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Q: Need Advice For Undiagnosed Symptoms.
asked by:
SusanD
on December 17th, 2004
New User
Let me get right into it. For the past three months i've been experiencing symptoms: extreme tireness/fatigue, joint aches, muscle aches, rashes - on cheeks adn forehead, and chest and neck...At times from driving home in direct sun (i also get this from beach trips, too much sun despite sunblock and straw hats - then I get a horrible rash on my chest/neck and at times my shoulders and elbow area, and start feeling like ahve the flu), sore swollen lymph nodes in neck, mostly in armpit and groin - extremely sensitive the week before my period, almost daily headaches - mostly on the right side of my head, migraines 1 every month to two months, hair falling out (but not in patches, just generally falling out - I have to clean the drain everyday and then clean my brush or comb, and now I have fine little hairs that stick up and I don't really think my hair is just breaking off, can't really expain it.), and extremely cold - especially my fingers and toes. Like right now, it's in the 70s in my office and i'm in a shirt and sweater, not even warm, but my fingers are ice cold and my toes feel like i've been trudging through snow. I've also had some kind of raise red, burning hot somewhat itchy rash that 'appeared to be shingles' 3 times in the past two years. And the last occurance was the beginning of september and i've had all the above symptoms since then.
8 years ago I was told that I tested 'positive for the pattern of lupus', but to not worry about it. I jsut had my thyroid tested, and it is fine, then tested for lupus becuase I mention the previous positive test despite my Dr. Not really thinking my symptoms were related...And it came back negative, I guess...I havent' really been able to discuss the results with her as she hasn't called me back despite my calls to the nurse. I'm really frustrated with feeling lousy and still have to appear that I have it all together. I just feel like sleeping under layers of blankets...All the time. That is all I think about is resting and I just don't (i know I shoudl make time to rest) take the time for a nap. I work full time and drive 130 miles a day to and from the office, that doesn't leave much time to 'nap'.
Can anyone give me some advice? I'm not sure what to do or where to turn, I only know I need to do somehting to help me feel better. Please help. Have a great day!
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Replies(5)
Kelly May
replied on December 21st, 2004
New User
Hi there susan
firstly my advise to you would be to not to accept no for an answer. You will soon realise like the rest of us lupus sufferes that your primary responsibility is to yourself not to a doctor who may or may not be fully equipped to know what is really going on with your body. Never doubt yourself. Especially if the symptoms are visible to you and others around you. Take someone with you who knows the extent to how this is effecting you. Also a very valuable piece of advice that I used during my early days of being diagnosed (over a 1 yr period, mind you) is to take photo's of your rash's because if you are anything like me my rash's are never present at the time of a specialist visit. The other thing is that it is also good to find a female gp that u can see you at short notice when you are flaring and she can then record any visible symptoms. I am not discounting male gp's but in my experience as lupus flares with periods etc female doctors are a little more understanding at the gp level. Of course most specialists are males and are excellent and if they see your case history stated in writing it makes them think twice when looking at your diagnosis.
You have to be very specific with your primary care practioner. The best way to do this is to keep a daily diary. Include your premenstral details as this is usually the most prominent time of symptoms. This is very benificial to yourself, doctors and those around you who support you, as you can usually pre determine those more difficult times and also this will help your family to plan outings etc around these times.
The most important thing is you have realised your symptoms and from using the 4/11 symptom criteria for lupus, you are aware that lupus may be a real possibility. You can find a copy of my letter on the board which will give you an insight to where I am at with lupus. I do know that the sun is and heat are truly my enemy and a tale tell sign for my rash flaring, chills, swollen glands, joints and fatigue. Don't forget to record in your diary your sun exposure and physically demanding activities.
