[shayla]

Hi everyone. I am 38 and have been "sick" for just over 8 years. I'm so sick and tired of being sick and tired! When it all first started, everything seemed to come on very fast. I had been achey for a while, but nothing too horrible. But, I got a sunburn (not a horrible one, just mild), and life as I knew it was over. The day after I got the sunburn, I woke up with horrible muscle and joint pain. It felt like shards of glass jabbing me in my achilles tendons with each step. I also had a purplish rash on my legs. I went to my family doc who was very concerned at the time. He suspected lupus instantly. He ran several tests which came back normal with the exception of my urine sample which showed "macro" something-or-other. He referred me to a rheumi. The rheumi did nothing except move my arms and legs around. He said the report from my GP said all my tests were normal, including the urine sample. I tried to tell him that it wasn't, but I've found that docs don't listen unless it's in front of them in black and white
He sent me to a neurologist because I was having muscle cramps. The neuro thought it was MS, but I had a lumbar puncture to rule that out. That "flare" lasted about 3 months. Since then, I have had flares on and off consisting of muscle pain, joint pain, and muscle spasms. If I overdo it even just a little bit, I get muscle cramps. I'm constantly tired and need more sleep than I used to. My hands, knees, elbows, shoulders, and ankles hurt most of the time. Sometimes much worse than other times, but they hurt to some degree most of the time.
It's frustrating not being able to do things like other people. For instance, I tried to crochet yesterday. Today the largest joint in my left forefinger is killing me. If I walk too much, my ankles give me fits for days. I hate to complain so much, but I'm just really tired of feeling bad most of the time. I also run a low grade fever constantly now (that has been going on for about 6 months now). My glands in my neck sometimes swell up and my groin glands have been swollen for about 8 months now. My doctor said he would "keep an eye on them", but he doesn't seem to have a clue as to what is going on. My white count was high a few months back, but after a round of antibiotics, it went back to normal.
My ANA has always been negative. Is it possible to have Lupus with a negative ana? Or is this probably something totally different? I have had the RA bloodwork too, which is also always negative. Lately though, I have had a few joints swell up and turn red, which never happened in the past. (one in my thumb and two in my toes)
Does any of this sound familiar to anyone here? For those that read all the way through this, bless your hearts for having the patience! LOL More than anything, I think I sometimes just need a place to vent. Not having a diagnosis can be so frustrating at times! People just don't seem to understand, doctors included!

 

[sam101360]

Hi And welcome!

You have found a place where people like us come for support and help! Everyone is wonderful and we have a great chat room where you "talk" to members.

All that aside, I am sorry that you are having such a rough go of things. I am not a Dr and cannot tell you if you have lupus, however there is definately something going on!

I am a serum negative Lupus sufferer, meaning my bloods usually come back normal, some of the obscurer testing Lupus sepcialists do (Compliments and CPK) come back wacky occasionally but not all the time.

I was DX from a biopsy of a rash, and then my symptoms got worse. What you are going through does sound familiar.

I would make two suggestions, (1) get a new rhumy, one that specializes in Lupus if you can do that with your insurance. (2) see a dermotologist about the rash and request a biopsy of it if possible. Both of these options may help you on your road to proper diagnosis of whatever is going on.

In the mean time, feel free to come here and ask questions, join in chat and gather information that may help you.

Stay well, and good luck - Stephanie

 

[shayla]

Thank you for your reply! It's so nice to have found a place where others can relate to what I'm going through! I haven't seen a rheumi since this all first started 8 yrs ago. Sounds like that is what I should do at this point. (I saw a couple of neurologists because the 1st rheumi thought it was a neuro thing) I haven't seen anyone except for my general doc in the past few years. He says he knows something is wrong, but just doesn't know what, and isn't sure if he should send me to another neuro or to a rheumi. He said that sometimes these types of problems take time showing up in bloodwork and to just "be patient". But, after 8 yrs, my patience has ran out! LOL I think it's time that I see another rheumi and see if maybe they can get to the bottom of all of this.
I don't know what "compliments" or CPK is so I don't think I've had those tests ran before. I was under the understanding that the ANA was the only test for Lupus. Definitely sounds like I need a different doc! Thanks again for your reply.

