Report from the alternative treatments frontline

[HeronNS]

I have been getting low intensity light therapy about two times a week for several weeks. This morning I woke up with a sore back and after thinking about yesterday's activities decided it was a short trip into the library with an unexpectedly heavy box of books I was donating that had triggered the discomfort. Had my light treatment a few hours ago. Back is now perfectly fine. I really don't know if light therapy is helping the PMR because, of course, pred is controlling that so well, but all my other back issues are being helped. I would have expected my back to take at least a day or two to recover.

[HeronNS]

This morning I felt so well when I got up that I dropped my pred dose by .5 mg, taking 7 instead of 7.5. Hope I don't regret this tomorrow, but so far so good. I am feeling better than I have since the first euphoric month on pred!

[Hidden in reply to HeronNS]

Thank you for your updates on light therapy. I have been reading your updates with interest and have acquired and read a book by Norman Doidge that you mentioned a while ago. Really enjoyed it, thank you for posting it on this brilliant site. I can't find a practitioner in my area, unfortunately so, on a friend's recommendation I decided to try acupuncture as I have reached 8.5 mg pred after 18 months but still not pain free and rheumy wants me to try Leflunamide, but not keen. Still early days as first treatment just yesterday and she said it may get worse before improvement....so am hoping for good results soon! Ever hopeful!

[HeronNS in reply to Hidden]

I'd be interested to hear how the acupuncture goes. Some years ago I had acupuncture along with regular physiotherapy for some neck and shoulder problems and it was helpful. PMR may be a different cat though! BTW I've sent you a private message.

[HeronNS]

Second morning at 7 mg. Woke up with only the "usual" niggles so decided to take 7 mg again, instead of 7.5. Due for higher dose tomorrow, and another light treatment, so will decide in the morning whether I need 8 mg or perhaps 7.5 will do. Fingers crossed.

[HeronNS]

Took 7.5 this morning. So far all well, despite busy morning including light treatment and coffee with my son. I really feel the combination of strategies, including the dead slow method of taper, is really helping me.

[HeronNS]

Update. Third day at 7 mg. Feeling good, hope not just because of painkillers I took yesterday for migraine.

[HeronNS]

Update, continuing pred at 7 mg, occasional 7.5, using Dead Slow plan. Today after my light treatment the physiotherapist did what she called "dry needling" where she stuck a needle into muscles along either side of my spine, one point at a time, only for a couple of seconds. (Not at all like Chinese acupuncture.) Four stabs along one side, three (two very painful) on the other. This was, she said, to relieve "bad tone" where my muscles are apparently so tight they are compressing my spine. She said I might even get back a little of my one inch of lost height! That would be nice! Feeling pretty good right now.

[Hidden in reply to HeronNS]

You are doing well with those reductions. Good for you! Had my second session of acupuncture on Monday. This time she only used her fingers and no needles as she said the reaction I had last time was too much. Sore for two days but today feel great! I am thinking of starting my next reduction from 8.5 down to 8.

[HeronNS in reply to Hidden]

I had a second treatment of dry needling yesterday (she wants to get in three sessions before Christmas break) and they were not nearly as uncomfortable, she said the needles went in much more easily, meaning the muscles weren't all bunched up. Can't say I'm noticing anything different in myself, but anything that prevents physical stress must be good. I also forgot about pred until I'd left the house yesterday morning, so took my dose four hours late. A bit more uncomfortable than usual late in the afternoon, but back to normal today. Am at 7 mg now and hoping to be able to continue a slow reduction after another week at 7. Sadly, I have not noticed that my spine has sprung back any fraction at all of my lost inch, but that was not really to be expected anyway.

I didn't know that you could do acupuncture with fingers. Sounds like it should be called acupressure maybe? I guess it does take a while for the treatments to take effect, and then they are cumulative so we should be getting better and better! Let's hope!

[Hidden in reply to HeronNS]

Yes, maybe I should call it acupressure for now!

Forgetting the pred is something I worry about but am glad you remembered and didn't suffer too much. You may get your inch back eventually.

I'm still feeling positive but will wait til next week before I reduce again. I'm a bit nervous as I flared at 8 last time.

[HeronNS in reply to Hidden]

Yes, I'm thinking I may be stuck at 7 a bit longer than I had hoped. I know this is the point where a lot of people have to stay for a while. Plus my physiotherapist by adding in the dry needling was simultaneously reducing time with the light therapy, and she will be on vacation for several weeks over Christmas. She's got eight month old twins so I can't complain about her taking so much time off! I started seeing her just a few weeks after she returned from maternity leave. Just wish I could get one of her gizmos and learn to use it on myself, but they are a) expensive b) complicated (she fiddles with dials every time because the settings are carefully calibrated) and c) how could you treat your own back anyway!

[PMRandRA]

Heavy items are a problem for me too. I no longer ask a fit person if something is heavy, if it looks heavier than a feather, I won't pick it up or carry it. My upper arms and shoulder joints are my problem.

*sigh*

Gosh, just noticed this post is from 2 years ago! So now I wonder how you are Heron? 😁

[HeronNS in reply to PMRandRA]

PMRandRA, if you go into my profile you'll see numerous posts from me about progress. I am doing well, but pred withdrawal symptoms are keeping me from attempting to go to zero too quickly. Currently at 1.5, not sure it's quite enough but we'll see.