My very best wishes for the festive season - take care
kelly (australia)
firstly my advise to you would be to not to accept no for an answer. You will soon realise like the rest of us lupus sufferes that your primary responsibility is to yourself not to a doctor who may or may not be fully equipped to know what is really going on with your body. Never doubt yourself. Especially if the symptoms are visible to you and others around you. Take someone with you who knows the extent to how this is effecting you. Also a very valuable piece of advice that I used during my early days of being diagnosed (over a 1 yr period, mind you) is to take photo's of your rash's because if you are anything like me my rash's are never present at the time of a specialist visit. The other thing is that it is also good to find a female gp that u can see you at short notice when you are flaring and she can then record any visible symptoms. I am not discounting male gp's but in my experience as lupus flares with periods etc female doctors are a little more understanding at the gp level. Of course most specialists are males and are excellent and if they see your case history stated in writing it makes them think twice when looking at your diagnosis.
You have to be very specific with your primary care practioner. The best way to do this is to keep a daily diary. Include your premenstral details as this is usually the most prominent time of symptoms. This is very benificial to yourself, doctors and those around you who support you, as you can usually pre determine those more difficult times and also this will help your family to plan outings etc around these times.
The most important thing is you have realised your symptoms and from using the 4/11 symptom criteria for lupus, you are aware that lupus may be a real possibility. You can find a copy of my letter on the board which will give you an insight to where I am at with lupus. I do know that the sun is and heat are truly my enemy and a tale tell sign for my rash flaring, chills, swollen glands, joints and fatigue. Don't forget to record in your diary your sun exposure and physically demanding activities.
My very best wishes for the festive season - take care
kelly (australia)
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BLUE4ME
replied on January 22nd, 2005
New User
Hello
I have found it very helpfull to keep a health folder... If I feel bad on one day I write how I felt ..Headaches , rashes.. Watch what u eat..Rashes could be allergic reactions to something you have eaten...
Took me forever to figure out I was allergic to pork.. Doctors did skin test and said I wasnt..But if I eat it or put it on my tongue I will swell.. I dont have to swollow it. Face, lips, throat and get hives as well.. This is n0t fun at all..I look as if someone beat me black and blue..Keep a food book..
Now days in my opioions most doctors wont to give us the quick fix and send us on our way..They dont wont to find out whats causing our problems.. And fix it.. If theres a way..What ever happen to those old time doctors.. Now theres all these new ones whos after money ... And not the well being of the patient.. I should know my sons been deathly sick for almost 2 months went to emergency room 2 times in dec..Nothing was done they claimed he had virus.
Monday he comes home sick worse than ever.. Tuesday hes really bad..Took to doc, he sent us straight to emergency room.. Got ct done.. Showed a obstuction it colon big time..But still nothing was done to remove it..Sent home.. Went back to doc next day.. Then he refered us to a sergian which this man really cared ..He told us to do one thing but then 6am he calls and says no dont do it ..Go to gi doc and let him go in and take out stuff.. So we did.. Today my son is not in pain and trying to get back to normal..Still on liguid diet until monday.. With no dairy products ..But our last 3 doctors really cared..All 3 have called me on my cell and asked about him.. And told me to call them if I needed any advice or anything..
I have never in my lupus years had any doctor offer this kind of help to me..If my insurance would take that doctor ..I would go to him.. But my insurance is a goverment type insurance.. Called tenn care.. Which in tennessee..We are fixing to get cut out of.. And I dont have a clue as to what I will do if I loose it..Because with lupus.. Gosh, im so cluby, I seem to fall or trip or twist and hurt something.. Never fails..
I guess I got off the subject.. It helps for me to like get it out..So...
Anyway.. Good luck to all.. Wish u all the best of it..
Took me forever to figure out I was allergic to pork.. Doctors did skin test and said I wasnt..But if I eat it or put it on my tongue I will swell.. I dont have to swollow it. Face, lips, throat and get hives as well.. This is n0t fun at all..I look as if someone beat me black and blue..Keep a food book..
Now days in my opioions most doctors wont to give us the quick fix and send us on our way..They dont wont to find out whats causing our problems.. And fix it.. If theres a way..What ever happen to those old time doctors.. Now theres all these new ones whos after money ... And not the well being of the patient.. I should know my sons been deathly sick for almost 2 months went to emergency room 2 times in dec..Nothing was done they claimed he had virus.
