Hi i have lupus, fybromyalgia need help please - LUPUS UK

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Hi i have lupus, fybromyalgia need help please


I have Lupus and Fybromyalgia, in may i got 2 bald patches at the back of my head,but in the space of 6 weeks i have lost virtually all my hair, i am very upset about this, does anyone else have this, docs said its part of the lupus, i need some support

10 Replies

Hi Lorraine, I have Lupus diagnosed in September 2010 after over a year of being ill all the time. In February this year I also started to lose my pride and joy , my thick long black hair, a few small patches at first, by July i didn't want to go through the door because it looked so bad, I took the decision to shave the lot of and buy a wig. And apart from my close friends, nobody even noticed, they just said how great my hair looked and it made me feel great I knew my hair always looked good and it took 1 minute to do my hair when I was going out. My hair started to properly grow back in August with no patches. I'm convinced shaving it off gave it a new lease of life, within a week the bald patches had hair growing where there hadn't been any for 5 months. I no longer wear the wig, I have a very short style. It may fall out again in the future, but I feel prepared. It wasn't half as bad as id imagined it would be. I know it's a horrible thing for a lady to lose her hair, but here's hoping Lorraine your hair like mine will eventually grow back. I don't know what the future holds, but it's nice to know I have this site for support.

Chin up lady! Take care! x x

I had no idea this could happen. I developed pneumonia after a surgery in 2010 and lost half my hair, and I had long thick dark hair. I still had alot but missed the rest of it. I tested positive for Lupus a little over a year ago and have started losing lots of hair again : / had no idea it could be Lupus related, nobody said a word in the doctors office.Prayers for you and yours

Hi Lorraine, yes this has happened to me many times, and it can be soul destroying especially in a society where you have ads come on tv for hair products and they are flicking their locks, which adds to the problem and can cause further depression. However, as long as it is non-scarring alopecia, you will be fine, it will grow back and I also found by not trying to hide it helped also. Get your hair cut short. Your hair does not define who you are, it is the heart that beats within. When I go through this, the shower cannot drain due to the amount of hair in the plughole, my pillow is covered in hair and household pets run around with my hair casting on them. I could never commit a crime as I would leave hair all over the place!!! I remember when this first happened I would cry at trying to clear the plughole and then I would be so sick from being stressed out ........ it's temporary and you will get there. x

Hi LorraineLT,Moggiemo and wvwwriter

I just had to write to you when I read your messages.

I am sorry to hear about your hair. I know only too well how it feels as I started to lose mine years ago now and it took the doctors the same amount of time to find out it was lupus that was causing it. I therefore lost a lot of hair before anything could be done for me.

Anyhow....not to harp on about the negative, I will progress to the positive!

I found somewhere called Rapunzel in Marlow (UK) and they have fixed me up with a volumizer. It is a hair piece like a little cap that sits on top of your head. They weave it through your own hair (even if there isn't much) so that you feel that it is all your own!!!

When they have finished you simply cannot tell the difference. You end up with a much better head of hair than you would have had in the first place!

If you can get your lupus stabilised on the correct medication for you, then the hair loss should stop. You must keep stress free, not get too tired and stay out of the sun, and hoipefully you wont have another flare. Mine sems to fall out in hand-fulls if I have a flare. However....being positive again; my medicaton seems to help enormously.

I was most unwell until they got the medication sorted and now I feel great, especially with my new hair do. I can wash it and strighten it and curl it all on my head as if it were my own hair. It is a fantastic alternative to a wig, but you have to have some hair left to use with the volumiser.

Otherwise I found somewhere on the internet that supplies wigs that you keep on and wash it as though it is your own hair. They were a bit expensive though.

I used to feel terrible and thought everyone was looking at me. It was even worse when I had a horriible flare and my face was red and blotchy. ( what a wonderful picture I paint of myself!!)

Pleae cheer up and be happy. I am sure you will overcome it and find a way to suit you. It always looks worse to us as we scruitinise it whilst others hardly take any notice.

You must take comfort in knowing you are not alone as there are many of us who know how you feel.

