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I have a feeling like I have a bad case of the flu minus any temperature.....chills and just feeling rotten. I just want to lie down and try to cope with it. If anyone else suffers from this....are these symtoms here to stay for me?
Iritis Tylenol Arthritis Imuran Fever Suicide Pneumonia Rashes Pain Lupus Benadryl Sarcoidosis Percocet
Have you been tested for Lyme Diesase? I had those symptoms when I contracted it - over some four days, but only in the evening and overnight - during the day I was fine.
I still feel that way now and then (between the Sarc sweats). Being treated twice for Lyme about 4 yrs ago I get tested every yr. now as my State is a known high incidence area for Lyme.
Thanks Irene,,,,haven't been tested lately but I'll mention it to my doctor once I'm able to get out of bed. Except for no fever it feels exactly like the flu.Hope you do well with this **** disease.
This is How I Explain having Sarcoid to get people to Understand. Its Like Having the Flu 24/7! This is How I Found Out I had Sarcoid Many Years Ago. I felt Like I had the Flu and it Wouldn't go Away, went to the Doc Rest is History. Been in the Medical Field for 20 Years and Up Until Then Never Heard of This Disease. Today People in the Medical Field Say Oh Ya I Have Heard of That But Still Dont Understand.
THanks D156....do you ever have even a single day where you don't feel so rotton? This is a new symptom for me. I was diagnosed about 1 year ago but never felt this bad. Can't even imagine feeling this bad for the rest of my life. I'm hoping it goes away with time. There is nothing the doctors can do for this symtom anyway...I don't think. I've felt rotton since diagnosis but these chills are something new.Good Luck.
Hi, For Me it has been Rotten Flu Feeling From Day One. I have had Two PET Scans and Many CT'S, MRI'S. MRA, Chest Xrays, Tons of Speciality Doc's. Due to my Last PET Scan showing it is Worse. My Pulmo Doc send me back to U of M. Now I also have Sjogren by a Lip Bx (inside of mouth glands) Closing Both Upper & Lower Tear Ducts two/three weeks ago. So Now I have to have Rituximab Infusions, Plus I Take MTX, Imuran, B12 Injections etc. I wish I could Have One Day without feeling like the Flu! I have had the Real Flu Twice in my Life Time before Sarcoid. But I Aways Look at it Like This, I'm Alive.
My heart really goes out to you. I mean, how much can a human withstand? My first symptom was torture like pain above my navel. After trying percocet with great success I became allergic to every opiate and now am even allergic to tylenol which I have taken as recently as 2 months ago with no problem. Not only did the opiates kill the pain but they wouldn't let me fixate on the disease. It's overwhelming sometimes. But,everyone knows that.Good Luck with everything you are dealing with.
Hi, You Also Take Care. I'm So Glad for this Site. When I found this site a Tons of Bricks Came falling Off My Shoulders. And the Tears Came From Long Holding Them In. I felt So Alone Even Tho I have People Who Care, But Truely Dont Understand. Here Everyone Understands, We Might Have Different Aches & Pains or what ever. But We Are Here for Each Other. There have been Times I have Felt Like Giving Up, Then I see Young People on here with Families. And I Think it could be worse, being young with children to take care of. Yes the Pain can Be So Bad, but I wont take any thing. It makes me to Foggy and want to Sleep All the time. Take Care and Happy Halloween :)
Happy All Hallows Eve to you all. Don't forget to change your clocks.
hello D156....just 1 more question about your flu like symptoms. Did you have chills....and did you EVER have a temp? i forgot to mention that I was in the hospital for 3 days about 10 days ago and this flu thing was not there when I was in the hospital.....started about 3 days later. It's the absence
of a fever that it wasn't something I may have picked up at the hospital. And even if I went to my doc he wouldn't know either...so I haven't gone.And,yes,my cat likes Guiness beer.
D156....I'm 56 and retired. I can't imagine if I felt like this that I could go to work everyday. Not to be nosey...but do you work even though you feel sick as a dog? If so,how in the world do you do it?
Hi, Yes I get the Chills even in the Summer. I havent had Fever in a Long Time, But used to keep a Low Grade all the time. I dont work as a Registered Medical Asst anymore, but do Ebay 7 days aweek. It helps Pay Medical Bills, even with Insurance medical bills are Very High. Plus it keeps my mine off this Crap! I have to keep my Mine Busy to Cope. I'm 53 will be 54 in Jan, married for 35 years to a Wonder Man. Today I was in Bed all Day, but tonight I have to Work. I take One Day at a Time, Cant make plans ahead :(
i had chills and general malaise for quite some months at the beginning, but none for years. you may also be lucky and find that these symptoms improve over time.
