TheLupusSite.com banner

1 - 6 of 6 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
Hi I am Shon, I live in Baton Rouge, LA. Back in Nov. I started to experience severe pain in my legs and went to the ER serveral times without any answers well this lasted for about two-three weeks and it all went away, here recently I have had it ongoing again off and on, more on than off. But its been about two months now and I have been going back and forth to my pcp and she has done an MRI(awaiting results), blood work with elevated ANA levels, my symptons are pain inwhich I describe as "my skin hurts" I am on Neurontin 300 mg BID and Ultram 100mg BID and Lortab PRN, my skin use to be so oily now it is dry and flakey and I am worried that I may have Lupus, although it seems I do have fibromyalgia, but don't these two go hand in hand together???

Im lost without info. Just need some support to help me with what im going through.

Also, I don't sleep, even though my body tells me im so tired and sleepy, when its time to sleep I usually will sleep for about 10-15 minutes and then I find myself watching the clock for the rest of the night, my doc suggested PM medication but they don't work for me; any suggestions?


MissShon
 

·
Registered
Joined
·
1,999 Posts
Hi Shon, and welcome to the board. The Moderators here are incredibly well informed as are a lot of members. We have all experiences, some with decades, others who are newly diagnosed.

With your symptoms I would suggest you get a referral to a rheumatologist. That is the speciality which deals with arthritis, and autoimmune diseases like lupus and fibromyalgia. There are a lot of lupus patients who have fibromyalgia, but there are also a lot who don't. They do not always go hand in hand. I call the other diseases which often accompany lupus "hangers-on". The confusing part of lupus is that there are rarely two cases that are the exact same. A diagnosis is made on meeting 4 of 11 critieria, with OR without lab work. Any doctor who relies only on lab work is one to steer clear of. There is a old saying that I have had doctors tell me of their medical school days: "to know lupus is to know medicine."

Take care and good luck with the results you are waiting for.
Sally
 

·
Registered
Joined
·
1,835 Posts
Hi MissShon:

Welcome to the site! I am sorry you are going through this.

Autoimmune diseases are extremely hard to diagnose, as the symptoms sometimes out pace the actual markers in the blood. The follwing link will take you to the ACR (Amercian College of Rheumatology) that many Lupus specialists use to assist in diagnosis. These may be used with or without positive blood test results.

http://www.thelupussite.com/forum/showthread.php?t=33123

If your Dr feels you have Fibromyalgia, I would ask for a trial of Lyrica (If you are able to take it) as it is FDA approved for the treatment of Fibro and has been helpful for many with that condition.

After you look at the ACR and if you have more than four of the criteria, it may be in your own best interest to seek a Lupus Specialist in your area, to review your case and provide a second opinion or more detailed and specific blood tests to completely rule out any autoimmune disorder.

I am sorry i could not offer more, I wish you luck, and please let us know how you get on.

Stephanie
 

·
Registered
Joined
·
4,968 Posts
Hi Miss Shon and welcome to a place where you will find support, knowledge and great people that are ready and willing to listen and help.

You have been given good advice so far. I am curious, are you being treated by a Rheumatologist or just your GP? A Rheumatologist deals with auto immune related diseases and has knowledge of certain blood tests that GP's have not even heard of.

I agree that Lyrica is wonderful if your having any kind of Neuropathic type pain and if your having issues getting a good night sleep then certainly talk to the doctor about something to help you at night, Ambian or another sleep aide drug.

The MRI that your waiting on, who ordered this for you and what are they looking for, anything specific or just any abnormalities? I hope you can get the results to this soon and hopefully it will help yield some answers for you.

Sorry your dealing with this and being in limbo land is not fun, but I always say that you know your body best and if you feel something is wrong then press forward until you get answers. Lupus, along with other ai diseases are not always easy to diagnose. It took me over 3 years before things really started to show up in my blood work.

I wish you well moving forward and let us know how you make out at your next appointment. Join us in the chat room sometime. We have fun in there.
By the way, I am coming to your neck of the woods April 18th to visit a friend. She lives in Annacoco LA...................it is lovely down there I hear.

Hope to get to know you better.:wink2::wink2::wink2:
 

·
Administrator
Joined
·
10,167 Posts
Hi MissShon,

Welcome to the site.

It is common for people having Fibromyalgia to suffer from sleeping problems. They not only have a difficult time getting to sleep, they wake up tired because they don't get into a deep sleep cycle. The doctors usually prescribe medication to help. One suggestion I have is to turn the clock away from you. I find it less frustrating if I can't tell how much time has gone by.

Good luck with your MRI and blood test results. I hope you get a definitive answer to the cause of your discomfort.

Take care,
Lazylegs
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
shon,
Hi and welcome to the site. I can understand why you would be confused, scared, and seek support for what you are dealing with. This is a wonderful place to do that. We have a chat room and I do hope that you will join us in their for instant feedback to some of your questions and concerns. I do hope that you are feeling well and doing well.
 
1 - 6 of 6 Posts
Top