Wonderful discovery

[Linny3]

Hi Everyone

At least I think it is a wonderful discovery. I have been suffering awfully the last few days with really bad back pain. I have many things wrong with my back including 3 fractures. Two were from a bad accident. The last just recently due to prednisone. Plus a ruptured disc. I just kept trying to ignore it but the pain was so bad!! I was thinking, maybe another fracture? ugh! Then I had a light bulb moment. I have been tapering the pred. slowly but I got to thinking could the pain of pmr have now settled in my back. I know the back isn't a usual place for pmr.to settle in. I got to thinking why not up the pred. for a day or two and see what happens. Yesterday I took 2mg more with my afternoon dose and laid down. When I got up the pain was about 60% better then it had been for 2 days. Today I stayed at the higher dose and my back is still very much better.

The pain is all thru my back from low back up to my neck.

Any one experience this kind of pain?

Thanks A Lot

Lin

[PMRpro Ambassador]

I have something similar - the pain clinic said myofascial pain syndrome. It was better at higher doses of pred but returned as the dose went down. Then I tripped and my entire back muscles went into spasm. I reacted badly to the first approach our local hospital tried (using infusions of painkillers and pred in the morning and valium as a muscle relaxant at night - worked very well but caused atrial fibrillation!). So then they sent me to the pain clinic - slow, using manual techniques to massage out the knots of inflamed muscle fibres and injections. But although it took several months it worked and I have had minimal problems since. Had a relapse some months ago but all sorted very quickly. I try to arrange physiotherapy appointments for massage and manual mobilisation well before it creeps up!

Myofascial pain syndrome is more common in people with PMR - it is caused by the same inflammatory substances as cause PMR but instead of being systemic they are concentrated in trigger points in the back muscles which can be felt as knots. When they massage them out you often feel as if you have a PMR flare as the inflammatory substances are released but it soon clears.

[Linny3 in reply to PMRpro]

Thanks for the response. Interesting about myofascial syndrome

[Griggser in reply to PMRpro]

I’m so glad I read this. I’ve been having some real pain issues in my back muscles and didn’t think about myofascial pain syndrome. On my last visit to the doc I did request some Physio for back pain and he was going to sort it. Hopefully when I get home on Tuesday there will be an appointment waiting for me.

[linda49]

Hi Linny3

Just to add my experiences of back pain and myofascial pain treatment. Like you I had car accident which bashed me up somewhat and resulted in compression fractures in my spine. Whilst the prednisone dealt with my PMR symptoms it didn’t help with the back problems and the pain that moved around from side to side and around the shoulder blade areas. Recently, a therapist started a clinic in our village offering myofascial release therapy. She works mostly as an equine therapist but has completed additional training to treat humans. I’ve now had 6 treatments and can’t believe the difference. She admitted she had never worked with anyone with PMR before so the first few sessions were gentle and exploratory for us both. I am surprised and delighted that this treatment is working for me. During the 2 -3 months I have been able to reduce the amount of paracetamol I’d been taking from 8 to 2 each day. I no longer find myself trying to “massage” the painful areas in my back and have ceased using the bio freeze spray for pain relief. At the same time I’ve reduced my Pred from 8 to 7.5 using DSNS method. I’ve tried other therapies including Bowen which sadly didn’t improve my condition so thrilled that this lovely lady has come into my life. Isn’t the universe wonderful? I’m hoping that I can keep well and maybe have a monthly maintenance treatment. At £40 per session I will have to squeeze something else out if my budget, but at the moment I feel this is a priority.

Without discussion of this topic on the forum, I doubt I would have ever considered myofascial release therapy. Thanks people.

Linda

[PMRpro Ambassador in reply to linda49]

You lucky thing! As a horse therapist she is probably better than average!

[linda49 in reply to PMRpro]

Yes you could be right. She did say she has learned to work intuitively as the horses can’t “tell” her where the discomfort is...... She said that sometimes it is a hindrance with human patients as they are convinced that the cause of the problem stems from a particular area or problem, when in fact it can often be something else. I just gave her free reign to treat as long as it was gentle and then I’ve given her feedback at the start of the next session. It seems to work ok....

[Linda369]

Hi Linny3,

The same thing has happened to me. All shoulder pain gone on the prednisone , but as soon as I start reducing from 15mg get a constant very low back pain. Never had this pain before, and not had any previous back problems either. This is now the 2nd time trying to reduce to 13mg. The GP only wanted me to be on 15mg for 3 weeks after diagnosis in May this year and first reduction was to 12.5, but 2 days in this pain appeared.I hope you feel better soon.

[Linny3]

Hi Linda369

Thanks for the reply. I know exactly what you mean. We seem to be in the same place. Dr. wanted me on 15mg for 2 weeks. I can't seem to stabilize under 15mg and it has been 3 weeks. I keep going back and forth between 15-13. I have decided to try staying at 14 for as long as I can stay there with minimal pain. The trouble with the back pain is I can't tell what is pmr and what is old back pain from other causes. I can't talk to dr. as she doesn't think back pain is pmr.. Fortunately or unfortunately when I take 15mg the back pain eases a lot. So we continue with trying to understand the mystery of it all.

Take Care

Lin