I feel weird calling my doctors over and over .They dont seem to help anyways.I know you're supposed to be an active member of your own health.But I feel broke down. Ive had a fever of between 99.9 and 102 for the past 14 days.I called they said
"if you have lupus flare up you run high..I have what feels like ulcers in my eyes.I have a rash going down 1 arm and starting on the other.I have what feels like an infection in my lungs from a little cold.My feet ,hands ,ankles ,wrist,toes and knuckles hurt.I have 0% energy and A little 1.I feel so foggy with my memory I forgot my own phone # and address.I know them but at the time I had to look at my ID.I can say it now without thinking..How did I forget it at that moment.I blame it on tiredness.But its really bothering me.I have NO period I havent in 2 months.No I'm not pregnant.I don't know whats happening...
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Julietsmombless2015
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I can't help you because I don't have Lupus apparently but I understand the feeling you have when doctors tell you there's nothing they can do for you - horrible. Just ride out the flare and hope you feel great when you come out the other side.
Just know you are not alone! . I have had lupus for a long time now, more than 13 yrs, but to say the least.... I will never understand it.... But am determined not to let it rule my life. I feel like you so many times, but always take time to reflect on what I can do rather than what I cannot do. I have managed to pace myself. I always ask for support from family when I need it. I had an early menopause at 38 and it's all to do with lupus. I know at times it is hard to understand the symptoms, the pain, the brain fog and it seems our doctors can do so much but are not always helpful! Most times when I call my GP she told me that "by now I should know that lupus is unpredictable and should be able to.deal with a flare up!". It's not fair for us lupies to have the support we need being brushed aside.
I am.not sure how long you have had lupus, but from what I have read I know you are struggling. You will get support from here, as I know you can learn a lot from other lupies!!
I feel exactly the same. When I see my doctor I get oh it's just viral. Or they just look at you and roll there eyes. Because of the lupus I now need a new knee and because I'm only 42 they've said no. For once it would be nice to have someone understand. X
I was officially diagnosed today.My rheumatologist said my numbers are very high and he is surprised .I was walking and not complaining more.He put me on the strongest plaquenil twice a day and said it will help within a few months and to consult with my pcp about better pain medications.He said I deal with pain well.(everyone thinks I do, but I cry alone in the shower or bathroom)I have a daughter 9 months old and god has truly blessed me because today I learned I cannot ever try to have another one.I have to be on this strong plaquenil and you can't be on it being pregnant which is fine. I got my blessing 9 months ago and I dont want anything more from this life than my daughter Juliet I'm very grateful for her.I didn't know my test results would come back that bad but it also makes me feel better.This pain is real I'm not insane losing it or going crazy.He said I probably have it this severely because I'm native American on my Father's side.causians dont usually get it this severely from what he has dealt with his patients.He didn't know I was native American at first sight. I'm light skinned light eyes.But that 25% put me at the greater risk.Oh well life could always be worse I have been awful foggy minded as you mentioned I forgot my address lol...Seriously I had to check my ID while making a doctors appointment.I never mentioned it to the doctor I thought he would think I was crazy.
If you feel as though you may have an infection and you're on immunosuppressants then you do need to tell you doctor. Please get back in contact with them and let them know about this.
Juliets mom you are too funny. Yeah when they get tired please send them to my house. My joints are hurting so badly. Its making me mad as hell. But, I found out that working out can be helpful. Sometimes I feel like if I don't repeat my illnesses i can trick my body into believing i'am well. I just get tired of complaining. Feel better my dear.
I know what it's like to be so run down and fobbed off by Drs that you just want to stop and take to your bed. Ironically the need to rest & pace yourself is important when you're in this state. Unfortunately right now I think it's important that you get some detailed specialist attention which involves major aggravation.
Do you have someone who is big, hairy and assertive who could do some of the leg work and Doctor bothering work for you? A supportive family member, or even a professional medical advocate. (where I come from they come in the form of specialist social workers) I've used them in the past when I've been in similar situations as you.
Try and remember all of this will one day just be a nasty memory and you will get through this.
ps.
If its obvious your Drs are un willing to help you at the moment, get a second or even third opinion.
I've spent a lot of my career as an SLE patient Doctor hopping. Sometimes you have too.
It doesn't mean you have to drop your good Doctor, its more like accumulating a good team of Doctors around you so if your regular Dr. draws a blank, the other Drs can compensate.
I would love to give you a hug, and tell you.....I am listening. The frustration you are feeling never really goes away, I know, I have had S.L.E. for over 20 years now. Most doctors or specialists seem to find it hard to connect with a Lupus patient because many of their symptoms do not show up in blood or urines tests. You have symptoms that are and can be seen by the doctors, so just try to hang in wont you.
The site administrator has given you sound advice, I hope you felt well enough to act on it.....hugs from Auckland New Zealand.
I have had SLE for over 25 yrs, so I know how your feeling so frustrated with all your symptoms. You must see your GP incase you have a chest infection. Infections can set of a flair up, but your temp could be down to the infection, that is if you have one. Secondly I don't know what meds you are on, but if your on steroids then it Might be an idea to increase your dosage, if not on any ring your lupus nurse or ring your Rhumatologist secretary & ask for a steroid injection to help you through it. Thirdly as someone else mentioned that you may be going through an early menopause, I did. If it is the menopause, then some of your symptoms may not be your lupus & you may find HRT beneficial, I can't take it because I had a blood clot in my eye & so I have had to put up with them.
Your memory could be down to lupus brain fog, there is a blog on 'brain fog' on the Lupus UK web site.
I do hope that after you had a good moan & told us about your symptoms that it made you feel a lot better now. I hope that your flair dampens down soon & you start to feel better soon, I'm also in the middle of one because of breaking my wrist, I got blown over by the wind as I tried to close our 6 foot gates, I hope that made you laugh.
I am sorry but I keep nodding off too sleep as I'm writing this & so I will have to sign off, I hope that what I said has been some help to you & so good night»
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Will I get anywhere?
I feel so at a loss and alone. I have been persevering for the past 2 years trying to get the health system to understand.
Brainstorming required
Neuropathic pain pays a visit (and natural remedies come to the rescue).
What does 'mild fever' mean?
