[lottiex]

Hi everyone,

I have only ever posted once before on this forum and it was a time when I was really frustrated because I was referred to a Rhuemy who basically told me all my symptoms were in my head, even though I had blood tests which showed otherise.

I had all but given up and decided to get on with life as best as I could because I had lost so much faith in dr's that I just did'nt have the energy to fight anymore.

After a few years later I decided that I really needed to do something about it as my quality of life was so bad and I realised I had to try again as I had a strong feeling it was lupus related.

I basically changed my gp who was so lovelly and understanding, it was so refreshing to actually feel like I was being listened to! She said she wanted to send me to a rheumy at another hospital (told her about my bad experience with the previous one).

After some investigations with my new rheumy he told me he was diagnosing SLE and that he could not believe that I was not diagnosed previously as my blood test results were so strong. He is putting me on Plaquenil which I have just started taking.

I am not sure if I have a mixture of cfs as well? one of my main symptoms is chronic fatigue. I was wondering if anybody else found this to be a major symptom?

In a weird way I feel releived that I have been diagnosed now. People keep saying how awful it is to have such a terrible illness, but I don't think of it that way. I think after going for years struggling to get people to actually belive there is something wrong with you it is great to be able to finally know what is causing you to feel so bad.

Anyway, it's great to have a forum like this

Just wanted to share my story with others xx

 

[Katharine]

Hello there and welcome

Your story is so similar to many, mine included. I can well understand your relief at being diagnosed. It really is a first step to doing something about this disease. I'm not saying it will be easy and there will be times when you'll be just as frustrated, especially as it can sometimes take time to get the right med regime for you.

Chronic fatigue is indeed a very important symptom of SLE and totally normal. It is an unbelievably hard type of fatigue to describe, a real wading through treacle, crushing and so heavy. Often you go to bed tired and wake up just as exhausted... It is one of the hardest things to shake off but should improve to a degree (or a lot) when your treatment starts working. For my part it has never gone away but has become less severe and easier to handle. Some lifestyle changes such as learning to pace yourself and knowing when to rest can make a very big difference as can avoiding stress as much as possible.

I doubt you have CFS "as well" as my understanding is that it does tend to be a diagnosis of exclusion and that the two don't co-exist. If I'm wrong on that someone should be along to correct me soon enough :lol:

I'll look forward to hearing more from you and do feel free to use the forum to ask any questions you may have or share frustrations, we all understand that it's hard to find people who do truly understand.

Katharine

 

[Maia]

Katharine is absolutely right - CFS is a diagnosis of exclusion and you couldn't be diagnosed with lupus and chronic fatigue. With lupus, fatigue can be very severe and long lasting. It is also one of the most difficult symptoms to treat. For many though, once on the right treatments for a period of time (often takes 6 months for Plaquenil to start working for example), then the fatigue will lessen or not be a constant companion. Sometimes I wonder if I just manage it better too after time has passed and I get used to it - I no longer feel like I have to do everything and pace myself better than I used to for example.

I also understand the relief you must have with a diagnosis, because it means the start of treatment finally too and now there is real reason to hope you'll be feeling better in the coming months

 

[pollianna]

Hi Lottie, your story is also almost identical to mine. I was sent to a shrink. I had an acute phase bedridden and unable to make memories for 18months then slowly over the years fought my way back slowly slowly but never ever felt right still incapacitated at times no matter how well i tried to live. I feel the way you do too, glad to be finally believed. See were not nuts :lol:

 

[Joandublin]

Welcome to the Forum

I am so pleased that you have a diagnosis at last and can begin treatment.

As far as your query about the fatigue goes, I have to say that it is the most problematic symptom that I have.:worried: I have been diagnosed now about three years and still havent found any treatment that makes a big difference to the fatigue. Many of my other symptoms are under control with the various drugs I take but that is the one symptom which is constant and very annoying.

I am pretty sure that if I left work and paced myself then I would feel less tired but the fact of the matter is that I cannot afford to leave work. I dont have mortgage assurance (courtesy of my diagnosis) and if I left work then I couldnt afford to pay the mortgage. If you are in employment and have the possibility of taking a break or reducing your hours then I would strongly advise you to do so for the sake of your health.

