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Pipistrelle
Member in Phase 2
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Posted: Mon Sep 29th, 2008 18:32 |
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I’m at the end of Level 1 in Phase 2, and I’m having several very low IP days – a taste of things to come I'm sure,when all the cwd blighters have been killed! Before I increase dosage again, I thought it would be good to update where I am relative to when I started the MP, which was on 17 May 08.
Before I went on to Olmesartan I had a great deal of inflammation and pain in my lungs and torso on both the in-breath and the out-breath. All my muscles were weak and inflamed to the point that I knew I could not continue working at that time, as the fatigue and effort was too great. I had mild cardiac symptoms and very doomy thoughts and it was definitely time to start the MP! The first day on Olmesartan there was no inflammation and I could breathe without pain. What a relief. It was great to feel that!
Then followed several weeks of hormonal adjustments and IP merging into each other. At first I felt totally zapped all the time. It was an education in itself trying to work out what was going on and learning to manage the IP. I had a huge increase in muscle fatigue and pain that waxed with increased abx doses and was relieved a little by extra Olmesartan. For a few weeks my neck muscles were so sore and weak I couldn’t keep my head up for very long. This has gradually improved. I still have to be careful about turning my head.
It has taken 70+ days to traverse the first level in Phase 2. The cardiac IP has calmed down somewhat in the past week of this level, but cardiac IP increases in proportion to daylight exposure, even when wrapped up. So I have not been out much at all. I am returning to work on 13 Oct, and have decided to ramp up the phase 2 abx in small increments – everything the moderators and staff tell us is true – we will get there just the same taking it slowly, but with less pain from harsh IP. We all have to work out what ‘tolerable IP’ means to us. Like many with chronic conditions, I have had to abandon an old and damaging strategy of pushing myself through pain. I hope observing a kinder level of pain tolerance will enable me to thrive on the MP, and to cope with my job.
Improvements so far: from start of phase 1, I have had some tolerable jaw IP. My gums have stopped bleeding, and in the past month I have had no mouth ulcers (a problem for years). In the 2 years before starting MP, I had dental woes with toothache and had an extraction which did not do the trick! I now think it was probably IP triggered by the pre-MP therapeutic probe with mino. A purple scar from a dog bite 2 years ago has completely faded, I now have to hunt for it. Raised lumps on my torso go through cycles of going crispy then shrinking. My fingernails which had been weak and broke easily, are strong again.
I still don’t have great stamina and I tire very easily. But I am pleased with progress so far, and hoping for many more gains as the bacterial load gradually lessens. Returning to work will be a challenge but I will take it one day at a time.
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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Pipistrelle
Member in Phase 2
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Posted: Sun Oct 19th, 2008 12:51 |
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I have 3 B's and an E to report!
Bladder: as reported in the lifestyles forum, I used to have a cast iron bladder, but over the years with sarc had developed what I called hair-trigger urgency - and would often find that I lost control whilst undoing zips etc on trousers - very inconvenient - and could finally understand why so many older people wear elasticated waists!!! So much quicker when in danger of getting caught short! So it feels like total luxury to be back to cast iron bladder again - some of my early IP was in and around the bladder area.
Bowels: 35 years of irritable bowel cramping and misery has faded out, for the most part. Just occasional gut IP which responds to extra Olmetec. WONDERFUL improvement.
Bunion: in the 6 months before I started the MP, I was in constant pain from the big toe joint on my right foot, which was hot and inflamed and sore to walk on. Now it is no longer red, angry and sore, and I can walk without pain. Marvellous.
Eyes: I had a grey/black floater in my right eye which was always there and very distracting. It has gone. My eyes had a lot of IP some of which is continuing but on a lower scale, and more episodic than constant. Generally my eyes are a lot more comfortable than they have been for a very long time.
And I am happy. I hadn't realised quite how the whole package of sarc symptoms had gradually been whittling away my inner contentment and resilience. Barring episodes of neuro IP, my baseline inner contentment is returning, and doomy thoughts have receded.
I am so thankful to Dr Marshall, all the research team and staff, moderators and advocates. Thank you from the bottom of my (healing) heart.
Pipistrelle
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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