D156......my girlfriend was here today and I didn't want to leave her alone in the living room even though I just wanted to lie down.Seriously,if this flu like thing goes on forever....I don't know if I could deal with it.I'm playing the waiting game now with it.
If these symtoms really are from the disease and don't go away it would be devasating on top of the constant pain. The thing is....if I went to the doctor how would he know it was from the Sarc? It would probably be a guess on his part. Don't think there is a test for it. Thanks.
By the way cute kitty! Yes I know what you mean. I will lay in bed and think OK today is going to be a good day. Then when I get Up Right there it is. After all this time when I feel bad I excuse myself and go to bed. But it is so hard when I go out, if I'm driving it is all I can do Drive Home. I drink lots of water to help feeling like I'm going to up chuck! Today I have to add two more pills of MTX. Good Thing I have Thick Hair for Now. But if you feel bad, go to bed and dont feel guilty. I have learn to finally think of myself first! Thank Goodness I live on a Lake, it helps me not to mine about being home. Before this crap I worked hard and have two college degrees. Gone all the time and traveled. Now as you know had to change. But keep your mine thinking of other things it has helped me. Just think postive you will get better and keep yourself educated about sarcoid.
The way a Doc can tell if is the Flu or Sarcoid is a Very High Fever and it would go away within 7-10 days. I have/had been Low Grade under 100. But this is how I explain Sarcoid to People. The Book Sarcoid they look cluess and dont want to listen. But maybe I would be the same way if I didnt have it also.
He's such a nice cat. I spent 3 days in the hospital and when I came home he didn't want me to put him down.I told someone who came into the house that he is a baby cougar and he believed me.
When I told a nurse in the hospital I had Sarc she didn't know what it was. My rheumatologist insisted my stomach pain was sero negative arthritis. It took an opthamologist who found iritis in both eyes to send me for a chest x-ray. Two weeks later she called with the bad news....significant case of sarc. I know where I stand on this.You sound like you are at an earlier stage and I'm happy for you if you are. Right now I am defenseless against the pain being allergic to all opiates....even allergic to ultram...but that didn't touch the pain anyway. At times I feel like calling it quits but my girlfriend keeps me going.Glad you have someone to support you too.
D156....This feeling finally got to me today and I'm seeing the doctor tomorrow. I wanted to hang in there but the thought of pneumonia is on my mind. You can have it and have no cough. She asked if I felt congested. I wouldn't know....my lungs feel like they weigh a ton. I wish my printer was working to print your story about this. If he tries to tell me that flu like symptoms aren't a symtom of this...........
How I found about I Had Sarcoid I was feeling like I have the Flu or Food Poisioning it was in Nov 5 years ago. I have had it really in 1990 but they didnt know what was wrong at the time they thought I had Lupus. Then I had a Really Bad Car Accident which crushed my left leg, couldnt walk for 1 year. I have a Steel Rod Knee down to ankle with pins. So I was dealing with that. Then Came the Flu Feeling that was worse with bad stomach pain. PCP Did a Stomach Xray and they happen to catch the bottom of my lung with Nodules. Doc didnt know what it was and said we will wait for 6 months and recheck. Will I have been in the Medical field for 20 years and went on my own to Pulm Doc. Rest is History, it was Sarcoid all this time. No I'm Chronic Sarcoid, My Doc took my case with him last week to a Medical Conference and called me Last Thursday night after he returned. So I'm Really bad at this point and they Reviewed My Case and had agree that he has to be agressive with my case. He said it needs at this point to be treated as if I have Lymphoma. I have Sarcoid everywhere except in the brain, it is in the Lining & glands. Thats why I will be getting the IV Infustion next month and up my MTX & Imuran. I keep getting worse and not sure if the new plan will work. How often do you have PFT, CT's & Chest Xrays? I have them every three months. You really need these checked to make sure it is just sarcoid. You Also Need to be seeing Pulmo, Rhemo, Eye Doc for you Health Care.
Boy you are going through a lot. I don't even know you and I feel terrible what you are going through.....but completely understand the fears that come withis damn thing. I am at a stage that pain medication is the only thing I take....make that...want to take because as I've said I've become allergic to all opiates. They helped me so much it was devastating when I had to stop. I went to the doc today.....he sent me for a chest x-ray looking for pneumonia.....and put me on antibiotics. It's a waiting game now and I don't know what to wish for. One last question about your flu symptoms. Do you feel so bad that it is an effort just to make something to eat? Because right now this has me on my back and I don't want to even move a muscle. I told him that this is the worst I've felt in my entire life. And,yes,I take 3 different kinds of eyedrops.Take care.PS. Forgot to ask him if this could be a sarc symptom....Damn.
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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