Update to very depressed and having pain, not knowing what to do

[Mstiles]

Hello everyone,

In my previous post I was having quite a lot of shoulder, neck, and sacral pain at 8 mg and had increased pred to 11 mg for 6 days. At 11 i was still in pain. The sacral pain was better. It seems to respond to ibuprofen which I took a few times but don’t want to use regularly.

I didn’t want to increase the pred more, (a familiar story), after reading everyone’s comments I had to admit it was a flare and I needed more, so I increased to 13 mg. Which is 5 mg more than the 8 mg.

I’ve been on 13 for 6 days, and the pain has improved 85-90%, Until today when I woke up with a stiff painful neck again when I look down. It mostly went away after I got up and after after pred. It’s not the shoulders, it’s the neck. Feels more like strained or tight muscles than PMR? Or is that just wishful thinking. Yesterday I might have overdone it as my sister and I got together and had a long deep conversation, not an argument, but just intense.

It’s so discouraging as I was at 13 exactly a year ago when we moved and I had a major flare! I stayed there for quite awhile and reduced slowly, lots of stress....another pause in January when my best friend was in an accident and on life support, she is now in hospice 6 months later and her death is now imminent.

Do you think I can go back down now more quickly since I’ve only been on 11 for 6 days and 13 for 6 days? Do I need to wait until no more pain at all before reducing again?

Last blood tests on 7/6 were sed rate 36mm/hr. (0-25)

CPR 1.4 mg/dL (<1.0)

I’m without a rheumy right now and my GP has been trying to sort the pain for me but doesn’t seem to be too knowledgeable about PMR/HCA.

More stress worrying about support from a doctor, who needs it!

Thank you

[SheffieldJane]

I wonder if holding tension in your neck during the intense conversation with your sister has led to this neck pain? I have had similar experiences and that exercise where you gently rotate your neck has been helpful. You might get away with reducing straight back to your original dose after 6 days, but only if the flare has settled.

I can’t remember if you are being treated for your depression, it has gone on for too long now. An anti-depressant ( the right one) can really help. It may be that forms of talking therapy have become available now, even on the internet. Ask your doctor. So many people are struggling right now.

That improvement in your symptoms was pretty spectacular. Personally, I would have been content to take my taper from there. Let us know how it all goes. 🌷

[Mstiles in reply to SheffieldJane]

Thanks Jane.

I do have a wonderful therapist, we do phone sessions as she is in Florida and I’m in California now. My GP has prescribed Zoloft for me but I haven’t started it yet.

I had unpleasant experiences with Lexapro, several times and it made me dull and not able to create and draw and paint, but maybe it’s time to try the Zoloft, nothing seems to be interesting to me now anyway.

By Start from there do you mean use the DSNS method I was using? or go back to maybe 9 in one go where I was pretty good.

I haven’t talked to my GP about my increase as she was sorting out a few other problems and doesn’t seem to know much about PMR/GCA but she did agree to prescribe pred until I found another rheumatologist.

[SheffieldJane in reply to Mstiles]

I meant back to magic number 9 and reduce by slow taper when you feel ready. I hope it works. I am glad you have super support. Good luck with the tablets.🌷

[PMRpro Ambassador]

The neck part could be myofascial pain syndrome - one of the pairs of trigger points it forms is in the shoulder muscles (trapezius). It leads to irritation of the rest of the muscle group and it tightens to try to protect itself. The pain and stiffness also goes into the neck. It is an area I need attention paid to on a regualr basis at the Pain Clinic. Therapeutic massage does help me a lot though others sometimes find it too intense. Warmth often helps. And MOS does crop up with PMR a lot - same inflammatory substances just in PMR they are systemic, in MPS they are located in these trigger points and in the muscle fascia.

Are you sure that your 8mg dose was still enough? Even a tiny bit too low a dose will let the inflammation build up until it is enough to feel. But look at what you have written - and you haven't included Covid-19 and its effects. Your friend is still a major factor.

I started on 15mg 11 years ago. At present I need 15mg for comfort.

[Mstiles in reply to PMRpro]

Thank you Pro.

Does any type of pillow or mattress help the MPS in your experience? I know I need new ones.

So difficult right now to get any type of therapy if it is MPS pain. We’re a mess here in the states in dealing with Covid. Not sure if a pain clinic is available here. Before Covid I’d gotten a referral for physical therapy and inquired if any of the therapists were familiar with PMR and none were so I took a pass at that point. Too many other issues to deal with.

Did you mean stress from the Covid pandemic and also my friend’s situation were stresses contributing to a flare and pain?

Can’t talk to my sister or son about this pain as neither are believers in PMR/GCA or prednisone.

[PMRpro Ambassador in reply to Mstiles]

Yes, that was exactly what I meant - hanging around there too, I know the feeling.

Pillows - don't know. Maybe worth some nice soft pliable ones? Pack around your neck?

But above all - back to a dose that worked. Remember this is also returning adrenal function territory, and Covid-19 plus personal grief is going to demand a lot there too.

[Mstiles in reply to PMRpro]

Thank you so much for understanding Pro, it means so much!

Also add on that we are now in “fire season” here in California, very dry, with the accompanying blackouts and possible evacuations. None yet thank god but it will last until November and rain comes back.

Maybe it’s not the best time to get into adrenal issues. If I can get my GP to prescribe enough pred, (more stress), maybe the best course is not to rush things until some of the stress gets better, hopefully.

[Mstiles in reply to Mstiles]

I’ll look for some MPS exercises online and try that

[Mstiles in reply to PMRpro]

Yes you certainly do know the feeling as a carer yourself while trying to care for yourself. ❤️

[Mstiles in reply to PMRpro]

Yes 8 mg might not have been enough. Looking back at my notes, I was having some intermittent pain, X-ray showed osteoarthritis in the sacral joints, trying to sort out what was causing what, and I was glad at last to lose a lot of the face puffiness after 2 1/2 years, I didn’t want to go up, same old story.

[Mstiles in reply to PMRpro]

How is MPS diagnosed?

[PMRpro Ambassador in reply to Mstiles]

Not sure really - a clinical dignosis probably.

healthline.com/health/myofa....

healthline.com/health/myofa....

It is a fairly new concept outside the Germanic area of Europe - we've acknowledged it for years!

[Purplecrow]

Hi, the others have offered wonderful advice... so My contribution is a virtual hug, and tell you I think you are amazing! It sounds like you have a huge amount of stress, and family who doesn't seem available for support.

I' m so sorry about your friend, losing a dear one is hard any time...in this crazy time of Covid, etc., it must be even more difficult.

Good for you , seeing a therapist. Take all the help you can get during this time, and medications could be helpful. There are lots of a drugs, with each a bit different. If one doesn't work for you, there plenty others to try.

Do know antidepressants can take several weeks for full benefit, and some have a short period of queasy tummy when you first take them. (Doesn't last long, and not too terrible). Your doc can help you find the one that can help you through this difficult period.

I live in Washington state, and know pretty well, the social issues we are all living with... l hope you can find some way to create moments of peace for yourself. I send you love and a giant hug.

Jerri