:wink2:Hi there everyone, my name is bev, nickname bubblies, im 46 years old, married to brian, have a 9 year old type 1 diabetic son. Im afull time carer for him. have being treated for chronic stress disorder for 2 years, Fibromyalgia. Now have been told have anti nuclear factor and am seeing a rhumi soon for Lupus . have been in pain for years but was given painkillers cream etc never really made a difference they thought it was in my head until a few weeks ago my body just went into some kind of shock? flu like symptoms, swollen hands knees and feet, hives and redness all over me felt so ill. Ive had blood clots, dry eyes difficulty with dry throat which i was told was anxiety, feel about 85 always cold but have day and night sweats, thought i was in the change, Every day is now so difficult even sitting to the computor causes severe pain in neck arms and shoulders.Is this Common as just do not know what to expect. Very good family and friends, but im very lively and have always been active this is such a shock to my system. How does one cope? what happens now? :rotfl:
new to this!
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Hi there and welcome,
First of all let me reassure you that many of the things you are describing are quite typical for someone suffering from lupus or a similar auto-immune disease. Your body going into "shock" as you say is a flare and when that happens it can be very unpleasant indeed. In your case it may help towards diagnosis, so let's hope some good comes out of it.
It is also common to feel very old :lol: I often say I'm 35 going on 90!
If you take a look in the "not yet diagnosed" section of the board here you will find diagnostic criteria for lupus. It's good to look through that before your appointment as there are some symptoms that you may not connect to lupus but which may be significant to the rheumy.
Treatment has greatly improved for lupus patients and you shouldn't scare yourself too much with some of the outdated info you might find on the net. Unfortunately, we all have to become terribly patient. Firstly because diagnosis is sometimes quite tricky and takes a while and then because working out which meds best suit you etc can also take time.
Most people will first be put on a drug called plaquenil, a disease modifying med which reduces the frequency and severity of flares. It is extremely well tolerated by most people and has few or no side effects. Its main disadvantage is that it can take a while to start working (between 3-6 months, even up to a year for full effect). If that isn't enough to control your disease activity then there are lots of other options out there.
We do all learn to cope. Many of us have had to make lifestyle changes and learn to pace ourselves, avoid stress etc. but that often turns out to be a good thing. The others who do great on few meds rarely come here, so don't be put off by some of the posts you might read. A lot of people who post here are newly diagnosed or in the process of being diagnosed or are among the rarer, more severely affected people.
I hope your appointment goes well. When is it?
Do keep us posted on how you get along and don't hesitate to ask any questions beforehand. Also, if you get any rashes or significant swelling, take photos of them as they have a nasty habit of disappearing just when you have the appointment.
Katharine
First of all let me reassure you that many of the things you are describing are quite typical for someone suffering from lupus or a similar auto-immune disease. Your body going into "shock" as you say is a flare and when that happens it can be very unpleasant indeed. In your case it may help towards diagnosis, so let's hope some good comes out of it.
It is also common to feel very old :lol: I often say I'm 35 going on 90!
If you take a look in the "not yet diagnosed" section of the board here you will find diagnostic criteria for lupus. It's good to look through that before your appointment as there are some symptoms that you may not connect to lupus but which may be significant to the rheumy.
Treatment has greatly improved for lupus patients and you shouldn't scare yourself too much with some of the outdated info you might find on the net. Unfortunately, we all have to become terribly patient. Firstly because diagnosis is sometimes quite tricky and takes a while and then because working out which meds best suit you etc can also take time.
Most people will first be put on a drug called plaquenil, a disease modifying med which reduces the frequency and severity of flares. It is extremely well tolerated by most people and has few or no side effects. Its main disadvantage is that it can take a while to start working (between 3-6 months, even up to a year for full effect). If that isn't enough to control your disease activity then there are lots of other options out there.
We do all learn to cope. Many of us have had to make lifestyle changes and learn to pace ourselves, avoid stress etc. but that often turns out to be a good thing. The others who do great on few meds rarely come here, so don't be put off by some of the posts you might read. A lot of people who post here are newly diagnosed or in the process of being diagnosed or are among the rarer, more severely affected people.
I hope your appointment goes well. When is it?
Do keep us posted on how you get along and don't hesitate to ask any questions beforehand. Also, if you get any rashes or significant swelling, take photos of them as they have a nasty habit of disappearing just when you have the appointment.
