[Maggy]

Felling quite low and looking to share how i feel - it is hard for those around me to understand - have grown in size phenominally - although everyone says 'no your not fat' i feel fat and when i look at myself i look fat - so i dont know who they are all looking at! got so dispondent with the amount of hair falling out - on my pillow every morning - in the shower - every morning - in my hair brush blar di dar di dar.... decided it would be less traumatic to cut it instead - now very depressed - i dont look like me at all - my face has changed - my body had changed - my hair (whats left of it) has changed - i dont know who i am any more.

am in pain all of the time!

Sorry to post such a depressing intoduction - just looking for some empathy i guess!

does it get better - have been like this for too long!

 

[Katharine]

Hello Maggy and :welcome:

I'm sorry to hear you're feeling so low. Yes, we do understand and it's fine to whine away when you need to.

As to whether it gets better, well, that's a very individual question really so no-one knows the answer.

Have you been diagnosed long? Do you have a good rheumy? What meds are you on? Maybe they need reviewing...

All sorts of things can change the answer to that question.

I don't know if you really are too big but I do know that any change in size is too much for us most of the time. I was lucky to only go up one size and that wasn't due to meds but just due to flaring. I still felt enormous though. Everyone was also saying to me that I was fine etc. I think half the problem for me was that I was feeling bloated half the time, that definitely didn't help. The other half of the problem was I hadn't had enough money to buy myself those clothes that were one size up. So, after over a year and suddenly realising that no, I was not going to lose that weight right now, I went out and bought myself new clothes. And suddenly, I didn't feel fat anymore. As I say, that's only my experience and for you it could be so different but it's important that those who love you don't seem to think you are.

As for the pain, that is something that needs addressing. What does your rheumy say about it? Longterm, constant pain has a very bad effect on everything including morale.

bye for now and hugs to you
:hug:

Katharine

 

[Maggy]

Thankyou Katherine

it really helped to have your reply .... just to know its not only me that feels these things.

i was diagnosed with Discoid lupus in june / july of last year ... that was hard enough after being told that the horrendous marks on my face and arms was psoriasis and nothing to be worried about for over a year - during that time i only saw the GP once and was not able to get past the nurse at triage .... so i changed my GP and then things changed. by then the marks were on both sides of my face on both arms and beginning to form on my scalp. i was given plaquenil and steriod creams. neither made any difference. (oh and sun screen)

my health .... which has been up and down for about 20 years with one thing after another - digestive problems - diagnosed as - gall bladder disease, pancreatitis, ceoliac disease, colitis - being well at some times and very debilitated at others - at one point the consultant removed all meds i was on and gave me anti-depressants (my response to which was to burst into tears and say 'i'm not depressed') although having said that i have also suffered from depression on and off also for the last 20 years.

my liver funtion tests were up and down - regularly being asked how much i drink meeting unbelieving raised eyebrows each time i told them i dont!

last feb my knee gave way - doing nothing at all - follwed by a cartlige op in June - no change to the pain or swelling.

2003 i began to have seizures and was diagnosed with epilepsy - even though i have never had it b4 and there is none in my family - and the EEG did not show it - the fact i had had more than 3 seizures was enough. have suffered 'migraine' lasting days since i was 19.

last nov kidneys stones and thickening of the kidneys

May this year admitted to hospital with suspected bleed to the brain

at last GP stops and thinks 'hang on a min - something here not right!!!'

hurrah - at last i dont feel like i am imagining it - making it up or simply just the most unlucky person in the world with my health.

when i am well i am very very well but then i have these periods of time which i now know to be flares!

referred to rhummy - more tests

DIAGNOSIS .... not just discoid SLE

put on Prednisone and something beginning with A - that i cant spell or pronounce - that i had to stop due to a lack of an enzyme and put on Mycophenolate which i have been taking now for a month - dose now increased to 750 twice a day.

my hair was falling out in handfuls (bad enough that i have huge scared balding) not what was ok was falling out - so now i have no hair - i am bald, i am bloated and have increased from 6/8 last summer to 12/14 - cant wear my wedding ring (only got married last august - after 5 years of him asking!) - my face is scared. i dont look like me.

doctor is wonderful - but at early stages right now with adjustments to meds - got better pain relief yesterday and slept last night ( well at least until 4.40)

my god what a moaning whinning pest i sound!

not always like this i promise. but thankyou for your support and for listening!

Maggy

 

[Katharine]

Oh dear Maggy (((((hugs)))))

No no, you don't sound like a maoning whining pest - you sound like someone who has been through an awful lot.

Apparently you're quite early on in your treatment. I presume the drug that you couldn't take was azathioprine (otherwise called imuran)?

I really hope that the cellcept (mycophenolate) starts to work for you and that it works well.

I don't have any experience of your sort of problems, especially not the discoid, hairloss and scarring issues. I'm sure that someone more knowledgeable will be along soon and they may have some suggestions.

bye for now,
Katharine

 

[kim5010]

Maggy ... sending you loads of gentle hugs ......

Hang in there, we are here with you.

Kim

 

[LolaLola]

Maggy, Hello!
12/!4 is not very large. (About my size in fact). I am sure the skin issues are very hard to accept and I imagine you are pretty angry at some of the poor treatment you have received.
I am assuming you are in the UK. Is that right?
I waited a very long time for diagnosis, but I can really promise you that when you get the right Consultant and the right meds. (which can take time) things will improve. I used to be totally unable to drive due to such awful head and neck pains, could not even turn my head to get car off driveway. It improved greatly although I now need an automatic , and would be totally incompetent on motorways at least I can drive again.

I have had brain issues too, they can be very disorientating and frightening.
If you need to talk go right ahead. We ALL need support sometimes and being newly diagnosed is not an easy thing.

How is your Husband managing? They don't always find it easy and sometimes pin their hopes unrealistically on miracle cures, special foods etc.
x Lola

 

[bugsy]

Hi Maggy

First of all :welcome: to the lupus site and a little hello back at you.

After reading your posts there is no wonder you are feeling down. It is hard dealing with an illness especially when nobody else as heard of it. I found that one of the hardest things about having lupus, i tried explaining the best i could to the people around me about how i was feeling and they say they understand but nobody can understand how it feels unless you have experienced it, thats why coming to this site and sharing your troubles really does help because people do actually understand where we are coming from.

I really hope that this site helps you and makes you feel very welcome, it really did help me in many different ways joining this website plus i have made some really good friends so thats a bonus.

Take care :bunny: Jo :bunny:

 

[Mrs M]

Hi there Maggy and Welcome!

I just wanted to send you a gentle :hug:

I'm not diagnosed but going through tests and appointments which does really get me down and miserable at times.

I think you have every right to feel a little down with all that's happened to you.

I hope today you can have a good day and take care of yourself.

Mrs M x