Massage...or not?: Hi everyone...GCA and tapering... - PMRGCAuk

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Massage...or not?

Temoral profile image
27 Replies

Hi everyone...GCA and tapering predisolone, experiencing fatigue and muscle aches, but trying to keep up short walks. ...similar to many on this fab forum. Is massage a good idea, or could it cause inflamation? Should the head and neck area be avoided? Any experiences gratefully received. Thanks fellow warriors. 😊

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Temoral
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27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

If you can find a therapist who understands your illness and the effect it has on your muscles then it may be useful…suits some, but not others.

You won’t know until you try.

Temoral profile image
Temoral in reply toDorsetLady

Thank you...

PMRpro profile image
PMRproAmbassador

I use and benefit from massage - it won't CAUSE inflammation as such, what it can do is release cytokines (the inflammatory substances) from trigger points in the muscles (can be felt as hardened muscle fibres) and that can make it feel as if you have a flare of PMR symptoms until the cytokines are flushed out of the body.

But as DL says - you need a thoughtful and knowledgeable therapist who will lsiten to your feedback. It is a good idea to try a gentle approach first if you aren't used to massage. I love a good hard therapeutic massage that works hard on the trigger points but I know I may feel it afterwards and have been doing it for years.

Temoral profile image
Temoral in reply toPMRpro

Thanks...I used to have massages before diagnosis....I would love a gentle one now..just for relaxation, if nothing else.

SnazzyD profile image
SnazzyD

Different people seem to have different experiences but as DL says, the person needs to understand how your body may be affected. Personally, before diagnosis I loved a deep massage but after and a bit of Pred in the tank it was the last thing I wanted. Up to diagnosis for a couple of years or so I really couldn’t tolerate anything being done to me head. Now I’m off Pred, I like it at the time but the next day I feel pretty minced, but sometimes it feels like a necessary evil. Throughout I found Bowen therapy less heavy. You could try a gentle one to see how it goes.

Temoral profile image
Temoral in reply toSnazzyD

Thank you 😊

piglette profile image
piglette

I love having a gentle massage

123-go profile image
123-go

I would recommend hot stone massage to begin with. It's gentle and very relaxing.

Temoral profile image
Temoral in reply to123-go

Good idea..thank you

Lonsdalelass profile image
Lonsdalelass in reply to123-go

I too love a hot stone massage! I have another booked this week. One a month a the mo.

Suziib profile image
Suziib

I found massage very therapeutic if you find a competent masseuse they will recommend types based on your condition, I tried a different type each time until I found one that suited me, reflexology was relaxing, but after either you must remember to drink plenty of water.

Temoral profile image
Temoral in reply toSuziib

Good advice...thank you

GrandmaPirate profile image
GrandmaPirate

I have PMR since 2 years, prednisolone now on 2 mg/day. During the whole periode I got osteopathic treatment on one hand and massage (wellness) on the other hand. I feel always very relaxed and look forward to the next session. It doesn't hurt me, on the contrary.

Temoral profile image
Temoral in reply toGrandmaPirate

Thanks...and love your name 🤗

whitefishbay profile image
whitefishbay

I always feel better after a massage (mine was a nurse so she gets PMR, etc).

Temoral profile image
Temoral in reply towhitefishbay

Thank you...she was a great find!

whitefishbay profile image
whitefishbay in reply toTemoral

Yes and she gives a very hard massage but you feel better and taller.

PuttyPenguin profile image
PuttyPenguin

Coming from someone who is both impetus and impatient - don't overdo the walking! But that's not say don't do it.

I was in a zoom meeting with gods last night one of whom was Dr Vadivelu Saravanan and, in his opinion you must do exercise from the moment you are diagnosed with the disease. It is a case of finding an exercise that you can do daily and only increase by one or two minutes as you get better. Apparently Prof Desgupta ensure an exercise plan it given to his patients when he confirms diagnoses. It's such a shame that not more hospitals concentrate on that side of things.

However, back to your question - I feel sports therapy massages help me enormously and, after the initial pain of probing the muscles, it can be quiet nice. If you can find a physio who understands your illness ( and does massage as, I've been told that not all now do massage!) he/she can guide you on exercise as well.

Good luck, wishing you well.

Temoral profile image
Temoral in reply toPuttyPenguin

Thank you....massage lady I have contacted is researching GCA for me to discover the best treatment....encouraging....referral via acupuncturist. I am also impatient and impetuous...nor great skills for this condition....but working on it!

PMR2011 profile image
PMR2011

Unknowingly I had a deep muscle massage about 2-3 years into my PMR journey. Worst experience ever! The therapist had no idea about PMR and I was naive about it too at the time. I really think it was actually the start of myofascial pain points in my neck and shoulders. So do be careful.

Temoral profile image
Temoral in reply toPMR2011

I will...thanks...but I only have GCA at the moment.

pmac22 profile image
pmac22

I am also tapering down prednisone from GCA. I have gotten down to 9mg with the help of Actemra but now can’t get it. My Physiatrist has recommended acupuncture, ( for muscle spasm and pain in my mid back) I have just started so I can’t say how it is working yet. My insurance covers it as long as it is done by a MD. My Dr. Also said that acupuncture also seems to help strengthen the immune system. Wishing you in continued success in your tapering.

Temoral profile image
Temoral in reply topmac22

Thank you pmac22. I find acupuncture really helpful..both relaxing and re-balancing...for want of a better explanation. I hope it works for you...l'm not using Actemra as yet. Good luck on your journey too. 🤗

CrazyRunner profile image
CrazyRunner

I have a myofascial release massage weekly. I feel good enough to run a couple miles after that.

Temoral profile image
Temoral in reply toCrazyRunner

Wow...sounds brilliant! We all find our way through..crazy running is yours👍

NewtoGCA profile image
NewtoGCA

I’ve only been diagnosed with both GCA and PMR 3 weeks but realise I’ve been living with it for a while. Ive stopped all treatments temporarily but have been seeing a Chinese doctor for years monthly for rebalancing acupuncture, cupping, massage and reflexology. She is amazing and it’s so therapeutic, I always have the best sleep and alleviates my headaches and aches and pains. I will definitely be resuming and discussing the best way forward with this condition. I hope you find a wonderful therapist who can give you some temporal relief. Good luck 🤞

Wales20 profile image
Wales20

My partner has given me all body massages quite regularly, and especially when I have been feeling at my worst. She is not trained in this but we have massaged each other for years and she has got some good ideas from the Internet. She is quite gentle and cautious in her approach, but it has been relieving when she has dug in around my hip and sacroiliac pains. I wouldn't say this has been transformative, but it does ease my pains a little, and has certainly lifted my mood. The intimacy has also helped us through more difficult times, and she feels it is something she can do to help.

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