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Lupus Online Support Group

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Lupus Forums › General & Support › I DON'T KNOW WHERE TO TURN
04/20/2012 04:02 PM
CMAESTAS40
Posts: 3
New Member
Sad

Hi,

This is my first time trying a online support system. I just needed to vent my frustrations. I was diagnoses with lupus and fibro. about 2 yrs ago and i have been in constint pain for the past 2yrs. some days better then others but pain level never below a 4 for me. I forgot how it feels to be normal.to top it all off the LUPUS has attacked my eyes and this is a whole other level of pain. i am so frustrarted i feel like just saying F*** it and give up.All i do is cry from pain and from anger. i don't know how much more i can take. iv been strong for 2 yrs and kept my head up. some times i feel i would be better off dead
Reply

04/20/2012 04:15 PM  Top
redhairali
redhairali
 
Posts: 3398
Group Leader
Hi and welcome to the group. It sounds like you are going through a rough time right now. What is your rheumy doing to help with the pain? Another option is seeing a pain specialist. Do you feel like your doctor is doing all he can? Maybe you should think about changing docs.

Just remember you not alone. It helps so much to talk with others that can understand what you are going through. I hope you visit often.

Alison (Sorry if this seems a little choppy, having a bad brain day) Blink

Post edited by: redhairali, at: 04/20/2012 04:24 PM

04/21/2012 12:17 AM  Top
hawakeita
hawakeita
 
Posts: 1695
Group Leader
I'm an Advocate
Hello. I can hear your pain. We have all been there. I liked everything that Ali said. What medicines have they put you on? How are they helping handle the pain? You can always fire a doctor who you don't feel is helping you. It's probably the best thing I ever did for myself. I'm sorry about your eyes. I would like to know more about what is happening to them. Mostly I just want you to feel better soon and I hope to see you around here often. Hang in there.

You make me think about the "It's Gets Better" campaign they've been doing in the LGBT community, to help kids survive the bullying. I'm thinking maybe it's time for a "It's gets better" campaign for Lupus to keep all of us hanging on when the going gets so rough.

I guess that's what this group is to me, my 'it's gets better, and even if it hasn't I've found a great group of people to share it with' campaign.

MK

04/21/2012 02:49 AM  Top
willywong
 
Posts: 91
Member
Hi there Im quite new to this illness ,Im sorry youve been in so much pain for so long. I wondered if your doctor has prescribed you anti depressants, they may help . Ive been given amytriptyline which helps me get throught the night pain, sleep and is also an anti depressant.I think you need to keep pushing the doc for pain relief that works.Take care

04/25/2012 03:32 PM  Top
CMAESTAS40
Posts: 3
New Member
THank you all for the kind words. I have been going to the same rhemy for the past 2 yrs and it feels like he is not helping, so i decided to stop seeing him. I am not sure what to ask the doctor when decussing pain managment ever time i bring it up my primary says that i should get accupuncture or take ibprophe which i do but doesnt help and when i ask for painkillers that do help she says she wont give me any. Its very frustrating. can anyone help me

04/25/2012 04:29 PM  Top
Looopie
Posts: 1866
Senior Member
Hi CMAESTA, I think Ibuprofen is too weak. You could ask your doctor to given Naproxen which is a longer lasting and stronger NSAIDS than ibuprofen, or some Celebrex if you have gastric reflux or burning. There is over the counter codeine that you could take with the Naproxen, but I think you will find the Naproxen would have given you relief. All the best. Marie

04/26/2012 01:29 AM  Top
hawakeita
hawakeita
 
Posts: 1695
Group Leader
I'm an Advocate
Hello again. When I first had symptoms, they told me to take Ibuprofin 800mg three times a day. It did nothing and make me sick to my stomach. They also gave me an RA medicine Diclofenac that did absolutely nothing. It wasn't until I got on the Prednisone and Plaquenil that I got any relief. When I go to my doctor, I describe in detail the pains and weird symptoms that I've been having. I think that helps, well, definitely me, keep track of what's going on, for them to be able to truly have a sense of what's it been like for me day to day. I'm still wondering about your eyes. How are they doing and what's going on with them. Here's hoping that you find the help you need and start to feel better soon.
MK

04/26/2012 05:36 AM  Top
willywong
 
Posts: 91
Member
I really think you need to change your doctor, pain control is very important especially the levels of pain with lupus. No wonder you re feeling so desperate.Please consider it.

04/26/2012 08:14 AM  Top
Sharlene
 
Posts: 414
Member
Sorry you are in so much pain. I'm glad to hear you said you are going to see a new doctor. I've been in that situation. Just remember to write all your questions down and have a pen in hand for your answers. Make them simple and to the point. I hope this helps.

Previous discussions I participated in:
Stomach Issues
Drs drs drs...
PAIN!!!

04/26/2012 08:40 AM  Top
CMAESTAS40
Posts: 3
New Member
@hawakeita My eyes are better but they are still swallen and red and huet only in the morning. It is the weirdest thing i have ever experienced. i think the predisone is what is keeping the inflamation down. But makeing my mood completly unbearable, i am so angry all the time. i hate predisone. my So called primary gave me Diclofenac and it made my sick to my tummy but did nothing for the pain. i feel like adrug addict asking for pain killers. its a horriable feeling begging for pain relief, but narcatics are the only thing that releives some of the pain. Do you know if there is pain control for lupus and fibro because it seems every doctor i see has no clue what to do with my pain levels.

@Sharlene thanks that is good advice about writing things down. it alwasys seems my mind goes blank when i see the doctors
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Health Topics: lupus pain and anger
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