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Today, i would say has to be the worst day as far as pain goes. I can barely walk my knee is so swollen, and all my joints hurt. If i didn't know any better i'd think someone beat me while i was sleeping. I have been crying all morning cuz i just feel like no one will help me. I made an appt with my family doctor today, who has a daughter with lupus, so you would think of all people she would understand. I currently have 3 of the 4 criteria for lupus and have had them for about 3 years now. I just don't understand why they can't just start me on the meds. I feel like its cruelty. THey act as if i make my pain up in my head, and if thats the case i'm all for being admitted to the psych ward, maybe i can get drugged up enough to not mentally be aware of the pain. I have went to a rheumy and she has done nothing, my ANA is borderline so nothing. I go back in a couple of weeks to her, which i'm sure will end with dissappointment. Does anyone else have this problem? Has anyone been prescribed narcotics for pain, cuz i'm desperate. I'm on the verge of begging. I feel like its taken control of my life, i'm in too much pain and too tired to play with my kids and it just kills me. If anyone has any advice please let me know. Otherwise just some encouraging words would be much appreciated. Thank you.
 

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I am so sorry you are in so much pain, I can so understand the desperation and I only had to put up with that pain for less than a year... I send you some big hugs and wonder if you can go for a second opinion anywhere? I guess if you have 3 rather than 4 everybody will play the waiting game? Surely they can give you some treatment to alleviate the pain in the meantime.... have they given you anything at all? Surely part of medicine is pain control... which is not happening in your case.....you will get depressed if you are living in such pain continually, it is a vicious cycle. :(.. perhaps you could go back to your (or another ) GP and take a supportive family member with you...and your pain grading scales.. to be very assertive that the pain problem needs to be addressed somehow. I think you just have to keep going back and back and back until you are heard, which is soul destroying but a very familiar pattern for many on here...unfortunately. Nobody can understand your pain, unless they are in it or have been there and I feel for you:(..........try and keep assertive and plan a course of action, it will feel better if there is a clear route to follow... I wish you well and take care.X
Claire
 

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FruSTRATION!!

Aziebel,
I really feel for you!!!No one really understand true pain unless they have it. EVEN DOCTORS!!I saw several General practisioners and 7 RHemy's until I finaly found the Rhemy who is treated me now.I drive 2 1/2 hours one way to see her,wait in the waiting rooms sometimes 2 hours but it is worth it because when it is my turn to be seen she gives me the time that I need. Yes is does get frustating waiting especially when you have your husband drive you because you can not drive yourself and you have your son who gets bored to death and of course I most of the time I am in pain!:mad::mad:But she the only doctor that I have seen that will do her job.:mad:I'm not better. It seems like I am always getting worse. I have taken almost all the meds out there and I continue to flare terribly. I had CHEMO(rituxian by IV drip) August 4 and then last Monday. By Tuesday I started to have a sore itchy throat!!I started levaqin 500mg 4 days ago and for the last two nights I have been up all night coughing up phlem,my breathing is loud and raspy.one minute I am hot the next cold with chills. I'm almost positive I have pneumonia. I have call into my Rhemy to see if she wants me to have chest xrays. I have all the classic symptoms and phneumonia can be treated by leaquin. I just know I have it. Lupus is so cruel!!! I can not get the flares under control. I constantly have to go up on steriods.That is why my doctor told me we have to try something else because of my calcium loss.THats why I started chemo. I'm so sick of it. I flare(which means I have so much inflammation I can not get up out of a chair without assistance.Then I have to go up on steriods and deal with those awlful steriods side effects:(:mad:and go for 6 hour chemo and with all the immunosuppresive drugs. I get pneumonia. I guess I needed to vent to!!But please keep trying to finda another doctor.There has to be one for you. Don't give up!!!! ANd it is not in your head!!! I had all kinds of symptoms before I finally found out I had lupus. It just mimics so many other problems that doctors just push us to the side. THere will be one doctor that will eventually help you!! Please try to hang in there. GOD BLESS!!!:)
 

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When you see your GP really stress how much pain you are in and how much it is affecting your life. You may also want to discuss the possibility of a referral to a pain clinic.

Take care,
Lazylegs
 

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Hi there :)

I don't have any great suggestions to add to what's already been said. Just wanted to say that I understand and that it is awful when you're in that spiral of pain that leads to less sleep and all that leads to feeling down which means you can't cope and can't fight... I was once there and so many others too - all I can say to reassure you is that we did eventually get the help we needed. I remember saying to a doc once "yes, I do feel down, I feel down from being in constant pain and being so tired that I can't function". Then, as now, on good days I could beat the world!

Try to remember "Believe in yourself and others will believe in you" - something an ex boss of mine said and it has carried me through so many tough things - just there, at the back of my mind.

:grouphug2:

Katharine
 

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You have been given great advice here. I agree with Katharine if you believe in yourself then others will believe in you too.

Sorry your dealing with so much pain. I think we have all been there and it really can bring you down. I hope it subsides soon for you.

I am glad you found this site. Come here for advice, support and knowledge from a great group of people. I have learned more here then from my own doctor.

Good luck moving forward.;);)
 
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