall asleep. The whole body spasms that happen just as I start to zone out are really starting to bug me. It seems to happen about 90% of the time when I'm laying on my right side. Rarely does it happen when I'm laying on my left side. I don't lay on my left side much because of the pain from the biopsy spot on my left leg though. The pain varies in intensity but it's usually annoying and enough to keep me from being comfortable most of the time. So back on my right side I go.
    Jan 13, 2003:   (9:21 am) My shoulders continue to degrade. The pain actually woke me up early this morning. Doing simple things like putting on a coat or reaching into the fridge for something is becoming increasingly difficult. My rear is also painful today, which restricts my walking more so than usual. Again, no rhyme or reason as to why those areas are affected like they are.
    Jan 8, 2003:   (11:29 am) My shoulders and upper arms are really sore/painful today. There is no way I could even move myself over flat ground using a standard wheelchair. I think this is the worst my arms have been so far with no apparent physical exertion cause. When I palpate the sore muscles, it's like I can feel what I believe to be the "ropy bands" they mention for Chronic Myofascial Pain too. My calves are also pretty sore. The past few days I've noticed the cold spots appearing more frequently and over a greater portion of my body. I'd bet dollars to donuts that I've developed a myofascial trigger point at the site of my left leg biopsy. That should have been well healed by now (from July 02) but most days I can feel pain of various degrees radiating out of that spot, even to the point I can't lay on that side in bed most times.
    Jan 3, 2003:   (11:59 am) My shoulders are really on fire today, especially the right one. I can't think of anything I may have done to cause it either. Right now I can't hold either arm straight up over my head.
    Jan 1, 2003:   (7:36 pm) Happy New Year! The past few days my arms and shoulders have been really painful. Today my triceps are especially painful. Any muscle exertion at all and the pain scale immediately goes up to 10! My legs are still recovering from the other night when my wife had to be taken to the local ER by ambulance thanks to a kidney stone. Just the four-five hours I spent there following her for her xrays and cat scan was enough to do my legs in.
    Dec 20, 2002:   (6:41 am) Nothing much new to write about. The shoulder pain continues to be the main focus. One thing I don't know if I mentioned before was that my spine, running right down the center of it, has become really sensitive. I mean if the sheets, or a cat, or anything just barely touches it, my whole body jumps. It's not painful, just really sensitive.

    Here is a quick recap of the progression of this thing. The first thing that happened was severe pain in the biceps, which mellowed out after about 3 or 4 months to just generalized weakness and lack of muscle endurance. It took from May 2000 until Oct 2001 before it started affecting my legs. I then went through a period of severe pain in my upper thighs and hips, which again mellowed out to generalized weakness and lack of endurance. My shoulders and triceps started becoming painful a few months ago, as well as the calf muscles. I imagine the progression will be the same with these muscle groups. I have no reason to believe otherwise. I've had a "swollen" feeling, along with marked weakness in my hands for about 6 months of so. I'm just now starting to experience pain in my forearms. The degree of pain/limited movement depends on how much I attempt to do. The more I do, the worse a used muscle group gets. An example is how bad off I am after all the pulling/pushing on the arms and legs during a neuro exam.
    Dec 16, 2002:   (8:37 pm) First off, Saturday was the best day I've had for quite a while. I almost felt normal for a while! It eventually caught up to me in the evening though. Today was another first. I woke up with my legs and forearms really sore. I haven't really felt anything in the forearms before today. My shoulders are continuously sore now. The aciphex is still working great; still no Alka Seltzer since I started it. The rash was back yesterday too. I had switched to neutrogena soap. Now I'm thinking it may have been the shampoo. I'm going to experiment as soon as the rashes are completely cleared up.
    Dec 09, 2002:   (11:43 pm) My legs, arms, shoulders, and neck have been really sore the past few days from the neuro exam on the 4th. The good news is that the aciphex seems to be working well. I haven't taken any Alka Seltzer since I started it. No side effects that I've noticed either.
    Dec 04, 2002:   (1:48 pm) Yesterday Dr. Tucker, my diving doc came out to get an update on me. He had to do the standard neuro exam so of course today I'm sore from head to toe and extremely fatigued. The good news is that I'm getting a referal to the Ochsner Clinic in Baton Rouge, where they have a department that specializes in "hard to diagnose" cases. I'll have to remember to wear my "Just Say No To EMGs" t-shirt! Oh, he also prescribed a new med to deal with the acid reflux/heartburn symptoms. We'll pick that up tomorrow.
