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hi im 35 male just been diagnosed with lupus in so much pain an depressed anyone in the midlands to chat about it . an where i go from here.
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Hi Shamen and welcome
Lupus is an extremely frustrating disease and none the less so when you are a man as it is a disease that more women suffer from than men and in any case is little understood by others.
As it is largely invisible it is very difficult for other people to see how debilitating it can be.
Unfortunately a lot of people also suffer from depression with lupus. It is part and parcel of the disease for many. If you know that your depression is more than just the sheer frustration and pain of the disease then that is something that you should talk to your doctor about as it is something that should be treated.
What treatment have you been started on and how long is it since you were started on it? Hopefully once your treatment kicks in you will feel a lot better and get back to normal.
feel free to ask questions, we're here to help,
Katharine
Lupus is an extremely frustrating disease and none the less so when you are a man as it is a disease that more women suffer from than men and in any case is little understood by others.
As it is largely invisible it is very difficult for other people to see how debilitating it can be.
Unfortunately a lot of people also suffer from depression with lupus. It is part and parcel of the disease for many. If you know that your depression is more than just the sheer frustration and pain of the disease then that is something that you should talk to your doctor about as it is something that should be treated.
What treatment have you been started on and how long is it since you were started on it? Hopefully once your treatment kicks in you will feel a lot better and get back to normal.
feel free to ask questions, we're here to help,
Katharine
Hi Shamen, I am not in the Midlands, I am way South from you, but am sorry to hear you have been diagnosed. I hope you are getting good treatment.
Diagnosis is always a shock even if we were expecting it, none of us get through it without all those odd feelings. I am quite self sufficient but I was an emotional wreck. Still uncomfortable hearings songs that were around at that time,but generally I cope. The people here are great. big welcome to you.
x Lola
Diagnosis is always a shock even if we were expecting it, none of us get through it without all those odd feelings. I am quite self sufficient but I was an emotional wreck. Still uncomfortable hearings songs that were around at that time,but generally I cope. The people here are great. big welcome to you.
x Lola
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377 Posts
Hi Shamen,
Welcome to the Lupus Site. I am glad you have found us. Right after diagnosis is a very scary time for most of us. Especially when we are in pain. I can tell you that most Lupus patients life a normal life span these days. It is important to take your medications as prescribed and to keep all doctors appointments.
I hope that your doctor started you on Plaquenil right away as it can take 6-9 months to reach full benefit. Sometimes doctors will prescribe a course or Prednisolone (sp?) to get the lupus under control while waiting for the Plaquenil to start working. Prednisolone can often get the pain levels way down as they are caused by the active disease. Many of us do take anti-inflammatories in addition to the Plaquenil and some of us require even stronger pain medications. Studies have shown that people in pain rarely communicate to their doctors exactly how much the pain is interfering with their life.
Besides the joint involvement (which by itself is a biggie) what other symptoms have you been experiencing? For the longest time joint pain and fatigue were my only problems with Lupus.
Take care,
Karen
Welcome to the Lupus Site. I am glad you have found us. Right after diagnosis is a very scary time for most of us. Especially when we are in pain. I can tell you that most Lupus patients life a normal life span these days. It is important to take your medications as prescribed and to keep all doctors appointments.
I hope that your doctor started you on Plaquenil right away as it can take 6-9 months to reach full benefit. Sometimes doctors will prescribe a course or Prednisolone (sp?) to get the lupus under control while waiting for the Plaquenil to start working. Prednisolone can often get the pain levels way down as they are caused by the active disease. Many of us do take anti-inflammatories in addition to the Plaquenil and some of us require even stronger pain medications. Studies have shown that people in pain rarely communicate to their doctors exactly how much the pain is interfering with their life.
Besides the joint involvement (which by itself is a biggie) what other symptoms have you been experiencing? For the longest time joint pain and fatigue were my only problems with Lupus.
