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Discussion Starter · #1 ·
Hi all, i have been floating in the background for a while now trying to pick up the courage to say "hello".
So here i am. I was diagnosed last june and seem to have been very lucky with getting a diagnosis so quickly.
It all seem to have flared up after my hysterectomy which i had in august 2005. it started with me feeling very tired all the time but i kept putting it down to the operation, i finally decided that it couldnt be the operation in october 2006 as it was going on too long and getting worse not better. Also i lost a lot of weight in a short space of time, which is unusual when taking HRT.
My GP was fantastic and did all he could to help me, also my rheumatologist has been brilliant.
I have got a few other symptoms at present, raynards,swollen and painful hands, painful wrists, painful knees and hips,slight loss of hair, dry mouth and gritty eyes, but it is the fatigue i am struggling mostly with.Has anybody got any ideas on managing the fatigue??
I am struggling to get out of this flare and am having a v bad day today... feel like i am falling apart and need shooting:lol:
I am on plaquenil and dosulepin to help me sleep and for mild depression.
I think that i have rambled enough for now
Pixie:bigsmile: xx
 

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Hello Pixie and welcome :)

I'm gald you have decided to stop floating and join us. We're not a bad bunch and most of us don't bite :lol:

I'm sorry to hear that you are still suffering so much from the tiredness. I have to admit, I have no miracle cure - If I had, I'd use it on myself. I think the most debilitating thing most days is the tiredness. It really does make work and even ordinary every day things so difficult or even downright impossible.

I have tried pacing myself - I still do, otherwise it's even worse - I have tried naps and sleeping in... At the end of the day, I still seem to need and extraordinary amount of sleep compared to everyone else or compared to the old me :). I wouldn't mind so much if, when I was awake, I actually felt ready to go and full of energy but I still don't. I am still relatively early on in treatment (having started in April of last year) so who knows maybe it'll get better.

hope to hear more from you soon,
Katharine
 

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Hello Pixie, I am also glad you have joined us.
Fatigue!!! Sometimes I feel my life consists of doing nothing and still needing a rest.
Seriously,do pace yourself, and constantly re examine what you are doing to see what can be dropped.
x Lola
 

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Hi Pixie
Like you, I also floated around for a while before plucking up the courage, but I am really glad I did now. I was diagosed with SLE April 2006 also have RA, Raynauds, Vasculitis, and Osteoporosis. I take Prednisolone, Plaquenil, Methotrexate and Alendronic Acid for the Osteoporosis and also meds for depression.
Still fighting the tiredness and like Katherine, no matter how much sleep I get I am still tired, but I have a very supportive husband who takes a lot of the strain off.

Take care and best wishes

Meryl
 

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Hi Pixie,

Just wanted to offer you a warm welcome!

This really is a terrific place to chat and learn, so jump right in!

Have a great day,
Sharon
 

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Hi Pixie & :welcome:

This is a great place and I'm glad you decided to join us. I have to say that I'd never had bad fatigue until I recently flared so I know how you feel. I think I have sleepy sickness :lol:

I hope things improve for you soon and I look forward to getting to know you.

Hugz,

Pam xxx
 

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Discussion Starter · #7 ·
Hi all and thank you for the warm welcome:)
I hate this fatigue:mad: I am having a lot of trouble accepting i have this illness, i think that is what is causing a lot of my problems:eek: When i saw the rheumatologist last time and she wrote lupus on the top of the page in extra big writing it kind of sunk in a bit that they havent made a mistake and its not going to go away(wishful thinking).:sad:
Anyway thanks again for the lovely warm welcome:) .xx
 

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Just to add to all the other welcomes, I'm quite new myself and have found it great to be able to let off steam with others who know what you are going through. All the replies are heartfelt and warm. Keep strong and hopefully with the right meds you can feel sort of normal (??) again, take care xx
 

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Hi Pixie

Welcome to the Forum. Im sorry about the fatigue. Its just so debilitating at times :hugbetter: It would be really worth talking to your rheumatologist or GP about this as it sounds like its the most troublesome symptom you have. You need to tell him/her about how much the fatigue is impacting on your life. Just telling our doctors that we are tired or exhausted doesnt seem to get across how much its affecting everything. Its good to keep a diary of this stuff so that when it comes to our appointment times we can summarise the main issues for discussion.

I know there is a drug that a couple of members have tried - Provigil - and have had some success with. Its used to promote wakefulness. It might be worth discussing this with your doctors?

My own experience is that being fatigueD is the most troublesome thing at the moment. Having said that I am feeling much better since the start of the New Year ;) but for a number of weeks over the Christmas the fatigue was just overwhelming. The advice to rest and nap when you can is good. I know its easier said than done but often a 20/30 minute rest/nap will help me get through the best part of the evening.

In any event do discuss it with your Rheumatologist as it may be that your Lupus is not fully controlled and you might need some additional medication. I notice you are only on Plaquenil for your Lupus at the moment.

Welcome again and I hope you enjoy it here
Luv n stuff
Joan:rose:
 

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Hey there, I have been floating too, I just posted my intro check it out!!:) I know what you mean the fatigue is the worse especially lately with this cold weather, my husband says I am in hibernation mode, but no one told my kids because I still get up at 6:25 every morning to get them to school and then if I am lucky I get to take a nap around 8:30 when everyone is where they need to be including me IN BED!!:) then I am up at 11:00 am because I feel guilty that I am sleeping and feel like I should be doing something to earn my keep. Then I remember to take my prednisone so I end up in bed at 2:00 am because my legs are numb and even the feel of the bedspread causes pain. I wish I had a magic wand sometimes!!:) Oh Well,What can ya do??
 

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Discussion Starter · #11 ·
hi joan,
thanks for the reply. the rheumatologist has given me three injections in the bum, the last two had no effect. i have trouble taking anti inflamatries as i have ibs. she started me on maxepa to see if that would help but had to stop taking it due to having pain from it due to my hiatus hernia, so back on the omeprazole, starting back on the maxepa tomorrow.she wants to see me in three months time rather than six months.
i have been in this flare since the end of august with no let up. at the moment i am at the end of my tether. i will mention the drug you suggested next time i see her.
many thanks
moira xx
 
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