 

[Katharine]

Hello Shayla and welcome

I would agree that it is high time you saw a rheumy again. 8 years is a very long time.

It is possible to have ANA negative lupus but it is also pretty rare (around 2-5%). I am one of those, like Stephanie.

ANA is not the "only" lupus test but is the first "screening" test done for auto-immune diseases. Diagnosis is based on a mix of blood tests and clinical symptoms. The trouble with lupus is that it is highly complex and diagnosis is not always easy, that's why you need to find a rheumy that specialises in auto-immune disorders, not all of them do.

I can quite understand your patience running out - I too waited eight years before the beginnings of a diagnosis and it is a long time to know that things are not right and be getting no answers.

bye for now,
Katharine

 

[doris999]

Hi Shayla,
Welcome, I am still waiting test results & i am very frustrated with it all. & still waiting for A Dr appt as well.
I have been waiting 5 years for a diagnosis, & 10 years living with discoid lupus.
I totally agree you must get another Rhuemie appt, and as said before it can take time to sort out whats going on.
Hugs
Sandra.

 

[onetay]

It seems yet again someone that thought they were alone and yet are not. Being tired of being tired and sick of being sick runs throughout the site. It might be that you want to do everything you did before and push yourself to do them. You have to rethink what you can do and put that as your limit. That will make things easier to adjust to. You are not setting yourself up to disappoint yourself for not doing what you thought you should be doing.

It will take time and a lot of adjustments day to day to handle lupus but you can do it. I hope that you are well and doing well.

 

[pamela b]

Understand sorry

Dear Shayla

I am so sorry that you feel so ill and as well I bet frustrated.
Someone said to me this year " I know you dont feel you can but you have to fight as it is your health "
It has been a very hard road for me but not as hard as a lot.
I did see a rheumy for the first time Friday who Dx Lupus and Sjorens straight away and said he is now going to run the tests so he has a base line to work from.
He said to be " ANA( I think i was in shock) is the one 98% of Lupus patients are postive for, but that also means 2% are negative, it means they have Lupus but are not YET or not AT THAT TIME showing a positive ANA< in time they will and it is my job to make sure that they are kept as well as possible "
So new as I am to all this that is what he said
I think you need to ask for a referal to another Rheumy and maybe even then to get a 2nd opinion if you are not happy.
We had decided that if required we were going to the Lupus clinic in London privately for help, if they said it wasnt I would have trusted them We had made up our minds if we needed to we would borrow money to reolve my health problems as
Without health you are not living your life

Please be aware that my thoughts are with you and I do hope that very soon someone does find out what is wrong and makes life easier for you
The people on here ( I only joined a couple of weeks ago ) have helped me so much and I only wish I had found them sooner
Pam

 

[shayla]

Thank you all so much for your replies! You are all right, I need to see another rheumi. I intend to call my general doc today and ask for a referral.
As for expecting to do what I used to, it's not really that I expect to be able to...I figured out a long time ago that my body just won't cooperate with me anymore. I guess it's just more that I WANT to. I want to do the things that other people do without experiencing the fatigue and/or the pain. I know I'm whining, and that all of you here have had to adapt. I know I need to accept it and move on, and for the most part, I do that. But once in a while, it does get to me and I have to have a few moments of feeling sorry for myself :blush: I have some other health problems besides for this (neurocardiogenic syndrome which I have a pacemaker for, and type 1 diabetes). Neither of those problems give me near the trouble that this muscle/joint problem gives me!
I live in a two story house but I'm scared to go up the stairs very often. I have fallen several times because my balance just isn't very good. My husband kids me and says that he hopes I am never stopped and asked to do a sobriety test because I can't walk a straight line :hehe: When I walk down the hall, I have finally figured out that I have to walk with at least one hand touching one wall, otherwise, I'm all over the place. I am constantly running into door facings, I just can't seem to clear them. Others just think I'm clumsy, but I know it's something more than that.
Ok, I'm through whining. Thank you all so much for allowing me to get it out of my system! LOL :blush: Time to move forward and figure this thing out! It sounds unlikely that it is Lupus given the percentages with the negative ANA, but it must be something and it's high time I find someone to figure it out! (out of whiner mood and into fight mode 8) )-Shayla

