Hi everyone - well, here it is, almost 1am and I am still up. Sore and not in too good of a mood. I wanted to share something with all of you. This is kind of strange - but when I was diagnosed with Fibro about 31 years ago (I was 33 then) I had noticed that my scalp had started to become seriously sensitive to even the slightest pulling or tugging. Hurts like hell!!
Going to the hairstylist every 3 months to get my hair cut is absolute torture for me. When getting my hair shampooed and then cut, the tugging and pulling brings me to tears. Afterwards, my scalp actually hurts and is very tender for a few hours. I have always had to brush my hair very gently and shampoo really carefully so not to pull. The sides of my head hurt the most. Although Hannah (my stylist) tries to be careful, sometimes she slips and then the pulling and tugging starts. Do any of you have issues with this? Thanks! Love, Laurie (a sensitive gal! LOL)
HI Kerry - thanks for responding. I clicked on to the other discussion about scalp tenderness, and I guess I am not alone! Having extreme scalp tenderness possibly related to my Fibro is just stunning to me. Is there ANY part of the body that Fibro WON"T hit?? I don't think so! Jeez! Laurie
Hi Laurie, yes I have heard and read that others do suffer with this … I don’t thank god, but I know you are not alone in this, nothing about fibro surprises me ! It seems to have a mind of its own, causing havoc where ever it wants !!
Hi Dee - thanks for responding. As I have said to other members of this group: Is there any place where Fibro HASN"T hit us?? I keep hearing that Fibro isn't progressive, but I truly believe it is. It started in my hips and then over the years now, it's everywhere. How can this not be progressive? I don't understand the medical professionals reasoning. My scalp is feeling much better today! LOL But, still a little tender on the sides. Here I was in a really nice salon, and it was all I could do to keep from shrieking out! I guess that tells you I was more concerned about making a fool of myself, instead of eliminating the pain. Vanity! (Smile) Love and hugs. Laurie
I have extreme soreness at the base of my neck from bending backwards as they wash/rinse my hair. I have given up dying my hair or getting it cut by at a salon. I just keep it short, trimming it myself. I wear wigs to keep the back of my neck warm. :)
Laurie, I realize I'm a dude tip-toeing across to the ladies end of the gym but I will do so with all the respect a fat, bald man can muster.
HAVE YOU EVER HAD A SLEEP STUDY? Let me just leave that there and I promise to get back to it.
One of the quirks of long-term chronic pain is that THE PAIN DOES NOT GO AWAY WHEN YOU FALL ASLEEP. It varies how each individual will process that pain while sleeping. For example, some people may simply moan in their sleep or rock harmlessly in the fetal position. At the other end of the spectrum, there are people who take their fist, squeeze it hard, take their clenched fist AND POUND IT INTO THEIR FOREHEAD AS HARD AS HUMANLY POSSIBLE, PUNCHING THEMSELVES OVER AND OVER AGAIN. Okay, I'm describing what happened to me. My ex-wife tells me that I would pound about once every five seconds and it would go on for hours. I never knew I was doing it and never woke up (except in the morning when both my hand and my head would be humming.
This gets me back to HAVE YOU EVER HAD A SLEEP STUDY? A sleep study can pinpoint the quirks that are personal to you. It was through a sleep study that I learned I was not the only person to pound my forehead into a pulp. Later, my rheumy told me he came across two other patients who did the same thing (yeah, I' not a freak!).
The point is that by doing a sleep study, you may learn somethng that can help.
Hi Marc - yes, I have had 2 sleep studies - and I was discovered to have sleep apnea and it was shown that I toss and turn most of the night. THIS is nothing new. After the sticky wires were removed from my head, my hair looked like I had a party with oily salad dressing! LOL It was pretty unnerving to see a camera in my room too. Laurie
I also have sleep apnea. Are you consistently sleeping with a CPAP machine? I do a repeat sleep study about once every two years and it has regularly become the best night of sleep I have all year long (with the CPAP). Without the CPAP, I have been told that my snoring peels the wall-paper.
Awwww, I'm sorry, that's a nasty place for fibro to hit, Laurie. But it seems you are not alone. This came up just recently and the link is listed above. You're right, it's darned odd to feel pain in your scalp when your hair is being handled. I had no idea that there were that many nerves up there! This is a new one on me. And you're brave for still allowing your hair to be styled. I wonder if anyone out there has a solution to this problem?
I'm not sure if there's a single place on our bodies that's fibro proof. If only we could build fibro proof armor, huh?
Wow, Marc, that's an incredible story! I didn't know that people could self harm in their sleep, due to pain. But it kind of makes sense, in a way, if you have a sleep disorder. I mean, people can go to the fridge and eat a huge slice of cake while asleep and never remember it in the morning! So your point is great and worth checking into for every person who has scalp tenderness. Thanks so much for adding your unique perspective!
PS: Is there a reason that you don't use a CPAP regularly? Or maybe I'm misunderstanding your post. It's just that snoring without use of a CPAP is very damaging on your body. My rheumy got all over me for not using mine. So I do now. And you're right, it really helps to have a better sleep, and thus, a better day.
I didn't really think that my own scalp pain was associated with fibro. I don't want to think every symptom I have is associated with fibro, but I generally end up figuring out that it does.
The example I gave about peeling wallpaper was told to me by the sleep study technician. They hook me up with the sticky glue wires and then I go to sleep without the mask. I guess they are testing the progression of how many times I stop breathing in a certain period (with me, it has been rather a large number). At some point during the night, they hook up the mask and have me put it on for the remainder of the night.
The reason I do not use my CPAP every night has to do with whether I can get to the machine before I fall asleep. I know. You are thinking "what kind of an idiot can't time it right to put on a mask?" There are several reasons, er, ah, excuses.
Because of difficulty falling asleep and then staying asleep, I am on the Elvis Medicinal Sleep Program. That is, I take medication to get to sleep at night and then medication to wake up in the morning. the problem with the nightly medication is that I do not know if it will take half an hour or three hours to kick in so I sort of best guess it. If I feel myself getting drowsy, I try and work my way to the bed...that is unless I am in the middle of a really good movie/tv show in which case I'll risk it. Now that I am alone, there is nobody to worry about the 130 db snoring (the dog doesn't seem to care).
When I was in a relationship, I did my best to go to bed at the same time with my lady. I'd love to be sexist and say that was my best chance to score but the reality is that I loved holding her and being held. For me, that was the best relief I could get form the mental anguish of the pain. That, and I loved being held or holding her as she fell asleep in my arms. If I had to wait another two hours until I fell asleep, I could think of no better way to spend those two hours. Also, if lovemaking was involved, there were nights when I'd fall asleep before getting the mask on (hey, I maybe a romantic but I am still a man).
Finally, the best chance I have of falling asleep is to read after I take my downers. The problem is that I often fell asleep while reading
My doctor prescribed what is essentially an old style leather football helmet which I actually picked up at a medical supply company ($75 - is there anything they don't sell?). It's a bit tight but it is supposed to prevent my rock hard fist from causing concussions should I begin pounding away again. Personally, I think this was only a problem because I have a perfect head (you know the saying, "God only made so many perfect heads. On the rest, he put hair"). The doctors are scared that my enormous fist (again, I'm six-foot-seven) pounding away at a bald head several hundred times a night as hard as can be hit without a single response from me. Personally, I thinkn n they at7twer looooking foor p jsometg8huo zjf i h oi zthat wasnt thereeeeeeeeeeeee. SQUIRREL!!!!!