Newly diagnosed and really need people's advice!!!

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Hi just looking for any advice really! Or anyone who has similar symptoms! I really hope someone has the patience to read this as I would apprechiate it greatly!!!

Here is my basic details- I live in North East England, female, 25, almost 26 years old! Used to be a teacher but had to give it up with everything that was going on with my health, and I now work part time for the NHS as its all I can manage. I would say my symptoms started when I was 21.

From what I've read so far, it looks like everyone has such different symptoms. So I know that no two people will be the same.

before diagnosis/rheumatology investigation I have had reccuring perocardial effusions (fluid surrounding my heart- extreme pain!!!) and pleuracy and I kept being admitted to hospital- last year it was every month practically (in coronary care) and with lots of other symptoms which have built up over the past few years the doctors have put it down to lupus. (My great grandma had lupus and she had heart problems and eventually had a pace maker fitted)

Anyways I think I'm having my first flare up since being on hydroxychloroquine.

I don't have any rash problems on my face but I do get the following:

Shoulder and chest pain

Joint pain

Really bad clicking of wrists, elbows, ankles and knees.

Shooting pains in my legs, arms, ankles and fingers

Cold, wrinkled fingers (like ive been in the bath!)

Tiredness

Feeling low

Gastro problems

Skin looks like sh*t,dull spotty and tired

Some Hair and eyebrow loss

Some of the symptoms are there pretty much all of the time even when I'm feeling well (I have felt amazing for the first four months after starting hydroxychloroquine up until now) like the joint pain, cold fingers, shooting pains.

Went to rheumatologists two weeks ago and he gave me steroids as I can't cope with this pain in my chest and shoulder (pleural effusion coming back I guess!) and he said its possibly due to summer.

Anyway it's really getting me down as I can't live a normal life in this pain, and im worried this Is how life is going to be!! Ive had bloods done etc and he's considering starting me on a different tablet- azythorprin (not sure on name but sure someone will know what I'm on about!)

My main questions really are:

1) how often do people get flare ups?

2)does anyone get similar symptoms and how do they deal with the flare ups/pain

3) how long might my flare up last??

4) how can u prevent a flare up??

5)did it take anyone a long Time to try different treatments?

6) is there any tips in general for coping?

Thank you soooo much in advance- I would really apprechiate any help here.

Lois x

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8 Replies

  • Posted

    Hi.Firstly let me try to answer your questions.

     1. flare ups really can't be predicted and everyone is different. My last major flare was 18 years ago, but I have minor flares every so often,but rest and double steroids seem to help.

    2.I deal with the pain either by pain killers or rest or both. Symptoms vary but thankfully never had heart problems.

    3. I can only speak from experience as to how long a major flare would last. Mine started in the January but I was being treated for a chest infection by my GP who had no idea about lupus.I just went downhill for the next few weeks untill I was admitted to hospital in March  with what they thought was a major stroke. It was in fact Systemic lupus and it had attacked my brain.Three weeks later after steroids and azathyoprine I was home.My medication is still the same be it a lower dose.

    4.I try to  prevent flares by keeping out of the sun, resting when I need to ,keeping stress to a minimum and generally being aware of the symptoms and getting to my doctor at an early stage.

    5. my meds were sorted early on so I can't be of help

    6. I cope by listening to my body, resting when I need to and just taking one day at a time.I don't class myself as being constantly ill, the good days outweigh the bad, but I have had a long time to get used to the situation.Accept help when it is offered and don't try to push yourself too far. There is always another day.

            As I said to someone else on here life with lupus is not all bad even though at the start it can seem so. I hope this has been of some help to you.

     Take care and all the best.

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  • Posted

    Hi Lois,

    I thought I'd reply as lupus is not talked about a lot, a lot of people I've told don't know vey much about it, so you feel no one understands.

    i was diagnosed age 33, although I had bad joint pain for a long tome. I'm 50 now so you will be able to cope ! My advice is :-

    listen to your body, rest when possible, use pain killers and anti- inflammatory tablets to control pain but try not to dwell too much on the illness. Do not push yourself too hard! Learn to rest when you are very tired.

    i left a full time job 2 yrs ago, but I did push myself the last 5 years to keep going! I now rest all the time and I'm much better during the summer when it's not as cold! I get very cold in the winter. 

    Try to do light ex recuse, I walk my dog when bake and the fresh air is good,  for you. 

    Flare ups come and go, but I'd rest 3-4 days when that happens. They may settle down and now come as frequently as you get older!! 

    Above all all enjoy the good days!! 

    Take care and I hope this Helps.

    jx

     

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  • Posted

    Thank you , both if your replies have been very helpful to me! I think my body and lupus doesn't respond well to stress, this episode would make sense after a stressful few weeks- I am trying to Rest- not that I know how! Lol. I need to practise at resting, I suppose im just but used to it. So today is tv, fruit tea ,sofa and painkillers for me!