Katharine
Thanks for your reply,only got told yesterday that i needed to see rhumi! dont know how im going to avoid stress as mum is on thyroxine for her condition and has breast cancer, dad is disabled so me and my husband do most of his care, and my sons diabetes is unstable at the moment and is awaiting pump therapy due to start in the school summer hols. this is why they thought my pains etc was due to chronic stress disorder. will do what you said and look at the other posts on the site , thanks Bev x
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512 Posts
:welcome:Bev once you get to see a rhumi and see what he has to say then it will put your mind at rest.If it is lupus you will get a lot of good advice on this site there is allways someone that will get back to you we all support one another so keep in touch with the site and let us know how you are.Sorry that your mum dad son are also not in good health Best Wishes to you and your family Elisabeth
Bev, You WILL feel better but it may take a while yet. In the meantime please use sunblock as the UV rays can really make things worse.
It can take a while to find the right mix of tablets but it will happen. I used to feel so bad I could not lift my feet to walk,but I am much better with treatment.
I know it is hard with sick children etc. Mine were similar but are older now, and I can quite understand you not realising what all the aches and pains were.
Take Care,
x Lola
It can take a while to find the right mix of tablets but it will happen. I used to feel so bad I could not lift my feet to walk,but I am much better with treatment.
I know it is hard with sick children etc. Mine were similar but are older now, and I can quite understand you not realising what all the aches and pains were.
Take Care,
x Lola
Hi Bubblies,
I am glad you found the site so quickly. Hopefully you can gain some valuable information that will help you. Feel free to post any questions you may have. There is also a chat room where you can get questions answered immediately. I hope to see you in there.
Take care,
Lazylegs
I am glad you found the site so quickly. Hopefully you can gain some valuable information that will help you. Feel free to post any questions you may have. There is also a chat room where you can get questions answered immediately. I hope to see you in there.
Take care,
Lazylegs
Hi there,
I just wanted to give you a warm:welcome: to this wonderful site... You will find the people very caring and kind... Plus there is a ton of information on here... I can't add to what others have said... I am glad you found the site... And hope you find the answers you are looking for...
Love Penny
I just wanted to give you a warm:welcome: to this wonderful site... You will find the people very caring and kind... Plus there is a ton of information on here... I can't add to what others have said... I am glad you found the site... And hope you find the answers you are looking for...
Love Penny
Hi Bev,
Welcome.
Sorry to hear you are feeling unwell.
Just wanted to say that i have been really suffering and it has really helped me having this site to visit and everyone is so friendly and knowledgable, its made me feel less alone and less alien. I hope you manage to get the same out of it for yourself!!
Good Luck
Cassie
Welcome.
Sorry to hear you are feeling unwell.
Just wanted to say that i have been really suffering and it has really helped me having this site to visit and everyone is so friendly and knowledgable, its made me feel less alone and less alien. I hope you manage to get the same out of it for yourself!!
Good Luck
Cassie
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11,410 Posts
Hi Bev,
It is nice to meet you. This site is full of caring members.
I know how hard it is to be a care giver and be sick yourself.:hug:
It gets very tiring to say the least. When you get on the right mix of meds, you should feel some what better.
Just try to find some time for yourself to rest and recharge your body. Even laying down is good. If you get a nap that is an added bonus.
I went threw my mom having breast cancer a year ago.
Maybe you could get some home health care to come in and help you with your dad?
My husband and I have respite for our handicapped daughter once a month. We call it our date night. We go out to eat and do some shopping.
You take care and it is nice to meet you.
osy:
Lyn
It is nice to meet you. This site is full of caring members.
I know how hard it is to be a care giver and be sick yourself.:hug:
It gets very tiring to say the least. When you get on the right mix of meds, you should feel some what better.
Just try to find some time for yourself to rest and recharge your body. Even laying down is good. If you get a nap that is an added bonus.
I went threw my mom having breast cancer a year ago.
Maybe you could get some home health care to come in and help you with your dad?
My husband and I have respite for our handicapped daughter once a month. We call it our date night. We go out to eat and do some shopping.
You take care and it is nice to meet you.
osy:Lyn
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44 Posts
welcome,i feel the same as you,everyone has given you great advice, just wanted to offer my support. take care x anna
:welcome: Bev,
I know you will find the boards a great place to come to.. People understand you and have experienced some of the same things you are going through so everyone can relate to one another.... Also there is a ton of infomation to be had ...Everyone is so kind and friendly and is willing to give you the time of day when you need it... Hope to chat with you soon.
Love Penny
I know you will find the boards a great place to come to.. People understand you and have experienced some of the same things you are going through so everyone can relate to one another.... Also there is a ton of infomation to be had ...Everyone is so kind and friendly and is willing to give you the time of day when you need it... Hope to chat with you soon.
Love Penny
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