Im giving up! : I have the butterfly... - LUpus Patients Un...

LUpus Patients Understanding and Support

3,470 members1,290 posts

Im giving up!

kkgirl profile image
3 Replies

I have the butterfly rash and joint pain and inflamation along with raynods and I have days lim extremly tired and I have a lot of kidney infections. Anyway iv been dealing with joint pain for 9 years. Iv had blood work and ana was negative I had blood work again and I had an ana positive but it was ssdna witch doesn't count... I am so sick of the pain and not getting treatment for anything its just getting blown off. I finely have a rehmatologost appt october but im thinking its going to be the same as always. I just want to figure out whats wrong!

Written by
kkgirl profile image
kkgirl
To view profiles and participate in discussions please or .
Read more about...
3 Replies
gilly57 profile image
gilly57

Sounds like you're having a flare up. I understand your frustration and helplessness with the pain management. Could your doc initiate an earlier appointment with the specialist? I feel for you, though that in itself isn't any help I know! You will come out of it. You will. It'll settle and you just plough on till the next hurdle. Losing weight is something you can always come back to. Don't fret over that one, you have enough to think about. Keep in touch.

lupus-support1 profile image
lupus-support1Administrator

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Your story is all too familiar and I can understand your frustration and distress. The most important thing is to find a lupus specialist. Not all rheumatologists are expert in lupus. In the UK, St Thomas' Hospital Lupus Clinic, London is a centre of excellence. Dr David D'Cruz is the consultant in charge. Referrals can be made on the NHS.

If you have private insurance, Professor Graham RV Hughes at the London Bridge Hospital is the best.

LUpus Patients Understanding & Support (LUPUS) also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

Judylynne profile image
Judylynne

Hi KK. Don't ever give up. Don't let your illness win. There will be better days I promise. Lupus is a cruel and hard disease to deal with and like they say it is a mystery. I've had lupus for years and my blood tests fluctuate all the time. I too have a lot if kidney infections. That alone should concern drs. I suggest you keep a journal of your daily symptoms and good days and bad so you can share with your dr. You may find a pattern and maybe triggers that cause more symptoms. In the mean time be good to yourself. Only you can feel your own symptoms. Be kind to yourself and know you are not alone on this walk. Never ever give up. Keep pushing on. Let us know how you're doing. This site is very helpful when you think you are alone and sharing your story helps all of us to know we are never alone.

Not what you're looking for?

You may also like...

I feel like giving up!

Hello! I am going through all this crazy testing for lupus because I had a high positive dsdna. I...
Jaamore profile image

Unsure if have lupus

Hi, I'd be grateful for any advise as I'm feeling really stuck. I saw gp back in sept as had been...
mrs_t profile image

New and Unsure about me

Hi I am new here and was wondering about symptoms of Lupus. My doctor is sending me to a...
Tereslove profile image

im not sure if i have lupus or im just crazy and its all in my head?

i have pain in all of my joints, no sign of swelling i dont think but have alot of popping , i get...
kkgirl profile image

Maybe and maybe not Lupus

I am very confused and getting angry. I have so many "abnormal" blood tests I don't know even what...
Savonna profile image

Moderation team

lupus-support1 profile image
lupus-support1Administrator
fabwheelie profile image
fabwheelieModerator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.