Alternative therapy, the continuing story

If anyone wants background on this, please refer to my previous posts, available by clicking on my profile. For the past few weeks my visits to physiotherapist for low level light therapy have been cut back extremely. For a while we tried fortnightly treatments, but I began to feel simply quite unwell in myself. I had zero energy and developed new pains down my right side, felt like something sort of wrapped around my ribcage. Attributed that to overdoing the Nordic walking. Anyway, long story short, I decided to have weekly treatments at least for the time being. (For several months I'd had two treatments a week.) I also have remained at a pred dose of 4 mg. This seems a perfect time to experiment to find out if LLLT will be helpful in controlling pain without my having to increase pred. After a couple of weeks I'm definitely feeling better, and after the third of three consecutive weekly treatments my energy level improved noticeably. Last week I felt better the first day but had slumped by the third or so. So far this week I'm feeling generally better.

Putting it all into context - there do not seem to have been signs of a cold or any other infection. Physical activity really not increased as I may have gardened, but I haven't vacuumed! PMR "niggles" persist, but have not worsened - that pain in my ribs did not feel like PMR as I remembered it, and it's nearly better, so probably just a non-PMR strain of some sort. And I've been at a dose of 4 mg for several weeks.

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  • Hi Heron,

    You say the pain in your ribs did not feel like PMR. Well that may be because it's not PMR, once you get down to low levels of Pred, you do get back the normal aches and pains of life that higher doses masked. One's apt to forget they exist when on high doses, and it comes as a bit of a shock to the system! The tiredness you mention could also be due to lazy adrenals!

    We all look forward to getting to low doses of Pred, but it's not always easy! But we will get there, eventually.

    Take care.

  • Yes, I believe I tried to indicate that - strain from Nordic walking, probably. But the LLLT is probably helping that even more than it can help with PMR! 😏😉😊

  • Glad to hear it. Anything that helps with pain without having to take ever more tablets is good in my eyes. But it might be an idea to go easy on the Nordic walking - your muscles are weakened by Pred, so don't over do it!

  • Ironically it's probably the weekly expedition to physiotherapy that did me in! Fifteen minutes to ferry. Fifteen minutes rest on ferry, fifteen minutes walk along harbour boardwalk to clinic. Treatment, followed by coffee break, about 80 minutes, followed by return walk/ferry/walk home. This week was much better than last!

    🚶💃☕

  • I do thoroughly enjoy your persistence to continue to try and learn at the same time. It reinforces that we are all different and respond so differently - may the various colours of your rainbow continue to shine.

  • Well, fear of pred is quite an incentive.

  • Absolutely - I am still treading the alternative route where possible whilst gradually tapering steroids - a little rough going but will try almost anything with caution that just might help me along the way:)

  • I do enjoy seeing your updates and the positivity it brings. You have done well to get down to 4 mg so quickly.

    I also get rib pain as I reduce. at times making difficult to breathe deeply at all. I think of it as withdrawal pain and wait for it to clear. which it does.

    I am now on 5 mg but split in half so two doses a day. Last week I went up to London on the train to go to the theatre with my husband for his birthday. It was very enjoyable but quite exhausting. We left home at 5 pm and got back at 11.30. Unfortunately, I forgot to take my 6 o clock dose and began to stiffen up by 10 pm. By the time we got home and I took the dose then, I was in extreme pain, including ribs, arms, neck and hips. 12 hours later I felt better. I won't forget again! I hope.

  • How long have you been splitting your dose? I haven't felt a need to do that, at least not yet. I tend to feel pretty much the same all the time, taking pred with breakfast at about 7:30. If there's any difference at all, I usually feel at my best late in the afternoon. It's interesting you reacted so quickly to the missed dose but I'm glad you recovered nearly as fast.

  • Yes, I was surprised at the reaction in such a short time. I started splitting the dose at 8 mg as I was stuck there and it seems to have helped me with reducing.

  • Got results of recent blood tests yesterday. Glad I had Vitamin D done because it turns out I'm nearing a toxic level - fewer pills to take now! ESR somewhat lower, now "normal" for someone younger than I, so that's good I think. Iron still too low. I tried 3.5 mg pred for first time yesterday, and seemed fine, so will continue that taper and see how it goes. Going to physio once a week for now, as fortnightly treatments seem not enough.

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