The Lupus Forum banner

1 - 20 of 28 Posts

·
Registered
Joined
·
118 Posts
Discussion Starter · #1 ·
Hi, I just joined here tonight. I have been experiencing pain for years. I have recently broke out with a rash on my face. Then a few weeks later, I had a rash on my face and neck. I have seen a rheumy, he has confirmed that I have fibromyalgia, which has been diagnosed in 2004. He sent me for testing for Lupus,sjorgens,rhematoid arthritis, etc. Everything came back negative except my ANA. That came back positive. I have taken pics of the rashes, I'm waiting to show him them at the next appt. This will be at the end of this month. I also, experience extreme pain in my ankles since the age of 11. I sometimes can't walk beacuse of the pain and my ankles give out. I have gone to several specialists and not one could figure out what the issue is. I am Always tired, always in pain somewhere and extremely frustrated. Any advice? Some of my friends don't get it, and my aunt thinks I'm a hypochondriac. Just looking for any advice and support.
 

·
Registered
Joined
·
15,684 Posts
Hi and :welcome: but sorry for what brings you here :(

It sounds like your Rheumy is at least trying to sort things out and it's good you have taken photos of your rashes. When they are trying to diagnose us it's important they get a full run down of what happens in between appt's and if that includes photographic evidence then all the better.

As far as your pain goes :hugbetter: has your Rheumy at least started you on anti-inflammatories or something else to try and help?

One of the hardest parts (and maybe the best cos who would want to look as bad as we feel :wink2:) is we look ok! To anyone who has not been through this they find it difficult to believe we can be so ill and look fine.............but that's the way it is. If they have trouble accepting that then they need to take a good hard look at why they aren't accepting it. Some people especially family members do not want to acknowledge that something might really be wrong. In the case of your Aunt perhaps it's because she is secretly worried for you.....................or maybe she is just really ignorant and rude :wink2: you would be the best judge of that. People like this can be very toxic for us and if possible it's a good idea to put a bit of distance between you and her whilst you are trying to sort out what is wrong. You don't need this sort of stress on top of everything else :hug:

Stick around, many here can identify with what you are going through, the road to diagnosis is often not an easy one..............nor is living with this disease, but if diagnosed you will be given meds that will help you to feel a lot better. They aren't a magic wand, but things will improve on what they are now and you will also learn to manage your disease a lot better.

Take care,

love
Lily
 

·
Moderator
Joined
·
4,436 Posts
Hiya and welcome, Lily's said it all really but thought I would pop in to say hello.... you can also do a daily diary of symptoms and grade the pain 0-10 (10 being unbearable) so that you can see if there is a pattern at all to it all.. often fatigue makes everything worse for instance... as for the aunt.. take some space for a while from her, it is bad enough feeling so rough, and looking so good without people like her dismissing you.... keep pressing on, at least you have a rheumy onside.. take care and I hope you get some meds to help with the probs... you don't have to have all your bloodwork positive for diagnosis, there is a criteria on here and you need to be positive for 4 out of 11... with or without bloodwork!! Until the next time, when you will hopefully be a step or two closer to managing your body a bit better..XX
Claire
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #4 ·
Thanks for the warm welcome. I am currently on Lyrica for the pain, which is prescribed for Fibromyalgia. I was given Cymbalta, but didn't take it because of the list of side effects. I have been told years ago by another Rhematologist that I may have MS or Lupus. I have had the MRI for my brain, no lesions were shown, which is a good thing. (In ref. to the Lesions). It is a hard road to walk. It's not like I'm looking to have something, but did you ever just want a Validation of what you are feeling and going through. That's how I feel. I will show the Rheumy the pics of the rashes. I also have swollen ankles and wrists. So maybe when I go to my next appt. he will tell me something. He did say that he will send me for more blood tests for Lupus. I guess it's just a waiting game. If anyone wants, I have posted pics in my profile if you want to see. Thanks for all the support, I really needed it.:)
 

·
Administrator
Joined
·
10,184 Posts
Hi Ceenic123,

Welcome to the site.

Sometimes it is difficult to say what a rash is from a photo. If your tests don't show anything conclusive you might want to have a biopsy done by a dermatologist to see if you can get an answer that way.

I understand your point about validation. When I finally got my diagnosis I was thrilled. It wasn't that I wanted Lupus, I just wanted to know what was causing all the misery and get treatment.

