I can't believe you're saying this. I have the same thing and no neurologists can give me an answer.
A few years ago my scalp pain started JUST as you say. Whenever I went to a new hair stylist I asked them why this was happening. ALL of them told me to see a neurologist but they were unable to tell me why. My doc thought I was nuts and told me to go to therapy. After a few years, I started to get the same feeling in other parts of my body. It progressed and I had terrible tremors/nerve pain/skin hurts/pins & needles and stinging and burning heat..etc. It has taken over my whole body. I was given MRI of the brain, EEG's, SSEP, etc..Have some nerve damage but they don't know where it's stemming from. I also came down with inflammatory arthritis and inflammation of the veins at the same time.
Now I look back and remember the scalp pain. This must have been the beginning. BUT...this is not to say you will ever experience what I am !!.
I'm experiencing scalp pain, too. It's almost always present. Some days it's like my scalp is on fire. I get chronic migraines, so I thought this was part of the migraines. But, looking back, now I'm not sure when this started either. I just know that it's more noticeable than what I remember at times in the past. I'll have to ask my neurologist about it myself. Thanks for posting your own experience with this, too, because now I know what to expect.
You mentioned in your last posting that "now I know what to expect". This was after you read my symtoms (symptoms).
Please don't think that you will be experienceing the same symtoms (symptoms) as me. Everyone is different. Hopefully you won't go through this. It may be a good idea to print out what I wrote and show that to the neurologist.
Thank you. I will print this out. It is good information to take with me to my neurologist. It is something he should be aware of, since it's clearly a neurological symptom. I've experienced so many times doctors not figuring out why I have certain symptoms myself, that's all. No, I don't think I have everything exactly like everyone else, but the scalp burning pain sounds exactly like what I experience. Some days it's worse than others and other days it's just in the background, but it's always there.
I have had fibromyalgia for several years in my back. It took several years before I ever made it to the right Dr. and got the proper diagnosis. When I finally got the diagnosis of fibromyalgia everything made sense to me finally as to my pain and symptoms and how I was feeling. I have major muscle spasms in my back and feel like i've been ran over by a freight trainmy muscles are so sore. It's mostly up the left side. Well this past January I woke up one morning hurting in my left shoulder. Felt like weights around my neck. Then it worked it's way up into my neck and the back of my head. The back of my head is so sore it feels like I have been knocked upside the head with a 2x4 everyday. This has been going on for 8 straight months now. I have has an MRI done and been sent to different Dr.s At first they said I has sinus disease; went to specialist and he said that was not so. Then they said I had bulging disc in my neck and was sending me to physical therapy that only made me worse. I went to chiropracter and that made me worse. I went to neaurologist and he said my fibro had moved up into my head causing myofacial pain. I was hurting all in my temples and jaws and severe earache on left side. They put me on Lyrics and i'm taking medical botox injections. He said I would need a 20 injections to get me feeling like myself again. These shots are very expensive even with my insurance but i'm at my wits end. I haven't been able to enjoy life for 8 months now. I can't clean my house or nothing because the painis so bad. I lay around with ice packs on my head most all the time to numb the pain. I have only had 2 shots so far. My hair is coming out. I'm a 43 year old female. This started in my 20's I'm glad to find others that ate having the same problems. It makes me not feel alone. I have always felt alone in this because I have never met anybody else that had it soglad to have found this forum. Please share any information you have about what treatments you use with me and I will do the same. Hopefully we can help each other through this horrible thing called fibromyalgia. God Bless each one of you!
Yes! I'm not crazy after all. Have had MS for over 20 years, FM for the last 5 years. Scalp pain, and sores on the scalp, hurts to brush my hair. Have tried all the meds, for both MS and FM. Now they want me to be evaluated to see if they'll let me take home a T.E.N.S. unit to address the pain. Has anyone heard of this for Fibro pain? I used to do acupuncture, which helped tremendously - but ins will no longer cover it (Medicare) and I can't pay for it living only on disability now. Any suggestions???
""I also came down with inflammatory arthritis and inflammation of the veins at the same time. "" <<<My doc has suspected this as well...no testing done because I don't have insurance...but everything you said, I have as well. Started out on my thighs, where your hands would touch if you set them down comfortably (ya right) on the top/outer edge of your thighs. Now diagnosed with FM as of January 2011. Just recently have had the scalp pain that has stayed with me now for over a week. I have had this pain in the past but it has never stuck around before. It's so irritating. A lot of times I will just put a hat on because its just another added hurt on top of all the rest and I just don't want to deal with it that day. Started Lyrica a couple weeks ago...this pain started a week ago or so...wonder if there is a connection? I am paradoxical when it comes to meds but this one seems to be helping me alot - except for this new/constant scalp pain.
I have it too. It seems as I it comes and goes. Mostly in the summer time. Burning scalp pain was my first symptom along with massive hair loss. Do you all have hair loss with it? They say the pain comes from when you lose a lot of hair at once. Curious if you are losing hair as well?
My friend has a tens unit that the doctor prescribed for her Fibromyalgia. She also has other spinal problems and so much pain. The Fibro also causes horrible back spasms and the tens unit seems to help with that too.
She sees a pain specialist in Tucson.
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