    Nov 30, 2002:   (8:18 pm) I woke up this morning with both shoulders REALLY sore. More on the right, because since they did the biopsy on the left leg I've tended to sleep more on right side. They were so sore I was "wincing" as I brushed my teeth. I can hold my arms up for about 15 seconds before the pain starts and my range of motion is diminished by about 50%.
    Nov 28, 2002:   (11:43 am) Last night and so far today my legs have really been sore, even with "almost cramping" in the calf muscles. Walking is really slow. My arms/shoulders don't have it in them any more to even use a cane or walker without quickly becoming painful themselves. At least I can be thankful to our Lord (and to the doctors even though the muscle/nerve tests were repetitive) for the things we have been able to rule out. I give thanks today that I can still even walk, when there are so many who can't even do that. Many many people are far worse off than I. So "Thank You", to the doctors who cared and to my friends and family that continue to offer prayers and support!
    Nov 25, 2002:   (11:59 am) Round and round she goes. Today my calfs feel fine (so far) but both thighs are sore from top to bottom. It's been just over a year since I've been able to walk right. Why can't I just have one day where everything feels good? Just one day?
    Nov 22, 2002:   (10:46 am) I haven't yet found anything that directly links this rash under my arms with what's going on with the muscles, but the rash is back. I incorrectly listed that I had switched to Pure and Natural soap and that eliminated the problem. What actually happened was I switched to Lever 2000 on Nov 15th. Yesterday the rash was back. I did switch to Pure and Natural today but I didn't notice if the rash was already there prior to it's use or not.
    Nov 21, 2002:   (2:02 pm) Yesterday we had the carpet professionally steam cleaned, which involved us moving a lot of things before they showed up. I limited myself to the lighter objects, ie. lamps, etc. but still ended up feeling and walking like a zombie within an hour. Some times I just need to see what the limit of my muscle endurance is. Apparently not much has changed with the exception of my triceps and shoulders being worse than before.
    Nov 18, 2002:   (10:49 am) Today my calfs don't feel too bad but I'm extremely sore in the right shoulder and left frontal thigh. I think I'm developing a trigger point at the site of my leg biopsy, which would be consistent with Chronic Myofascial Pain (CMP). My hands still feel swollen and generally weak. The fatigue is running about a 5 right now.
    Nov 16, 2002:   (11:19 pm) This past week has been strange. I've been baby-stepping but not because of my upper thighs, which feel swollen and sore (which has been a constant state for a while now), but because of the "almost cramping" feeling in my calf muscles. Except for right now my middle front left thigh is burning pretty good. The fatigue has ranged from "not too bad" to "gee, why bother getting out of bed, I don't have anything to do anyway."
    Nov 15, 2002:   (11:31 am) I figured out the rash mystery. It was the Irish Spring soap. What's funny about that is that I've been using that brand practically since it was invented, and the rash appeared towards the end of the use of one bar. So I doubt it was because they changed the formula or something.
    Nov 15, 2002:   (12:35 am) I forgot to mention, on the 13th I had a mental health screen at the Eglin AFB Hospital. The doctor didn't feel that any major psychiatric issues were affecting my case, and didn't deem any medication changes necessary. I ended up driving myself to the appointment because my wife was sick. I took my son in case I ran into any muscle trouble. Yesterday I was just generally fatigued and ached all over. A real low energy day.
    Nov 13, 2002:   (7:26 am) The indigestion and heartburn are picking back up again. Four times in the last two days, even waking me up early this morning. Overall I'm still feeling the effects of the bug and generally fatigued. My legs are pretty sore this morning as are my arms and shoulders. I think the cooler weather is having an adverse effect, which would be in line with Fibromyalgia. More than a couple of people in the Fibromyalgia newsgroup I belong to even stated they get the "cold spots" like I do.
    Nov 9, 2002:   (11:29 am) Last night as I was standing on the back porch, my left leg almost cramped up on me. So much so that I called for the walker, though I'm not sure that was a good idea. As I put my weight on the walker my arms and shoulders quickly became painful, but at least I got back to my chair without my leg cramping. I just woke up and both triceps and shoulders are painful. I also got heart burn real bad last night.
    Nov 8, 2002:   (9:54 am) Both shoulders and my left upper thigh are extremely sore. It's difficult to raise my elbow even with my shoulder. To try and go past that is painful. My rear feels like it's full of lead again too.