    Thank youxx

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  • Posted

    Dear Lois,

    Lupus is very different in each person so here is my tale!

    I started with symptoms aged 21 diagnosed by 22 and been on hydroxychoroquine since.

    I am now 28 and finding that summer does not suit me especially as I am still working full time (37.5 hours per week)

    I suffer with swelling in my ankles and extreme tiredness. My skin use to be flawless but again as I am getting older I find it blotchy and starting with a few red areas. I can recommend Estee Lauder Double Wear to give you a flawless look but at £33 a bottle it is a bit steep!

    I find doing things that keep you happy/calm or things you enjoy will also help with symptoms but not always possible when you are in server pain.

    I would give the steroids a go as I had them short term (6 weeks) last summer and I found they did help. Not only with bringing the swelling down but also gave me more energy and with also suffering depression gave me the boost I needed to do activities I enjoy.

    I think as time goes on I am going to have to be more realistic and find part time work but then the stress about money comes into play.

    It is all about finding what works for yourself and listening to others or posting on pages like this & it will make you realise you are not alone. Sometimes close family & friends try to understand but it is very complex.

    Lots of Love to you

    xxx

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    • Posted

      Hi Katie,

      Thanks so much for your reply! Yes I wear double wear its great helps cover any red patches! Its been a while since i bought some it lasts me a good while- has it really gone up to £33!! :O

      Ive been taking the steroids for two weeks now and I dont feel they have particularly helped, but i still have a further 2 weeks to take on a reducing dose.

      I dont want to give up on the Hydroxycloroquin at the moment as i did feel they were working, and I think that this flare up has been caused by a hot weekend we had (which i spent outside!) and its been quite stressful at home and work.

      I guess its just taking me time to adjust my lifestyle so that I can get the right balance and try to prevent the flares ups as best I can. I guess im also learning the triggers too! I work 30hours a week and I think that is just right. I have a friday morning off and a full day Thursday off, which im grateful of as it takes me a full day to do housework and washing etc!

      I feel that as i am young i should try to push myself to be out alot (i dont mean just going to bars etc, just even doing anything like walking, socialising that kind of thing) but its just not possible. Its hard because i do depend on my partner and try to go out as much as he does. He loves football, cricket and socialising and its not fair for me to expect him to stay in with me all the time, but i sometimes do, and it causes friction in our relationship.

      This is the main cause of my stress because this takes up a lot of his time and i feel like im stuck at home with no understanding friends, and nothing to do. Sometimes this is exactly what i need and i do feel staying in my pjyamas all day with a film is good for me, but its easier said than done- I feel anxious becuase i FEEL like i SHOULD be doing something, It effects my self estheem i feel pathetic! that he's out living his life without me. I know this is really selfish i just cant help but feel crap about it.

      My friends dont understand much, which i dont blame them for, but ive unfortunatley lost some friendships as again, there was friction as i didnt always feel up to going out much and id eben really depressed and anxious before i was started on meds!

      I just need to keep on top of mysymptoms and medication and make sure i get enough rest, eat good, and dont get stressed as much! easier said than done eh!!

      thanks so much!!

      Lois xxxx

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    • Posted

      Dear Lois,

      Firstly on friends - if they can't understand and/or are not willing to listen to you about your symptoms then they do not deserve your friendship! When something bad happens your real friends will present themselves.

      I have also found out who my real friends are along the way. I am lucky enough to have a sister and brother who I like to socialise with a lot. Like you say nothing better than curling up on a sat night with a DVD in your PJ’s.

      I will say one thing that if you do have a PJ party don’t be the host! Show them where the fridge is and tell them to help themselves! It’s sometimes the little things that can help you the most and still have a good gossip and catch up.

      Relationships – I don’t know where to start as I am now married. I don’t want to make you feel worse about your relationship but a very special person once told me “it takes a REAL MAN to always put his other half first.” ALWAYS remember you are the most important person and you have to look after number 1. It is not selfish it is now a fact of life and the way I see it anyone who doesn’t like it can take a run, skip and jump off a very short cliff!

      If you feel your work life is balanced you also need to find that in your home life too.

      Do you feel you are able to discuss your feelings with someone who you are close or maybe some counselling to as sometimes it can help. I am currently on the waiting list as I too suffer from anxiety and depression. No so long ago I was feeling like a failure and that people didn’t want to be around me but my close family and friends made me remember how amazing I am!

      You are no different - You hold down a 30 hour a week job (not exactly part time!) Run a household and still manage to think about your boyfriends feelings in the process! That’s pretty incredible!

      Lots of Love xxx

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    • Posted

      That's literally made my weekend. Thank you so much for your positive words they mean so much! Keep positive yourself!!! Ok???

      Lois xxxxx

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