I had a bit of a dip after the festivities and reluctantly considered upping from 8mg to 10mg pred as I seemed to be very lethargic and unenthusiastic, with headaches and general aches. However, yesterday I got busy organising myself into positive outcomes - had a first Bowen therapy session which saw me in bed at 9.30p.m. for a 9-hour sleep, rather better than the usual 5 or 6 hours! Today, feeling energised, I rang my GP for one more try at a referral for a Dexascan, having been refused several times. After a bad experience with AA I said I did not want to take bisphosphonates and would like the Adcal alternative (which has never been mentioned as an option) - hey presto! I am being referred for a scan - why didn't I hit on this idea before... anyway, feeling that gentle persistence (and a change of tactic) pays off. )
All the Bowen enthusiasts on this site, thank you for pointing me in this direction - such a great site for exchanging ideas and experiences. My mantra is: if you feel better, it works; and be glad!
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Slowdown
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So pleased it has done something for you - as I say, it isn't JUST pain relief, it has other benefits too that are probably on a par with but cheaper than a spa day!
"My mantra is: if you feel better, it works, and be glad!" - absolutely my view too!
The benefits began when I emailed my local Bowen therapist and got an appointment .. so much is out of our hands that anything we can do to be pro-active gives us a much-needed psychological boost and regains a little bit of control.
As for the dexa scan you gave me some useful links to Bristol and Southampton, and I was on the verge of using them but because of how I feel today, I had the confidence to address the thorny issue of the bone scan with my GP - and a little triumph is good for the soul!
Perhaps I'll do the spa day as well!! thanks for the idea..
Yes, you are not alone in finding that taking hold of the "thing" helps return a bit of control to a life that has suddenly spun off the road. Some people do it with diet, others with exercise. I like Bowen as an add-on for all sort of reasons.
I remember going back to the hospital after a very junior doctor (I assume, she could have been a student) made a complete mess of my discharge stuff. She was rude, finally flouncing off telling me I was "interrupting the coffee break", leaving me in tears in the middle of the corridor. I had a follow-up with a more senior doctor a few weeks later - in the meantime I had got my head around some of what was going on and - even more important - had had a couple of sessions at the pain clinic so was feeling almost human. I asked the questions I'd worked out, showing the doctor the discharge letter and stuff. I could see steam coming out of her ears! That made such a difference - now I knew it wasn't me being sensitive - the stuff was WRONG. This doctor sorted it all out - and I left feeling even better than when I'd walked in.
We don't have to leave it all to the medics - we also have some responsibility to do what we can to make our lives less uncomfortable. Pred does a lot - the rest is up to us and there is a lot we can do, whether it is resting appropriately, watching what we eat to help avoid the weight loss and so on. A bit of pampering always raises the spirits - and if a bit of Bowen pampering also helps remove a bit of pain and helps us sleep better into the bargain, all the better!
Yes, a little bit of pampering and taking charge of the situation is essential. Very glad Bowen worked for you and congratulations for grasping the nettle in both hands!
thank you! I just 'went with the flow' of general well-being .. sometimes we can, sometimes we cannot find the impetus, no good forcing it. Just wanted to share a little good news, and to thank everyone who makes this site possible.
Slowdown, I fully understand what you have gone through on this, I have had a similar experience! I decided that AA was causing many problems with me, palpitations, tremors, unable to walk 10yds without support, loss of use of my muscles in my thighs, unable to sleep more than a 2 hr stretch at a time, probably with a 3-4 hr waking time in between etc, etc! Spoke to GP and he insisted it was side effects of Pred, but on reading different submissions on this forum, I decided for myself I was going to stop the AA as it seemed so many we're having the same side effects at different levels and putting it down to AA!
I stopped AA and I would say 90% of my symptoms stopped within 3 days, I started taking Vit D and calcium citrate, I explained what I had done to my GP and he told me he didn't agree and that I should go back to AA. I said that as I was going to see the consultant within the next 2weeks I would pass my actions by him. This I did, explaining what my symptoms had been; his response was that I was obviously allergic to AA and I should not be taking anything in that family of drugs! He wrote me a prescription for Adcal, confirming that I would not continue with the Vit D and CC that I had been taking. He also ordered a DEXA scan that I had been told by x2 GPs that it was not necessary and has written to the surgery, of which I have a copy of the letter outlining theses points. There are a few other points that needed clarification with the GP which he has done! 5-6 months after being diagnosed with GCA I feel as though things are moving forward, I am now down to 15mg of Pred from 50mg! Not saying its perfect but I feel a little more confident in things now. I also go to a medicinal herbalist who goes through my medication once a month and works out a tincture that is helping me with fluid retention, immune system problems, liver health, etc, etc! Again, I don't know how much this is helping, but I feel it is, and if that is the placebo effect, so be it!
Lillegirl, doesn't it feel good when you get some results after all the knock-backs! My GP (bless her!) diagnosed me very quickly and 15mg of pred later I was feeling great - but had no idea of questions to ask so literally swallowed everything she gave me. After finding this site, and Kate Gilbert's book, I am more confident of asking informed questions - seems to be getting results!
So glad you've been successfully finding ways to make yourself feel better and more in charge of all this bewilderment! As you say, whatever works benefits us both mentally and physically - lots of luck to you
I'm getting curious about AdCal which so many people mention. All I can find on the Internet is that it is calcium carbonate and Vitamin D so I don't know why one would need a prescription for it. Nor why it would be preferable to calcium citrate and vitamin D. Nor, for that matter, why it seems to be considered powerful enough to substitute for bisphosphonates. ❓
Adcal seems to be the 'go-to' recommendation if bisphosphonates are not tolerated. My GP referred to the scan as a way of determining my level of need (finally! six months down the line) for bone protection and calcium dosage. I'm not Vitamin D deficient but know that the Vit.D part of Adcal is to aid calcium absorption. I've been looking at the calcium carbonate v. calcium citronate debate, it seems inconclusive although c.carbonate is, on one site, recommended for the 'elderly' as they have less stomach acid to aid absorption.
I do eat mindfully, loads of veg, yogurt, fish, and I've just begun having Miso soup for lunch, bit concerned about the salt content but no MSG. Also, after your recommendation some weeks ago, I practise Qui Gong/Tai Chi and find that both energising and calming to the ever-chattering mind.
Just read your post on another thread about calcium and other micro nutrients, will be absorbing that!
Interesting. WebMD states exactly the opposite, that citrate dissolves better than carbonate in people with lower stomach acid. Calcium hydroxyapatite has been claimed to be better absorbed than other forms by people who are on prednisone. Guess you can take your pick, looks like a crap shoot!
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