PMR and muscle spasms

First time poster, I’ve had PMR for over a year, I was down to five prednisone when I had a relapse. It’s been a yo-yo affect since that time. I’m now on ten milligrams and suffer from muscle cramps that have caused back pain, hip and leg pain. I get additional injections for the back issue. I’m unable to exercise without my back muscles spamming. My doctor doesn’t know if the spasms are a result of PMR or some other underlying issue. He has me drinking tonic water every night now. It seemed to help, but still had a few toe cramps. We are going to start a very slow decrease in the prednisone. Thanks for any input.

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Try magnesium supplements - pred makes you lose magnesium through the kidneys and whe it is low in muscles you can get cramps. I live in mainland Europe - it is the first thing the GPs say if you complain of cramps. Checking blood levels isn't meaningful - the blood robs the muscles (for want of a simple way to describe it!).

The back issue may also be due to myofascial pain syndrome (MPS) - google it. I imagine you are in the USA? Look for therapists offering myofascial release therapy or intramuscular stimulation. It is caused by the same inflammatory substances that cause the inflammation in PMR, in PMR they are systemic, in MPS they are in the muscle fascia or large muscle groups where they can be felt as hard knots of muscle fibres in trigger spots, in pairs on either side of the spine, in the shoulders, about rib level and in the low back, about where the baby'd dimples are. Good therapists will be able to work on the hard knots and disperse them. It doesn't happen overnight but it does work. Sometime syou may feel as if you are having a flare - that is the inflammatory substances being released into the system and they will be washed out as long as you drink plenty of water after a session and exercise gently, walking in the fresh air is ideal.

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If you can't afford a massage therapist who offers it... although if you can...run to one!!! It is the BEST! ... however you can also grab a hard rubber lacrosse ball and press it between you and the wall.... and find those sore spots and hold..then roll a bit. start with your knees bent and you also get some muscle work out on the legs by squatting and lifting (if it doesn't hurt your knees) and turn towards the wall also. Just don't rub up and down the spine... you want the muscles and the fascia..not the bone! It is BLISS

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Ditto what the earlier posters say... PRMpro mentioned magnesium..i have discovered that magnesium,, vit D, and Vit B Complex make a great cocktail. The combo has ended my nightly misery of restless legs, foot, leg and thigh cramps❣️

A nurse was trying to get a blood sample for lab, and told me i was dehydrated!!

She told me I needed to drink non- caffeinated beverages, eg.water, etc. One 8 oz cup every hour when I’m up..

This small change has given me back a peaceful night time.

Kind regards, Jerri

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"It is BLISS"

Hehe - speak for yourself!! The rehab doc told me to try that - I simply couldn't and the pain was excruciating. I suspect if you start early enough it can reduce progression but by the time I was told to try it, it was a bit late...

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So! Not so blissful!!! ouch. For me at first all my muscles HURT so terribly..but only when I USED them..like trying to lift something.(or hold something or stand or sit or roll over in bed or walk ...etc etc etc I could go on and on as we all could!!!) .but if I pressed on them they didn't hurt. Before I was diagnosed I went to massage therapist and it hurt but not terribly and I thought felt better after..but the pain came right back.... With the prednisone now, I am lucky there is no pain.

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I do get massage on our health service - you just have to wait a while!

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OMG you would NEVER get a massage with our health care. Although I think they have added chiropractic at long last!

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It is THERAPEUTIC massage, manual fascial mobilisation and so on.

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Yogabonnie, Physiotherapists may do massage if it's part of what they think will help you. Physiotherapists have given me massages for various conditions over the years, and as I was not particularly informed about treatments, etc., this was completely what they were doing not anything I asked for. It was deep massage of affected area, completely unlike the gentle and what I found rather annoying massage recommended to me when I had undiagnosed PMR.

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Does occasionally need gritted teeth though!!!!!!

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Yes, I found this when I had the rotator cuff treatment!

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Agree! I have had PMR since May 2017, treated with Pred since JuIy with startdose 10 mg. Tapered but went up again. I take my 10 mg Pred in the morning together with Magnesium citrat and Zink, and my Calcium +D in afternoon. No cramps, no side effects and I feel great except weight gain.

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Hello and welcome to the forum Coffee49. I like the tonic water idea. Is it the Quinine?

Magnesium is indicated if you get a lot of cramp, have you tried that?

Was your relapse the cramp? Or more recognisable PMR symptoms?

What kind of taper have you been using?

It does sound like you have maybe more than one thing going on.

You were on a very low dose for a disease that lasts between 2 and 4 years and sometimes longer. The aim is to get to a dose that you are comfortable with while the disease runs its course. 5 in my view was way too low too soon.I am struggling at 7 after 20 months.

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I take 200mg a night of Quinine, nothing less cure the cramp for me!

Predjunkie

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I found that Gatorade helped my muscle spasms,...also a homeopathic muscle cramp pill from HYLAND.

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