Posted 4/18/2009 9:09 PM (GMT -6)
Have you recently changed your brand of shampoo or other hair products? Wearing barrettes, hair clips, headbands, etc. can trigger my scalp pain.

I've found that it bothers me more when my hair is longer than shoulder length. I can feel the extra weight pulling me down. Once it starts, it takes weeks, even months to go away.

I wish I had some advice but I haven't found anything that really helps - I just suffer through it. I've heard many others with fibro complain of the same problem so I guess it's another lovely fibro gift. Since this is the first time it's happened to you, I suggest you have someone look at your scalp to see if it looks red or splotchy or different in any way.
Posted 4/18/2009 11:22 PM (GMT -6)
I choose hair products carefully. Many add to the scalp pain.

Posted 4/19/2009 8:34 AM (GMT -6)
If the hair products add to our scalp pain then it is very much a sensitivity issue.

My question is there anyway to reduce Substance P?? I have read that anti-inflammatories such as capsicum, menthol etc reduce P. Now I have found that using a wintergreen prep I make for muscle strain has been helping my overall pain. Coincidence quite possibly.

Thought?? Patsie
Posted 4/19/2009 9:32 AM (GMT -6)
I have the same sore bruised feeling scalp just before a flare up, when I have one, I switch to a soft natural bristled brush and I use a soft down filled pillow. I'm not sure what causes it, though I know the tendons on my scalp have spasms when my forehead and neck cramp. I don't use styling products, but during a flare up, I change my shampoo to a chamomile and lavender scented baby shampoo. I've yet to find and OTC pain reliever that does much of anything.

I've heard there are labs working on a way to reduce or block Substance P production for fibromyalgia patients as well as burn patients, if and when a new medication will be released is anyone's guess
FM, costocontritis, wide spread arthritis, fibriod tumors, 2 heart attacks at 22

Flexeril 30mg, Celexa 50mg, Despiramine 50mg, Ibuprofen 800mg Acetometaphen 500mg, Calming Sleep herbal suppliment, ActivOn topical pain relief, occassional cannibus

Posted 4/19/2009 4:25 PM (GMT -6)
I havent changed hair products, I dont wear barrettes, or head bands, or anything else of that nature. And my hair is very short. Approx. chin length so...

It comes and go may be really bad for a few days and then slack down some and then hurt worse... Nothing is different from when it hurts worse and when its barely noticeable. So... I think it is a sensitivity thing, possibly sub. P. It really makes sense though so...
I just wish there was some way to reduce it! I read that anti-depressants help it.. but other than that, they really arent sure yet...

So, I guess we are supposed to sit here and wait on medical research! (we could be here a while!)

Take Care!
Lyrica(15 months on, but now officially off of it!) and Paxil(about 6+- months)
Fibromyalgia, Depression, Anxiety, Panic Attacks-currently in therapy
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."

Posted 4/19/2009 5:01 PM (GMT -6)
Tennis, this morning I woke up with a spot around four inches in diameter on my scalp that hurts.  I didn't do anything to cause it either.  It almost has a bruised/burn feeling to it.  If I touch my hair, it slightly touches my scalp and it is tender.  I don't wear anything on my head and my hair is very short.  I use gentle shampoo because I wash my hair every day and I've been using this product for over 11 years.  Soooo, this could be fibro.  All I know is I'll just push this to the back of the line because I don't think that it's really anything serious and it's just something else I have to live with.  So, I won't touch my head once I do my hair in the morning!  LOL  No touchy, no hurty!  LOL
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Posted 4/20/2009 1:56 AM (GMT -6)
Ya, I don't think I would want to have a spinal tap, they are really terrible. The sore spots on my head come & go for no rhyme or reason. Just random. Sometimes, it will hurt so bad I will sit & massage the spot & that may help or it may not. Other times I don't notice it until I brush my hair. Such a weird illness. Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Posted 4/20/2009 9:46 AM (GMT -6)
I think my DH taps my head with a hammer in my sleep Christi smilewinkgrin I always have sore spots all over my head and have had for quite some time now. I also have sore spots on both sides of my forehead like above each eye that have been there for a long time. I use to love to have my hair shampooed by my hairdresser but I don't do it anymore, mainly cause of my neck on the wash bowl but also cause of the sore spots on my head.
Do you have sore spots on the back of your head, right at the base of the skull??? That's another area that stays sore for me.
Fibro hurts from head to toe!!!!!
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Posted 4/20/2009 10:32 AM (GMT -6)
Oh Marlee the back of the head yes, yes, yes. I can just push those lobes to release some of the tension. I am always tender there and above my eyebrows. Now I have come to understand this is very much fibro.

