Bald spots?!

[BlazingHeart]

I've been losing my hair because of an autoimmune illness. It's been somewhat upsetting, but I haven't really gotten worked up until now. I started with super-thick hair, so I was thinking it wasn't so bad, you know?

My fiance noticed that I now have bald spots. Noticeable super-thin spots and spots that have no hair. I'm crushed and really upset and seriously could cry. This damn illness has done so much damage to my appearance in just the last 6 months. I can't believe this is happening to me.

[Nadine <3]

Oh hun, I have no advice for you. I just wanted to give you hugs!:blossom:

[neko_kawaii]

*hugs* *hugs* *hugs*

[restless]

Im sorry to hear that :-( :grouphug: If Im not mistaken, you mentioned a doctors appointment coming up soon (?) in your other thread about hairloss. Hopefully the doctor will take it serious and maybe see if there are any options or send a referral to someone else who take a look at it. Fingers crossed!

[BlazingHeart]

*hugs all around*

Yeah, I have a doctor's appointment a week from Tuesday. He's the specialist, a rheumatologist, so he's the right kind of doctor. My fiance is calling the office first thing tomorrow to see if they can get me in sooner...I'm just horrified at the idea of continuing to lose hair in the meantime, you know? Not to mention that everything hurts and I have days where I only get out of bed to go to the bathroom and eat dinner because I'm in so much pain. I'm giving the rheumatologist one last chance - I feel like he's treating very conservatively, and I'm not happy with that, because it means a lot of hurting and losing hair and getting fat for me. I hurt, and I feel like an ugly blob that's losing all of its hair. I want to be able to move and exercise and go out to dinner. My fiance and I just had our anniversary on Saturday, and I didn't feel good enough to eat out even at a really close place. I want to start getting rid of the weight I put on while on a steroid (the first thing we tried to contain this), instead of continuing to put on weight because I'm hardly able to move.

Anyhow, hopefully the rheumatologist will understand how intolerable this all is. Otherwise, I guess I'll be shopping for a new one. Ugh. I'm sure part of it is that I'm a complex patient with a whole bunch of medical conditions and the medication to treat all of them, and he's not a young physician, so maybe he's set in this idea of not treating aggressively right off the bat. I don't know. I just hope that this appointment will be different, because finding new doctors and explaining all the things I have going on is always a bit stressful.

[MinderMutsig]

I don't want to discourage you but you do realise that even the most aggressive treatment and the strongest pain medication wont necessarily mean you will be pain free or functioning normally again? I just dont want you to expect miracles and deal with the plummet back down if it turns out it's not working because that is a very painful, frustrating and infuriating lesson.

If you feel your doctor isn't doing what he is supposed to then by all means shop around for another one. But don't expect him to perform miracles. If it really is a form of arthritis and it is aggressive then pain free is an illusion. And normal isn't a fixed thing, with every set back you get a new normal.

[BlazingHeart]

Oh, absolutely. I already had fibro, a genetic condition, joint problems, a heart condition, and GI issues going on before developing this autoimmune condition, so I am well acquainted with 'new normal' and living with some degree of pain. I just want to be able to function. I don't expect a return to the old normal, but being able to fairly consistently spend a good amount of time out of bed would be nice.

I've been seeing the rheumatologist for 6 1/2 months now. He put me on prednisone, then added plaquenil, which I couldn't tolerate. Then he took me off of both, and left me on nothing even though I told him I was having a lot of trouble. As I understand autoimmune issues, while mine is widespread, it is not particularly aggressive. The tests suggest I have had some degree of this condition for about 3 years now (I had positive inflammatory markers and the ultrasound if my hands showed a little flow but I had negative ANA 3 years ago; the diagnosis of undifferentiated connective tissue disorder was made this past fall when my ANA popped positive). In all that time, all that has happened is some synovial thickening in the most consistent trouble area, my hands.

It seems to me that if one medication doesn't work, the answer is a different treatment, not NO treatment. That is why I am frustrated with my doctor.

[Kimberly]

I hope the specialist is able to come up with something that helps you, and that you feel at least somewhat better soon!

[Charybdis]

It seems to me that if one medication doesn't work, the answer is a different treatment, not NO treatment. That is why I am frustrated with my doctor.

Absolutely. There have been a lot of new medications brought to market for autoimmune conditions in the last decade, and if you're not able to function it's time to start working your way through them. Some of them are insanely expensive and can have serious side effects, but you're already bed-ridden - when you're that ill, side effects become a worthwhile gamble. One of my closest friends has serious autoimmune disease, and the only reason he is still alive and able to work is one of these new meds. As a side effect, he has moderately severe psoriasis of the hands and feet, but it's better than being immobile or dead. If your doctor isn't helping you to see if an available treatment which you haven't tried before might improve your condition, it sounds to me like he's not doing his job.

Wishing you lots of luck and hair regrowth! :grouphug:

[BlazingHeart]

The bad news is that I can't get an earlier appointment, so I'll see the rheumy a week from today.

The good news is that the visibility of the hair loss is not as bad as I thought. My fiancé is used to my ridiculously thick pre-loss hair, so he kind of overstated how bad it looks. My part is more visible than it used to be. I had a knife-thin part and now have a pretty normal one. The other spot is a cowlick on my crown, and you can see just a little tiny bit of skin at the center. In other words, I have about as much scalp showing as an average person with a part.

I really hope he has more ideas for treating me this time, because this mess is just not okay. I'd be less than happy if I was just losing my hair, but I could live with it. This being stuck in bed so much and almost never leaving the house and being in awful pain around the clock, on the other hand, is totally intolerable.

[Kimberly]

I don't have anything helpful to say, but I'm thinking hugs at you.

[ErinLeigh]

Have you looked into anti inflammatory diets like the The Perricone Prescription and Oil Pulling?
Of course you would have to Dr and may have tried these type of things already but I someone who had of success doing these things so thought I would mention it.

I am so sorry you have to deal with this. On top of the Fibro and everything else also! My heart goes out to you and I hope you can find a "new normal" that is enough for you to feel you have your life back. I know how hard it is feeling this way when you want to be out there enjoying life.

[swearnsue]

I had some balding on my eyebrows and eyelashes from unknown reasons. The bald spots were there for years. Anyway, I applied a tiny bit of castor oil on the areas and the hair grew back like crazy. I thought the follicles were gone or dead or whatever but my brows and lashes are now full.

I know castor oil is thick and pretty yucky, but maybe your or BF could apply just a bit with a Q-tip to the thinnest spots.

This was a couple of years ago, but I think I only applied the castor oil nightly for a few weeks. And of course I skipped a night now and then.