[imyy4you67]

Hello,
I have been on and off this site for the past 5 years. I have seen several Doctors over the past years and all they kept saying was "I am not sure what is wrong with you". Other than a slightly positive ANA and many symptoms of lupus including fever, rash, muscle and joint pain, they were unable to come up with anything except acute Mono and EBVRS. Well I did not have typical Mono symptoms and I know I have had epstein Barr in the past. They probably did not know what else to say so that was the only safe thing to diagnose me with. I was frustrated and depressed . I knew something was wrong but my lab work was picture perfect. Well that was 5 years ago. My symptoms kind of dissapeared and I seemed ok other than a few joint and muscle pains here and there. I did still follow up with my rheumatologist who was just giving me muscle relaxers.

Well at the end of May, actually it was memorial dday weekend, I woke up and put my feet on the ground and could not walk without severe pain in my thigh muscles. I thought maybe I slept the wrong way but it continued for a day or so and it throbbed and felt like my muscles were being twisted inside my legs. I was crying with pain. I went to my primary Dr, who ran a bunch of lab tests for cancers, and everything under the sun, including 3 24 hour urine samples to test for everything, all normal. She sent me for thyroid scans due to visible hair loss, thinking maybe my thyroid is enlarged, nope. From there the same day I saw my rheumatologist who ran his series of lab tests including ANA and all the normal stuff . 2 days later I broke out in a horrible rash on my left thumb that is nothing I have ever had before. It was like white blisters under the skin that popped and joined together and formed a thick layer of skin that you can peel off and under that seemed to be a dry scaly type rash that turned beet red and itched and changed the pigmentation of my skin. I saw a dermatologist, he gave me Cortisone cream but it didnt really help. He could not biopsy because the blisters had gone away. I called him and made 5 more trips to his office with what I thought was a fluid filled blister but it was just a blister but when you opened it up it was a dry lesion. Still dont know if that has any relation to whats going on with me. My rheumy saw it but did not think it was a lupus thing. Well after that , a few days later my Rheumatologist called me at home and said "your ANA is extremely high at 1280, "I would like to start you on Plaquenil, I think you may have Lupus". Sorry to make this a long story but now I have been on plaquenil for about 4 weeks and dont notice much of a change. How long does it take. He also gave me Ultram for the pain.

After 5 long years of feeling bad, I finally am getting somewhere. I am still going to New York in October to see a Lupus specialist just to make sure. This rash is still herre and new lesion erupt every few days and my muscles are killing me. I also have another question. I get red in my face not only in the sun but when I am in work, alot, like every day and someone told me its the fluorescent lighting in my office, is that true?? My cheeks get real red and even the palms of my hands and I feel wiped out when this happens. Does anyone else have this??

I thank you for listening to me. I really dont have anyone to talk to that will listen, I hate complaining and I would rather talk to people that are going throught the same thing as me because you understand. I talk to my mom but she is so worried that it will go into my kidneys and make me real sick. I dont like to tell her too much. I dont want to worry my husband and kids either so I just deal with the pain on a daily basis and try not to let them see me in pain. Why make them suffer with me. I am going to me 41 yrs old this year and I think I have been having problems since I was in my 20s but never really knew Lupus existed then. Sorry this is so long but I needed to vent.
Oh and my Rheumy also said if the Plaquenil doesnt work, then its not Lupus. What kind of Dr is he to say something like that. Thats why I am seeing a specialist and I didnt tell him I am going.

Thank you for listening.
Kim:worried:

 

[greenhaggis]

Hi Kim,

Firstly dont worry about going on and on - get it all out of your system!

Plaquenil can take in some cases months to work and in other other meds do have to be added.

I dont think its true that if Plaquenil does not work its not Lupus!

With all your pains and symptoms going on perhaps you need extra meds like nsaids (anti-inflamitories), pain killers and even steroids to help ease things until the plaquenil gets a chance to work.

Don't be afraid to phone your rhuemi and tell them that symptoms are not manageable afterall its you thats suffering not them. Ask them how they can provide a better quality of life until the plaquenil starts to work.

Is it another rhuemi specialist you are seeing? Please phone them to get more help - they should be able to provide some other form of refief with edications.

