Lupus Forum - Frustrated

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Q: Frustrated

asked by: shakti on January 31st, 2007

New User

I know that something is not right, but I have never had any concrete diagnosis. I work in health care so i'm trying to stay objective. I'm 40 years old and female. In my late twenties I had a very seroious bout of joint pain- bylateral- swelling and extreme fatique. It went on for months, I remember cleary, walking with my son who was young at the time and thinking " I could just lay down on this sidewalk and die I am so tired". It passed within about 3months. Then I had a horrible rash on my face which the Dr. (dermatologist) even took pictures of, but he said it was rosacea. The sun makes it flare. Several years after that I had horrible bouts of dizziness accompanied by muscle twitches and myoclonic jerks( 20-30 a night) along with unsteady walking-vertigo. Then a neurologist said I could have some sort of mild m.S. Then once again all symptoms dissapeared. After that I was well for many years. About 3 years ago I had a type of skin condition that I really paid no attention to. They were brownish spots on my chest and neck that looked like coins for lack of a better description. I've recently had a " rosacea flare" swelling and redness around my eyes and upper cheeks, the tiredness has returned and so has pain in my bladder and gi tract. I am not sure why i'm writing here, but I have this feeling that all along the Dr.S have been missing something. I understand the rules of this forum, I guess I just need to vent. I really hate not knowing what is wrong with me. The coin shaped lesions disapeared after I applied steroid cream. Any ideas, not diagnosis, would be greatly appreaciated. Especially this one: has anyone who actually has lupus been told that at first it was rosacea?

Warm regards
shakti

Replies(3)

Mitamins111

replied on February 4th, 2007

New User

Re: Frustrated

Many people ask, “is rosacea a symptom of lupus”? There are many symptoms of lupus. One of the most common is a rash on the face, which can be confused with rosacea. In lupus, the facial rash is called a malar rash. The malar rash is a redness or rash that may appear in a butterfly configuration across the nose and cheeks. It can appear on one or both sides of the face and is usually flat. In rosacea, the rash does not have the butterfly configuration.

Ginger helps indirectly to relieve pain by reducing inflammation and by lowering the body's level of natural pain-causing compounds. Flaxseed contains omega - 3 fatty acids which might decrease lupus-induced inflammation and this be important in the treatment of lupus.

Please note that this is not to be taken as medical advice. If you are seeking treatment, please contact your healthcare professional.

BigHeart

replied on February 13th, 2007

New User

Re: Frustrated

shakti wrote:

i know that something is not right, but I have never had any concrete diagnosis. I work in health care so i'm trying to stay objective. I'm 40 years old and female. In my late twenties I had a very seroious bout of joint pain- bylateral- swelling and extreme fatique. It went on for months, I remember cleary, walking with my son who was young at the time and thinking " I could just lay down on this sidewalk and die I am so tired". It passed within about 3months. Then I had a horrible rash on my face which the Dr. (dermatologist) even took pictures of, but he said it was rosacea. The sun makes it flare. Several years after that I had horrible bouts of dizziness accompanied by muscle twitches and myoclonic jerks( 20-30 a night) along with unsteady walking-vertigo. Then a neurologist said I could have some sort of mild m.S. Then once again all symptoms dissapeared. After that I was well for many years. About 3 years ago I had a type of skin condition that I really paid no attention to. They were brownish spots on my chest and neck that looked like coins for lack of a better description. I've recently had a " rosacea flare" swelling and redness around my eyes and upper cheeks, the tiredness has returned and so has pain in my bladder and gi tract. I am not sure why i'm writing here, but I have this feeling that all along the Dr.S have been missing something. I understand the rules of this forum, I guess I just need to vent. I really hate not knowing what is wrong with me. The coin shaped lesions disapeared after I applied steroid cream. Any ideas, not diagnosis, would be greatly appreaciated. Especially this one: has anyone who actually has lupus been told that at first it was rosacea?

Warm regards
shakti

dear shakti,my first symptoms appeared when I was 9 years old.Now I am 28 and I was diagnosed with a connective tissue disease in january 2004. Before I finally found out what was wrong all these years I had to battle malicious allegations: I was called insane,a hypochondriac and many more mean things.Many a time I was supposed to have come down with a personality disorder,e.G. The doctors thought i´m theatrical/histrionic-i just couldn´t possibly suffer from all those symptoms, I must be imagining or exaggerating things!I can´t recall how many times doctors claimed I had rosacea,which is not a symptom of lupus, it´s a common misdiagnosis when a patient actually presents an untypical lupus-born rash.I´m native-afro-american and know what i´m talking about.Lupus can affect every part of the body,because the structures are nourished by the blood.I found that out the hard way as I was slammed into despair as I had some nasty bouts of cns involvement and no one here in germany to help me.Here´s a good advice: believe in what you feel, women know what they have long before a doctor figures it out.You can trust what you sense, it´ll be right, and you are the only one who can battle to get the right treatment and attention you seek.Good luck and good health!Natasha

mprecision

replied on March 20th, 2007

New User

Re: Frustrated

I was wandering if you have had any luck yet finding out what is wrong with you. I have a very similar case. My first bought was when I was 28 years old. I had achy joints and leg muscles. It lasted for about 3-4 month and it hurt to even walk. The drs thought maybe I had injured my knees running but they never could get anything to show on MRI. As quickly as it came it went away. I then had an episode about 5 years later and I had achy joints in my arms and legs and I developed a hand tremor. I had migraines from the stiffness in the muscles around my neck and shoulder areas. This time they told me it was tension and sent me to PT and after about 5 months it went away. It left me with mild bladder symptoms and a left hand tremor. 3 years past and I had a severe episode that lasted 6 months. This time they told me they were sure I had MS (but it never showed, I was also tested for Lupus and several other autoimmune diseases and nothing showed). This episode left me with a sever neurogenic bladder (which they now want to do an interstim implant to control being I am only 3 Cool

and three toes that don't move, spatisity in my muscles and stiffness. I do have arthrities showing in my hips knees and spine. I have a couple of small flare ups since then and I am currently in a flare up that is going on 4 months. I now get the lump in the throat sensation and my bowel spasms that are severe. i am getting ready to go through another round of tests but have little hope that they will determine anything definite. Do you know if you can have lupus and it not show in the ANA blood test?

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