Scalp sensitivity/left side head pain

[jbkinv]

Hi everybody, I suffered with chronic fatigue and joint pains for many years before finally getting a Lupus diagnosis 4yrs ago. I think I'm lucky as I have only suffered mild symptoms up to now. Once I got the diagnosis it was a relief as I felt I was going mad, because there was no answer to the fatigue and pain.

HoweverI have recently been developing a sensitive/sore scalp. This has got worse with some more aching pain recently. When I mentioned this to GP he doesn't have any answer. (he makes it clear that he's not familiar with Lupus and basically shrugs his shoulders and passes the buck). The rheumatologist is not much better as he says it doesn't sound like Lupus but doesn't offer any other solutions

I've been trying to see if this gets worse with sunshine, but I'm not too sure. I'd love to know if anybody else suffers this type of sensitivity/pain.

Thanks in advance for any advice,

John

[NeuronerdDoaty]

I’m sorry about the problems you’re having. You know the rashes we get don’t have to be the top layer of skin only and they can be anywhere. I’m going to suggest perhaps the next layer down has heightened sensitivity. Let’s go ahead and just say it’s more sun sensitive instead of trying it out. Let’s stipulate that!

My scalp goes through stages of being sensitive. I only finger brush my hair. No brushes or combs. I like the feeling though. I cant massage my head or play with my hair because my hair will fall out.

The only thing I would check is your neck and facial nerves to make sure nothing is getting pinched. If there’s no indication of that then it’s just the area being bothered right now. Treat it gently. Keep it covered.

The left side head pain could be migraine. Migraine is a syndrome of which a headache is only a symptom. Talk to your doc about that. Many people with autoimmune and UCTD have migraine syndrome. Just be sure the doc knows it all.

I would be combing my head right this minute and flopping my leg like the dog with her tickle spot if I wouldn’t lose my hair! Lol!

Best of luck to you dear. Take care of that skin☺️💕

[jbkinv in reply to NeuronerdDoaty]

Thanks for the reply Neuronerd, it seems I'm not the only one gets this. Even knowing you're not alone helps because I know its all just in my own mind. It's so frustrating when the doctor (even the rheumatologist) says he never heard of it. I'll just have to keep on the case. It's not constant but seems to be getting more frequent.

Thanks again. 😊😊

[Roarah]

A lot of benign conditions like, tension headache, migraine and tmj can cause scalp tenderness and headache but GCA, a type of vasculitis, is a sometimes serious condition that leads to your symptoms. It is unusual under 50 but not unheard of. You might want to mention it to your GP and have an ESR run. Good luck.

[jbkinv in reply to Roarah]

Thanks Roarah, I'll make sure to mention everything to the doc. I've a few new names to throw at him now 🤔 (GCA). Ita always a case of ruling things out. Regards 😊

[weathervane]

Hi jbkinv , i have had episodes of scalp irritation and pain when I couldn’t put my head to the pillow. I tried massaging black seed oil into my scalp at night with good success, i have only had to use it a few times since.

I also discussed it with my gp and rheumy , who had no idea of the cause either!

[jbkinv in reply to weathervane]

Thanks Weathervane, gives me something else to ponder. You'd try anything if you're in enough pain 😕

[weathervane in reply to jbkinv]

I found out about it on Australian Sjögrens site , it did work for me , i got it in a small health food shop .

[jbkinv in reply to weathervane]

Thanks, I'll see if I can get it. 👍

[MrsMouseSJ]

Hi John. I get episodes of sensitivity in various areas of my body - although one spot at a time, for example my right hip or part of my scalp. This has been going on for years, alongside what was originally diagnosed as M.E./CFS, and GPs just shrugged. I subsequently received a Lupus diagnosis, plus several other diagnoses. I have never been given an explanation for the sensitivity which comes and goes. However my current GP does think I may have fibromyalgia and I now know that allodynia can be part and parcel of that. I have not found anything that helps; it just goes away in its own time. In any case, it is probably worth 'prodding' your GP and asking for full bloods (including ESR, as Roarah mentions) when this is bad, and also asking about the possibility of you having an associated condition/s i.e. which sit alongside your Lupus. Good wishes.

[jbkinv in reply to MrsMouseSJ]

Thanks MrsMouse, I think I've given more blood to the GP than the local blood bank gets 😊 But I'll make sure to go to the hospital next time when it's really bad so the rheumatologist will get the results. At the moment it's intermittent but getting more frequent.

Regards 😊

[Piscesdreamer]

One of my early symptoms was strange scalp sensitivity. I explained it to my GP by saying things like:

The space between my scalp and my skull hurts.

My hair hurts.

When I lay on a pillow and it pushes my hair up, my scalp hurts.

I could feel firm raised large areas on my head, but there was no visual inflammation or irritation.

To which he shrugged his shoulders.

Once I was put on anticoagulants and plaquenil - the strange sensations stopped. Also my scalp now feels like it follows the natural contours of my skull.

So I knew it was definitely a symptom and I wasn't losing my mind!

[jbkinv in reply to Piscesdreamer]

Thanks Piscesdreamer, I appreciate all the replies. It's some comfort to realise I'm not on my own, because the doctors make me feel like I am sometimes.

Regards 😊

[Poppypig]

Yep I get this and a scabby scalp too. Seems a lot better since I had my first depo steroid injection. I can even drive with the windows down again now.

[jbkinv in reply to Poppypig]

Thanks Poppypig, everybody here is giving me some food for thought.

Regards 😊

[lupette]

Hi What you describe is one of my symptoms too. Scalp pain is always my first symptom before a flare. There seems to be a direct relationship between the amount of scalp pain, and the intensity of the flair that follows. I have told this to many doctors but have never gotten any answers. I hope you have better luck and that you are able to control your pain and your flares. Good luck!

[jbkinv in reply to lupette]

Thanks lupette, it's a little scary when the doctors shrug their shoulders. It can't be that uncommon if I'm getting so many replies on here. Regards 😊

[jbkinv]

Thanks Louise, at least I know I'm not going mad and I'm not the only one. Just have to soldier on.