Take care,

Lesley

 

[sadieone]

Hi Kim,

Wow your story sounds just like mine. When i think back i believe i had lupus since a teen. The strangest thing is, I remember the commercials about lupus on tv when i was a teen. I remember thinking i felt sorry for those woman who had to go through so much pain at such a young age, i probably did a back flip then or some strange yoga position just to make sure i was ok. Though no one ever mention lupus to me until i was in my early forties, i had at some point as a teen, most of the symptoms that are reported for lupus patients back then.

I had to force my way to getting an answer to my aches and pains,, since my back was the main problem causing excrutiating pain, then the flu like symptoms and the way I felt like my grandmother,, aging fast. Doc, would just tell me to rest and tell him later if it persisted. I took myself to different docs and googled my symptoms alot til it kept saying Rheumatologist.

So, that is were i went and he sent me for an mri for my back and said past xrays may not show the damage, then took all my blood it seemed like. This is where i got my diagnoses,, 2 years ago today. 2 slipped disks in back and MCTD(mixed connective tissue disease) like lupus + some. Well that explained all my symptoms but he put me on prednisone and told me to see another doctor. He delt with the elderly and not so much lupus patients. I gladly took myself to the arthristis& pain management clinic where a group of doctors treat lupus patients.

I was given plaquenil and Ultram as i also had fibromyalgia,, the pain in muscles,, only hurts now when i move and now limited pain since i 'm on meds. With all the other symptoms i have been prescribed many other meds i now take.

I have a wonderful website for you and your family to see,, it has videos of people like us telling our painful stories of what it is like, having lupus. It also has doctors and an animated video explaining in laymans terms what lupus is. More importantly it has the loved ones of lupus expressing their feelings about dealing with a loved on with lupus.. There are videos on this site everyone in the family should see.
You might want to view it all a head of time to anticipate the reactions and questions you might get.

http://www.dxlupus.org/Default.aspx

Welcome to the forum, by the way. This is a great site to be in. Everything i know about this disease mainly came from here and experience. This is a great place to vent and chat to fellow lupies.

P.S. I was born and raised in Albany, NY. Now i live in Maryland. Its good to see another person who is from U.S.

Take care

 

[Nutty]

Welcome Kim.

That is quite the bumpy road you have travelled to get your diagnosis. While it is not great having Lupus, I hope there is some sense of relief now that you know what you have (i.e. it's not all in your head).

I was put on Plaquenil when I was diagnosed. They took me off several months later because they saw no improvement. I was also on Prednisone, and it too is not working. So, I am being weened off that too.

I hope the Plaquenil works quickly for you and you get some pain releif.

Have you checked out the chat room? It's a great way to talk with other members of the forum.

Take care,

Nutty

 

[Lily]

((((((((((Kim))))))))))))) Finally! I'm glad that at last he has said this, of course you knew it all along and it has been a long road for you :hugbetter:

I get red in my face not only in the sun but when I am in work, alot, like every day and someone told me its the fluorescent lighting in my office, is that true?? My cheeks get real red and even the palms of my hands and I feel wiped out when this happens. Does anyone else have this??

Most definitely, and I get other rashes too like livedo reticularis from fluro lights, my joints and muscles feel worse, I'm more fatigued, etc etc. You may be able to speak to your boss about getting covers on those lights at work, they are available. Still, the same rule applies as when out in the sun, lots of sunscreen renewed every two hours.

The comment about it not being Lupus if the Plaquenil doesn't work in 4 weeks seems quite ridiculous really. Don't take any notice of that! It takes around 3 months for the average patient to see any noticeable improvements and it is a very gradual improvement over that time. For many it takes longer to calm things down to the point where we aren't flaring as much or as badly. Around 9 months for me. And it wasn't the only drug I needed although it did make a big difference. So 4 weeks on a drug that takes time to get in your system and alter your cells when they have been running amok for years is hardly a fair trial.

I hope the Ultram helps you with some of your pain, if you are still having lots of problems with pain then do not hesitate to contact your Rheumy again. You may, as mentioned get some benefit out of one of the anti-inflammatories, I was on those pre-Plaquenil and have stayed on ever since. I am not very mobile and in a lot of pain without them.

love
Lily