Take care,
Karen
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2 Posts
HI fellow suffers
I am not diagnosed with lupus but sjogrens, fibro and raynaulds. I am beginning to think I might have lupus. I am typing left handed because i have tendonitis in my hand. I was finally diagnosed after coughing 2 years all night. I had hair loss and fatigue. I did a real doctor run around until one doctor sent me to a rhem. My brother has a Phd in immunlogy. He told me to go to a teaching hospital. It was so far I put it off. I just moved back to CA and assumed since I would not need to go to a teaching hosp since I was diagnosed. WRONG I decided to go to an internist for primary WRONG I have had pain on and off in my hands for the year and a half since we moved here. Fatigue was terrible. We moved in two weeks and it killed me. With the housing situation here (prices tanking) we rented so we had to move again: they wanted to sell. We also have had several problems with small and large things.
I recently started going to Scripps and FINALLY found out the hand painis tendonitis. Doctors thought it was all stress and depression and told me to see phsyc. I was given prednisone again and felt much better. Then, I was mad at the docs. Also problem with yeast infection cream that doctor ignored. That is when I left him and went to Scripps. Just had my sleep study and dont know for sure but think I have apena. I am so happy to find out what the hand pain is. One counselor said fibro is all in your head! This made my family think it was! That has been my worst problem. My husand told me to complain about the pain more because my older daughter got mad I wouldn't drive to her house an hour away to babysit. She said I didnt have enough pain to have what I do. So I complained and now everyone says I am a complainer. Even when I was depressed first doctor said you dont have cancer! So it doesnt help either way. I feel bad for my husband since he works really hard and gis finishing his Phd so cant help much. Also infections get in the way of our intamacy. Anyone else have that problem? He is in great shape and hates me being in so many meds. Oh, stomach problems, reflux, gastritus, stricture,and previous ulcer are preventing me from taking good pain meds or celebrex.
Prednisone really helped me with my outlook! I also take lexapro. BOTTOM LINE GO TO A PLACE THAT DOES RESEARCH!
I am not diagnosed with lupus but sjogrens, fibro and raynaulds. I am beginning to think I might have lupus. I am typing left handed because i have tendonitis in my hand. I was finally diagnosed after coughing 2 years all night. I had hair loss and fatigue. I did a real doctor run around until one doctor sent me to a rhem. My brother has a Phd in immunlogy. He told me to go to a teaching hospital. It was so far I put it off. I just moved back to CA and assumed since I would not need to go to a teaching hosp since I was diagnosed. WRONG I decided to go to an internist for primary WRONG I have had pain on and off in my hands for the year and a half since we moved here. Fatigue was terrible. We moved in two weeks and it killed me. With the housing situation here (prices tanking) we rented so we had to move again: they wanted to sell. We also have had several problems with small and large things.
I recently started going to Scripps and FINALLY found out the hand painis tendonitis. Doctors thought it was all stress and depression and told me to see phsyc. I was given prednisone again and felt much better. Then, I was mad at the docs. Also problem with yeast infection cream that doctor ignored. That is when I left him and went to Scripps. Just had my sleep study and dont know for sure but think I have apena. I am so happy to find out what the hand pain is. One counselor said fibro is all in your head! This made my family think it was! That has been my worst problem. My husand told me to complain about the pain more because my older daughter got mad I wouldn't drive to her house an hour away to babysit. She said I didnt have enough pain to have what I do. So I complained and now everyone says I am a complainer. Even when I was depressed first doctor said you dont have cancer! So it doesnt help either way. I feel bad for my husband since he works really hard and gis finishing his Phd so cant help much. Also infections get in the way of our intamacy. Anyone else have that problem? He is in great shape and hates me being in so many meds. Oh, stomach problems, reflux, gastritus, stricture,and previous ulcer are preventing me from taking good pain meds or celebrex.
Prednisone really helped me with my outlook! I also take lexapro. BOTTOM LINE GO TO A PLACE THAT DOES RESEARCH!
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2 Posts
read my post and go to the teaching hospital! Dont be afraid 2 take lexapro or similar drug in LOWER doses. I have a whole list of problems I print out and take to new docs. If I dont take this in I forget something or run out of time. elaineleith
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