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danny316

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Hi everyone! My name is Danielle and I am 22 years old. I am new to this site but I am not new to pain , exhaustion , ager, confusion and so many of the other feelings that come with illness and working with doctors.
Even though lupus is always the first thing that doctors think I have, it not the diagnosis that I am given. My rheumatologist told me that I have a " right now" diagnosis of fibromyalgia In one way is good because lupus is life threatening and then its bad because I'm again at a standstill with everything and I can still develop into it, at least that is what a test result indicates. I feel like I am going around in circles. I think what I am looking for in this site is to hopefully learn as much as I can about this disease, and what better way then to actually communicate with the people who experience it everyday and to read what you guy/girls have to say about your own disease. I do not want to be sick and I do not want pity. All I want is to be able to rest my mind on knowing what is making me sick. I am starting to feel hopeless with ever finding out. I have no one to communicate with who can understand what I go through everyday. I'm not even sure which site I should really be on ,this one or a lupus site. Either way I am completely lost with all of this. I feel like I am being spun around really fast and then told to walk straight. I know there are so many people who go through the same thing. It is a really suffocating feeling to not have an exact diagnosis yet feel horrible all the time. I don't understand fibromyalgia but I know its real- if that's what I have or not. Is lupus and fibromyalgia often confused like this? Has this happened with anyone else? Or was your diagnosis made right away?
 

cmetryme

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danny316, first a big hug to you for having the courage to come and learn about what you have. there is a lot of good information on this site to help you learn. look at my two posts starting a daily log book and what is fibromyalgia. good starting points.

I have lupus and then i was diagnosed with fibro after the lupus. they are both very painful. they have some of the same symptoms.
sometimes its hard to decide if im having a fibro flare or a lupus flare or both. my lupus burns my skin and the nerves from the fibro are rubbing the back of my skin causing it to burn as well. they often try to rule out lupus before making a fibro diagnosis. im here for you and your at the right forum.
you can always ask me questions about both. i went to a lupus forum and i got no responses to my post.
learn what you can and pass it on to us here. please friend me so we can chat more.
 

danny316

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Hi cmetryme. Thank you for responding to me. I appreciate it. I am sorry that you have both illness. How long did it take to get a lupus diagnosis? Was it based on a lot of positive blood tests? I read all over the internet that lupus can take 5 or more years to get diagnosed. I've also read that the test results can change too. I get rashes on my face that resemble sun burn and it burns. I seem to get it when I'm outside or in class for while. Unfortunately my doctors don't have anything to say about it. I think I will start taking pictures of it to show them.
That's what my doctor did with me then? ruled it out, I'm guessing. Based on my c3 and c4 tests, my rheumatologist said that it suggests I may progress into an auto immune disease. So I guess I'm just waiting now... Do you ever feel like your doctors don't listen to you? I feel like that a lot.
 

cmetryme

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How long did it take to get a lupus diagnosis? Was it based on a lot of positive blood tests? :


Danny, thanks for befriending me. it definitely sounds like lupus to me. be strong it may not be in a life threatening organ. mine is in the biggest organ in the body. the skin.

You said these things below:

I get rashes on my face that resemble sun burn and it burns. I seem to get it when I'm outside or in class for while.:

The rashes and burn are very much part of the Lupus. stay covered up when you go outside. the sun is flaring the lupus. they have clothes made for UV protection. i ware them. i get them at academy sports and outdoors. most clothes only have 2-3% uv protection. the Florescent lighting in the school is your enemy. wear a hat at all times and the clothes. wear a button up shirt from academy when in class. yes, i know its hot.

I think I will start taking pictures of it to show them:

That's a great idea. the rash should look like a butterfly. mine is on my back some times it doesnt look like a butterfly. it does move to where ever i get a pimple,cut,blister and any bruise. puffy red burning sensitive to touch rash. very painful at times.

That's what my doctor did with me then? ruled it out:

your doctor cant just look at it and say it's not lupus.(per my allergist) they had to take a Biopsy from the rash and send it off for testing. the blood work is iffy when it comes to lupus. see if keeping covered helps. there is only two meds for lupus. im allergic to both meds so i can only do what im telling you and suffer with the pain. the only treatment left for me with the lupus is powerful pain meds. im on the any dose can kill me meds. thanks to my outstanding pain mgt doctor. i wish you all could use her.

Do you ever feel like your doctors don't listen to you? I feel like that a lot:

i used to feel just like that. because to them im just making this up as i go along or to a visit. see my post on starting a daily log book and start it right way. please note the part about the doctors and the 200 patients. also see my post on what is fibromyalgia. you need to learn what is lupus and what is fibro.
you have a friend here now. please if i can help you in any way letme know.
 

Northernelf

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DX FIBRO
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When I read your original post I thought - I coulda wrote that !

I have been trying to figure out for almost 5 years why I hurt so much! Last September I painted my living room - my energy wasn't too bad & I took frequent breaks but since then I have been a mess - always tired, more sore, and muscle sore - before that it was just my joints.

Anyway - I have had a ton of blood work over the last few years and one I had a positive ANA but that's not that uncommon. My other blood work is negative for lupus. I also had a couple of kidney retests because my levels suggested acute kidney failure (that could be a lupus thing). My GP was sure that's what it was but I just saw a rheumie and she says fibro.