Let us know how the tests turn out.

Take care,
Lazylegs
 

·
Registered
Joined
·
15,684 Posts
Hi again,

It is hard to tell much from the rash you photographed but do take it with you to your appt.

Your Rheumy should be able to start you on some kind of anti-inflammatory in addition to the Lyrica, they act in different ways. Many of us at least get some help from anti-inflammatories and it's one of the first meds they put me on prior to diagnosis.

We understand about the validation..............I was kinda overjoyed in a way when they finally called it. As Breanne said, it meant I had a name for why I felt so ill and more importantly I could start on treatment to help.

love
Lily
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #7 ·
I think you are right that I need an anti inflammatory, unfortunately every time i see the dr my ankles are not swollen...Figures...My luck...lol
I also wanted to ask that if my ANA test came back positive and at 1:640, Is that high? It was a Speckled Pattern. I don't know if I wrote that right...lol Just curious.
Looking forward to talking with you all.
 

·
Registered
Joined
·
212 Posts
1:640 is high (but not overly so), at that level I think most rheumy's would say you had something autoimmune going on. I was first referred to out patients as I had been ill for a while last year, and the consultant ran a bunch of tests and my ANA came back at 1:640. He repeated it as I had a chest infection, same value. The consultant told me there was something autoimmune going on and I was referred onto rheumatology. Two consults later the rheumy told me she suspected mild lupus and started the treatment. I was lucky enough to be in full flare mode when I saw her - my skin goes bright red - across my cheeks, neck and chest. I also had on my medical record evidence of shingles type rashes accompanied by fever and pain - told it was shingles, but then bloods and swabs ruled it out.

I think the best thing you can do is like everyone says keep records, I always think rheumys are a bit like medical detectives. Mine certainly seemed to focus in on ruling other conditions out, infection, cancer, MS, rheumatoid (but I now suspect I'm developing this - might need some sort of xray or scan to confirm as my bloods were negative on the RF).
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #9 ·
Thank you all for your support and advice. I will start to keep more records and pics. I will let you know what happens after the next appt. thanks again.:)
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #10 ·
2 positive ANA tests

I just went for a second ANA test and it came back postive. I don't know the titer. Will find out more tomorrow from my Rheumy. I have an appt. with him tomorrow at my request. Can someone have 2 positive ANA tests and it turn out to be negative? Is this a possibility? Does this mean that something Autoimmune is definately going on? I would think so, but then again, I am new to this area of stuff.:rolleyes: I just want to get some advice on how to approach my Rhemy tomorrow. Any advice or comments are appreciated. Thanks so much.:)
 

·
Registered
Joined
·
4,968 Posts
Hi there,

I am not super knowledgeable like some folks on this board however I have always been told that typically if your ANA comes back high it gets repeated. If it comes back high again then they look more at auto immune instead of infection or allergy................but I am not sure this is accurate info.

My ANA is very odd, it will come back high, then lower, then negative and go high again. It is the other abnormal antibodies that gave me my diagnosis along with symptoms and history. My ANA is just unpredictable.

Good luck tomorrow and let us know how it goes.:wink2:
 

·
Administrator
Joined
·
7,566 Posts
Hi, I would have thought that if the titres were high enough, then 2 positive ANA tests combined with your symptoms would be enough for him to start looking at auto immune. He seems to be taking you seriously, so that is a good start.

Show him pictures of your rashes, explain how your joints swell, any pain and anything else or anything it stops you doing. Then ask him what he thinks it might be and how he is planning on treating it.

Also you could ask for copies of your bloodwork so you know what other test were ran and what those levels were.

I wish you all the best for your appt tomorrow, let us know how you get on.

Take care

Deb
 

·
Moderator
Joined
·
4,436 Posts
Hiya again.. just wishing you luck at your appointment.. be brutally frank with them and let them know how it is for you.. hopefully you will be heard.. your documented evidence can only help them... all the best.
Claire X:)
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #14 ·
Frustrated beyond imagination.

