my hair hurts!

[BabyRuby1]

occasionally I get horrible scalp pain where it seems my hair hurts! I massage my scalp and the pain is horrible. Took some Advil for three days went away. What the heck is this horrible scalp pain? Side effect of PMR?

[DorsetLady PMRGCAuk volunteer]

Scalp pain is usually associated with GCA - do you have any other symptoms?

If Advil helped, it’s probably not that..but just monitor it, and if it returns then get it checked out.

[BabyRuby1 in reply to DorsetLady]

oh lord…I hope it’s not that! How do they test for GCA?

[BabyRuby1 in reply to DorsetLady]

I did a little research… think my tender scalp pain is due to wearing my hair in tight ponytail! Duh! I notice when I take my hair down my scalp feels better. This happens occasionally with my hair up. Will do some monitoring 😡

[piglette in reply to BabyRuby1]

Every once in a while, it's OK to wear your hair tightly pulled back, but you want to avoid wearing a tightly pulled hairstyle every day. The constant pulling can cause strands of your hair to break or fall out. In time, the continuous pulling can damage your hair follicles as well as causing scalp pain.

[BabyRuby1 in reply to piglette]

I finally figured that out! I lost half my hair diagnosed with PMR and got on prednisone…my hair is finally growing back ….

[piglette in reply to BabyRuby1]

I am so glad

[PMRpro Ambassador]

jinasc's suggestion for a sore scalp:

Spread your fingers through your hair and tug gently all over your head. The gently tug relaxes the little muscles at the root of your hair. Bit like Shiatsu.

She was taught it by her hairdresser and can do no harm.

[BabyRuby1 in reply to PMRpro]

I usually just massage my head, but it doesn’t help much. I’ll try your suggestion and thank you!

[Temoral in reply to PMRpro]

Yes...I have used this method...very soothing.

[SnazzyD]

I get scalp pain before a bout of losing hair or leaving it too long before washing. Sternokleidomastoid tension also causes scalp pain in the side of my head. With GCA even wearing glasses was irritating and it didn’t let up.

[BabyRuby1 in reply to SnazzyD]

my pain is from pulling my hair into a tight ponytail 😡

I know this because when I take my hair down, the pain goes away…

[SnazzyD in reply to BabyRuby1]

My 21 year old daughter with long hair gets that

[TizzyS]

I know the feeling well, after 35 years of fibromyalgia…. but since GCA ( November 2021) it’s been so bad I can’t brush my hair, and it hurts so much some days I can’t put my head on my pillow…..prednisolone does nothing for the FM…. but it does for the GCA, I up the prednisolone and see which one is flaring this time around…. Oh the joys of having incurable illnesses that continue giving 💕🤪

[DorsetLady PMRGCAuk volunteer in reply to TizzyS]

but since GCA ( November 2021) it’s been so bad I can’t brush my hair, and it hurts so much some days I can’t put my head on my pillow

I hope that’s not the case now you are on Pred ..if so then you aren’t on a high enough dose-and need to tell your doctor so.

[TizzyS in reply to DorsetLady]

only if I’m suffering a flare, so far I’ve had 3 whilst reducing Pred ….. trouble is it’s difficult to judge if it’s a GCA flare or FM….gp said for me to air on the side of caution and treat it as a GCA flare, so that is where I’m at at mo……there is something very liberating in having short hair that you can just run your fingers tho 🤪😁

[DorsetLady PMRGCAuk volunteer in reply to TizzyS]

Sensible GP -but perhaps you should discuss your tapering regime ….and try and eliminate the flares… 😊

[TizzyS in reply to DorsetLady]

xxx ty will talk to rheumatologist when she phones for her monthly check up on me next week and see if she has any other ideas… I’m already only reducing by .5mg every 6 weeks…… I’m now at 12.5mg …… so far so good xxxx

[ProcrastiBaker]

my rheumatologist said that scalp pain could be GCA. He told me to immediately go to emergency because blindness can result. Please go get checked out. I am not an alarmist…just reporting the facts. Please let us know how you are doing.

