[belindajohan1]

hi i am 29 years old have had lupus since i was 18 i have so many emotions about lupus have noone to talk to that understands my specialist seems to say thats not a part of lupus everytime i complain about some new pain lol i think hes making me think its all in my head
i just need to be able to talk to others who understand
thanks

 

[LolaLola]

Hello Belinda. Unfortunately not all Lupus Docs are good at emotional stuff.

I don't know if you are in the US or UK but try to join us in Chat sometimes, or if you can't do that feel free to open up here. We all know what it is like!
x Lola

 

[karen.w.]

Hi belinda

:welcome: to the forum!

I'm sorry you haven't received much support :sad: there is plenty of understanding & support here on the forum.we understand each other perfectly

how does your lupus affect you?you must have a lot to share too having had lupus for 11 years.

I hope you enjoy being a part of the forum belinda.
take care..karen x

 

[Salopsally]

Hi there Belinda,

Youve come to the right place to make friends who understand. Most of us have been made to feel like we are hypocondriacs at times. Lupus seems to present so differently to everyone but if you have a strange symptom your not sure about if you ask on here you usually find someone who has experienced something similar or the same thing.
It does help when you know your not just making it up or going mad.
Nice to meet you and good luck.
Sal x

 

[Katharine]

Hi Belinda,

I think we can all identify with that awful feeling of having lupus and feeling so alone with it. Who could possibly understand this disease and what it's like to live with it?

Thankfully this forum is a wonderful source of support, implicit understanding, advice and a good few laughs.

My doc is not exactly the sort I'd open up to either but she listens and is good on the medical side so I find that's enough. I'm also really lucky to have an absolutely wonderful partner and, so far, my kids just accept and live with it.

I hope you enjoy being here with us and feel free to ask any questions, we're here for that

Katharine

 

[raggedyann1]

Hello Belinda,

Welcome to the Lupus Site. This is a great place for support, encouragement and knowledge. What medications are you taking to control your lupus? My main disease modifying meds are Plaquenil, Methotrexate and Enbrel. I have other meds for pain and other issues but the 3 I listed are the ones I take to control the disease.

Take care,
Karen

 

[belindajohan1]

thanks

hi thanks for welcoming me i live in australia i have been on prednisone and plaquenil for the last 11 years i have been on imuran and cyclosporin when i have had a major flare at the moment my pred is only 7.5 mg.When i went to the specialist last week i toold him of a new pain in the back of my heel tendons that feels like athriritis he said thats not apart of lupus also the headaches i have every day he says is not lupus related so i dont know if its just me i have constant dioreaha constipation stomache aches they have done all the tests ....nothing do other lupus suffers have any of these problems my rash is in my scalp was infected and i was hospitalised for a week last month its not infected now but angry and sore burning my mouth is always sore i have a geographic tongue again they say not lupus its always sore burning red i cant always eat its just one thing after another i have a great husband who looks after me because im always sore and tired is everyone else tired? i can cook dinner and then im exhausted or hang out washing then exhausted its just ridiculous i feel 80 years old im sorry to vent so much its just the first time i have been able to talk about it my doctors think im a hypocondriac lol i hope im not

 

[Katharine]

Hi again,

I'm also sure you're not a hypochondriac and it makes me mad when doctors make patients think they are

I have tendon problems (weak tendons and calcification on tendons) which are definitely linked to my lupus as they affect me more when I'm flaring and when the disease is generally active. However, when I had a period of remission they disappeared as if by magic!

I also have frequent, almost daily headaches and have had an MRI, EEG etc. which don't indicate why. The neurologist is sure they are part of lupus and I'm sure she's right as when we manage to control the lupus, the headaches also disappear. Headaches are a real pain, especially if they are happening every day. It's awful when you get to the stage where you can no longer remember the feeling of not having a headache and even worse when you are stuggling to work with that every single day.

It seems that you are still feeling a lot of exhaustion etc. without necessarily being in a flare (as you say you are only on imuran etc. when in a major flare). I'm a little curious as to why your doc prefers having you on longterm prednisolone instead of having you on something like imuran which would probably better control the disease. I know my doc put me on imuran (in addition to plaquenil) in order to get me off prednisolone (I'm currently tapering and am now at 7.5mg).

I know that it may be geographically difficult but have you thought about maybe seeing someone else at some stage and/or seeing if it isn't maybe time to think about treating you differently. Even people who are delighted with their docs often say that after a while their treatment needs adapting and the doc regularly does that if need be.

It just sounds like you are really not getting adequate treatment to improve the quality of life and I'm sure that more can be done.

hugs to you :hug:
Katharine

 

[Karly1964]

Hi, Welcome, You are not alone!!!