I wish I had someone like Panda does for a good massage. I have had nothing but pain after so shy away. Wonder how to find someone good.

Posted 4/20/2009 6:41 PM (GMT -6)
Marlee, you can massage those knots out at the base of your skull.  It does help.  I will get two lumps, on each side of the spinal cord at the base of my neck and I massage them out.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Posted 4/20/2009 8:00 PM (GMT -6)
I actually had this not too long ago, it was an area almost along the length of my part. It hurt to touch it even just the tiniest bit, and it hurt for the shower spray to hit it. I had a doctor's appt during the time of the pain and was told it might be due to tense neck/jaw muscles (which I have issues w/ during fibro) causing a bit of inflammation. Luckily the pain subsided after a week or so of concentrating on relaxing my jaw and neck whenever I thought about it. I hope it resolves!
Posted 11/16/2009 9:17 PM (GMT -6)
Hello, everyone. I have had the same scalp pain for the past 4 years and it causes my hair to fall out until i found that foods with gluten in it was causing the problem. i stopped eating food with gluten and finally wow, instanly after 4 years i was able to be pain free. I can sleep with a pillow againg because the pain is gone. You have to have a gluten free diet.
Hope this helps tryit. It help me
Posted 11/17/2009 9:50 AM (GMT -6)
Hi missionhope and welcome. I have pretty much been gluten free for over three months now but I still have sore places on my scalp. I think my DH takes a little hammer and bongs me on the head in my sleep. smilewinkgrin
I'm glad you found us and you can introduce yourself in a thread if you would like and tell us a little about you. Read the fibro 101 thread at the top of the page, it contains lots of great info.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Posted 11/17/2009 3:20 PM (GMT -6)
It seems like every three to four months I experience the scalp tenderness.  It is so tender to brush my hair is soooo painful.  I have a co-worker who also has fibro and says the same thing.  I'm very thankful this doesn't happen all the time.
Posted 11/17/2009 4:54 PM (GMT -6)
I just had my first bout with this. I came down with the flu and it shot my immune system all to pieces.
Even with my herbals I'm in a flare so big it would light up the sky. The nerve endings in my shoulders,
up my neck and to the top of my head are RAW. I wear a hat all the time, at work and home and it
actually hurt to have it on. I wear it at work because I don't like hairnets and use a company baseball
cap. I have semi-long hair (halfway down my back) that is always in a pony-tail with multiple scrunchies.
I've worn it this way for about 15 years so I know that isn't the reason. I'm going to the drs. Fri for
a depo medrol shot which helps me with the pain as it's getting real bad. I thought I could fight it off
but I know by the symptons there is no way.
Posted 11/19/2009 3:16 AM (GMT -6)
Oh my gosh, I am having this issue for the first time. I thought (again and again!) that I was going mad. The whole top of my head is on fire, it feels like, or someone is pulling my hair. Just the crown, from the top of my forehead all the way on top. I comb my hair with conditioner in the shower and then try not to touch it. Even blowdrying it hurts in the past few weeks. My hair products haven't changed but the sensations sure have. It is incredibly irritating.

I'm going to read about substance P. This is the first I've heard of it.
Posted 11/24/2009 2:04 PM (GMT -6)
Just putting my doctor cap on everyone,
Please read forum rules.
20. Do not use the forum to give professional medical advice. If you are a medical professional, please remember the forums and chat are for patient support and not to be used for distributing professional medical advice and/or using the forum to represent your professional services.