    Nov 5, 2002:   (12:50 pm) I woke up today with my arms and shoulders really sore. Taking a shower was painful at a few points. No doubt the shoulder weakness is continuing to where it's starting to affect my range of motion.
    Nov 2, 2002:   (5:38 pm) Today has not been a good day at all. The fatigue is so bad my vision is blurring slightly again and I have pain in my hips, rear, and thighs. Walking is very slow. I'm sure this bug isn't helping things.
    Nov 1, 2002:   (2:37 pm) Here's something else new. I'm getting a rash under my arms. This is the 3rd time it's happened in about a week and I'm trying to rule out if it's a certain type of soap, though we haven't made any changes lately. It's not from being outside sweating because I haven't done anything. The fatigue is really bad today too.
    Oct 31, 2002:   (6:40 pm) Yesterday I started coming down with the local flu bug. The combination of that and my muscles already being sore is not one I would wish on anyone. I have cold spots on both ankles right now too. I slept for over 12 hours last night, but right now I can't tell if that helped anything or not. My sinuses are normally, or should I say continuously messed up. Not just lately, I mean for years. The indigestion has calmed down a little. In the shower today I noticed a degree of discomfort in my shoulders as I was washing my hair. They are starting to feel more and more burnt out, just like my arms and legs.
    Oct 24, 2002:   (10:12 am) I had an interesting experience last night. One of my other computers is behind mine, as I sit in my chair. I swung around to grab the other mouse to fix a problem on the other PC and as I did I had my right arm out. It felt like I was shot in the shoulder/upper arm! It was a very quick, severe pinched nerve kind of pain. It diminished after about 15 minutes but I've had extra soreness in that shoulder since then.
    Oct 21, 2002:   (8:23 pm) Today was one of those "I'm so tired of sitting around doing nothing" kind of days, so, I committed myself to cleaning the garage a little. I didn't even do that much physically. Now I'm paying the price. Upper thighs, rear, and both arms are extremely sore/painful. I also have cold spots on both arms. It amazes me how little it takes to penalize myself. This is slowly getting worse. Almost so slow as to be unnoticeable except when I compare now to six months or a year ago.
    Oct 19, 2002:   (12:03 am) I'm having a miserable night tonight. Earlier this afternoon I had the bright idea of trying to walk normal just to see what would happen. I walked with a normal stride, at normal speed for about 15 seconds before the lactic acid burn started. As I type this both my upper thighs are burning and feel swollen. They feel like they've been beat on with a bat. I took my pills a few hours ago hoping they would put me out but no luck so far. It could be a long night.
    Oct 16, 2002:   (11:43 am) After reviewing my Athena lab results from the last biopsy, I can see they didn't do ANY mitochondrial testing. All that was ordered was a Myoglobinuria Myopathy Profile. So all I know now is something else I DON'T have (which I never suspected in the first place). That profile is a logical rule-out given my symptoms, but again, it's NOT mito testing.

    Here's something interesting I just found that links mitochondrial defects with Fibromyalgia. Click HERE. Also note that we had attempted a Pyruvate/Lactate Ratio test previously (12 March 2002), but the lab it was sent to messed it up.
    Oct 14, 2002:   (9:47 am) Another first today. I was just awakened with my left calf muscle cramped! *OUCH* It didn't last long, less than a minute. I can't even remember the last time I had an actual muscle cramp. Yesterday both my tricep muscles were extremely sore, more on the right. Any flex at all caused a good deal of pain. They're still pretty sore today but not as bad. My shoulders feel pretty sore and weak too.
    Oct 09, 2002:   (7:32 pm) Up early again thanks to the acid reflux symptom I've been having for a few months now. I'm really starting to go through the Alka Seltzer. Seems like at least once a day. Yesterday, and today, my arms, neck and shoulders are particularly sore. The left hip is still pretty sore, but not as bad as the past few days. My legs have been so weak that it's a real challenge to even pick something up off the floor.
    Oct 04, 2002:   (10:43 pm) Another bad day today. My legs, arms, and left hip are extremely sore. The fatigue is really bad too, which isn't surprising. I doubt I'll be up much longer. I don't even have the energy to take a shower.