Chher up and....hey...we have a lot to look forward to....it's winter...no sun...yipee!!

x x x

Even if you do not have a high ANA level your Dr. must also test for inflammation when he does your bloodwork. My lupus can be just terrible and the ANA level barely moves, but my inflammation level is way up, I am put on a short course of prednisone. I already am on Plaquenil. The change in weather really affects my fibromyalgia. Lyrica helps that. A muscle relaxer can also help if taken each night several hrs before bed. Don't give up! Get the best rhuematologist. A GP generally doesn't have much experience with all of the different immune problems that one can go along with the lupus. A rheumatologist specializes in training about the specialty of the immune system.. Any way you look at it, lupus can a hard thing to deal with. You and your Dr. must say on top of your health. It's vital to your well being and peace of mind. Just knowing that somebody cares about you and is there to support you can make all of the difference. All of us with lupus know how important that we are to each other.Take good care of yourself. Best of luck to you!

morlobach in reply to birdladynb

Be very careful with Plaquenil. I have SLE & Sjögren combined with Raynaud... Full blown SLE since 1993. I was on PLaquenil from 1993 up till 1998. Then I became close to being blind. PLaquenil leaves sediment in your eyes, builds up slowly. If you check it in time it reverses the syndrome. I have been on Immuran ( Izothiaprine)ever since and only have to keep my blood checked since it slightly thins the blood. The most important thing I can say to all fellow immunies is to try to accept your condition and live with it instead of fighting against it. This is not a fight than can be won, it is a condition that can be accepted and if you work with it you get to enjoy life to the best. I myself take every day as it comes. The bad times I rather forget as soon as possible after analyzing what possibly I might have done wrong to induce a flare up. If and when I find the cause I try to learn from it , but never ever blame myself or any one else. LIfe is just that way , even if you are not ill you'll make mistakes or take more on your plate than you should do ... it's part of it and how we learn our limits. So pls, don't go mad about what you can no longer do , but enjoy the things you still can do, explore gently to further your field and progress into your ability. Being classified as disabled does not mean you can not enjoy life... I garden, cook and create things in my own speed. It balances my rest exercise in the day and stops me from doom thinking. I have had the first years of not acceptance and trying to ignore I was ill ... but honestly , best way is to listen to your body and go with the flow... you'll find that way stress is mostly avoided. If people cause stress around you, tell them you cannot help by becoming ill yourself. Sometimes you will have to be assertive and selfish , and sometimes you will be able to help by showing your ability to deal with life disregards your condition. This is what I like to give to you all ... and if you like to know how I do it for almost 20 years... just drop me a line... believe me, I've had it all, pneumocarditis, strokes, heart attacks, kidney failure, lungs, skin, vanes, nerves, etc etc etc ... defeated death several times and will keep doing for there is just too much to live for.

Hugs to all .... xxx Morlo Bach

I had lupus since September 2007. Only now that my bald patches are getting bad; I used to have them but manageable. It is a bit depressing at first but I found a fun way of dealing with it.

I, so far, got 3 wigs (voguewigs.com seems cheaper) and ordered 2 more this morning. My business requires me to meet with so many people everyday and I have ads with my pictures in a local mall and a community newspaper consistently running for 4 years. So I'm getting people to see me in different hairstyles, I even post them as profile pics in Facebook. It's not that bad, after all. And the wigs look good.

It's good to have support system like this website- this is the best I've seen in years.

Good luck to you.... try wigs. They look glam.

I too have a bald patch but luckily at the moment it's at the lower back of my head. It doesn't make me feel any better when my kids say you can't see it unless you look for it because I know it's there and can feel it. Unfortunately it is all part of Lupus according to Specialist and also can be caused by certain meds. Ask your doctor for advise in case it is the meds. Take care x

Have you been prescribed Lyrica for the fibromyalgia? It really helps a lot. It doesn't get rid of it, but it's much more manageable now. My heating pad and I have become lifelong buddies! lol I use it to literally "bake" the fibromyalgia out of my shoulders. It may not solve the problem forever, but it sure helps get my muscles loosened up. Much better than a hot shower which is only temporary.

Geiriau gwych Morlo bach, dwi'n gwybod yn union be ti'n deud xx

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