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LivingANightmare
03-06-2012, 08:00 AM
I am a 27yrs old female who has recently been diagnose with lupus and fibromyalgia. I have been to dozen of doctors over the last 5yrs and was just recently diagnose last year. I am having a very hard time coping and dealing with this illness I joined the site because maybe it will hearing from other who are going through the same thing I am will help. I was recently out on medical leave for the past 6 months and due to the insurance company denying my longterm disability claim I was forced to come back to work. Today is my second day and I am trying to adjust however the medication that I'm currently taking causes severe drowiness coupled with the chronic fatigue I can barely keep my eyes open. Any suggestions??? Saying that this illness has changed my life is an understatement I use to be very active and sociable now I barely have enough energy to get out the bed each morning. I have lost my husband and lots of friends. The only symptons I am experiencing is joint pains, chronic fatigue, muscle spasms, and chronic migraines. So basically I'm always in constant pain. The doctors stated my blood tested positive for ANA of lupus but my flares are more coming from the fibromyalgia. I am trying to cope as best as possible coming to work everyday is a struggle and I don't know how much longer I will last I have read other posts about having to go on disability but I keep telling myself I'm to young :-(

SleepyInSeattle
03-06-2012, 09:05 AM
WELCOME - you will find a whole lot of support, wisdom, and understanding here!!!

I am really sorry you are not doing well - that sucks. But I am glad you have a diagnosis, because hopefully that means your doctors can help you treat your symptoms and get you to where you are not suffering so much. Sometimes that takes a long time - a year or more - so don't give up. And then again, things will change, and you'll have to figure it out again....it's just the way it is. These diseases are complicated, and since every individual is different, it can take a while to find a good balance of medication, lifestyle, etc....so be patient with yourself, and DON'T GIVE UP.

It's a good idea to keep a journal of your symptoms to bring to your doc when you go in. Understanding and recognizing the patterns can help to create an appropriate treatment plan. You might feel like a hypochondriac, bringing in these long lists of things, but it's your doctor's JOB to sort out what is relevant and what's not - it's your job to simply bring him/her the facts. Eventually you will learn how to be more savvy about things hopefully catch flares earlier and earlier, so HOPEFULLY you and your doc can help head them off, or at least limit their effects.

Diagnosis is not the end - it's just the beginning of understanding - and understanding often brings more effective relief - so stick with it. Some people around you will understand, and some won't...but at least now you can explain WHAT's going on....

chikititalinda
03-06-2012, 09:31 AM
Oh hunnie, I'm sorry you're feeling miserable and still having to work. Alot of us know that feeling much too well. This is a great place to come learn and vent. Theres a ton of information here. I don't post too often but visit daily and find theres always something to learn. Like you Im flaring mainly from fibro as well and still working. Hang in there, it should get better.

Saysusie
03-06-2012, 10:42 AM
First, I want to welcome you to our family where you will find that everyone understands and the people here are filled with wisdom, great advice, and tons of caring.
The fatigue is something that we all have difficulty with and we all try to find ways to overcome the fatigue or to, at least, maintain some form of normalcy with it. The fatigue can be debilitating and you cannot just push through it, that only makes it worse. I don't know what type of work it is that you do, but if you are able to take rest periods at work, I would suggest that you take full advantage of those periods and try to get as much recuperative rest as you can. I know that this is even more difficult when taking medications that also cause drowsiness. The only advice that I can offer in this respect is to consider taking those particular medications at a different time of the day, if that is at all possible.
Getting approved for disability is always an uphill battle for us. Some have been successful, but most of us have not. I wish you the best of luck in this area. Perhaps someone will come along to give you some helpful advice in this area.
I am glad that you are here and happy that you decided to join us. I am so sorry that you are suffering from you Lupus and Fibromyalgia. I, too, suffer from both and, like you, most of my pain, headaches, and fatigue are due to my Fibromyalgia. I know that you will find a lot of useful information here as well as many kind and caring people..again, welcome.

Peace and Blessings
Namaste
Saysusie

tgal
03-06-2012, 11:02 AM
First let me welcome you to WHL. I am so glad that you joined.

Your story sounds much like mine except that when my long term disability was denied I wasn't in a place to attempt going back to work and I knew it. That was the day my battle for SS disability began.

