Just putting this out there to see if my anyone can relate to my symptoms.
Iāve had various symptoms over the last 2 years, I wonāt bore you with all of them butā¦.digestive/stomach issues, fatigue, swollen lymph nodes in my neck, severe headaches/migraines, achy jaw/cheek bones, facial flushing/rash, really dry mouth and feeling dehydrated all the time, very sensitive to feeling cold (cold hands, feet and nose particularly), some minor joint aches in last flare up but fairly dull, had heart palps since my early 20ās (now 30) and so on. My last āflare upā where I felt unwell was around June 2021 so I have been lucky to have such a gap. I havenāt had a facial rash for a while but get regular flushing. However, over a period of around 5/6 months, I have lost a seriously scary amount of hair by way of thinning all overā¦my hair is breaking and falling out so easily and what is there is so dry and frizzy. I do suffer with dandruff but have had this mostly under control with medicated shampoos so nothing has changed really in that respect. I recently paid to see a dermatologist privately who said Iām suffering with all over thinning and diagnosed Androgenic Alopecia which he said is genetic and prescribed Minoxidil in tablet form twice daily. Iām really not convinced it is a genetic issue and when I said to the Derm about autoimmune he wasnāt interested. Autoimmune wise, Iāve had some bloods done, I saw a Rheumatologist last year (which happened to be when I felt fine) who said I didnāt tick enough of the boxes to have a specific autoimmune diagnosis (only positive blood work so far is a positive ANA which I know you can have without an autoimmune disease). He put me down as Differential Connective Tissue Disease and wants to do an ultrasound of my glands and more bloods. About a week after seeing the dermatologist recently, and itās been constant since (about 6/7 days now) my scalp has felt like itās burning constantly. Itās hot to touch but doesnāt look red and angry but itās super sore. Typical I wasnāt experiencing this when I saw the Derm. I emailed the Dermās office to say about the burning scalp and he said this isnāt normal of androgenic alopecia and to speak to my GP. The Derm did ask my doctors following my consultation to do some bloods to check my hormones which Iāve had today.
I know itās a long old road to get to the bottom of health issues but has anyone experienced anything similar? Iāve done so much reading and have read people having similar (including scalp burning/hair loss) with thyroid disorders, lupus, schogrens (apologies if spelt incorrectly), hashimotos as well as nerve issues causing the scalp pain. Iāve also read of people experiencing hair loss from COVID which I had in August. Iām really struggling to piece my health issues together and the hair loss and pain is now really distressing. Iām due to go on holiday in a few weeks and now absolutely dreading it.
Any help/guidance and advice appreciated.
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Cornwall91
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Hi, Iām so sorry to hear what youāve been experiencing but it sounds Ike just what Iāve had ever since I caught covid in April 2020. Since then my body has never been the same. It has shown that Covid itself can cause autoimmune disease in people. Last year I had all the same symptoms as you and I still get them. The aching jaw, face and neck rashes, pain under my armpits , digestive issues, burning painful scalp and hair loss. My hair loss has got worse over the last 4 months. Iāve had blood tests done and they canāt seem to find anything wrong so Iām giving up but you shouldnāt! The rashes on my face appeared about 4 weeks after having my first covid vaccine, but I donāt know if that had anything to do with it.
I currently live in Japan and all the doctors Iāve seen so far just donāt seem to be qualified enough. Im so tired of it all. The burning on my scalp often felt like a bruise in the centre of the top of my head. I had a CT scan but it showed nothing. I donāt get it so much now but the issues Iām experiencing more are digestive issues, pain in my left side, sometimes sharp pains in my stomach, and recently Iāve been feeling nauseous after eating, not every day but most days. My eyes also look quite tired and sometimes a little red. I had them tested early last year and the opticians said they were fine! Fed up! But anyway with these new issues, I need another trip to the doctors very soon.
Sorry I cannot give you any advice but I truly understand what youāre going through.
Thank you for your lovely message. I have wondered about COVID but I had Covid in August 2021 (Iām assuming I didnāt have it before then undetected) and my issues stayed long before that. My issues all started in 2020. My mother very suddenly passed away aged 54 (my brother found her at home) and within a couple of months my dad was on end of life care having became very sick and I was told he wasnāt going to make it and to come say goodbye. Luckily my dad is still here although very sick but all the same Iām grateful. I donāt know what happened but ever since my symptoms have spiralled and I feel like at the age of 30 my body is falling apart. I donāt seem to have any clear answers and I think doctors think Iām being dramatic. I just want to feel like a healthy 30 year old and to get my body back on track. Itās honestly so nice to hear from someone that is going through the same thing. It sounds as though the healthcare in Japan isnāt much better which is a shame! Are you living out there permanently? Iām still at a loss as to whether itās autoimmune/thyroid/Covid/stress and not getting anywhere is probably the worst thing not having any answers. I hope you have lots of people around you to support your journey. Itās so nice to talk to people of here that āget itā. āŗļø
Honeybug made a good point about the thyroid. Once the thyroid is not working properly, it puts everything out of whack including digestive issues. Itās a good thing that youāre having blood tests for your thyroid. But make sure they do a thorough blood test for this because some doctors only do one particular blood test for it, I read that you need to have specific tests to check any abnormalities with the thyroid. Perhaps honeybug or someone else can help with that? I read an article some years ago about stress and what it can do to the body. Doctors called stress the 20th Century killer because it does all sorts of terrible things to the body which then have a knock on effect with other parts of the body. It sounds like your body went through a very traumatic time when you lost your mum - very natural of course! And then your dad becoming sickā¦.I canāt imagine the effect this would have had on your body.
