[elainepink]

hi all
Been a while but am going through another flare and am so frustrated. Legs swollen, abdominal pain, joint stiffness and lost my voice which my rheumy says indicates that my lungs r involved. Pretty scary.....On 30mg pred to get me through next week but i dont feel a whole lot better after 2 days of treatment........ am so tired but cannot sleep...
Does anyone have suggestions? I am on pred, diuretics and thyroxine - feel awful and work not very helpful as they said i need to deal with this disease!!!
argh!!!
x e

 

[Maia]

Rest as much as you can on the weekend... and is there any way you can take some time off work? If you are having difficulty sleeping (due to pain or the Prednisone) then you may want to ask your rheumy for medication to help you sleep. Not sleeping enough can really make pain worse and slow down recovery processes.

I find it strange the rheumy thinks your lungs are involved only on the basis of losing your voice though. I hope you don't worry/stress over that one too much.

Regarding your list of meds - it appears as if you're not on a lupus disease modifying medication. Is there a reason why you're not on Plaquenil, or methotrexate, Imuran? A medication like that might help reduce the frequency and severity of your flares...

Best wishes to you ...

 

[sjink]

HI Elaine

I am sorry you feel like this and I agree with Maia that you need to rest as much as poss. However it may be the steroids keeping you awake when you are tired, or the fatigue. I find it hard to sleep properly or deeply when the fatigue is bad or I am in a flare, but just lying with legs up maybe reading or watching TV or just "resting your eyes" may help the joints and give you some time to recover. Worrying about not sleeping is not good, so just concentrate on resting instead.

It is really difficult when work don't understand this illness. Is there any way you can explain that your consultant is doing what he/she can but that the disease is very complicated and not something a patient can "deal with".

I listen to meditation podcasts (free on iTunes) to help me relax during patches like you describe. Audio books are good as well, not as tiring as TV or reading. (Free from the library in our area). Listening to something stops my anxiety getting out of control, because just lying worrying makes the lupus worse for me, I think the tension of fretting affects my joints and connective tissues and worsens the fatigue. And warm baths help, with a drop of lavender oil in which is calming. Or lavender on your pillow.

Hope you feel better soon. It may take a little longer than two days of pred to get an improvement.
Love
Sara

 

[elainepink]

hello and thank you for your replies!
I have only been diagnosed a few weeks but have been ill for years. My consultant is currently mapping my bloods etc from past few years to come up with a long term plan. So i guess some of the drugs mentioned will be included. Although apparently my last set of bloods which were taken about 3 weeks ago, he said that that means nothing really in terms of this illness...
Voice still gone and breathing is laboured so feeling very fatigued - like an idiot promised someone i would take photos at a christening today and that over did it for me. I am just so frustrated with myself and my mind is willing but my flesh is weak!
Was very down today - the grass needed to be cut but i just didnt have the energy - i know i have to accept it but it is so hard as i want to be active and do all of the things i love like dancing and swimming but whenever i attempt them i get horrendous pain in my abdomen - and the cause cannot be determined...........
It is becoming increasingly difficult to paint on a smile to be honest........
Anyway thank you all for your support............
x e

 

[Joandublin]

Dear Elaine

I am so sorry you are feeling poorly. I agree with the others that the sleep issue is very important if you are to get through this period with the best chance of recovering. Can your GP prescribe sleeping tablets for a short period of time?

It is very, very frustrating not being able to do the things we want to do and no matter what anyone says we still manage to convince ourselves that we could do more or are just being lazy etc. Its the most frustrating part of this disease in my opinion.

I am a bit horrified that your employers said that to you. How would they propose that you 'deal' with this disease? By leaving work maybe? I dont know who you work for but I would definitely be concerned if an employer said that to me. There are laws that protect people who are ill and in employment and if you arent in a Union maybe you should consider it. It must be very unpleasant and stressful being sick and knowing that your employer is less than understanding to say the least.

Rather than stress yourself out about work this week, just decide that you have to take the week off to rest and thats what you have to do. Its boring I know but its the only way to deal with this. If you dont it will come back and bite you on the bum darn quick. Get yourself lots of DVD's, choccies and books - whatever you like to do. If you live alone ask friends if they would help out this week maybe doing an odd chore or two. People are very happy to help out generally if they are told what is needed. Is there a strappy teenager in your area who would cut your grass for you for a few bob? It would help ease your worry about it and save you the job of having to do it when you're feeling better.

I hope you feel better soon over the next few days but keep an eye on that breathing issue. If it gets too difficult or laboured you know what to do. Dont hang around with breathing issues.....

Much love and let us know how you are
Joan:rose:

 

[sjink]

HI Elaine
Sorry you are still struggling and sending you some gentle hugs.

I do so relate to that wanting to do things and not being able to them and then beating myself up about it. The lovely people on this board reminded me I needed to rest last week when I was getting very down and confused.

This sounds to me like time to be a bit kinder on yourself and let the grass grow. And take Joan's advice and take time out from those thoughtless employers of yours.

It's ok to feel sorry for yourself, Lupus is a pain in the butt. But its also very much OK to be kind and loving to yourself and take time to rest and recover a bit. The weeks just after diagnosis are not easy ones emotionally and adjustment takes time. Loads of people here to support you through this.

Take care
Sara xxxxxx

 

[elainepink]

Thank you - hi to all - thank you for your advice re rest - i have been trying as much as possible but just finishing 12 days of work straight - really dont want to rock the boat in work as i need to work and cannot afford to loose my job. I took a couple of "personal" half days which did help. Still not feeling great though - just off the steroids and bloated and in pain again - so frustrating...... still have no long term treatment/management... They say patience is a virtue....
Hope you are all well
x e

 

[sillylupie]

Hi Elainepink,

So sorry to hear your frustration, pain and flare! And, it gets very difficult when you have to work, and at the same time put up a strong front! When I was in the workforce, I had to work so much harder, stay late, just to prove that I am "normal" ... I ended being hospitalised TWICE in a year....

I hope you feel better soon..... just remember, rest if you are tired. Don't overwork! Don't let stress get to you.... Always put your health as the main priority, work can wait, but there is only chance in LIFE. LIFE is precious...

Hugs to you ...

Love, Bina

 

[F Jean]

flare again

Elaine, sorry to hear you are experiencing another flare.:sad: Do you by any chance have fibro? If so the prednisone will not work. A percent of ones with lupus also have fibro, and the pain is so similar. It would be worth asking your rhumy about. Take care and my prayers are with you. Jean