 

[lazylegs]

Hi Shayla,

You definitely need to pursue what is causing this balance issue before you end up with any broken body parts. I would ask for a referral to both a rheumy and a neurologist. Also I would push for an MRI. I know your lumbar puncture was negative but an MRI might shine some light on the situation.

Take care,
Lazylegs

 

[shayla]

Thanks for the reply lazylegs. I can't have an MRI because I have a pacemaker. I had a CT scan when the first flare hit just over 8 years ago. It was normal, but the neurologist that ordered it said he expected it to be because CTs don't usually show things as good as MRIs do (he was the one that thought I had MS until he ran the lumbar puncture).
I should have clarified myself a bit better in my original post. Although I haven't seen a rheumatologist since the one time 8 yrs ago, I have seen a couple of neurologists. The one that ran the lumbar pucture refused to see me after the test came back negative. (even though my family doc said I needed to go back to him because of the spasticity in my legs).
After that, I saw another neurologist....and he is no doubt the reason that I haven't seen another! He was such a jerk! He didn't touch me...didn't even check my reflexes! He just stood and listened to me explain everything I had been through, then said that I probably didn't need the pacemaker or the insulin for diabetes?!?! My husband and I both just stared at him like idiots. I have never been more insulted in my life! He clearly thought I was a nut case! But seriously, hello?!?! Docs don't just hand out pacemakers and insulin! LOL And if I didn't NEED the insulin, I'm pretty sure I would be dead by now from taking it! (I have type 1 diabetes, came on suddenly, proven by a normal HbA1c at the time of diagnosis, which is extremely rare and we were just lucky to catch it in the beginning like that! It proves it is autoimmune diabetes) Anyway, then the jerk said that he was sure I would feel better if I just took some antidepressants I left there in tears and I've been doctor shy ever since. No one deserves to be treated that way!
I was also treated that way by an infectious disease doc too. My general doc sent me to him because I tested "low positive" for rocky mountain spotted fever. (they both agreed that it was just a fluke thing and didn't end up meaning anything, just a false-positive) But the infectious disease doc had the same attitude as the neuro. He actually said, "The next time your muscles spasm, try changing positions"....ummm, ok...like I hadn't thought of that one already? LOL
My general physician has been great through all of this though. He says he knows there is something wrong, he just doesn't know what it is and isn't sure where to send me. He said the other docs would know too if they just knew me like he does. But he doesn't truly understand either. A few months ago I went to see him and he asked me, "So this affects your life style?"...ummm, YES! How could he not know that by now?!?! Costrochronditis several times in the past few years, flares of muscle and joint pain and spasms and cramps, balance issues, and all of the other stuff...how could it not affect my life? So I guess all of that is why I have put off making an appointment with another rheumatologist. It seems they just all decide I'm nuts after the first few tests come back normal and they stop there instead of running more tests. It seems ridiculous to keep putting myself through that, paying doctors to treat me like I'm a hypochondriac and/or a mental case. But I know that I'm not going to get a diagnosis unless I go to another doc, so I guess it's time to suck it up and go back. I just hope the next one doesn't treat me like that! 8 years ago it took me off guard and I didn't know how to respond, but now, after 8 years of dealing with pain and everything else, I think I just might be able to think of a few things to say if the next doc treats me like that!