Monday he comes home sick worse than ever.. Tuesday hes really bad..Took to doc, he sent us straight to emergency room.. Got ct done.. Showed a obstuction it colon big time..But still nothing was done to remove it..Sent home.. Went back to doc next day.. Then he refered us to a sergian which this man really cared ..He told us to do one thing but then 6am he calls and says no dont do it ..Go to gi doc and let him go in and take out stuff.. So we did.. Today my son is not in pain and trying to get back to normal..Still on liguid diet until monday.. With no dairy products ..But our last 3 doctors really cared..All 3 have called me on my cell and asked about him.. And told me to call them if I needed any advice or anything..
I have never in my lupus years had any doctor offer this kind of help to me..If my insurance would take that doctor ..I would go to him.. But my insurance is a goverment type insurance.. Called tenn care.. Which in tennessee..We are fixing to get cut out of.. And I dont have a clue as to what I will do if I loose it..Because with lupus.. Gosh, im so cluby, I seem to fall or trip or twist and hurt something.. Never fails..
I guess I got off the subject.. It helps for me to like get it out..So...
Anyway.. Good luck to all.. Wish u all the best of it..
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nadeentears
replied on January 25th, 2005
Experienced User
My Sympathy
Lupus is a desease with thousand faces. Red rashes is part of it. I diagnosed with sle six years ago. I take plaquenil and celebrex for the pain. Now my doctor changed celebrex to apo-prednisone. I consulted my specialist every 4 months to follow check up with her. The day I visit her there is no symptoms for lupus but I used to keep some notes with me to tell her. Lupus flare at any time and the symptoms are severe and painful. Sometimes I can not take stairs, raise my hand to comb my hair, open a bottle or open a water tap. Increased fatigue, tiredness and heat inside my body as if my blood is burning. You are the one who can figure out that symptoms and no one else. You should listen to the language of your body. Whenever u feel that symptoms do your best to relax and have some rest. Don't feel guilt that u can not take care of your household. Your family must know about your illness and try to help and support you. Enjoy your life, participate with outside activities this might gives u some pleasure and happiness. You will feel better and satisfied that u have done somethinf usefull in your days. My heart is with u all who are suffring with lupus or with any other disease.
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bdennard
replied on October 1st, 2005
New User
Positive Diagnosis Or Not
I am so frustrated with my doctors. I have been to so many doctors and I am no closer to a diagosis. I've had 2 pheumatoid profiles that have both been positive. My white blood count is very high and I feel like i've got the flu all the time. I have a reoccurring rash on my face, neck, and groin area. They did a biopsy and I am waiting for the results. Why can't they tell me if I have lupus or not? The rheumatologist has mentioned sjogrens disease and behcets syndrome but he can't give me a definite diagnosis of lupus or the other two mentioned diseases. I have constant fever, headaches and not to mention I have had unexplainable and uncontrollable seizures for 3 years now. As you can tell, I am so frustrated and confused. I did have one drug that helped my seizures but it lowered my platelet count so much that I had to be hospitalized for petechiae rash. I was a middle school teacher and had to retire due to my seizures and now I am confined to my home. I just want to feel better. Does anyone have any advise for me? I have not been started on any treatment yet except just topomax for my seizures and pain medication for my aches and pains of migraines and joint pains and of course, I am on antidepressants and anxiety meds and meds for mitral valve prolapse. Any encouraging words out there?
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nadeentears
replied on November 9th, 2005
Experienced User
You have to cope with your situation. I spent 4 years under diagnoses and seeing doctors until I was diagnosed with lupus. I was stressed and frustrated. I started to lose my family , then I started thinking about my situation. I found it hard to live alone and lose those who love me and nothing will change . My lupus will be with me till I die, nothing cured lupus, u only follow treatment and continue taking drugs for the rest of life. You take drugs to control lupus and stop it from getting worst , so u have to cope with it and live your life . No one knows when he will die ? Or how he will die ? Yesterday I lost one of my relatives. She is a doctor and very young. She died in car accident . Peas be upon her soul . I know that this is not our topic but I found it a good chance to tell u how is life . It is short and we have to enjoy it and take every moment of it to live it happily and in peas . Others are suffering the worst. We have to be happy of what we have. Lupus is not that dangrous disease as cancer. Don't worry and live your life follow treatment with doctors don't give up .
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