Post Edited By Moderator (Sherrine) : 11/24/2009 12:37:24 PM (GMT-7)

Posted 1/14/2010 12:46 AM (GMT -6)
I am new to this site, but found it when I put a question out on Bing about the terrible burning pain I have on my scalp at the crown of my head.  On New Year's Eve I began to feel like I was maybe getting a cold.  By the next day I was very sick and by the day after that, the cold had moved to my chest.  I missed an entire week of work (I've never had a cold as bad as this one) and when I went to the doctor, he said he believed that it was a viral infection that antibiotics wouldn't help.  He gave me medicine to break up the congestion in my chest.  During the time with this cold, I realized one day that "my hair hurt" on top of my head.  It became more pronounced and painful during the course of my recovery, and it is still so sore, although my cold is almost completely gone.  I was diagnosed with Fibromyalgia several years ago, and take a prescription anti-inflammatory which helps somewhat.  Usually I just don't worry about the Fibro, but now I am wondering if the virus somehow exacerbated the fibro and it is showing up on my scalp.  I am feeling unbelievably worn out and last night I dreamed that I had gone to bed with those hard spiney hot rollers in my hair.  I kept dreaming that I was putting my hand up to feel the hot rollers, and I was mad at myself for putting them in my hair when I don't ever even use hot rollers.  So I guess my head was hurting just being on my pillow.  A doctor commented on another site that this can happen after a viral infection.  Another doctor said that it is caused by too much cortisol in your body, and another one said it is a symptom of Fibromyalgia.  And still another advised taking higher doses of Vitamin B complex for a couple of weeks and that it would go away.  Anyway, it is good to know that I'm not nuts, and that others have experienced this.  Thanks for letting me share.
Posted 1/14/2010 8:53 AM (GMT -6)
I use to get this alot many years ago and haven't had it in a long time.  A friend I work with has Fibro too and she said she gets this quite often.  I can't say I noticed any difference when I changed shampoos/conditioners.  I hope it passes for you soon, I remember how tender and painful this was.  Soft hugs!
Posted 1/14/2010 11:21 AM (GMT -6)
Scalp pain is one of the effects of Fibro. I also have this. It hurts for the shower water to hit my head. I was also told that it's an effect of migraines which I also suffer from. I'm not sure there's part of the body that "isn't" affected by Fibro. It's really a nasty syndrome and one that brings on more pain than most diseases I know of. I'm sorry I couldn't tell you something that will help but that's just part of this little game we all got thrown into.

This is no Social Crisis... Just another Tricky Day (The Who)

FMS, IC, IBS (working on full alphabet) Asthma, Depression/Anxiety

Posted 4/30/2010 4:23 PM (GMT -6)
My scalp is driving me mad, becoming worse every year. Annually in March/April I also end up with bald patches. I keep my hair long so I can cover them up. Shampoo, I never have shop ones as they are like putting acid on my scalp. I buy from France a gentle shampoo alternating lavender and mint. I think mint is the best, probably as is cooling. Always use conditioning spray.

I am liking the relax the jaw idea. My orthodontist always says he's never seen a jaw so strong but I grip my jaw tight because of the pain. The jaw pain is less painful then the scalp, legs, arms, bowel, stomach, girlie bits need I go on.... I find myself grinding my teeth too. But how do you relax the jaw and I'm sick of taking painkillers cause of the side effects are starting to cause problems!
Posted Yesterday 12:26 PM (GMT -6)
I have some questions about Fibro?? I'm only 29 so I'm just wondering first am I to young to have Fibro? I also want to know if Fibro causes overwhelming fatigue? I believe I may have Fibro after reading everybody's posts because I also have the same problem around the crown of my head and It's very irritating at times that I just want to cry cause I don't understand why I feel like this,It effects my day to where I just don't want to do anything to trigger it I'm going to go to the doctors today to talk about this with her so I'm hoping she can figure out what can ease my pain or diagnose me with Fibro or something cause i just keeping thinking Its something worse!

I always think the worse about my health especially if it's something that I have no explanation to why it hurts??

Forum Information

Currently it is Monday, October 22, 2018 5:12 AM (GMT -6)
There are a total of 3,013,850 posts in 330,072 threads.
View Active Topics

Who's Online

This forum has 161955 registered members. Please welcome our newest member, zhuyunziang01.
141 Guest(s), 3 Registered Member(s) are currently online.  Details
Darla, Aurora2013 , straydog