 

[doris999]

Hi Shayla,
I to have found a couple of Dr's treated me in a similar way, may be not as bad as you maybe, but i still felt i was being ignored.
After seeing "my Jerk" the last time, he told me you don't have SLE, i don't know whats wrong with you but there is something wrong with your immune systeme, and then do nothing about it, HELLO. I then got copies of the tests he had done, & they clearly show that something is wrong.
So i've been there & brought the tee shirt. Just keep pushing, i'm we will all get there in the end. It may take years but we will.
Sandra.

 

[lazylegs]

How did that guy even get a license to practice? I definitely understand why you wouldn't want to see another neuro. Since that is the case you should be referred to a rheumy having a backround with Lupus.

Good luck,
Lazylegs

 

[shayla]

Doris, I'm sorry you have been treated similar. I can't believe that we can walk in to a doctor, looking for help, and get treated like that! I think a lot of it has to do with their egos...if they can't figure it out in a few minutes, then they think, gee...if I can't figure this out, then she must be crazy or a hypochondriac or something. Ugh! I think that doc I saw needed to prescribe himself some pills! LOL Oh wait...maybe he already did and that's why he acted that way!:rotfl:
Lazylegs, I have wondered that same thing! When I told my cardiologist about it he was fuming! LOL I think he might have even been more upset about it than I was! LOL I flat lined on a tilt table test two different times before I got the pacemaker...I had 26 second pauses in my heart rate...ummm, yeah..I definitely need it! I get a little satisfaction in knowing I never paid that jerk a dime! LOL And as far as needing antidepressants, shoot...looking back, I probably should have taken them! Of course I was depressed, I was sick and in a lot of pain! It IS depressing to be sick and not have any answers and be in pain so often!
Hopefully I will find a good doc this time. If not, I have no qualms about walking out in the middle of an appointment! No one is going to treat me like that again, I don't care who they are!

 

[doris999]

Hi Shayla,
We could all go down a road that leads no where could'nt we, we choose not to.
I myself could drink a **** of a lot to kill the pain but i don't, this thing called lupus has'nt drag me down that far, YET.
But if i don't get a diagnosis, that could be a long road to travel down. I hope i never go there, but it could so easily happen to anyone of us, or maybe happening.

I just can't get over the fact with "my jerk" is that knows there is something wrong, but chooses not to find out what is wrong and leaves me to fend for myself.
Don't they take an oath to help people!!!!!
Best of luck Hun, on your journey, keep us posted on how you sre getting a long, as i will.
Gentle hugs & spoons
Sandra.

 

[shayla]

Sandra, Your jerk sounds like my family doc...he has told me on more than one occasion that he knows something is wrong, he just doesn't know what...so he runs the same bloodwork over and over and just tells me to wait. Nope, not anymore, I'm sick of waiting! Lupus might not be the answer, but there is something going on and if he doesn't know what it is, fine, I'll find someone that is interested in trying to figure it out.
I've often had the same thoughts about the oath. You can bet if it were them going through this, or one of their family members, they would be doing everything in their power to figure out what was wrong so they could get help! They wouldn't just "wait and see" for years! But I know that there has to be good doctors out there! I just have to find one. I'll keep you posted on how everything is going, and you do the same. Maybe if we all stick together through all of this, we'll eventually get through it

 

[doris999]

I know we will get the answers were looking for, even if it takes me years, HA, HA already has.
As a friend said to me recently " the light has gone out of your eyes ". And that says it all to me, i am a shadow of my former self and i hate it.

 

[mississippi girl]

It took me changing drs to find out what was wrong. My old crazy dr said the same thing something was wrong but she just kept testing my thyroid and blood sugar never even considered lupus so I changed drs and that was the first test he ran on me and sure enough it was possitive. If I had not changed docs I feel confident I would still be undiagnosed and not getting treatment. I understand what you are going through just hold your head up the best you can. Think positive it will all work out in the end.