Keep us posted about the blood tests and what the doctors say.
Sadly the medical system in Japan, although very clean, the doctors knowledge is very limited even in Tokyo. Unfortunately theyāre no where near advanced as the uk. I havenāt lived here long, moved here in 2019 and a few months later covid began! My husband is Japanese and even he is shocked by the some of the doctors knowledge and treatment. Thereās a huge ageing population in Japan which has stunted a lot of advancement in so many areas. People think that Japan is way more advanced than other countries but thatās just a myth, itās absolutely not true. They only started accepting credit card payments in public places within the last 4 or 5 years. Covid has pushed them to do it. In some places, they still only accept cash! Like every country, it has itās good points. Thatās my grumble out of the way š
Sometimes it takes a long time to determine the cause of our symptoms but I truly hope they find out yours soon because itās so depressing waiting for answers whilst suffering. Let us know how it all goes.
Mine is autoimmune related; nearly none functioning.
Also have you seen an Endocrinologist???
I have most of your symptoms.
My late mother had alopecia arreata. I have it too. As a child my mother had my dad thin my hair with thinning scissors. Wow do I wish I had those clumps of hair back on my balding head. š«š
Thank you for your lovely message. I donāt know if I have thyroid issues but Iāve just had some bloods done to check my thyroid (awaiting results) so hopefully that will clarify if this is the case.
My issues all started in 2020. My mother very suddenly passed away aged 54 (my brother found her at home) and within a couple of months my dad was on end of life care having became very sick and I was told he wasnāt going to make it and to come say goodbye. Luckily my dad is still here although very sick but all the same Iām grateful. I donāt know what happened but ever since my symptoms have spiralled and I feel like at the age of 30 my body is falling apart. I donāt seem to have any clear answers. Iām not aware of any hair issues in my family, my mum had extremely severe rheumatoid arthritis and her hair did thin a little after the menopause but thatās about it. I hope youāre feeling well at the moment and send you positive vibes and best wishes āŗļø
You have very similar symptoms to me. I have also had burning scalp, and burning face and collar bone region. I was diagnosed from my photos with severe photosensitivity (sunburn) in 2019. In Nov. I was diagnosed by a consultant i with neurogenic rosacea, he said look it up online so after a while I did. One site said it is very rare was first discovered in 2010 since then only 3 cases though probably under diagnosed another web site said anyone diagnosed with this condition has the right to ask for a refferal to London hospital to psychidernatiogy dept.
I also have borderline underactive thyroid. Diabetes type 2, raynaurds syndrome, fibrmyalgia, hair loss in past due to psych. Meds.
Hi I can really relate to what you are going through I have all the same things that you have including trouble with my hair I was diagnosed with Alopecia arreata my scalp sometimes feels painful I have found using nizoral shampoo helps and I had hair extensions to make my hair look thicker I have been trying to get a diagnosis of sjrogrens I saw a rheumatologist two years ago but he was so dismissive as it did not show in my blood Iāve just seen him again but this time he is sending me for a lip biopsy to test my salvia glands I think
I also really really relate to what you said about feeling worse since you lost your mother and the worry you had with your father this has also happened to me I tragically lost my son two years ago and six months after he died my dad died. I was already being investigated but my symptoms just got so much worse.so Iām hoping something will show up this time so the doctors will take me seriously.
I hope your scalp feels better soon and you can have a good holiday x
Hi Cornwall. I have lupus and other assorted autoimmune conditions. Scalp burning has been with me for so many years I can not remember it never being there. You are asking for pain relief so this is what I do: wash with very mild shampoo. No conditioner. Pour pure Aloe Vera cold from your refrigerator on your scalp. Rub it in gently. I pour about a cup. I buy my aloe Vera from Amazon. No preservatives. Let you hair air dry. If it still burns a bit put more cold aloe on and take an aspirin. My mother complained of this all the time when we were kids. She was not diagnosed properly; this was the sixties and seventies. Iām sure she had lupus. Your hair follicles are inflamed. This makes hair fall out. Treat it gently, try aloe and stop worrying. Worry
Creates Stress. Just know it will be okay. You will be okay. Best, Titters /oh and aloe gives hair great body and shine. No more hot showers on your head. š¬
Hi I had the same for years too although thankfully no balding but the burning. What I found worked was throughout the day taking orally teaspoons of coconut oilā¦..you can put it in warm drinks and also having splashes of apple cider vinegar vinegar in water throughout the day. I also drank a lot of water and occasional pinches of sea salt.
I think it might be caused by Candida overgrowth and the coconut oil kills the Candida and the apple cider vinegar helps repopulate good bacteria. I did it for months and my stomach felt the best it had ever felt and my scalp felt back to normal.
Also watch your diet and try to eat a whole plant based diet
Hi jaci121I was really interested in what you just said about it being Candida overgrowth making your scalp burn my head gets so sore it hurts to comb my hair but I think it may be to do with Candida overgrowth as I have other problems as well I have mentioned it to the doctor but I think she thinks I am mad but I am going to try what you suggested with the coconut oil and apple cider vinegar I also am trying to cut out sugar but itās so difficult especially as I like a a drink now and again š·
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