Stiffness in scalp and Physio: Diagnosed with PMR... - PMRGCAuk

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Stiffness in scalp and Physio

Darcy2000 profile image
15 Replies

Diagnosed with PMR IN January. Now on 15 mgs .the stiffness originally was lower body but now primarily upper body..mainly into my head and behind ear...very uncomfortable..not sharp pain but dull ache ...GCA was ruled out by A great Rheumatologist..so he mentioned a chest X-ray and physiotherapist My question is can Physio actually help this stiffness caused by an auto immune disease? Willing to try it if course but just wondering if anyone else had any good outcomes with Physio or massage

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Darcy2000
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15 Replies
SheffieldJane profile image
SheffieldJane

Who is the “great Rheumatologist “? We, collectively know of a number of them who are expert in our field.

In your shoes I would still be worried about GCA. On what basis was it ruled out. My priority would be being absolutely convinced that GCA was not following on the heels of PMR, as it does for 1 in 5 PMR patients. Has he/ she suggested trying more Pred to see if it eased this new symptom?

Why a chest X Ray? The site of the pain is in your skull, behind the ear.

Perhaps you have more information and you are satisfied that your eyesight is not at risk. From the little information given, I feel concerned and physio would not be my first choice.

in reply toSheffieldJane

Chest x-rays can be used to rule out other issues when GCA suspected.

Darcy2000 profile image
Darcy2000 in reply to

Oops I meant neck X-ray

in reply toDarcy2000

That's ok. Chest x-ray wouldn't be outrageous!

I’m not a fan of Physio that’s what triggered my PMR in the first place!

However, if they are a Specialist in PMR then it maybe worth listening to what they have to offer but mostly our muscles are intolerant of any massage & certainly anything deep or vigorous.

MrsN

Slosh profile image
Slosh in reply to

Oh my word really - I think that a very deep sports massage caused / exacerbated mine!

PMRpro profile image
PMRproAmbassador in reply toSlosh

What happens is that deep/therapeutic massage releases trapped cytokines from trigger spots in the muscle where they are concentrated. They travel through the body, i.e. become systemic, on their way to being eliminated through the kidneys, and make you feel as if you are having a flare. Any such massage should be followed by gentle exercise and drinking lots of water to speed up that process.

SnazzyD profile image
SnazzyD

On what basis was it ruled out?

Have a look at sternocleidomastoid tension that can mimic some GCA symptoms

healthline.com/health/stern...

This has a good picture

thewellnessdigest.com/stern...

SheffieldJane profile image
SheffieldJane in reply toSnazzyD

What a useful post. Thanks SnazzyD!

in reply toSnazzyD

I have been looking for the second link for ages snazzy. I forgot to save it so thanks for posting.

I think it depends on the therapists and the patient - the therapists should be chosen on the basis they know about PMR or other autoimmune issues.

I can't cope with light therapeutic massage...I find the light touch unbearable, but I have fibro too. I prefer a sports massage that really sorts the knots that are most like myofacial problems. It can leave me drained for a couple of days but worth it for me. Some people wouldn't like that at all!!

Constance13 profile image
Constance13 in reply to

Give me the light light touch! I like to be pampered not purged!

in reply toConstance13

🥂

piglette profile image
piglette

I actually go to an osteopath who is knowledgable about PMR and is brilliant. I have been to various physios too who say they know about PMR but I suspect they are not as good as they say they are.

How did dt. rule out GCA?? Because your latest symptoms sure seem like GCA.

Physio helps with regaining muscle strength., core strength, endurance, balance. Dx 9/16. Now is the first time I have felt well enough to do physiotherapy. I had exercised all my liife so I am used to a gym like studio. My biggest problem is taking stairs up and down; that is my goal. Now I must put both feet on each step to go up and down. On top of PMR, I fell from the top of my 13 hardwood stairs in the middle of ths night That is the most traumatic injury of my life. But I was lucky; no broken bones even with 3 years in Sept on steroids. PT is not going to cure the disease, but will make you stronger, fitter and boost your confidence.And depending on therapists and other patients, it can be fun. Try a couple of sessions and see what you think. For me it's worth it.

I see alot of elderly stroke victims, with assistive devices and plenty of people with sporfs injuries. My PT place is right in my hometown. I am going 3 X week. I learned NEVER PUSH THROUGH PAIN; If therapist sees you getting too fatigued, they will say, that's it for today.

If you have a choice. visit a couple before you choose. I wish I could have started sooner, but too sick until now. I enjoy it. Good fot mental health too.

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