Hello everyone, I was recently diagnosed with Lupus. Unfortunately It has taken many years to reach this conclusion and I felt like a hypochondriac always at the doctors!!. I have suffered joint and muscle pain for a few years and have felt depressed, anxious and extremely tired, I have hypothyroidism so the doctor put it down to that. Some days I just haven't wanted to get up in the morning. A couple of years ago I had problems with my knees and had to have physio, then I had real pain in my right shoulder so I was refered to a rheumatologist and had steroid injection which did the trick, then last october I got Flu and within 2 weeks I was in agony hardly able to move my upper body, I couldn't sleep but I felt exhausted, my hands and feet went very red and painful then developed white spots which peeled and left raw patches.The doc then ordered blood tests and put me on tramadol, diclofenac and paracetamol,I stared to feel better but 2 weeks later it was back as bad as ever,the test result was positive so now I have started on plaquenil, I had a double dose of steroid aswell, I just feel so low even though I know its lupus now, I'm just so tired and frustrated because I have been off work for weeks and struggle to do things, even dressing is difficult!!:sad: Will it get any better than this?
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susie4067
hi susie it also took a long time for me to be diagnosed aswell i had a miscarage when i was 21 needed a blood tranfusion then the doctor desided that i should be sterilised so i got that done then discovered i was pregnant i had another miss then came the start of the operations first 1 was right side of my neck then the other side was done next was tennis elbow had the injections for that worked for a little while then had the op the next one was on my wrist for tenosinovitis the next one was to take some muscle out of my thigh last one was on my foot that was in october it took 12weeks to heal i am now waiting to see a podiatrist as i now have a fallen arch the pain in my feet are horrid medication reads like a book but i have a great husband he is my carer 2children 4 grandsons one is only 3 weeks i also have a great mother she is 77 but she is more concerand about me than her self one of my sisters is the same they come and see me every day i go for regular injections in my hips for bursitis had one two weks ago next one is friday
god what a moan i have been you will not want to speak to me again:lol: :hehe:
hi susie it also took a long time for me to be diagnosed aswell i had a miscarage when i was 21 needed a blood tranfusion then the doctor desided that i should be sterilised so i got that done then discovered i was pregnant i had another miss then came the start of the operations first 1 was right side of my neck then the other side was done next was tennis elbow had the injections for that worked for a little while then had the op the next one was on my wrist for tenosinovitis the next one was to take some muscle out of my thigh last one was on my foot that was in october it took 12weeks to heal i am now waiting to see a podiatrist as i now have a fallen arch the pain in my feet are horrid medication reads like a book but i have a great husband he is my carer 2children 4 grandsons one is only 3 weeks i also have a great mother she is 77 but she is more concerand about me than her self one of my sisters is the same they come and see me every day i go for regular injections in my hips for bursitis had one two weks ago next one is friday
god what a moan i have been you will not want to speak to me again:lol: :hehe:Hi Susie and :welcome:
I'm sorry to hear you are feeling so low, but glad to hear that you finally have a diagnosis and can stop feeling like a hypochondriac. Unfortunately most of us here can identify with that feeling!
I can only speak from personal experience but yes for me it did get a whole whole lot better. I have been ill for around 9 years but was lucky to have a two year remission which ended in January 2006. I was then progressively worse and finally got a diagnosis in April 2007. I had to stop work at the end of July 2007 - I simply couldn't go on and I remained pretty ill until around November when I finally started to see a slight improvement due to meds. That improvement became a huge improvement at the end of January and I now feel very good. Obviously, I get tireder than most people and I'm a bit creakier and achier - but they say that creaking doors hang the longest :lol:
So, it took ten months but yes it did get much much better. At times I couldn't see and end to it and people here on the boards were of immense support to me.
Plaquenil is a great med but it will take a good while for it to work - often between 6 - 9 months. Getting meds right often requires a good dose of patience. If things are very bad for you in the meantime or if plaquenil is not sufficient there are many other med options, you just have to be sure to let your docs know just how bad you are feeling and how things affect you. If you say "I can't do X" it often gets their attention better than "it hurts" which is rather a vague notion.
Feel free to ask questions here, that's what we're here for and if you feel like chatting "live" there is a great chatroom. At certain times there appears to be no-one there but if you go in and hang around a bit someone will probably join you pretty fast. It can be great if you're feeling a little low and need some cheering up from people who understand what you're going through.
hugs to you
:hug:
Katharine
I'm sorry to hear you are feeling so low, but glad to hear that you finally have a diagnosis and can stop feeling like a hypochondriac. Unfortunately most of us here can identify with that feeling!
