Dwindling quality of life

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Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 3/2/2011 10:38 AM (GMT -6)   
Hi everyone,

Ive only posted here a couple of times before but sure could use someone to talk to that knows what I'm going through.

A few months ago my Rheumatologist diagnosed me with severe Fibromyalsia and possibly Lupus. She tried me on Prednisone but that didn't work for me. She referred me to a pain management doctor who has been wonderful! Last week I had my first series of injections into my spinal column to help with the horrific lower back pain and so far it has helped, but its not a solution to the problem, just a band-aid.

My question is, what does it take to get an official diagnosis of Lupus? My symptoms continue to get worse and I'm getting really scared. They are:

Chronic fatigue
Mental Fog
Severe Pain everywhere
Cant sleep
Mouth and Nasal Sores
I do not have the typical mylar rash, but my hands are constantly broken out in painful sores that are leaving scars all over them.

The treatment we have tried is Predinsone for 30 days (which only relieved the pain for a couple of days). Pain doc tried me on Lyrica which I had a bad reaction to after just one pill. And now Im getting spinal injections.

The tests I have had over the past 9 years is 3 separate ANA tests (which were all positive) and all showed an elevated SED rate.

My Rheumatologist is currently on maternity leave but I am scheduled to see her in April. I was thinking of asking her to run all the bloodwork again (last time was 6 months ago) and see if anything has changed. Does that sound reasonable?

My biggest issue is that I work 50 hours a week and although I have a sit down job and its realatively easy, I feel like Im working myself into an early grave. I desperately want to apply for disability, but without an "official" diagnosis I dont see the point. The other issue with that is that I would have to cut my hours in half in order to even qualify for disability and that isn't an option. I feel very stuck and have no idea what to do.

I would welcome any feedback from anyone that might have some suggestions for me. This new thing with my hands is very frustrating because these sores are everywhere, painful and sometimes itchy, and leaving scars.

Thanks for reading!

Regular Member

Date Joined Jan 2011
Total Posts : 82
   Posted 3/3/2011 4:32 PM (GMT -6)   
I feel your pain. Yesterday I went to my doctor (again - seems like I'm always there) and when she said she couldn't really do anything more for me, I almost completely broke down and started crying. It sucks being sick like this. Sorry I don't have anything helpful to say!


panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 3/3/2011 5:14 PM (GMT -6)   
Kathryn-has your dr. tried infusions (i am assuming you have SLE or some auto immune) if my dr said that i would break down and cry. ms oregon: you do have somewhat of a basis to start disability with the fibro claim, i don't think what you are askin is unreasonable. with your sed rate high and positive ana that says something is going on. Lupus is not an easy one to dx. i sware it took forever i truly thought i was insane. because my ana was neg and my sed rate was elevated. take photos of your sores and rashes... it is good for drs. and if you do file it is good to help explain things. i have lupus, RA, fibro, persian gulf syndrome, ibs, gerd, ptsd, chronic fatigue, my memory is wack and depression migraines and anxiety and i think that is it. oh possibly another auto immune but i am having testing done soon. (i start in april)

If you need to get a different rhuematologist. When you see your dr. bring a list. make sure you go over everything on your list ( i do this because i cry sometimes) because living in pain and knowing this may be as good as it gets can sometimes be a downer.

You are your own pt advocate. you have to be. Say....i need some quality of life. This isn't working for me. AT all. I am not never was still not a squeeky wheel, so my huband 15 years ago said i am going with you so you tell the truth not well iim ok.

i have a dr. not for the AI diseases that gets my warped sense of humor and my lists. You both have the right to say can i try this.....if it doesn't work with in one month i will go off it. that was how my family dr. diagnosed me unoffically with lupus. he put me on methotrexate. he said if it helped you have an auto immune if it doesn't then you probably don't. it did and we went from there. it gave me piece of mind to know he had a hunch and he didn't think i was nuts.

Be a squeeky wheel. not always just to get some relief. We live in a country where medicine and Dr.s are available, Don't let them give up on you. its ok to cry tell them youre afraid, tired scared,and in pain. tell them you are willing to try what they ask. it has taken years to get me to here... somewhat functional at home on somedays. but i know there is Hope. and for a dr to crush your hope...i have not nice words for that. Best wishes and may you both find some relief. webmd has meds listed for lupus see what they have or haven't tried, there has to be something out there that will work not to cure you, but to make life more tolerable.
with hope...

Forum Moderator

Date Joined Jun 2008
Total Posts : 1470
   Posted 3/4/2011 7:04 PM (GMT -6)   
about the work...talk to your doctor about doing FMLA if you are in the States!!! Also, 50 hours a week? Yes...that is a bit much. Is there anyway you can cut your hours to 32-40, still allwoing the full time status? You need to do something! Your body is needing rest and doesnt sound like you are able to rest that much!!!
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!
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