Scalp pain/tenderness extreme thinning of hair

[Wishie]

Hello

Hope you’re all as well as possible and enjoyed Easter!

I’m diagnosed SLE 3.5 years now, before my diagnosis I didn’t realise until a friend pointed it out to me, that I had no arm hair, then I noticed my leg hair had gone too, it’s never grew back I have total hair loss on my arms and legs, their very smooth, nothing grows from them. I never mentioned this to my rheumy or GP as I didn’t think it was related or a big deal, its less work for me 😂. Anyway, fast forward to now, I’ve started getting quite sever thinning of the hair in my head, it’s very noticeable it’s on my crown, towards the back and top side of my head. I also get a very sore painful scalp in this area, feels bruised/tender sometimes it burns, stabbing pains, also a strange itch sensation. There is absolutely nothing to see on my scalp, no sores, redness, scabs, spots or dandruff, nothing 🤔. It’s uncomfortable and the hair loss is starting to really upset me and have an impact on my self worth and confidence. I’m wondering if this is something I should wait to bring up at my next rheumy appointment (should be due one in May) or get a GP appointment for it? Does it sound lupus like? I’m worried in case all my hair goes the same way as my arms n legs as it’s never come back😮. Yet, I don’t want to bother the GP in a pandemic with something they may feel is trivial 🙁.

I’d really appreciate you’re advice/input on the situation. Any advice on how to get rid of the pain in that area, I’ve already tried a sensitive scalp shampoo and conditioner.

Btw I always wear a uv 50 cap 🧢 when out in the sun/heat.

Thank you 😊

I may try and post a photo so you can see.

[CarolMcl]

Hi Wishie, I too have no leg hair, I haven't had in about 4 years. Underarm hair is very sparse, have only every had to shave about three times in the 4 or 5 years. Unfortunately I also had hair thinning and each time I washed it, clumps came out. I actually wrote a post with a picture about it. Anyway, the thinning and hairloss has reduced since taking hydroxychloroquine plus I only wash my hair twice a week, other days I use dry shampoo. I also take methotrexate but don't think it's made it any worse

[Wishie in reply to CarolMcl]

Thanks Carol and I’m sorry to hear you’re suffering with it too.

Yes, I only wash mine 2 x weekly I haven’t used hair dryer since covid began and rarely use straighteners either, to try minimise damage. I take hydroxy and have done since my diagnosis.

Do you get any pain on you’re scalp?

[CarolMcl in reply to Wishie]

Yes like you I haven't used straighteners in a long time, I do need to use a hairdryer otherwise it looks extremely whispy. I have had pain but at times I also feel some lumps

[Wishie in reply to CarolMcl]

I’m so sensitive to heat, I can’t use the hairdryer, it makes me feel incredibly poorly. I’m the same with the heat of the straighteners tbh, after using them I feel like I’ve been in the sun for ages 😫.

[CarolMcl in reply to Wishie]

I can very much relate to that but tbh I honestly never associated it with the dryer. I always feel so lethargic after my shower, hairwash and drying. I really can't believe after all this time I haven't associated the lethargy and the general feeling of being unwell with a hairdryer!!

[Wishie in reply to CarolMcl]

Yes, I can’t have a hot bath either, in fact I don’t take baths at all now, they make me feel so awful, lethargy, feel sick etc. Same with the hairdryer, if I have to use it, I’ll use it on the cool blast setting or sit next to a fan 😂

Oh the joys 😚

[CarolMcl in reply to Wishie]

Lol, I've not been able to take a bath in a few years due to feeling the exact same. I've moved twice ( now in my forever home ) and in each house we've taken out the bath and put in a walk-in shower

[stiff19]

Hi I have no diagnosis but when I was hit with multiple symptoms , one was that I lost all hair from my legs and it stopped growing, but many months later I am pleased to say 🤷‍♀️( it was quite nice though) that it is growing back bevit slowly. I have very little hair on my arms now and since last week I’ve had a very sore scalp on top, a stinging burning and a patch of thinning and broken hair 🤷‍♀️ Family have looked at skin but apart from a small area of baldness there’s nothing to see that might match the feeling, no redness etc, but the week before I lost clumps of hair when washed it, I only wash it once a week occasionally twice.so sorry no advice but was interested in your post having the same 🤷‍♀️

[Wishie in reply to stiff19]

I’m the same, nothing to see on the outside except the thinning hair 😕 x

[stiff19 in reply to Wishie]

I now have a small bald patch but being on top of head it’s hard to see so I got my daughter to take a pic, it’s sore to touch scalp but can’t see anything. I also read about heat with you, I used to love a hot bath but now can’t and if I walk into warmth I feel like I’m going to boil over, and rarely use a hairdryer for the same reason, all so strange 🤷‍♀️ Do you get wisps of hair like it’s broken off, I get periods of this 🤷‍♀️

[Wishie in reply to stiff19]

Yes I do, I’ve got a lot of breakage around the front hairline of my hair and my hair is uncontrollable these days 😂.

I’ll be honest with you, my scalp was so sore yesterday, I washed my hair and then asked my daughter for her hairdressing scissors (she started training in January before covid hit, so had to finish). She asked me what for and I told her I was going to tie up my hair and cut the pony tail off wondering if taking any weight out of it might help. Anyway, she ended up cutting quite a lot off for me, so it’s now a lot shorter 😚

[stiff19 in reply to Wishie]

Wow you’re brave 🙏🤣 I don’t think I have a lot of weight in mine as it’s thinned so much but it’s ironic , before all this my hairdresser never failed to tell me all the time how lucky I was to have such thick hair. I hope it helps, I am booked in for hairdressers at the end of the month but if this soreness continues I shan’t be going.