It is better for it to be fibro than lupus - less damaging but still bloody painful & tiring ! In fact, the symptoms are pretty similar but fibro isn't damaging to organs, etc. I will say that at this point I am not totally convinced that is all that is going on because I react to sunlight - but not with rashes, I get intense tingling up & down my arms & legs. It is definitely sunlight, not heat (steam roo doesn't do it). Nerve issues are fibro, sunlight issues are more Lupus....though again, more so rashes. Either way, I still have the symptoms I have.

Reluctantly, I just started an antidepressant (worred about side effects). My doc says it will decrease my pain and they are commonly prescribed in fibro because they seem to help. I also have something to help me sleep - I can sleep well for 3-4 hours and then I wake up. I exercise regularly, eat well, and rest lots...cut back my work schedule. Coping mechanisms I guess.

Good luck...it's a journey !
 

cmetryme

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northernelf, thanks for replying.
The sun light burns my skin where i don't have a rash as well. see what happens when you are under a florescent light.
see if it burns you like a sun burn. im sorry that you have to do this. the ana test don't tell anything. better to start lupus meds than do nothing at all.
if they help you and give you a better quality of life keep taking them. if not you can always stop taking them.

get answers from your doctors and a treatment plan. if you think its lupus, at least try something to help. your in control of your treatment.
one doc says no and the other says yes. at that point its up to you to decide.

i hope you find help soon.
 

danny316

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northernelf, I can relate. When I first started getting symptoms it was achy knees and I was tired a lot. Now I have the rashes, hair loss & hair that breaks off, I have Raynaud's phenomenon, muscle tightness & pain, pain in all my joints with some serious stiffness and burning, my knees swell now ( or at least they look and feel that way). I have sharp chest pain and burning as well, which is new. My feet swell. I am very very tired. I also have to see a cardiologist. I could just go on.. its ridiculous.
The only test that came back for me was the c3 and c4. I guess some of these tests can come back positive for healthy people. I just don't understand all of this stuff right now. You can read things all over the internet and it gets overwhelming sometimes.
I refuse to take an antidepressant. I am so scare of them to be honest. Is it working for you at all? Have you been feeling any better? I don't see how they would work though...
Ah good old sleep.. I have always had issues sleeping. It's like sleep wants nothing to do with me. The sleepless nights just add to everything else that's going on. It's one thing on top of another with no straight answers that really make sense.
I really hope that your kidneys are okay! But fibromyalgia seems to be thrown around a lot. If the doctor doesn't know then BAM! "yall have Mr. Mysterious Fibromyalgia that no one knows much about!"
Everyone needs to find ways to aid themselves. I hope that you have found something that helps you. I am finding out that, yes , this really is a journey. My joint pain started at 18 years old and has only gotten worse. The list of doctors keep growing. Hopefully one day figuring this stuff out wont have to be so difficult! Dealing with it is bad enough!
Thank you though. I'll take all the luck I can get!
 

danny316

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Cmetryme,Yes! exactly. The rash is butterfly shaped. I just wish my doctors would take it more seriously.
I need to press the issue.
That's really terrible. I'm sorry you have to suffer. This autoimmune and fibro stuff is so unfair for people. Aren't the lupus medications steroids? Are you seeing a dermatologist ?
I have not had a change to read your other posts that you told me about, but I have not forgotten!
Thank you. I appreciate it. You have a friend in me as well!
 

cmetryme

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Good morning, i hope today is a little better for you. please find the time to read the start a daily log book. you need to find your triggers and avoid them or these pains will continue to flare. it will help you with the doctor and your meds.
you said:
Aren't the lupus medications steroids? Are you seeing a dermatologist ?

no they are not steroids. i was sent to a allergist by my cardiologist that i showed the rash to. he said its lupus go see a allergist and thats when i was told you cant look at it and say its lupus. it must be biopsied. well it tested lupus no doubt.

i have seen 5-6 dermatologists in my life time. all just told me it was a skin rash and had me use tropical cream that only dulled the redness. then it would just come back as a flare and be bright red again. they had no idea what to do.
if you dont need a referral, then go see a lupus doctor and save the trip to the GP. do a web search on specialist on lupus. will be a derm doctor. see the doctor not the PA. set the appointment with the doctor.

you are in control of your treatment. have a nice day and big hugs.
 

Lyndsey

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Dec 18, 2014
Messages
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DX FIBRO
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04/2014
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Hi Danny316,

wow after reading your post I feel like I wrote that! It is almost identical to my situation. All doctors including my rheumatologist have suggested that I have lupus, then one day my doctor diagnosed me with fibro and said that lupus is difficult to diagnose. I feel really frustrated by this as well. I just want to know definitively what it is. It is unsettling not to know. Ive also been told that I have insipient lupus which as far as I am aware means it is in the early stages, although I am still very confused. I also have chronic migraines and about 20 brain lesions, which is also unclear as to what is causing that. This is for sure the site to come to. So many supportive awesome people on here to talk to. It really helps me when I am feeling down.

Hope that you are ok tonight, and prayers and thoughts going out to you.

Lynds
 
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