I too have Firbo as well as Lupus (and several other wonderful things). You will find that once you have an autoimmune disease diagnosed they will actually start putting names to all those strange things that have been going on with you for years. You may end up with several named diseases and we call that "overlapping diseases". For most of us it isn't about getting more ill it is just about putting a name on something.

One of the reasons you may be having such a hard time at work is the florescent lighting. It is very hard on some of us. Try putting on sunscreen over 50 (I used 100), long sleeves, a hat if they will allow it. I was lucky enough to have my own office so I would turn off one of the 2 florescent lights in there and that did help. Also, ask your IT department for a UV blocking screen cover for your computer screen if you use one. They usually have them and will send one out to you. It will help quite a bit if you have an older computer screen.

I do hope you get to feeling better soon. Welcome to the WHL family. You are not alone anymore

LivingANightmare
03-06-2012, 12:12 PM
Thank you all so much I feel so much better talking to people who understand what I am going through as you all may experience as well not many people understand my ilnesses and don't take them very seriously mostly because one day I can be ok and moving around and the next day bedridden. I work in finance so I'm sitting at a desk all day at a computer (Can you believe the insurance agent actually said since I sit down all day I should be able to work it can't be that bad??) I do try to keep a journal because its hard sometime to remember where I felt pain the most in a month's time since I see my doctors once a month I'm currently seeing a Rheum dr plus a Pain management dr and also my primary care. Thanks you all for your caring and understanding it means alot over the years I have actually been called a hypochondriac when I kept going to different doctors and no one could find what was wrong. I will try to ask my IT about the screen protector I look forward to learning more about what I'm going to get a better understanding because right now I'm fighting to try and not become severly depressed.

tgal
03-06-2012, 12:16 PM
Thank you all so much I feel so much better talking to people who understand what I am going through as you all may experience as well not many people understand my ilnesses and don't take them very seriously mostly because one day I can be ok and moving around and the next day bedridden. I work in finance so I'm sitting at a desk all day at a computer (Can you believe the insurance agent actually said since I sit down all day I should be able to work it can't be that bad??) I do try to keep a journal because its hard sometime to remember where I felt pain the most in a month's time since I see my doctors once a month I'm currently seeing a Rheum dr plus a Pain management dr and also my primary care. Thanks you all for your caring and understanding it means alot over the years I have actually been called a hypochondriac when I kept going to different doctors and no one could find what was wrong. I will try to ask my IT about the screen protector I look forward to learning more about what I'm going to get a better understanding because right now I'm fighting to try and not become severly depressed.

One of the hardest things for me to do was to accept the fact that I needed antidepressants temporarily. If you are not on them I would suggest you talk to your doctor. Not everyone needs them but as I said, you sound much like me and they may be very helpful as you adjust. It doesn't mean that you have to be on them forever but they may very well help you over the hump. Don't forget the sunscreen in the office. It may keep you from getting worse as the day goes along.

debbie-b
03-06-2012, 03:18 PM
Your name says it all, Living Nightmare.
This is the way most of us felt, shortly after being diagnosed, but let me tell you, it usally gets better with time and the right mix of meds.
I too, have Lupus SLE, Fibro and RA. Some days are very difficult, but some days are quite good. I have not had a painfree day in over 6 years, but I have had days, where the pain wasn't so bad. Those are the days I enjoy.
I hope you will find that place too, where you can say, " today wasn't too bad.

Debbie

steve.b
03-06-2012, 07:08 PM
hi and welcome.
unfortunatelly many of us also have lupus and fibro.

i also find my fibro is more of a problem to me than my lupus.

please read a few of the older posts.
there is lots of comments about both lupus and fibro.

magistramarla
03-06-2012, 10:45 PM
Welcome to WHL. I hope that all of the suggestions help you. If you keep getting worse at work, can you appeal the disability decision?
Keep that journal and document everything, just in case.
Work with your rheumy to find the right mix of meds - you might start feeling better about work.
Hugs,
Marla

LivingANightmare
03-08-2012, 06:41 AM
Thanks again everyone

Yesterday was a very bad day. My knees were swollen around my joints so I could barely walk so I missed work. I had a terrible migraine and was very nauseous most of the day. Today are a little better just feel very tired like I haven't slept in 2days.