I hope you find some answers for it, 🙏 and hope your daughter gets to do her training 👍🤗

[Wishie in reply to stiff19]

Thank you, hope you improve too x

[stiff19 in reply to Wishie]

Thankyou 👍x

[Barbara17]

Hi Wishie. I have scle and have virtually no leg or arm hair. I have never had any so this is not a new thing for me and for the last twenty years or so I haven’t had any underarm hair. Until I joined this forum I hadn’t made the connection with lupus. My hair started to fall out last summer when I was having a particularly bad flare and had sores all over my scalp. My dermie prescribed dermovate shampoo which helped and I now use almond oil to help with the dryness. And as others have said I only wash it every five days or so. My hair was always thick and curly so it is not as noticeable as it could be. It’s stopped falling out now, although I’m still on methotrexate and hydroxychloroquine, and it’s gradually growing back. I’m off to the hairdressers this morning (in Scotland they reopened on Monday) and I’m hoping she can do something to disguise my thin fringe! I would mention it to your rheumatologist as I’m sure there will be something to help you. Good luck.

[Wishie in reply to Barbara17]

Thank you, hope you’re hair appointment went well x

[Pumpkin2009]

Hi Wishie, I also have hair issues. Last year when I broke my main neck bone and wrist, I think because my body was using everything to heal that it made the hair issues much worse. I had not had my hair cut for over a year do to the injury and Covid. It really didn't seem to grow, but got thinner and thinner. After a C scan for broken ribs, I spontaneously at my husband's encouragement went to a walk-in salon (not where I had been going). After miscommunication, I walked out with my hair shorter than I have ever had it ever. Now I am adjusting to short hair and wonder what it will do now. I think in a way, the girl did me a favor as it is easier to deal with - just a total shock at the time.

I have tried all kinds of things like everyone else to help , but realized there isn't any real fixes. I do think our bodies have so many issues to deal with, that our hair is the last thing on the list. I also take Plaquenil and Methotrexate and a bunch of other stuff so it is hard to figure out what causes what. I wonder what Rapunzel's secret was?

Healing hugs.

[Wishie in reply to Pumpkin2009]

Sending you hugs too x

[Mystik]

I have the same thing scalp pain Sore and thinning hair and throbbing but my gp said it was sinus and I do have neck pain and shoulder so she asked me to take a X-ray of the neck

Just keep asking your doctors

Wish u all the best

[Wishie in reply to Mystik]

Thank you x

[Hidden]

Contact GP and rheumatology . I had a similar issue and fortunately it improved but rheumatology needs to advise

[Wishie in reply to Hidden]

Thank you 😊 could I ask, what they did? What did they put it down to?

[Hidden]

With me it was about getting the lupus under control. I had severe lupus requiring many hospital admission s including periods in high dependency. Since I have had rituximab the lupus has come under control. With relation to my hair these issues disappeared. Rituximab has made me able to live a normal life again

[Wishie in reply to Hidden]

I’m sorry to hear of you’re struggles ☹️ At my last bloods 5 months ago, everything seemed under control, except ESR which is always in the mid 40s but even that was 38 🙂. I’m wondering if this is some type of alopecia ?

[Hidden]

I was told the scalp hair issues were due to lupus activity. My hair liberally fell out daily in large clumps, almost like a cancer patient. It was very distressing. Strangely I was extremely ill but it was the hair that distressed me the most but my hair / scalp has recovered since I was treated with rituximab. Discuss your issues with rheumatology . Don't suffer in silence

[daisydayz]

Hello Wishie

I was initially diagnosed with UCTD then undiagnosed when my bloods reverted to normal.

I like you, have hair loss with a tender sensitive scalp. Mine is mostly at the front & temple area. I also get little lumps/spots to my head & around hair line. This was diagnosed as Frontal fibrosising alopecia a type of lichen planopilaris.

I have lost my eyebrows & my eyelashes have thinned & l my arms & legs are completely smooth & hair free.I don't even know when this all started ..it just sort of crept up on me.

I am taking hydroxy, but not feeling this is adequately controlling my hair loss, & I've just been prescribed amitriptyline for the severe head neck & shoulder pain I am now experiencing.

Hair loss is wretched, upsetting & destroys our confidence. I urge you to contact your GP or Rheumy. You are not being trivial - you need help & advice to manage this.

Take care & keep us updated. X

💕

[MorIlse]

Hello Wishie,I have had all those episodes, I made a mix of castor, rosemary, cedar tree essential oils and apply it to my scalp at night, especially the night before you wash your hair. That helps a lot with hair regrowth and alleviates the itching. Use 40% of castor oil and then 20% of the others. You will feel the relief. I also heard that rosemary oil can be put on your shampoo. Read about Castor oil, Rosemary and Cedar Oil for hair regrowth.

I'm now trying hair treatments made out of avocado oil, grape oil and aloe juice.

I have noticed leg and armpit hair gone, i guess that's a positive

[Cornwall91]

Hi Wishie, I’ve just come across this old post. I’m not get diagnosed lupus (currently differential connective tissue disease) but since seeing the Rheumatologist in October I’m having the exact same situation with my hair thinning and falling out. My scalp has also felt like it’s burning for a week straight now and it’s becoming unbearable. Did you manage to find a solution at all??