[BabyRuby1 in reply to ProcrastiBaker]

we’ll fortunately I realized my scalp pain is from pulling my hair in a tight ponytail! It seems to happen when I pull my hair up tightly but I definitely will keep track of this. Thank you

[Mumdadlove]

One of my symptoms with GCA was scalp tenderness, also at the back of my scull, my rheumatologist said not to do with GCA but all stopped straight away with steroids, looking back I think I’ve had it a lot longer than I realised, told by my old GP that it was stress

[BabyRuby1 in reply to Mumdadlove]

we’ll I’m hoping my problem is a tight ponytail. When I take my hair down it goes away. But I have a very sensitive scalp anyway and pain in back of my head both sides for years. My chiropractor helps but makes me wonder about GCA 🤔🤔🤔

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

One of my symptoms with GCA was scalp tenderness, also at the back of my scull, my rheumatologist said not to do with GCA…

Don’t know what book your Rheumy is going by -but those are absolutely a VERY typical symptom of GCA

[BabyRuby1 in reply to DorsetLady]

my rheumatologist stinks and only cares about getting me off steroids….I need a new rheumatologist

He forced me to go down to 1 mg and boy did I get a flare! Had to start over at 10 mg and go down. I’m m now on 3 mg…seems like 3 mg is a good dose for me so I’m staying on it for awhile. I know my body better than he does…but these back of head pain is worrisome now for me. I’m thinking of having my GP send me to a new rheumatologist

[Mumdadlove in reply to DorsetLady]

I agree completely, this group has helped so much, she completely dismissed any symptoms other than temple pain, she charges £200 a time but I am managing my symptoms and dosage more with the help from this group, sadly I had to go private as originally said my old GP said stress, I couldn’t stand the pain any longer, I have learned so much much from everyone’s help and advice on here and am so grateful, thank you all

[BabyRuby1 in reply to Mumdadlove]

yes. This group has helped me more than any doctor!

[PMRpro Ambassador in reply to Mumdadlove]

Most rheumys would consider GCA! GCA favours activity in the occipital region of the brain where the visual centre is - that's when visual loss due to involvement of the opthalmic artery and blood flow to the optic nerve.

[Mumdadlove in reply to PMRpro]

I really think I need to look into this more, since being diagnosed I have lost slight vision in my left eye, it was picked up at my glaucoma appt on the field test and scan of optic nerve, I also get a lot of discomfort in my neck from my ear to my throat and then a sort of Chest cramping, I’m wondering if maybe I need to ask about having more arteries scanned, I have felt for a few years as if I have a claw in the top of my head, in December it was so bad, then at the base of ny scull I couldn’t put my head on the pillow, then the temple pain followed. I have my eye operation tomorrow and after that I think I will mention these things and just to be in the safe side get them checked, and maybe change my rheumy, more information and help on here! Thank you

[BabyRuby1 in reply to Mumdadlove]

oh wow you got some issues! My eyes are good for my age. Slight cataracts

Good luck! Thanks for your insight

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

Fi you mean some sight has gone completely or it goes and then returns ?

Ear problems can also be connected to GCA.

Definitely need more investigations.

This picture shows arteries in head -any may be affected.

Head arteries

[Mumdadlove in reply to DorsetLady]

will def investigate more, two of the arteries in the picture I definitely get pain. I am just waiting for my procedure my eye pressure has gone even higher, I have had glaucoma for a few years always managed with drops, since steroids my pressure has gone very high and my glaucoma consultant says that on field test and optic nerve scan there is loss of vision in an area of my left eye, I don’t notice it but I think it’s caused by my eye pressure due to the steroids rather than the GCA, so much is happening I’m starting to get a bit confused with it all, I think I need to get this done today then review everything as to what happens next, I think maybe a change in rheumatologist

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

Yes to your final sentence -and good luck

[BabyRuby1 in reply to Mumdadlove]

I have back of my head scalp tenderness for 20 years…vertigo also. The pain on both sides on back of my head seems to always be there. My GP offered to get Botox injections on the back of my head! No thanks and my rheumatologist is clueless All he seems to care about is getting me off steroids which even though im on them I still get back of my head pain. Chiropractor says it’s tension headaches ….yeah yeah I’m so sick of everyone’s diagnosis but nothing helps. Been to many neurological doctors, they can’t figure it out either so I just live with it…I’m 70 years old and have had vertigo and head pain for 40 years…now PMR…..😡

[Lochy]

I get occasional painful areas on my scalp at the crown of my head. I’ve worked it out to be when I’m settling into a new dose. It appears for a few days and then goes away just as quickly. Only sore when I touch it.

[BabyRuby1 in reply to Lochy]

I’m always wondering why I have headaches. W then I push on the back of my head and ouch. No wonder!