I can only speak from personal experience but yes for me it did get a whole whole lot better. I have been ill for around 9 years but was lucky to have a two year remission which ended in January 2006. I was then progressively worse and finally got a diagnosis in April 2007. I had to stop work at the end of July 2007 - I simply couldn't go on and I remained pretty ill until around November when I finally started to see a slight improvement due to meds. That improvement became a huge improvement at the end of January and I now feel very good. Obviously, I get tireder than most people and I'm a bit creakier and achier - but they say that creaking doors hang the longest :lol:
So, it took ten months but yes it did get much much better. At times I couldn't see and end to it and people here on the boards were of immense support to me.
Plaquenil is a great med but it will take a good while for it to work - often between 6 - 9 months. Getting meds right often requires a good dose of patience. If things are very bad for you in the meantime or if plaquenil is not sufficient there are many other med options, you just have to be sure to let your docs know just how bad you are feeling and how things affect you. If you say "I can't do X" it often gets their attention better than "it hurts" which is rather a vague notion.
Feel free to ask questions here, that's what we're here for and if you feel like chatting "live" there is a great chatroom. At certain times there appears to be no-one there but if you go in and hang around a bit someone will probably join you pretty fast. It can be great if you're feeling a little low and need some cheering up from people who understand what you're going through.
hugs to you
:hug:
Katharine
Hi there and welcome to the site.
I am glad that you finally know what is wrong so that treatment can start to work. The Plaquenil took about 10 months for me as well to really see a difference in things.
Everyone is different and I think it depends on your treatment, your doctor, and a lot on the individual.
I hope that treatment starts to work for you and you start to feel better soon.
There is always room for hope.
I am glad that you finally know what is wrong so that treatment can start to work. The Plaquenil took about 10 months for me as well to really see a difference in things.
Everyone is different and I think it depends on your treatment, your doctor, and a lot on the individual.
I hope that treatment starts to work for you and you start to feel better soon.
There is always room for hope.
Hi susie
A big warm welcome to you..I'm sorry to hear you are suffering at the moment.
It can take quite a while for the plaquenil to kick in,unfortunately anything up to 9 months can be normal :sad: ..however if you are struggling your rheumy could maybe prescribe you a course of steroids or maybe another injection if that's helped you in the past.
It takes quite a while to adjust to the change of lifestyle susie but it will get better..I have had lupus for nearly 15 years now with all its ups & downs.I try to stay as positive as I can but sometimes its not always possible,I am only human after all
you have come to the right place though for support & understanding.
I hope you benefit from being here as much as I have
take care ..karen x
A big warm welcome to you..I'm sorry to hear you are suffering at the moment.
It can take quite a while for the plaquenil to kick in,unfortunately anything up to 9 months can be normal :sad: ..however if you are struggling your rheumy could maybe prescribe you a course of steroids or maybe another injection if that's helped you in the past.
It takes quite a while to adjust to the change of lifestyle susie but it will get better..I have had lupus for nearly 15 years now with all its ups & downs.I try to stay as positive as I can but sometimes its not always possible,I am only human after all
you have come to the right place though for support & understanding.
I hope you benefit from being here as much as I have
take care ..karen x
Thanks
Thank you for all the replies, it is so good to know I am not on my own!! Family is great, hubby and mum very supportive but they have no idea how bad I feel some days and how tired and frustrated I get. I have always been really active and at the moment I can't do anything. Even driving is a problem. I started to feel better last week but then this week I am not so great again and I was all set to go back to work on monday although my doc is great and she did say not to bank on it as things are not under control yet! I dont think my girls understand quite so much as they are all teenagers, suddenly not having mum to do everything for them came as a bit of a shock. I too had a miscarriage when I was in early twenties and I had to have a hysterectomy in my late twenties. I also have IBS which i believe can be a symptom, although not sure on this. Anyway good to know that the plaquenil will work eventually and I did have the steroids a couple of weeks ago unfortunately not had much of an effect at the moment. thankyou again for the welcome
Thank you for all the replies, it is so good to know I am not on my own!! Family is great, hubby and mum very supportive but they have no idea how bad I feel some days and how tired and frustrated I get. I have always been really active and at the moment I can't do anything. Even driving is a problem. I started to feel better last week but then this week I am not so great again and I was all set to go back to work on monday although my doc is great and she did say not to bank on it as things are not under control yet! I dont think my girls understand quite so much as they are all teenagers, suddenly not having mum to do everything for them came as a bit of a shock. I too had a miscarriage when I was in early twenties and I had to have a hysterectomy in my late twenties. I also have IBS which i believe can be a symptom, although not sure on this. Anyway good to know that the plaquenil will work eventually and I did have the steroids a couple of weeks ago unfortunately not had much of an effect at the moment. thankyou again for the welcome
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