:hello: :welcome: I am glad you found this site. I have often felt like a hypochondriac, we are not, but coming here has given me so many opportunities to not only get support, but give it and that is important to me as well. I have been diagnosed since April last year and am still dealing with people who just don't understand, but lucky for me my rheumatologist seems very caring and undestanding. She actually asks questions and listens to the answers. I hope that your relationship with your doctor gets better, or at least you have better more fulfilling communications with him/her. I hope you find this site as helpful as I have. Again, glad you are here. Karly

 

[Lily]

Hi belinda and :welcome: from another Aussie (NSW) :foryou:

Sounds like you could be getting a bit better care and attention, stick around you will make lots of friends here and learn a lot in the process. There are some really good docs in Australia that I know of so don't hesitate to ask Of course I'm more familiar with the NSW ones, but know of some in other states as well.

love
Lily

 

[belindajohan1]

hi thanks for all being so supportive i currently have two rheumies a woman and a man the woman seems more understanding but they both dont want me on pain meds stronger than naproxyn which does nothing and they dont want me to have sleeping tablets which i feel i need everytime i have something new wrong they just seem to send me to another specialist for more tests when they all come back fine so i assume its all to do with lupus i also think 11 years on pred is too long now i have oesteoporosis which i think is from the pred i have also put on so much weight from a size 10 to 20 from th prednisone but i dont argue cause i thought they would know better i see a diff specialist for my discoid lupus but i dont think he knows much about sle cause he always sends me back
i hope to meet some of you in chat and thanks again even though i hardly leave the house maybe now i can make some friends and ones who understand xxxxx:wink2:

 

[LolaLola]

Dear Belinda, Yes we do understand and will all look forward to hearing more about you.
x Lola

 

[mumof3]

hi belinda, Welcome to the site . It is great for support and advice.
Mandy

 

[eagle55]

Hi and wecome also, You need to get something for yur pain.even if you have ot see another doctor or just be moe forceful withyour present dr. sometimes that is very hard to do we are taught that drs. have all the answers. well they do not. If you can not find a way to control the pain it willllbe hard to start feeling better. you probaly just need somthing to help you get thru the flair. i have had lupus for 23 yrs now and i know about the pain. at first i had a fear of being hooked on pain meds.but you have to relaize you are the one in control of this. try to talk with your drs again and be very straight forward with them and see what happens. when the pain keeps you awake and you get very little sleep your body has no time to fix itsself.this is a great site for help and just for someone to talk with.email me anytime and take care looking froward to hearing from you. sending you some posite lupus energy eagle. aka sue

 

[raggedyann1]

Belinda,

If I understood correctly you are not currently taking Plaquenil. With your skin involvement Plaquenil is the best medication to be taking. It also helps with controlling the rest of the lupus issues. I don't think your doctors are lupus specialists based on some of the answers they have given you. Lupus affects connective tissue which includes tendons. Several members here have had problems around their ankles from lupus. Headaches is a classic lupus symptom and their are medications that can help bring relief.

I have had lupus since 1988 and except for the first 6 months after dx and the years that the disease was in remission I have always needed narcotic pain medications. In the early days tylenol (name in usa) with codiene was all I needed to get the pain levels down to a manageable level. These days I have of the very strongest narcotic pain medications. The fentanyl patches and methadone. I also take mobic which is a NSAID like naproxen and a couple of medications to help with my Fibromyalgia pain. The medication I take for sleep is one used commonly among the members here. It is a trycyclic anti-depressant called Nortryptaline the other almost identical medication is Amitryptaline. The Nortryp is what amitryp becomes after the liver processes it.

I am also thinking that you are not taking any medication to protect your stomach. I take Nexium to protect my stomach and take care of some other issues that come with another disease that I have.

Coming here and meeting other people with lupus will help you learn so much about the disease and what is currently being used to control it. For detailed information on any subject click on the Lupus Site button on the top left of the boards and that will take you to the main page.

Take care,
Karen

 

[belindajohan1]

hi again thanks to everyone for support karen i do take 200mg of plaquenil each day and i take pariet i think thats for my stomache lol i take so many things i dont remember what each one is for when i was last in hospital they gave me amitryptilline (not sure of spelling) to sleep but they dont want me to keep taking them they gave me mogadon for a short time because i ave probs where im grinding my teeth in my sleep so i wake with a painful jaw but again just for a short time it was given they dont want me to take anything for sleep cause they think im too young to get addicted they say lol well i feel old
thanks to everyone i havent stopped telling my hubby all about the wonderful people here
lilly im in sydney nsw if you know of any good drs here i see a rheumy at liverpool hospital at the moment but most times i see a registrar or his other drs .
belinda

 

[Lily]

Hi Belinda,

I'm down south from you but travel to Sydney for my care. Here are some good docs who have a special interest and expertise in Lupus and associated diseases. It's very common here to have an Immunologist treat SLE so don't let that put you off, I see one.

Royal North Shore Hospital: Associate Professor Leslie Schrieber, Associate Professor Lyn March (both Rheumatologists)

St. George Hospital: Associate Professor Allan Sturgess (Rheumatologist)

Royal Prince Alfred Hospital: Dr. Stephen Adelstein (Immunologist) (very good) http://www.medicine.usyd.edu.au/central/infectimmu/stephen_adelstein.htm

Prince of Wales Hospital: Professor Denis Wakefield (Immunologist)

Westmead Hospital: Associate Professor Connie Katalaris (Immunologist)

love
Lily