Nice to meet you and hope to get to know you better

Luv n stuff
Joan:rose:

 

[LolaLola]

Dear Lottiex, There is every chance that the fatigue will improve at least some of the time. Plaquenil is not fast acting though, so I would encourage you to do what you can to make life easy, every step counts. Getting rid of useless activity or things you feel you "should" do, this saves a little energy for things you actually want or need to do.

x Lola

 

[lottiex]

Thanks for your kind replies!

It sounds as though most of us have had a hard time being diagnosed/believed then.
I must say I feel hopeful that there is a chance the fatigue may improve now that I am on the meds. I guess i'll have to be patient though, as like some of you have said it doesn't always help with every case.
Thats's really interesting about not being able to have both cfs and sle. I think half the time they probably diagnose cfs because they aernt really sure what the problem is.
I had to give up my career because my illness got so bad, I got to the point where I was too weak to continue. When I look back I had been pushing myself to the limits, but like you say Joan, it's the fear of losing your income that is so scary and you try your best to keep going even though your body is telling you otherwise. I must admit I miss working terribly, but at least I have a bit of hope now that in the coming months things may slowly change x

 

[Shera384]

Chronic Fatigue has always been a major issue for me, I was dx in 2002 & it's only recently that I have started to feel like my life is mine & not the wolfs :lol:
I was also dx last year with Fibromyalgia, & fatigue is a symptom of that too, my rhuemy has recently started me on a maintenance dose of 5 mg Pred, a steroid, it's made a diff to me, not a huge one but it's there, & I feel a lot happier now I can get about.
Plaquenil took over 6 months to work for me, I take 400mg a day, when they try to drop the dose to 200mg, just to a maintenance level within a few weeks I'm in a major flare, so I have to stay at the 400mg dose.

You take care & I hope your meds kick in soon for you

 

[nemo_importante]

Hi

I have found that apart from joint pains fatigue is my biggest problem, being almost incapacitated during flares due to the fatigue. The good thing though is that when my condition is more stable, as long as I pace my self the fatigue is alot less disabling and I can live a much more normal life.

Hope things improve for you soon.

 

[annie1971]

hi there

i have been on plaquinil for 9 months now and i have noticed a vast improvement in my symptoms especially the fatigue. Before my diagnosis i was exhausted to the point of collapse and just could not function. My memory was dreadful and the joint pains were unbelievable. This was all on top of having a new baby. Since plaq i am able to keep going all day, yes i feel tired at the end of the evening but i can actually function like a normal person and i am able to take care of my little one ie take him out etc. Its been an enormous help to me but it does take time (6 months for me) to kick in. I hope it has as much benefit to you.

annie

 

[pollianna]

Awww Annie, what a wonderful post to read, hope you continue along this path. xxP

 

[onetay]

lottiex,
I wanted to say hi. It has been a long hard road for you and I am glad that you got what you needed. It is only the beginning, now you have to find the treatment that works for you. You are right extreme fatigue is a problem for most of us. I myself feel like a big mac truck had a hay day with me( just running back and forth). On a good day it might be a mini van lol. I have found nothing that helps the fatigue not even more rest. I hope this doctor works well for you as it sounds like you have a good one finally. The plaquenil will take 3-6months to start working at it's best. Try and hold out that long it has been 8 years months are nothing to you right lol? I hope you start feeling better than you have been and I know the feeling that you had when you finally found out that it had a name and it was not all in your head. If there is anything we can do to help you please let us know.

 

[Douglas]

I just wanted to congratulate you on such a swift diagnosis!:lol:
Only eight years? Fabulous speed, lightening even. [insert here dripping irony symbol] I had my first recognizable SLE episode in the mid 1970s and was Dx'd just a few years ago.
At least with a Dx, *they* can stop saying or implying that "it's all in your head."
Douglas+

 

[Aggie69]

Hi. I know how you feel because of stuggled for almost 10 years being pushed from pillar to post. Anyway, I'm so glad that you have finally received a diagnosis and hope you start to feel better very soon.