I went back to my Rheumy today to discuss the bloodwork and prognosis. When he walked in the room and saw me waiting, he looked at me like I had 3 heads. :eek: I guess he couldn't understand why I was there, since I was just there on Monday. I explained to him that I wanted to discuss my bloodwork and basically where do we go from here, he said that there is nothing else to do. :( My ANA test came back posistve at 1:320. He says that it is positive but lower than last time at 1:640. I then explained that my ankles look like elephant trunks and that I'm in pain and it has been progressing the last couple of months. He said that the pain is from the Fibromyalgia. :mad: I told him that for a person that is overweight (regarding myself) that I have small ankles and wrists and that my wrists are also swollen and that they usually don't look like the way they look right now. He said that well you are a heavy woman and it's fatty tissue. Basically he is saying w/o saying it straight out that I am swollen in my ankles due to my weight. I have explained to him that I have had issues with my ankles since the age of 11. Even when I was SKINNY. I asked then why do my ankles swell...He said he didn't know. I asked him...Who do I see for that...He had NO answer for me. He said that I don't meet ALL the criteria for Lupus but may have symptome leading to it. In one breath he says Not Lupus then in another Maybe You will have it in time....I'm am very upset with the whole ordeal. Then he gives me PLAQUENIL and say that it is given to people with Lupus, but that he won't say that I have Lupus. I'm vey confused and upset. Sorry for the rambling. Any thoughts?
 

·
Registered
Joined
·
1,399 Posts
Hi Ceenic,
You are not alone, many, many of us go through what you have with the Dr. I am still going through it and it is upsetting and frustrating when we get blocked at every turn.
Take heart that you do have something going on, with your titre showing 1/320.
Now you just have to either find another Dr or you just keep going back every few weeks until the Dr has to take notice.
Which is what i'm doing again a week wednesday.
If i was you i would ask for copies of the test results, even if you have to pay for them.
Then you have them in case you see another Dr.
Make a symptom list,
Daily diary of your pain and symptoms even if you think them trivial.
We will, all of us prevail in the end, we just have to keep pushing.
When i go i'm asking if he can test for Sjogrens & raynaulds.
Hugs.
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #16 ·
Thank you so much for the Hugs. As you can see I sooo needed them. I did get copies of ALL bloodwork at no cost.:wink2: I am going to see another Rheumy on Sept. 23. I just want a second opinion. I know that something is definately going on with my body. Just have to figure out ...What exactly. Even my husband said, if the Dr. doesn't believe or feel that I have Lupus, then why give me a medicine used for Lupus.:eek: Just so frustrating.:(
And also had a new symptom happen to me on Friday and yesterday. I get dizzy accompanied by a cold sweat and feel really lightheaded. My sugar is fine and blood pressure has been normal at appts. I know that blood prssure can change at the drop of a hat. Dr. can't expalin what that may be either.
 

·
Registered
Joined
·
1,399 Posts
More hugs Cee,
We all have that need for people to understand, & only us on this site know what each other is going through. Unless they've been there and done that they don't understand.
Keep pushing Hun, chin up we'll get there in the end.
 

·
Administrator
Joined
·
7,566 Posts
Hi, appts can be frustrating. Most docs don't like to hand out a lupus diagnosis straight away. It can have implications for insurance etc. Plaquenil is not a fibro treatment it is a first line treatment for lupus. He obviously believed you and believed you had something auto immune going on. Sometimes if they are hesitant to give a lupus diagnosis they will give you plaquenil to see if it helps.

Was he willing to give you a diagnosis of UCTD? Are you going to take the plaquenil? It can take a while to kick in, I have found it to be a help with the fatigue. Whatever our label it is treatment that is the most important. He is willing to treat you. However you do need to have a good relationship with your doc and it doesn't seem as though you do.

Maybe you will get on better with your other rheumy.

Take care

DEb
 

·
Registered
Joined
·
4,968 Posts
I am so happy that your going to another doctor for another opinion. I would not waste any more time with this last joker you saw.

A good doctor listens and really hears what your saying. They look at family history, symptoms, blood work, etc...to come up with a diagnosis. They do not just place everything in the blood work.

Please let us know how your up coming appointment goes and I wish you luck moving ahead.:wink2::wink2::wink2:
 

·
Registered
Joined
·
118 Posts
Discussion Starter · #20 ·
He does not want to diagnose me with anything other than Fibromyalgia at this time. I am contemplating taking Plaquenil due to the list of side effects. I have young children including a child with Autism, so I need to be careful with the meds I take. Hopefully the new Rheumy will not disregard me or my complaints. Thanks ladies for the support. I really appreciate it.:)
 
1 - 20 of 28 Posts
Top