i have sle...my legs hurt so bad i can only hobble, my emotions are going down, i try to keep positive but then i wake up and i can barely move and i have to fight to just get to the toilet and sit down. my kidneys are involved, also pancreas, i have ulcers on my cervix, i get strange headaches and booms in my head, my feet and ankles have swollen up and so have my knees.....i guess i just need to know if anyone else has the same symptoms as me and what they are doing to get through it. also i am so tired i can hardly function. please someone a little hope.
when does the pain end
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Hello Pilot and welcome 
I'm sorry to hear that you are feeling so bad. I think many here can sympathise and share your frustration. Obviously SLE is a terribly complex and varied disease with people experiencing quite different symptoms and in varying degrees, so yes, many people will share some of your symptoms while many others won't.
You don't say much about yourself in terms of your illness. For example, have you been diagnosed long? What treatment are you on? Do you have a good rheumy that you see regularly? and do you always feel this bad or is it a question of flaring from time to time. I'm asking that last because it seems to me that you shouldn't always be feeling so bad -one would hope not at any rate.
Maybe with a little more info we can provide more support and useful advice
bye for now and hugs :hug:
Katharine
I'm sorry to hear that you are feeling so bad. I think many here can sympathise and share your frustration. Obviously SLE is a terribly complex and varied disease with people experiencing quite different symptoms and in varying degrees, so yes, many people will share some of your symptoms while many others won't.
You don't say much about yourself in terms of your illness. For example, have you been diagnosed long? What treatment are you on? Do you have a good rheumy that you see regularly? and do you always feel this bad or is it a question of flaring from time to time. I'm asking that last because it seems to me that you shouldn't always be feeling so bad -one would hope not at any rate.
Maybe with a little more info we can provide more support and useful advice
bye for now and hugs :hug:
Katharine
new to s.l.e.
i was diagnosed 2 weeks ago by a very good rhematologist , i have had problems with different things ( thyroid. heart, culposcopys) over the past couple of years.....but i guess this is the flare. My doctor seemed to ignore my complaints until I begged him to help me....even then he suggested anti depressants, I haven't been able to work for 3 months because i have such difficulty walking and extreme exhaustion.
i was diagnosed 2 weeks ago by a very good rhematologist , i have had problems with different things ( thyroid. heart, culposcopys) over the past couple of years.....but i guess this is the flare. My doctor seemed to ignore my complaints until I begged him to help me....even then he suggested anti depressants, I haven't been able to work for 3 months because i have such difficulty walking and extreme exhaustion.
Hi again
Well then! That gives us a lot of hope that things should get better for you!
It is quite common to try and help people with a short burst of prednisolone before (and at the start of) being put on antimalarials (plaquenil I presume). I don't know how high a dose of prednisolone you have been given but if you are not seeing a marked difference (you usually see one in about 2-4 days) then you may need to get back to the doc and ask for an increase in dosage. I had to do that back when I was diagnosed as I just couldn't get through a day. You need to not be afraid to complain (loudly if need be) and get the docs to listen.
It is important to know that finding the right treatment plan is not always plain sailing. You will need to arm yourself with patience. First of all plaquenil works slowly. It usually kicks in in about 3-6 months (sometimes longer for full effect). It is an excellent drug with few or no side effects for most people and is used as baseline treatment as it modifies the disease reducing the frequency and severity of flares.
If however you find that plaquenil is not enough, other drugs can be added to your treatment plan helping further control the disease activity.
Lastly, try and pace yourself as much as possible and rest a lot. This is one disease that you should definitely not try to fight against. If your body is telling you to stop, you have to listen. Try not to worry about work right now (I know that's easy to say) and avoid stress as much as possible.
Katharine
Well then! That gives us a lot of hope that things should get better for you!
It is quite common to try and help people with a short burst of prednisolone before (and at the start of) being put on antimalarials (plaquenil I presume). I don't know how high a dose of prednisolone you have been given but if you are not seeing a marked difference (you usually see one in about 2-4 days) then you may need to get back to the doc and ask for an increase in dosage. I had to do that back when I was diagnosed as I just couldn't get through a day. You need to not be afraid to complain (loudly if need be) and get the docs to listen.
