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12-03-2008, 07:04 PM
hello, I am really sorry that each of us has to be here,but I am glad that we have each other. My new diagnosis is not a surprise, this process began over 10 years ago. There is concern that Lupus Nephritis is present and has been for several years. I will find out more this month. I am also being examined by neurological opthamologist. The pain is so often unbearable, but I am really frightened by steroids and immunesuppressants. I also have fibromyalgia, and I am really tired of hurting.

Foggy brain, word recall, spelling, etc. are soooo elevated right now. I don't know if this will get better, or what to expect. I am presently unable to drive because of blurred vision and confusion. My symptoms seem to continue to rapidly worsen. I am, quite frankly, very frightened.

By the way, my name is Phyllis

12-03-2008, 08:11 PM
Hi Phyllis nice to meet you and a big welcome to the site. BIG HUG. My name is Sandra I have had lupus for about a year which i think i have had it longer. The lupus has affected my lungs so it doesn't help me having Asthma i get pleurisy and pneumonia every year. I battled the pneumonia for five months in a row before i was diagnosed. Anyway once again welcome to the site. If there is a time you need someone to talk to we are all here and we are good listeners

God Bless

12-03-2008, 09:02 PM
Hi Phyllis,
Welcome to the site. My name is Kathy and I have SLE Lupus and several other auto-immune disorders. I have lived with Lupus for a very very long time. I take Plaquenil and an Immunosuppresent drug (Imuran). These medications seem to do ok for me. I mean nothing is perfect, but it is better then nothing. Sometimes with this illness we have to take immunosuppressors to stop the flares and the damage from the flares. I have been on medication for about 14 or 15 years, but the Rheumatologist believes that I have had this illness since the age of 5 and I will be 50 on the 17th of this month. I can sure understand your fear of this illness, but it can be managed even though there is no cure as of yet. I hope that one day there will be a cure. Until there is a cure we have to live with this illness and make adjustments in our lives to live the best that we can. Are you on any medications yet? Keep in mind that if they put you on Plaquenil that it takes up to 5 months for you to get the full benefits from it. I hope that you keep posting.


12-03-2008, 10:18 PM
Hi Phyllis,

My name is Rob, and I was diagnosed with SLE five years ago, although I knew there was something wrong long before that. It seems that the majority of us have a diagnosic process that takes forever. And the fog you are having, tell me about it. I get it to the point of just giving up on having any coherent thought process, and I just shut down out of sheer frustration with a blank slate between my ears.

I wish none of us had to be here. But, if we have to have this thing called lupus, we may as well get together and talk about it. Whenever I say hello to a new person here, I say how glad I am that they are here. It's a strange thing to say, as I would not wish this upon anyone. But, it is such a relief to finally have an answer to the years of strange, and seemingly unrelated symptoms. Anyway, I want to say welcome, and by all means make yourself at home here.


12-04-2008, 12:26 AM
I have been ill for 7 years and I will be turning 30 this summer. For me, it is a lot of trying one form of medication and deciding if it fits with you. There is a lot of trial and error and I know it is frustrating when the pain and other symptoms are real bad, hang in there!

When I first started feeling bad the pain would wake me all hours of the night and I would cry out in my sleep. I lost feeling in my hands, arms, feet and legs, could not remember anything and I felt I could not retain anything new. I ended up developing very high blood pressure and severe asthma. It was so hard and frustrating during the early stages.

There is hope! Everyday there is something but it is so minor that most of the time I do not even notice my symptoms! It has been a combination of an amazing line up of doctors, the right treatment plan and a loving support system! Please hang in there and know that there will be a day when you wake up and you will have relief. Do not give up and know that we all can understand where you are coming from! I am sending you a hug! :angel:

12-04-2008, 05:10 AM
Thanks to all replies.....I see by the times of the entries, that many of you are (like me) awake various hours of the night. It is such a relief to have found this forum, My thanks to my son for helping me with this search. I am electronically ignorant.

I am 56 and my first bout with pleurisy was over 20 years ago. just got diagnosed 2 months ago. I tried Plaquenil, but immediately had vision and confusion side effects. Am currently off meds until I see a few more drs. I presently take Dilaudid for pain, and that is it. I have daily pain in chest, back of head, between should blades, and intermittent locations throughout body.

I have also been diagnosed with Fibromylagia (in 2003) and Intersticial Cysitis (in 2006).

I have noticed a lot of localized pain in lower trunk (abdomin). What is this?

Thanks for the hugs

Thanks to all, I really appreciate your welcome to me.

12-04-2008, 08:01 PM
You mentioned that you have Fibromyalgia with a lot of pain in the lower abdomen. Do you also suffer from troubles with your bowel function? If so, the lower abdomen pain could be from a condition that is common to Fibromyalgia...Irritable Bowel Syndrome. This syndrome causes excruciating pain in the lower abdomen, as well as crampimg.
Does this sound like what you are experiencing?

Peace and Blessings

12-05-2008, 05:39 AM
Hi Saysusie,
I have not been diagnosed with Irritable Bowel Syndrome, but I have been diagnosed with Intersticial Cystitis. The inner lining of my bladder is completely raw. I do experience excruciating pain in the bladder and in the lower abdomin area, but I am controlling with diet. The lower pain that I feel in the tail bone area is different. I don't know much about Irritable Bowel Syndrome, so I don't know if this could be.

Thanks for the input, I will mention to my rd. I don't think I have really associated the pain with IBS. I am not sure that I have even mentioned this lower tail bone area pain with her. I feel like a whinner if I talk about all of the pain.

I wish you a great day,

12-07-2008, 08:26 PM
When you are suffering from a chronic illness that has other over-lap illnesses that have tagged along for the ride, there is NO WAY that you can be a whiner!

Fibromyalgia is a condition that causes widespread pain as well as chronic fatigue. As I mentioned, FM has its own little list of hanger-ons, like Irritable Bowel Syndrome, TMJ, Migraines...to name of few.

If you are also diagnosed with Lupus, you know that this is a systemic disease that can affect EVERY part of the body; muscles, tissues, organs, joints.

Intersticial Cysitis is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area.

So......just from the list above, it is safe to say that you are ALWAYS in pain somewhere. Wanting relief from this array of pains is not whining. It is a reasonable request and you are well within your rights to DEMAND that you doctor listen to you, take you seriously, and provide treatment that is effective. Do not, ever, think that you are whining to your doctor when you are describing very real symptoms and very real pain.

I do hope that you find out the exact cause of your pain & that you symptoms are treated so as to provide you with relief.

Peace and Blessings

12-08-2008, 05:46 AM
Hi Saysusie,
I hope this morning finds you feeling like a smile. Again, thanks for your info. I have battled the response "oh this is just fms acting up" for so many years. Even the emergency rooms are less than sympathetic. They have sent me out the door after IVs of various medications, only to fend for myself. I have reached the point where I don't care what they think, however, it still makes me feel like a mental case....and I have to resolve this within myself. One of the many obstacles of a "non-visible disease."

Have a happy day,

12-08-2008, 10:02 AM
I am sad to say that the "invisible disease" syndrome is an obstacle that too many of us have to endure! Hang in there, be pro-active, and do not let anyone (including doctors, nurses, or emergency room staff) dismiss you, your pain or your symptoms!

Peace and Blessings