    Sep 27, 2002:   (6:10 pm) I had my wife take me to Walmart today. We decided to use their wheelchair instead of taking mine so I ended up walking about 40 feet to the front door. It didn't take long to realize that from handicapped parking to the front door the parking lot has a slight uphill grade to the entrance. Within the hour I was back to taking baby steps again and both upper thighs are extremely sore. I was hoping it wouldn't happen this time, that maybe I had improved from being so inactive. No such luck.
    Sep 18, 2002:   (10:18 pm) Just another normal (abnormal) day. I hit the jackpot on my research quest. I've found information that links my hands feeling swollen to Fibromyalgia. On another web site I found where a study was done with FMS/CFS patients that showed excessive lactic acid production which further compounded the pain. That's been my chief complaint - the lactic acid burn! Hello? Is anyone out there? Another web site I found, which I saved, indicated that people who show high lactate on the Ischemic Forearm test (like I did) could potentially have mitochondrial disease. One of their subjects did.
    Sep 15, 2002:   (12:25 pm) My quadriceps are extremely painful today. My rear is also very sore. Not from doing anything in particular either. My shoulder involvement continues to increase. It occurred to me that I'm not using the cane or walker as much these days because doing so is extremely painful for my arms after a very short time. I'm feeling more fatigued than normal today too.
    Sep 13, 2002:   (11:32 am) The results from the 3rd biopsy came back normal. I'm not sure what tests were done exactly. The only thing I do know is that half the mito patients end up needing a live tissue biopsy before getting a dx. Frozen samples don't work in most cases. I've also come across info that seems to fit with a combination of Fibromyalgia and Chronic Myofacial Pain (FMS/CMP). Of the large list of symptoms for that combination I have at least 21 (which includes Restless Leg Syndrome) on an ongoing basis, and the single Rheumatologist I've seen didn't even do the tender point test for Fibromyalgia. I've done it on myself and came up with all 18 tender points. Only 11 are needed for a dx.

    The mix of FMS and CMP confuses a lot of physicians. A lot don't even believe they are separate entities. FMS by itself doesn't cause the mobility problems I've had, CMP does. CMP can also account for the drooping eyelid, also normal for Myasthenia Gravis. Even then, with all the neurologists I've seen (about 30) and all the EMG/nerve studies, I don't believe any have done the Single Fiber EMG which is needed for a Myasthenia Gravis diagnosis. They've all done basically the same tests over and over with practically the same results. I don't even want to think of all the money which has been WASTED!

    Meanwhile my Limited Duty status is up for review at the Pensacola Naval Hospital. Depending on what I hear next week I think it may be time to start lighting some fires under some people. I'm not going to take this continued run-around sitting down. The doctors I really needed to see, especially the ones that could have positively ruled out mito disease, don't accept military insurance (Tri-Care). So we'll see what happens next week. Same Bat-time; same Bat-channel.
    Sep 9, 2002:   (7:31 am) Yesterday I did something to my lower back. I was in excruciating pain, barely able to move. I just wonder if it's part of what's going on since I obviously wasn't doing any heavy lifting. My triceps are toasted (burnt out) from having to use the walker yesterday. Also, lately I've noticed myself using a lot more Alka Seltzer for what I can only describe as an acid reflux type of symptom. Some times it even wakes me up at night. Another mito symptom? Got a letter on Saturday saying my doc at West Florida, Doctor Clark, is moving on so I'll be seeing someone new after I get my Boston results.
    Sep 4, 2002:   (7:13 am) Yesterday I pushed myself too hard again and ended up barely able to move. My arms and legs are both really sore today. Speaking of today, it's my actual 29 year anniversary of joining the Navy. Hoorah for me! It would be great if I got a call from the UAB hospital with some positive news (like something similar to a diagnosis).
    Sep 2, 2002:   (7:27 am) I woke up with both my arms really sore from the shoulders down. I don't believe I did anything to bring this on either. Once again it is painful to pour a cup of coffee. Is this recycling? Seems like it.
    Aug 25, 2002:   (10:24 am) Night before last I changed out the wax ring on one of the toilets. All the stooping/kneeling down quickly became painful and my upper thighs felt swollen. There wasn't room in the bathroom for anyone to help me. Yesterday I cut the back lawn. We have a power-drive mower so all I had to do was keep my arms locked and lean forward a little to control the forward motion enough so that my small stride fit with the forward pull of the mower. Nonetheless, by the time I was done I was sore from head to toe again, barely able to move.