It is important to know that finding the right treatment plan is not always plain sailing. You will need to arm yourself with patience. First of all plaquenil works slowly. It usually kicks in in about 3-6 months (sometimes longer for full effect). It is an excellent drug with few or no side effects for most people and is used as baseline treatment as it modifies the disease reducing the frequency and severity of flares.
If however you find that plaquenil is not enough, other drugs can be added to your treatment plan helping further control the disease activity.
Lastly, try and pace yourself as much as possible and rest a lot. This is one disease that you should definitely not try to fight against. If your body is telling you to stop, you have to listen. Try not to worry about work right now (I know that's easy to say) and avoid stress as much as possible.
Katharine
Hi Pilot, please don't give up hope. I also felt overwhelmed when first diagnosed. I was in a flare for close to two years and had to go on disability. Finally I am on varied medicines (Plaquenil, Methotrexate, Humira, Mobic, Zoloft, folic acid) and I'm getting some relief. Be your own advocate. I know it's hard when you're so ill. Share everything with your doctor. You will improve!
Take care,
Susan
Take care,
Susan
thank you
thank you' today is a rough one for me and just the fact that you responded helped my spirits......it's so hard to explain what goes on in your body .....most of my family and friends don't really know what lupus is and the more i know the better but i have to say.....i am scared
thank you' today is a rough one for me and just the fact that you responded helped my spirits......it's so hard to explain what goes on in your body .....most of my family and friends don't really know what lupus is and the more i know the better but i have to say.....i am scared
Pilot, I know you are scared. I hope it helps you to know that I have had SLE for at least 25 years and I am still here. The pain and fatigue can be dreadful but when medication starts to work you will improve. There are quite a few treatments,so it can take a while to arrive at the right mix.
Be Patient.
x Lola
Be Patient.
x Lola
pilot
I am pilots husband, I have watched and admired her spirit energy and drive for years. She is fighting this disease with everything that she can, it's just that it took so long for a diagnosis that I didn't know what to do. trips to the doctor and blood tests and test and tests did not give us any answers.
We now know what we are dealing with, at least I am starting to understand a little of what we are dealing with, I am going to learn allot more that's for sure.
Pilot, I love you, when your hurting I'm hurting. If I could trade places with you I would in a heartbeat. You are strong and if the people on this board are good indicators better days are coming. hang in there and we will get through this together.
I am pilots husband, I have watched and admired her spirit energy and drive for years. She is fighting this disease with everything that she can, it's just that it took so long for a diagnosis that I didn't know what to do. trips to the doctor and blood tests and test and tests did not give us any answers.
We now know what we are dealing with, at least I am starting to understand a little of what we are dealing with, I am going to learn allot more that's for sure.
Pilot, I love you, when your hurting I'm hurting. If I could trade places with you I would in a heartbeat. You are strong and if the people on this board are good indicators better days are coming. hang in there and we will get through this together.
Hello Co-Pilot, It is hard for you to see your Wife in pain.
I have Lupus myself but also have a Daughter with it,so I can understand a little bit of how you feel. It is worth remembering that the treatment of Lupus has improved a lot in recent years, so be very cautious of reading information which may be out of date as it can be unnecessarily gloomy.
There are many Lupus patients who have their disease under control, who are far too busy to come on the site. We get a lot of newly diagnosed people and also some whose conditions are not so good, therefore you may wrongly get the impression that everyone with Lupus has their whole life disrupted.
You are very welcome here and I hope that you and Pilot will both be able to get support here.
x Lola
I have Lupus myself but also have a Daughter with it,so I can understand a little bit of how you feel. It is worth remembering that the treatment of Lupus has improved a lot in recent years, so be very cautious of reading information which may be out of date as it can be unnecessarily gloomy.
There are many Lupus patients who have their disease under control, who are far too busy to come on the site. We get a lot of newly diagnosed people and also some whose conditions are not so good, therefore you may wrongly get the impression that everyone with Lupus has their whole life disrupted.
You are very welcome here and I hope that you and Pilot will both be able to get support here.
x Lola
Hi Pilot
I think that just by coming here and talking about things is a good start. You have just been diagnosed so I am sure you are on a roller coaster with emotions. Glad to know what is going on to finally treat it and scared to know what the future brings. We have all been there and have had those feelings.
