Comment by Erin on October 7, 2010 at 8:33pm

Is it the type of alopecia you have that gives you the scalp pain? IS the medication helping or making it worse? Is the tingling from the med? Sorry I just am trying to learn more.
I am sorry you are having some rough days. I hope you feel better soon. Yes take some time off, relax, try to feel better. I know that can't be easy.
Hugs.

Comment by Chefpam on October 7, 2010 at 8:48pm

There's nothing to apologize for my friend! You are hurting and looking for answers just like everyone here. I took Lyrica for awhile and it made me so dizzy I couldn't function. In my experience, the meds have been far worse than the condition. I too have had numbness in my hands. It could be pinched nerve or a bulging disc? I wish I could help you more, but I am in the same boat...struggling and looking for answers. I hope you start feeling better. Just know that you are not alone. It know it's easy to say relax when the whole world feels like it is falling down around you. Hoping for comfort and peace for you.

Comment by Julie Koch on October 7, 2010 at 8:57pm

The pinched nerve was a thought of mine as well. My left hand is now starting to tremble. I have had severe upper back and neck pain since the scalp pain started due to the fact that I don't move my head and am very tense. I don't move my head because it moves my hair which creates pain. Vicious cycle of pain. I was thinking that the back and neck pain are ONLY on the left side of my body so I wonder if that is contributing to the recent onset of the hand being numb, tingly and shaky. Everything is happening on the left. I see 6 docs next week. The first thing I am going to mention is a pinched nerve. It is so painful. I just hope it isn't a symptom of MS, Parkinsons or something else. More waiting and more tests. I am on the lowest dose of Lyrica and handled it OK. The doc wants me to take half the dose and see if the symptoms subside. I know they won't. It's not the medication. I know my body. I appreciate your help and advice and thoughts on what this could be. We are still searching for the scalp pain cause...

Comment by anita martin rueda on October 8, 2010 at 10:50am

i was looking for your blog to awnser it, but i didnt find it, if somebody deleted your blog i think it is not fair, you have all the right to say how you feel, althout it was very sad and bad, but maybe it was a mistake by the wetsite....i really would like to be able to call u and speak by phone or to meet with you because i am going through for the same situation but i am from spain and it is no posible :(, becasuse sometimes i think what i need is to speak with someone going through the same

Comment by Tallgirl on October 8, 2010 at 11:59am

Why don't some of you "friend" each other and have private messages in each other's inboxes for the VERY VERY down talk? This way, the children, parents of alopecian children and teens on this site won't be scared. I think we adults on here can give longer medical and psychological-type hints that are personal for each other, and it also gives you the chance to print out particular responses for the next doctor visit. I try to do this whenever I want to connect with someone without the whole world reading it.

Comment by anita martin rueda on October 8, 2010 at 7:15pm

FIRST I didnt read the blog, so i dont know how scared it was, but what i am sure that she only needs some support form the people from here not just one....because we are not "special friends" just like you could be from her(just people trying to support each other) ..... so then the bad days only in private?? and here in puplic only we have to put the happy we are getting bald, i dont see that of that way, i didnt read it ,but i dont know what could be so scare, really i was so sad! so scared!? i have read in this site a lot of bad days and that is how it is....and i will not delete this comments because of that way you can see that we have similar sensations when we are down.......if only i read happy comments i will think that i am gettin crazy. AND I REPEAT I DINDT READ TI, but i cant image the terrorific it was to scare to everybody

Comment by Julie Koch on October 8, 2010 at 8:06pm

I will reply in more depth to all of you when I get home Sunday. I just needed to say something now. It wasn't a scary blog or bad. It was me simply expressing my feelings on a very bad day. The scalp pain was so severe I couldn't even eat. It was the worst it had ever been and I was terrified. I cried more than I ever had. I posted the blog because of my fear of things not getting better. They have gotten much worse. I just needed advice and help from anyone and everyone. I desperately needed to find some hope. Someone must have requested that it be deleted. That hurts because I was suicidal and at the time when I needed to express my feelings the most and get advice, that was taken from me. I made it through and am still fighting this. Thank you....

Comment by Tallgirl on October 8, 2010 at 8:39pm

I know the NAAF support groups have to have a doctor or medical person available for the group...I wonder if this site could have a doctor willing to answer medical questions. It seems a lot of people need MEDICAL advice, but none of us who are untrained can or should do that, legally. None of us would want to steer someone the wrong way or suggest something that one might be allergic to, or that would worsen a condition. Of course, no one wants to be blamed or sued...or would want a child to attempt something awful as a "copycat". It feels GOOD to know when someone has decided to work for hope, ask a doctor and get a diagnosis (as you, Julie, did last month...yay!), make a good fashion choice or life decision, try a new activity, etc. With positive words, ALL of us find hope and smiles. I am so glad you live with your parents and have such a great dad...he is right there for you, while we are not. We are not experts, and your situation is very delicate. Your family knows you, your history medically, and the contacts in your own town. Good luck! I am sure all of us look forward to seeing that smile that was on your fishing photo!

Comment by Petra on October 9, 2010 at 4:15pm

Julie, sorry you are in so much pain. I hope that the Dr's can find out what is going on and start treating the illness. It sounds like you have a good support group with your parents, please reach out to them when you need them the most.....hang in there and please know that we are here for you.

Comment by anita martin rueda on October 9, 2010 at 8:06pm

tallgirl- of course we are not medical experts, that is obvious, but to suggest that someone might be allergic to something it is not big deal, because what i mean for this for this person is for her to have some analysis done, and that it, if they come out fine then good for her, but if they are positive then that could be the trigger, so it just an ideas and i dont see any harm in that

Comment

• ‹ Previous
• 1
• 2
• Next ›
• Page