    I talked to the UAB Hospital the other day and it looks like it may be the first week of September before we hear anything on that last biopsy from the Boston lab.
    Aug 22, 2002:   (9:27 am) After a really bad fatigue day yesterday, I'm really sore today. Legs, arms, neck and back. I'd give it about a 8 on a scale of 1 to 10. I haven't done anything to bring this soreness on either. I can walk without support but really slow with concentrated effort.
    Aug 18, 2002:   (9:44 pm) I've noticed throughout the day that my stomach muscles are getting sore too. It's extremely painful to even attempt anything resembling a sit-up.
    Aug 18, 2002:   (10:38 am) The soreness continues to increase in my shoulders. It's even painful when I raise my right arm to put my bathrobe on or even just raise my arms over my head.
    Aug 14, 2002:   (8:50 am) Not a whole lot to report, just felt it was time for an update. My deltoid and tricep muscles (shoulders and back of my arms) are definitely under fire. Funny how this seems to affect muscles in groups. Whatever it is, it progresses bilaterally. Once it has "hit" a muscle group, then each muscle set in that group is fair game for overuse fatigue individually. Still no word back from the Boston lab on my last biopsy.
    Aug 8, 2002:   (8:14 am) Here's another example of how fast I wear out now. Yesterday I used a pair of hand clippers to clip the grass around my patio. I only made it about half-way (about 2 minutes) before the muscles in my right arm and hand fatigued completely. I thought I was going to have another paralysis event, like I have 3 times since last December. I had a major attack on my right hip within about 30 minutes. I had to be pushed around in the wheelchair for most of yesterday. Feeling a little better today after some decent sleep, but getting up and down and moving around is still painful and requires a great deal of effort and additional support.
    Aug 3, 2002:   (7:34 am) Don't ask me how or why, but I'm up now after only getting to sleep around 3:30 am. I ran out of Elavil because either the docs office at West Florida kept forgetting to call in my prescription or CVS kept losing it. Anyway I'm a total wreck. Looks like whatever this is, is working on round 2. My arms are getting painful again, also my shoulders lately. I went out for a little while yesterday and while I didn't walk very far (using my cane for support) I did walk up and down some slight inclines (another driveway). My legs are wasted. I couldn't have walked over 100' total during my outing yesterday.
    July 30, 2002:   (1:24 pm) I didn't get to sleep until about 5:30 this morning. The Restless Leg Syndrome was really acting up. That's unusual because the Klonipen normally takes care of that. So I'm totally wiped out right now and will probably end up back in bed before too long. Yesterday I tried the heel to toe walk again and didn't do very well. I even tried to walk at normal speed and only made it about 10' before I started jumping and shaking. My legs started the old lock up routine shortly thereafter.
    July 29, 2002:   (3:33 pm) I slept for over 10 hours and still woke up with both of my upper thighs really sore. The fatigue knocked me back down again for another 3 hours. My upper thighs are still really sore. The uppermost part of each actually feels swollen. My left hip is bothering me again too. I don't think I'll be up very long. Just way too fatigued. :(
    July 28, 2002:   (7:05 am) I just woke up with both my tricep muscles severely sore, painful when flexed. I've had minor weakness in those muscles before but I haven't had any real pain like today. The left side is worse than the right, and the skin feels cool. I can't think of anything I may have done yesterday to cause it.
    July 23, 2002:   (7:26 pm) Another bad day today. I feel like I've been beat on with bats from head to toe. Well, actually the only parts of me that aren't sore are my head and my toes. Walking is real slow today.
    July 17, 2002:   (9:54 pm) I called the hospital today and they said the tests they did on the biopsy was normal, which is what we pretty much expected. So now the other sample will go to the Athena Lab for specific metabolic and mitochondrial testing. I'm guessing it will be about 6 weeks before I hear anything. Meanwhile, I took the rest of my stitches out yesterday. My arms are toast from having to use the walker. The cold spots are migrating to my thighs and arms now. The fatigue has been really bad.
    July 15, 2002:   (4:34 pm) It's been a week and they said the stitches could come out, so I removed half of them. I didn't like the gap underneath so I left the rest in. I'll give it a few more days. It's still pretty sore but I don't see any redness or other signs of infection. It's probably just the muscles underneath that are still sore. Hopefully I'll hear something about the biopsy results from the doc tomorrow.