The most important thing I think is to know what your treatment options are, to read up here on the site is very informative. Knowing about the disease and what can lead to flares and the warning signs. Although even though I see the warning signs and take a step back, it still seems to come. My only thought on that one is maybe the flare would be worse?
Try not to look ahead into the future disease wise. Just deal with each day as it comes. Even the healthiest people do not know what tomorrow brings so we are no different.
Try to think positive in the fact that you have now been diagnosed, you have started treatment and perhaps in a few months you will start to feel better.
Will be saying a prayer for you and sending hugs your way too.
I think that just by coming here and talking about things is a good start. You have just been diagnosed so I am sure you are on a roller coaster with emotions. Glad to know what is going on to finally treat it and scared to know what the future brings. We have all been there and have had those feelings.
The most important thing I think is to know what your treatment options are, to read up here on the site is very informative. Knowing about the disease and what can lead to flares and the warning signs. Although even though I see the warning signs and take a step back, it still seems to come. My only thought on that one is maybe the flare would be worse?
Try not to look ahead into the future disease wise. Just deal with each day as it comes. Even the healthiest people do not know what tomorrow brings so we are no different.
Try to think positive in the fact that you have now been diagnosed, you have started treatment and perhaps in a few months you will start to feel better.
Will be saying a prayer for you and sending hugs your way too.
Welcome Pilot and co-Pilot. I really think that brighter days are ahead for you, and can't add much more to the wonderful advice you've already been given. You are in early days still, and those early days are hard but you get through them one day at a time with the love and support of the people in your life and anywhere else you can get it (like here - we're a good bunch!)
(((hugs)))
P.S. My brother is a pilot too
(((hugs)))
P.S. My brother is a pilot too
Hello Pilot and Co-Pilot,
Welcome to the site. This is a great place to come when you are newly diagnosed. The site provides so much valuable information. The people here are very friendly and more than willing to share their experiences. No two people experience Lupus the same way so keep that in mind.
I think it is wonderful that the two of you are learning about Lupus together. It is much better when the significant other understands the pain and emotions involved.
Take care,
Lazylegs
Welcome to the site. This is a great place to come when you are newly diagnosed. The site provides so much valuable information. The people here are very friendly and more than willing to share their experiences. No two people experience Lupus the same way so keep that in mind.
I think it is wonderful that the two of you are learning about Lupus together. It is much better when the significant other understands the pain and emotions involved.
Take care,
Lazylegs
hope
Hi Pilot and Co-pilot,
I have been a member of this site for a few years now and although i haven't posted much, mostly due to health reasons i have always found hope here in my darkest moments. My disease is very active and I'm not really having much relief at the moment, I am only 29 with 2 very young children and a business but thankfully like you I have a fantastic husband and hope, every day i try to stay strong and not look too far ahead take each day as it comes and be sure that one day you will find the right medicine for you! you might have to try a few first I hope you have found some strenghth in the words here and that the days begin to get easier for you.
Your body will utimatley decide day to day and there is nothing worse you could do than to be stubborn and not listen.. trust me i'm an expert at it.
Take Care,
Baileys
Hi Pilot and Co-pilot,
I have been a member of this site for a few years now and although i haven't posted much, mostly due to health reasons i have always found hope here in my darkest moments. My disease is very active and I'm not really having much relief at the moment, I am only 29 with 2 very young children and a business but thankfully like you I have a fantastic husband and hope, every day i try to stay strong and not look too far ahead take each day as it comes and be sure that one day you will find the right medicine for you! you might have to try a few first
I hope you have found some strenghth in the words here and that the days begin to get easier for you.Your body will utimatley decide day to day and there is nothing worse you could do than to be stubborn and not listen.. trust me i'm an expert at it.
Take Care,
Baileys
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pilot
pilot,i just logged in again,I feel the same way. you take your meds. like for a waste. JUST dont fret. Im like you too i just cant take the PAINpilot;520757 said:
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14 Posts
pilot i just dont like to suggest this kind of way........but see a pain management DR. GET you some good pain meds.
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