 

[marymackay]

So glad you found a decent doctor

Lottie X
your courage is an inspiration to many of us, so that you eventually found a caring doctor.
'Where I live' does not help me to find a GP or any specialists who know either APS/Lupus. G.P. is not supportive in any way over 2 years, so like you, I may soon find a GP who will really care for me- I hope

 

[elle-co]

Hi Lottie,
It feels strange to congratulate someone for being diagnosed with lupus, but the path to diagnosis is sometimes so long that the relief that you have an answer is just the most amazing feeling :hehe:

So congratulations on finding a dr with some sense, and congratulations on becoming a lupie
I hope that your meds start to kick in soon
Take care
Elle x

 

[Karen B]

This is such a common story! The delayed dx - so here is my question, since I seem to be in the 'delay' period - during the undiagnosed period for you guys did the diseasse remiss, get worse or stay about the same?

My ANA is positive and a positive dsdna to go with it, but mild symptoms - some swelling of the joints in hand and feet, a few mouth sores that don't hurt, low fever (99.8 ), dry eyes. Super fatigue. Super fatigue.

Rhumy didn't want to diagnose me, she said (it's true on that day) my swelling wasn't obvious to her and "anybody can come in here telling me they have symptoms" I don't even know where she is coming from on that - I'm lying to her??? the more I review that in my head the more it bothers me.

So tell me - should I just be patient? Is the treatment so bad that they don't want to treat you until you beg for it? If it take sthe next five years to get dx what will be happening to my body during this period? should I seek another opinion? What was the five years like for you guys that had a delay in dx?

oh, I get a rash in the sun too - agian meaningless to the Dr because I didn't have it the day she saw me.


Lottie -
I sure hope the plaq will make a big improvment for you soon & I'm glad that you have the peace of mind for whre you stand and what treatment should be pursued. This is the benefit to a diagnosis.

 

[lottiex]

hey guys, sorry I havent been on here for a while.

I've got a stinking cold at the mo and it's really taken it out of me. I apologise for the bad grammar, :lol: brain fog city today!

It's so interesting to read other peoples posts. I often feel so isolated with this illness but I do take great comfort in the fact that i'm not alone when I come on here and read through the posts I would love to be able to meet up with other lupies. I haven't found any kind of support group in my area. I live in West Sussex. I wonder if any of you live nearby?

Karen B, I totally sympathise with what you are going through! It sounds very much like my story. Seems like you don't have the best Rheumy in the world. I really think it's down to each individual dr/consultant. My first one I saw wanted to put me on meds and dx connective tissue disease, the 2nd was such a negative experience i lost all faith after being told it was all in my head! but 3rd time lucky now. He dx sle even though my blood test results were not as strong as they were 3 years ago. If I were you Karen B I would definately get a 2nd opinion! I just wish I had done so after my bad experience.
After this happend I just thought that i'll have to get on with this on my own. I tried lots of holistic therpaies to try and help me. The best one was accupuncture which was a godsend but when my rashes were getting worse I new that this wasn't just cfs and something just told me to 'not let this go'.

It makes me sad and angry when so many of us have to go through the hardship of finding a good dr that will actually listen and help us. I think you need to keeping going until you finally find one that is going do this. It may take time but it will be worth it in the end.

I have started the hydroxychloraquine but I have been having problems with it will do a separate post about that.

Thanks again for your lovely kind replies. xx

 

[pollianna]

I'm in East Sussex Lottie, over in brighton.

I am also just starting the plaq or pleq lol, can't remember what it is.

Karen B, don't worry too much about delayed diagnosis. if anything more terible than usual is going on you will be aware. I will say over 10yrs my symptoms have become more clearly those of Lupus, so if anything the mists clear but the pain and exhaustion is awful and we shouldn't have to go through it all alone. I remember telling specialists I was not swallowing spoons lol, so it isn't Munchousens:lol:
. I spoke to my GP yesterday who seemed totally gobsmacked when I told him I have a diagnosis of ICTD. I had asked him for years and years to treat my symptoms and finally instructed him it was lupus lol and asked him to find it. A year later I begged him to let me go to a Rheumy. I had to pull a swifty to get to the London Lupus unit....How we cope with all this I do not know....

Will go look for your poston the plaq Lottie xxP