    July 12, 2002:   (2:17 pm) I'm recovering well from the biopsy. The doc did a great job. I don't even have any bruising around the incision site. It's still hard to put any weight on that leg and the other leg is about to go on strike from having to carry the load. My arms and hands are still very sore from having to use the walker for 3 days when I couldn't put any weight on the left leg at all. The cold spots continue. Lately I've even had them in the calf muscles.
    July 08, 2002:   (5:40 pm) Just returned from the University of Alabama Hospital. We did a biopsy of the left leg this time. This makes the 3rd biopsy (first one they did and I think they got it done right). I may know something as early as a week from tomorrow. Rest time. Oh, and my thanks to Dr. "G". While the biopsy was going on I could hear an EMG being done in the next room. I was happy I was in the room I was in. :)
    July 03, 2002:   (11:04 am) I'm back to my normal state after the last neuro exam. Everything looks like a go from Tri-Care so I'm really looking forward(?) to that biopsy on the 8th. I'm praying we really get some answers this time. My neck is a little sorer than normal from wearing bifocals and having to move my head more to get around that little blur line. If you've worn bifocals you know what I mean. It seems that my shoulders are slightly weaker as well.
    June 25, 2002:   (8:16 am) I still have not recovered from the neuro testing of 7 days ago! The fatigue continues to put me down 3 or 4 times a day and the cold spots on my knees and feet continue off and on. Today the focus of soreness/pain/weakness is my right upper thigh and left rear. I can't wait to find out what this is.
    June 21, 2002:   (10:31 pm) My legs have just taken a turn for the worse again. I can barely walk by slowly, real slowly, shuffling my feet. This is how it happens. Wham! The main focus of pain and burning is the upper/outer thigh of the left leg. My range of motion is severely limited. I would be using the walker if my arms weren't so sore.
    June 21, 2002:   (8:06 pm) My arms and legs are still VERY sore from the neuro exam on Tuesday. Walking is very slow and controlled. Yesterday I had the cold spots on my knees and on the tops of my feet again. Nothing new really.
    June 18, 2002:   (6:34 pm) Just returned from an appointment at the Neurology Dept at the University of Alabama School of Medicine in Birmingham. Had another EMG series run which turned out normal once again *OUCH*. This doctor actually invoked the pain I've been feeling in my muscles by various types of activities. After the EMG he ordered another biopsy for metabolic and mitochondrial analysis to be reviewed via the Athena Lab (which is the right one for mito). Tomorrow I'll get the Tri-Care approval (keeping my fingers crossed). If so, we'll do the biopsy on the 8th of July. I'm pretty whipped from the days activities . My arms and legs are really sore from today. Walking is very slow with small steps. Rest time.
    June 12, 2002:   (12:06 pm) I'm having a rough day today. I ache from head to toe and my arms and rear are really sore. I feel like I'm in a zombie movie; about halfway into turning into one! Getting up and walking is painful. The ache persists constantly. The pain comes and goes as I move.
    June 11, 2002:   (6:36 pm) Recovery seems to be getting slower. From the activity on the 8th I'm still almost at the baby-step level and my arms are still too sore to even use the walker. At least I've been sleeping good but it doesn't seem to matter as far as muscle recovery goes.
    June 8, 2002:   (7:40 pm) Ooops, I did it again! *Great name for a song eh?* Today I thought I would help with the yard work. All I did was use the hand shears to edge around the back patio and half of one flower bed. Just from stooping down a few times it feels like both my upper thighs have been beat on with bats. My arms are extremely sore and I have very little grip strength in my right hand. Live and learn.
    June 7, 2002:   (7:51 am) Nothing real unusual lately. I've been sleeping a LOT better since switching back to Elavil and taking the Clonazipam nightly. My arms are a little painful this morning. The legs are still very weak, but not much pain like I've had before, though yesterday I had more burning along the front of my thighs. My hands still feel puffy and my grip strength is pretty low. I have an eye exam appointment today so hopefully the doc will catch something everyone else may have missed.
    June 1, 2002:   (8:09 am) Another first. I'd say for the past two weeks or so my hands have felt slightly swollen and I've also noticed a swollen feeling in my feet and ankles. Yesterday the hand swelling was visually noticeable (to someone other than myself). Also, two days ago I suddenly had a sharp pain in my left ankle. It felt like my ankle wanted to collapse, but it didn't. The sensation lasted only about an hour but it was intense enough that I couldn't put any weight on it.

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