Hi again. I haven't posted in a few weeks. I am fairly new here and don't even know if I belong here. I just really need to rattle a bit and hopefully get some feedback. I'll try not to be too long.
I have had fevers of 99.5 to 101 every day for over 400 days now. They do not last 24 hours or anything, but I get them off and on all day. That is my biggest complaint. I also have a high CRP test and some really flu-like symptoms, but not every day. I get pain in my low back sometimes but I have always had neck problems so I don't know what that is related to. And lately I have been having terrible foot pain (like I ran a marathon in bare feet) and achille's tendon and heel pain??
When I first got sick I had an overload of symptoms; fever, headaches, exhaustion really bad, aches, etc. The doc at that time said fibro/cfs. I didn't want to believe that and saw a core synchronist who treated me and said I had a really bad virus. I got a bit better for awhile, but still the fevers. My gp saw me in Nov and when he realized I was still having the fevers, said he thought I did NOT have fibro/cfs but maybe a colon type disorder. Went to gastro and thru several tests and colonoscopy he said maybe irritable bowel syndrome but this doesn't explain your fever or the high CRP test (my last one was 10.7). He sent me to rheumy who I will be seeing for the 1st time on the 16th.
The hardest thing about being undiagnosed is that there is no relief for any symptoms I have. These daily fevers take alot out of me and nothing makes them subside, not fever reducers, rest, nothing. I am a 37 year old mother of 3 (16/14/11) and married to DH for almost 2 years. I work f/t for luckily a very understanding boss, but of course, some of the ppl I work with are not so understanding (you are depressed! Get some anti depressants, etc). I go to work every day even though some days I have tears in my eyes near the end of the day b/c I feel so terrible. I have talked to my boss and will be cutting my hours some (she said whatever I want to do, they don't want to lose me) and I have been fretting all weekend about what the other girls are going to say when they find out, or how I will be treated. I only miss work when I have to go to medical stuff. The last time I missed 2 days, out of town to the gastro and when I got back one girl (she actually had my kids while I was gone) was very nice and how was I feeling, etc and the other one acted mad that I was even gone. I don't expect special attention, I just wish they understood. Sorry for the venting.
Please, I really need to hear from you guys, any pick me ups would be appreciated and also any hints as to what you guys think I could possibly have going on. I am soooooooo tired of being sick....I know you all know.
Thanks in advance,
doxigal
Thanks again,
doxigal
[QUOTE=doxigal]PS- my husband's family (mom, dad, sis and her hubby, etc) are very critical ppl, they have something to say about EVERYone well they think I am just anti social and whatever else. My DH has tried to tell them how sick I have been this past year, by the end of the day have no energy, weekends I try to gear up. They have the attitude that it can't be that b/c I go to work everyday *sigh*
Thanks again,
doxigal
[/QUOTE]
I know that feeling. Without an "official" diagnosis of specific disease, you end up saying things like, "They haven't found out yet what it is, but, the symptoms are..." or "I wish I could explain how I feel, or at least tell you what I have, but..." Seems no matter how you try, some people simply don't take you seriously because you can't name what you have. And, even worse, the more time that passes with no diagnosis, some start assuming it's either in your head, or overly exaggerated for the sake of "milking it."
If you need a bright side to focus on...it's your in-laws, not your husband. I get the "Doubting Thomas" looks and remarks straight from my husband. And, the longer I go undiagnosed, the more vindicated he is acting.
The other bright side seems to be this message board. People here have been through it all too.
I'm sure your husband is thankful you still have the ability to work and understands when it's all you have in you. It's in his hands to relay the explination to them, but, it's in their's to accept and believe him. If they don't believe and trust their own son (brother, ect.), their oppinions of you fall way short of being anything you should waste your energy on.
Nice to meet you! I'm Amy...also new here, and also undiagnosed. Hang in there.
doxigal
So sorry about all your troubles, Doxigal.
You gotta stop worrying about what everyone thinks about you. Easier said than done. Stress is a big factor in any illness. Try to relax until you can get into the dr on the 16th. Take care of yourself, You came to a good place to vent. Alot of people including myself are going through some of the same things as you are.
I hope your get some answers soon and get on the road to feeling better.
CinDee
Welcome Doxigal! This time of being undiagnosed can be very difficult and stressful. We ourselves don't even know what is going on let alone trying to explain it to bosses, family members and friends.
Keep on posting here for support and the 16th will be here soon. I will be praying for you and sending ((((Hugs))))!
I'm glad you have arrived here, both of you. But sorry for the reasons.
doxigal, the constant fevers, especially that high should have been addressed more aggressively before this especially when you had severe symptoms before. When you go into the Rheumatologist ask if there is any way you could have Reactive Arthritis. Do specifically ask about the fevers and list your symptoms and everything that has been tried so far. This will give the doctor something to start with.
Most Rheumy appointments are very thorough. Although there are a few Rheumys that don't get with the program right off. Unfortunately, your diagnosis might still take a while but that is because it is complicated not because you are not sick. That might be want you want to say to others when pressed, "It's complicated. But we are trying everything to narrow down what it is. And, no, it needs medical treatment not an antidepressant. Fevers don't go away with an antidepressant, everyone knows that." It doesn't hurt to even say, "Your attitude is just mean. I really thought you were a better person than that." It puts the emphasis back on them and not your behavior. Say it calm and quiet. It is really hard for people to know what to do then. You're not angry, so they can't really get angry back at you. You have left them hanging with something they need to consider about themselves. It probably boils down more to that if you're sick, then they have to pick up the slack at work and they don't like that. Too bad, poor babies. Work it out with your boss and forget them.
I think your husband is being pretty supportive and your boss. You have to start building your life around these kinds of people. The rest have to become background noise. That is all their opinions are worth.
I really hope that you learn something at your appointment. Just don't let someone brush you off because someothing really is wrong and you are right you have to find out what that is.
Im sorry you are not getting much support from the people in your life. I know how you feel. I have been in pain for yrs and my in laws and sometimes my husband just do not get it. I try not to talk about feeling bad anymore. My kids are great! They help out quite a bit. I am 38 and have 3 girls. I usually talk to my friend who is supportive and come to this sight quite a bit. I feel for you.
You obviuosly have something going on. YOu are not crazy. I used to feel that way too. I hope the rumy can help you. Have you looked into akylosing spondythritis (sp) . There is a board for that too but most everyone comes here. I hope you feel better soon. Do you take any meds?Cherie
Welcome Doxigal! I agree with everything the others have said. Hang in there!
Hi doxigal-Thank you all so much...CinDee, Bonny, Deanna, Cherie, Cathy C, and Dougg. After reading all your posts I have a lump in my throat. It just feels so good to talk with others who are like me in some ways. THANK YOU
After prepping myself all weekend to speak to the gals at work I was home sick today....I think I picked up what my kids had last week, UGH. I feel yucky today
Anyway, I will research some of the hints you guys have given me. I will hang in there and hopefully get a little relief after meeting my doc on the 16th. My DH says we will not stop til we get some answers. I feel very blessed to have him and as Amy pointed out, his belief in my illness.
Thanks again so much to you ALL
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